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Users should always cite the published version of record.EnquiriesFor any further enquiries regarding the licence status of this document, please contact: researchsupport@kent.ac.ukIf you believe this document infringes copyright then please contact the KAR admin team with the take-down information provided at http://kar.kent.ac.uk/contact.htmlCitation for published versionMilton, Damian (2016) Educational discourse and the autistic student: a study using Q-sort methodology. Doctor of Philosophy (PhD) thesis, University of Birmingham.DOILink to record in KARhttp://kar.kent.ac.uk/62672/Document VersionAuthor's Accepted ManuscriptEducational discourse and the autistic student: a study using Q-sort methodology by Damian Elgin Maclean Milton A thesis submitted to the University of Birmingham for the degree of Doctor of Philosophy. Reference Number: ERN 13-0875 Autism Centre for Education and Research School of Education College of Social Sciences University of Birmingham September 2015 University of Birmingham Research Archive e-theses repository This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation. Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder. Abstract With some notable exceptions (e.g. Jones et al., 2012), current guidance regarding best practice for the education of children on the autism spectrum often reflects a medical / behavioural model approach that seeks to remediate perceived deficits (Cumine et al., 1998; Hanbury, 2005; Hewitt, 2005; Worth, 2005; Hagland and Webb, 2009). Such advice can be contrasted with that given by autistic writers (Sainsbury, 2000; Lawson, 2010) often situating itself within a social model of disability. This study utilised Q-sort methodology (n = 60), followed by qualitative interviews (n = 6) to investigate the ideology and priorities of differing stakeholders, including autistic adults, parents of autistic children, practitioners and academics working in the field, and those occupying multiple positions, regarding the education of autistic pupils of secondary-school age. Eight factors were extracted through the PoetQ application for analysis. Two of these factors were dominant within the data-set. One represented a critical radical pedagogy frequently favoured by autistic adults, the other an approach akin to a Positive Behavioural Support (PBS) model often preferred by non-autistic parents. Practitioners and academics were found to hold a less-defined eclectic approach between these two main factors. The thesis concludes with a reflection regarding this ‘three-way dispositional problem’ and offers a number of recommendations for future research and practice. For Nye Acknowledgements The journey to completing this thesis could be said to have started long ago, and so I would like to thank those who have helped to support my academic progress through various courses undertaken in the past, in particular Tony Walter, Mark Neal, Christie Davies, Mavis Cracknell and Robert Fletcher. I would also like to thank all of the academic and autism-related organisations and colleagues that I have worked with, including: The University of Reading, Goldsmiths’ College, The University of Kent, London South Bank University, the Autscape community, Ambitious about Autism, The Autism Education Trust and related partners, Research Autism, and the National Autistic Society. Thanks also to my colleagues from the Theorising Autism Project: Susy Ridout, Lyte Moon, Dinah Murray and Larry Arnold, and from the Justice for LB campaign, especially Sara Ryan and George Julian for their continuing support and inspiration. Special mention needs to go to my supervisors for this thesis, initially Mitzi Waltz for introducing me to the field without letting me become lost in it, and to Kerstin Wittemeyer and Glenys Jones for seeing me through to the end of this part of my academic journey. Final thanks need to be given to my family for helping to keep me on my path. List of Acronyms ABA – Applied Behavioural Analysis AET – Autism Education Trust APA – American Psychological Association ARGH – Autistic Rights Group Highlands ASAN – Autistic Self-Advocacy Network ASD / ASC – Autism Spectrum Disorder / Autism Spectrum condition DSM – Diagnostic and Statistical Manual of Mental Disorders ICD – International Classifications of Disease IEP – Individual Education Plan II – Intensive Interaction LB – ‘Laughing Boy’ (Connor Sparrowhawk) LSA – Learning Support Assistant NAS – National Autistic Society NCSE – National Council for Special Education (Ireland) N/K – Not known NT – Neurotypical PBS – Positive Behavioural Support PCT – Personal Construct Theory PECS – Picture Exchange Communication System PNT – Predominant Neurotype RDI – Relationship Development Intervention SCERTS – Social Communication, Emotional Regulation and Transactional Support SSt – Social Stories TEACCH – Treatment and Education of Autistic and related Communication Handicapped Children WHO – World Health Organisation Contents Chapter 1: Introduction 1.1 Use of terminology 1.2 Competing narratives regarding the education of autistic children 1.3 Outline of thesis 1.4 Thesis structure Chapter 2: Literature Review 2.1 Introduction 2.2 Literature regarding the construction of ‘autism’ as a concept 2.3 Literature regarding the autistic ‘voice’ (including autobiographical accounts) 2.4 Literature concerning educational theory and practice regarding autistic people 2.5 Literature regarding emancipatory and participatory research 2.6 Summary of Literature review Chapter 3: Methodology 3.1 Introduction 3.2 Pilot survey 3.3 Pilot interviews 3.4 Pilot action research project 3.5 Discussion of initial pilot studies 3.6 Introduction to Q-sort methodology 3.7 Piloting the Q-sort method 1 1 1 8 9 11 11 12 25 35 54 57 60 60 64 64 65 66 68 72 3.8 Findings from initial pilot study 3.9 Epistemological concerns 3.10 Design 3.11 Samples and Sampling 3.12 Participants 3.13 Procedure 3.14 Data analysis techniques employed 3.15 Ethical issues 3.16 Researcher positionality and ‘potential bias’ Chapter 4: Findings 4.1 Introduction 4.2 General findings 4.3 Overall findings from Q-sort factor analysis 4.4 Findings regarding factor 1 4.5 Findings regarding factor 2 4.6 Findings regarding factor 3 4.7 Findings regarding factor 4 4.8 Findings regarding factor 5 4.9 Findings regarding factor 6 4.10 Findings regarding factor 7 4.11 Findings regarding factor 8 4.12 Comparisons between factors one and two 4.13 Level of consensus between factors 4.14 Q-sort findings by stakeholder grouping 76 81 82 85 86 89 90 93 96 98 98 100 112 114 123 130 133 136 138 141 144 146 149 169 4.15 Z-scores by factor and a priori category 4.16 Analysis of follow-up question responses Chapter 5: Meta-analysis 5.1 Introduction 5.2 A summary comparison of factors extracted 5.3 The three-way dispositional problem 5.4 A common ground? Chapter 6: Discussion 6.1 Introduction 6.2 A reflection regarding positionality and bias 6.3 ‘Becoming indistinguishable from their peers’ and the ABA debate 6.4 Environmental effects on the ability an autistic child has to learn 6.5 Presenting the views of differing dispositions in a respectful way 6.6 Listening to autistic voices and implementing recommendations and lessons learnt from such views in practice 6.7 Practitioner views and practitioner guidance materials 6.8 Parental engagement 6.9 Providing practical means by which differing stakeholders can explore their educational priorities in a respectful way 6.10 Methodological discussion Chapter 7: Conclusions and implications 7.1 Introduction 7.2 Theoretical and practical conclusions and implications 7.3 Methodological conclusions and implications 7.4 Recommendations for future research 177 189 199 199 200 221 226 230 230 233 238 246 249 255 262 265 268 270 274 274 275 284 286 7.5 Breaking through the ‘glass sub-heading’ References Appendices Appendix A1: Ethical clearance for thesis Appendix A2: Q-sort score chart Appendix A3: Instructions given to participants for Q-sort pilot studies Appendix A4: PoetQ introductory text Appendix A5: Statement list (or ‘Q-set’) Appendix A6: Written notes of participants from Q-sort pilot study 1 Appendix A7: Follow-up interview questions Appendix A8: Recruitment letter Appendix A9: PoetQ Qualitative questions Appendix A10: Sample Q-sort distribution Appendix A11: Z-score correlations for factor 1 Appendix A12: Z-score correlations for factor 2 Appendix A13: Z-score correlations for factor 3 Appendix A14: Z-score correlations for factor 4 Appendix A15: Z-score correlations for factor 5 Appendix A16: Z-score correlations for factor 6 Appendix A17: Z-score correlations for factor 7 Appendix A18: Z-score correlations for factor 8 Appendix A19: Statement scores – all participants Appendix A20: Q-sort for participant P1 Appendix A21: Factor correlation scores by individual Q-sort 288 291 307 308 326 327 329 331 334 335 336 337 338 340 341 342 343 344 345 346 347 350 353 356 Appendix A22: Factor array by Q-sort distribution Appendix A23: Transcripts of interview responses Appendix A24: Practice tool for exploring educational priorities Appendix B1: Overview of related publications Appendix B2: Printed copies of related articles List of tables Table 3.8.1: Pilot study Q-sort responses Table 4.2.1: Average ranking of a priori categories Table 4.2.2: Classical Humanist statements Table 4.2.3: Liberal Humanist statements Table 4.2.4: Progressive statements Table 4.2.5: Radical statements Table 4.2.6: Behaviourist statements Table 4.2.7: Functionalist statements Table 4.2.8: RDI-based statements Table 4.2.9: Interactionist statements Table 4.2.10: Enabling environment related statements Table 4.2.11: Building relationships related statements Table 4.2.12: General statements Table 4.3.1: Factors extracted by percentage of variance explained and individual exemplars of factors Table 4.3.2: Correlations between factor scores Table 4.4.1: Highest z-scores for factor 1 Table 4.4.2: Lowest Z scores for Factor 1 Table 4.4.3: Exemplar individual Q-sorts for factor 1 by demographic data 358 367 369 371 373 77 101 102 103 104 105 106 107 108 108 109 110 111 112 113 114 117 122 Table 4.4.4: Distinguishing statements for factor 1 Table 4.5.1: Highest Z scores for factor 2 Table 4.5.2: Lowest z-scores for factor 2 Table 4.5.3: Exemplar individual Q-sorts for Factor 2 by demographic data Table 4.5.4: Distinguishing statements for factor 2 Table 4.6.1: Highest Z scores for factor 3 Table 4.6.2: Lowest Z scores for factor 3 Table 4.6.3: Exemplar individual Q-sorts for Factor 3 by demographic data Table 4.6.4: Distinguishing statements for factor 3 Table 4.7.1: Highest Z scores for factor 4 Table 4.7.2: Lowest Z scores for factor 4 Table 4.7.3: Exemplar individual Q-sorts for factor 4 by demographic data Table 4.7.4: Distinguishing statements for factor 4 Table 4.8.1: Highest Z scores for factor 5 Table 4.8.2: Lowest Z scores for factor 5 Table 4.8.3: Exemplar individual Q-sorts for Factor 5 by demographic data Table 4.8.4 Distinguishing statements for factor 5 Table 4.9.1: Highest Z scores for factor 6 Table 4.9.2: Lowest Z scores for factor 6 Table 4.9.3: Exemplar individual Q-sorts for Factor 6 by demographic data Table 4.9.4: Distinguishing statements for factor 6 Table 4.10.1: Highest Z scores for factor 7 Table 4.10.2: Lowest Z scores for Factor 7 Table 4.10.3:Exemplar individual Q-sorts for Factor 7 by demographic data 122 123 126 129 130 130 131 131 133 133 133 134 135 136 136 137 137 138 139 139 140 141 141 142 Table 4.10.4: Distinguishing statements for factor 7 Table 4.11.1: Highest Z scores for factor 8 Table 4.11.2: Lowest Z scores for factor 8 Table 4.11.3: Exemplar individual Q-sorts for Factor 8 by demographic data Table 4.11.4: Distinguishing statements for factor 8 Table 4.12.1: Descending array of differences between factors 1 and 2 – statements favoured by Factor 1 more than Factor 2 Table 4.12.2: Descending array of differences between factors 1 and 2 – statements favoured by factor 2 more than factor 1 Table 4.12.3: Descending array of differences between factors 1 and 2 – statements favoured (or not) by factors 1 and 2 similarly Tables 4.13.1 to 4.13.42: Factor arrays by individual statement Table 4.14.1: Autistic male participant demographic data Table 4.14.2: Autistic male factor correlation scores Table 4.14.3: Autistic female participant demographic data Table 4.14.4: Autistic female participant factor correlation scores Table 4.14.5: Non-autistic fathers – participants by demographic data Table 4.14.6: Non-autistic fathers – participation factor correlation scores Table 4.14.7: Non-autistic mothers – participants by demographic data Table 4.14.8: Non-autistic mothers – participation factor correlation scores Table 4.14.9: Non-autistic nor parent practitioners and academics by demographic data Table 4.14.10: Non-autistic nor parent practitioners and academics – participant factor correlation scores Table 4.15.1: Classical Humanism – z-scores by factor Table 4.15.2: Liberal Humanism – z-scores by factor Table 4.15.3: Progressive ideology – z-scores by factor 143 144 144 145 145 146 147 148 149 169 170 171 171 172 173 173 174 175 176 177 178 179 Table 4.15.4: Radical ideology – z-scores by factor Table 4.15.5: Behaviourist ideology and practice – z-scores by factor Table 4.15.6: Functionalist ideology and practice – z-scores by factor Table 4.15.7: Relationship Development Intervention (RDI) – z-scores by factor Table 4.15.8: Interactionist ideology and practice – z-scores by factor Table 4.15.9: Building relationships category – z-scores by factor Table 4.15.10: Enabling environments category – z-scores by factor Table 4.15.11: General statements – z-scores by factor Table 5.2.1: Table of factors by similarities and differences to factors 1 and 2 Table 5.2.2: The spectrum of educational ideology Table 5.2.3: Factor correlations between factors Table 5.2.4: Table of contrasting views by correlation to factors 1 and 2 Table 5.2.5: Autistic adult Q-sorts by correlation to factors 1 and 2 Table 5.2.6: Non-autistic parent Q-sorts by correlation to factors 1 and 2 Table 5.2.7: Non-autistic practitioners and academics by correlation to factors 1 and 2 Table 5.2.8: Spectrum of educational views by participant grouping Table A5.1: A priori categories of statements by randomly assigned number Table A11.1: Z scores for factor 1 Table A12.1: Z scores for factor 2 Table A13.1: Z scores for factor 3 Table A14.1: Z scores for factor 4 Table A15.1: Z scores for factor 5 180 181 183 184 185 186 187 188 206 208 213 214 217 218 219 219 332 340 342 343 344 345 Table A16.1: Z scores for factor 6 Table A17.1: Z scores for factor 7 Table A18.1: Z scores for factor 8 Table A.19.1: Ranking of statements given by participants Table A.19.2: Ranking list of statements and their a priori categories from highest rank to lowest Table A.21.1: Factor scores by individual Q-sort Table A22.1: Factor array by Q-sort distribution List of figures Figure 5.2.1: Number of participants exemplifying factors by participant group Figure 5.2.2: Numbers of participants exemplifying factors by participant group (including non-exemplifying factors within middle group) Figure 5.2.3: The three-way distribution curve of educational ideology Figure 5.2.4: Individual Q-sort correlation with factors 1 and 2 Figure 5.2.5: Factor correlation scatterplot graph Figure 5.2.6: Autistic adult Q-sorts by correlation to factors 1 and 2 Figure 5.2.7: Non-autistic parent Q-sorts by correlation to factors 1 and 2 Figure 5.2.8: Non-autistic practitioners and academics by correlation to factors 1 and 2 Figure 5.2.9: Spectrum of educational views by participant grouping Figure A2.1: Q-sort score chart Figure A10.1: Sample Q-sort distribution 346 347 348 349 350 355 358 209 209 211 212 213 217 218 219 220 326 339 1 Chapter 1: Introduction “...for the object of education is to teach us to love beauty.” (Plato, cited from spaceandmotion.com, 2015). 1.1 Use of terminology There is much current debate regarding the terminology related to autism (Kenny, Hattersley, Molins, Buckley, Povey, and Pellicano, 2015). This project will resist people first phrasing, however, in accordance with other ‘autistic voices’ (Sinclair, 1993; Sainsbury, 2000): “We are not people who “just happen to have autism”; it is not an appendage that can be separated from who we are as people, nor is it something shameful that has to be reduced to a sub-clause.” (Sainsbury, 2000: 12). The descriptors of ‘autistic person/people’ and ‘autistic spectrum’ will be used, and the use of the terms Autistic Spectrum Disorder/Condition (ASD/ASC) avoided, unless when referring to the arguments of other researchers, due to the medical model connotations associated with these phrases and the offence that they may cause. 1.2 Competing narratives regarding the education of autistic children Ever since autism first appeared as a clinical descriptor in the work of Leo Kanner and Hans Asperger in the 1940s, parental activism has often focussed on the 2 educational needs of their autistic children (Waltz, 2013). Such a focus has led to many educational models of intervention, with a variety of views regarding the educational challenges faced by autistic people being expressed (Sainsbury, 2000; Jones, 2002; Jones, English, Guldberg, Jordan, Richardson, and Waltz, 2008). A great deal of the advice offered by educational literature regarding autistic pupils and students employs a medical, behavioural, or cognitive psychological, model to inform their practices (Cumine, Leach and Stevenson, 1998; Hanbury, 2005; Hewitt, 2005; Worth, 2005; and Hagland and Webb, 2009). Such examples describe educational practices as ‘interventions’ and as ‘remedial’ and ‘compensatory’, focusing only on perceived functional deficits, whilst not acknowledging the possibility of autistic strengths or making an attempt to harness them; the lack of such a focus, being of concern to autistic writers such as Sainsbury (2000). Such differences in view, coupled with a lack of autistic representation also underlie the large rift between organisations such as Autism Speaks (2015) that have promoted research focusing on causation and remediation, and the amount of complaint and criticism that they receive from the autistic community (ASAN, 2015). Unfortunate associations are often drawn between a diagnosis of autism and ‘challenging behaviour’ in need of altering for the ‘better’: “In order to intervene in an attempt to change the behaviour of children with Asperger syndrome, it is first necessary to understand the function or purpose of the behaviour.” (Cumine et al. 1998: 54). 3 Literature of this nature, constructs the autistic person as a ‘problem’ for parents and teachers, highlighting ‘dysfunction’ and ‘deficit’ over ‘strength’; uncritically accepting, and overemphasising the transformative power of cognitive psychology to inform practice, whilst giving no account of autistic subjectivities. Such accounts ignore the social model of disability and frame the autistic individual as in need of discipline and control (Foucault, 1973). Such a discourse not only produces a pressure on autistic people to conform and to internalise a deficit model of their own selves, but also places a pressure on parents and practitioners to try to somehow ameliorate someone’s autistic traits. Jordan and Jones (1999) examined the range of educational provision provided for autistic people in the UK and presented an argument that in general, inclusion into mainstream provision was beneficial. “…it should become rare for a child with an autistic spectrum disorder to spend all of their educational life in segregated settings.” (Jordan and Jones, 1999: 5). Although Jordan and Jones (1999) recognised and expressed concern for respecting autistic differences, suggestions of this nature attempt to work within current educational boundaries without significantly challenging them. Inclusion is framed as improving academic and social opportunities, including a better understanding and conformity to norms of the social world, assuming that it is the autistic person who is in need of changing in order to meet normative standards. 4 However, this view of mainstream placements is often not reflected within autobiographical texts written by autistic people themselves: “For people whose disabilities involve significant sensory issues, as autism does, inclusive environments are often nightmares of continual sensory bombardment which interferes with learning and causes constant discomfort and pain.” (Sainsbury, 2000: 41). Despite many years of research into the educational needs of autistic children however, little evidence has been collated regarding the views of autistic people themselves regarding their educational priorities, still less adults who may have useful experiential knowledge to impart. When views have been published, they often present a largely social model of disability (Senior and Viveash, 1998), as is the case by Sainsbury (2000). Sainsbury (2000) describes how autistic people can face extreme difficulties within the school environment, from bullying, to the impact of poor teaching practice, and the lack of utilising autistic strengths and interests (often seen as obsessions and hindrances to progression). She argued that teachers need a greater awareness of autistic learning styles and that Further Education, Higher Education, and work opportunities needed further investigation. In a systematic review conducted for the National Council for Special Education (NCSE), Parsons, Guldberg, Macleod, Jones, Prunty, and Balfe (2009), found that within the surveyed empirical research between 2002 and 2008, articles focusing on early-intervention strategies and behavioural approaches for autistic children, were dominant. Parsons et al. (2009) found a serious lack of research concerning the educational needs of older children and adults, or research concerning the ‘autistic voice’ regarding educational practices. This conclusion is also supported 5 by a review completed on behalf of the Autism Education Trust (Jones et al. 2008). The discourse of the traditional medical model regards disability as residing within the individual. This model states that disabled people suffer a reduction in abilities due to an embodied deficiency compared to the norm (Senior and Viveash, 1998). In this model, the power to define and treat disabled people is held by the medical profession, positioning doctors and patients within highly constrained power relationships and social roles to perform. Contrastingly, the social model of disability rejects the notion that disability is dependent upon individual impairment. Baynton (1997, cited Landsman, 2005) conceptualised disability as part of a wider hierarchical system of norm/other: “…social hierarchies rely upon culturally constructed and socially sanctioned notions of disability.” (Baynton, 1997, cited Landsman, 2005: 125). Drawing upon the work of Gestalt Psychologist Wolfgang Köhler, the philosopher Ian Hacking (2009) argued that autistic people do not share a common way of coming to view behaviour, or how to infer meaning from such behaviour. Hacking (2009) hypothesises that autistic people struggle to understand the thoughts and feelings of others from observing behaviour, yet this was equally true in reverse, reinterpreting the ‘Theory of Mind’ hypothesis as a two-way difficulty instead of embedded within the cognitive processing of the autistic person alone. A similar philosophical answer can be found by building a transactional model on how a 6 cognitive difference in sensory processing would inevitably lead to a difference in phenomenological experience and a disjuncture in interactions between the two dispositions – an issue I have previously theorised as the ‘double empathy problem’ (Milton, 2012a; 2014a – See Appendix B1: Overview of related publications, and Appendix B2: Printed copies of related articles). For Hacking (2009), non-autistic people have a tendency to incorrectly perceive autistic people as having a ‘thin’ emotional life, due to assumptions made concerning outward behaviour. This issue was also highlighted by Bagatell’s (2007) in-depth ethnographic study of a young autistic man. Hacking (2009) shows how the self-narratives of autistic people have begun to create a discourse to express their experiences, and that these representations are not the ‘common property and practice’ of non-autistic people, because they are not part of that experience. Linking these concepts to those of Garfinkel (1967), autistic people are beginning to share a set of common meanings and construct an ‘ethno’, a set of cultural discourses of their own. “They are creating the language in which to describe the experience of autism, and hence helping to forge the concepts in which to think autism.” (Hacking, 2009, p. 1467). McGeer (2009) developed Hacking’s hypothesis further, examining how insights into the inner life of autistic people have demonstrated a richer inner life than is often thought. McGeer (2009) argues that the self-narratives of autistic people can not only inform practice, but transform it: 7 “If autistic self-narratives have the power to change those conditions for the better, then autistic self-narratives have the power to transform what it is to be autistic.” (McGeer, 2009, p. 528). When one looks at parental accounts of living with an autistic child, accounts vary from those framed within a highly medical / behavioural model (Maurice, 1993) to those far more akin to a social model approach (Zurcher, 2012). Whilst parent narratives regarding the education of their children are somewhat valorised in educational discourse (e.g. through their narratives being included in setting goals for Individual Education Plans (IEP)), many parents still feel that their views are not taken account of fully (ABA4all, 2014). Following the literature review undertaken for this thesis (see Chapter 2), it was found that there were somewhat differing discourses being used by autistic people compared to the educational advice given by academics in practice guidance. This led to the following key research questions being defined for this thesis: - What discourses are being used by relevant stakeholders in the narrative construction of views about educational priorities for autistic children of secondary school age? - What commonalities and tensions exist between (and within) the subjective constructions of stakeholders regarding the education of autistic children of secondary school age? 8 1.3 Outline of thesis This thesis aimed to see how differing stakeholders, often occupying a marginalised positionality, construct a discourse that navigates through the available competing public discourses, how perceptions of education and learning are constructed within this context, and how subject positions are taken up from culturally available discursive repertoires. The thesis looked to adopt a discursive social psychological epistemology akin to the seminal work of Potter and Wetherell (1987) who blended influences from linguistic analysis, Ethnomethodology (Garfinkel, 1967) and Poststructuralism (Foucault, 1973). In the course of this thesis a number of methodological approaches were piloted before a Q-sort methodological approach was undertaken. Q-sort methodology as developed by Stephenson (1935, 1953) was utilised in conjunction with a number of online interviews. The discursive psychologist Edley (2001, cited Hollway, 2007) argued that identity was like a “jelly that never sets” and highlighted social representations and practices that help to constitute unequal power relations. By utilising a social constructionist epistemology and Q-sort methodology, this thesis intended to shed light on the discursive resources drawn upon by autistic people and other stakeholders, and the actions performed in their expressions, in terms of its constitutive functions in constructing social reality. The discourse of various stakeholders were analysed to see how discursive resources are used to construct narratives regarding educational ideology and practice. The dilemmas and contradictions found within the expressions of various stakeholders were also analysed in terms of how they constitute, and are constituted by, wider power relations. 9 1.4 Thesis structure This thesis is split into seven chapters (inclusive of this introductory chapter). In Chapter 2: Literature review – a number of related areas to the topic were reviewed. Firstly, the construction of autism itself as a concept, followed by a review of educational guidance and practice material, an exploration of the ‘autistic voice’ regarding educational practices, and literature focusing on participatory and emancipatory research. In Chapter 3: Methodology – an overview is given of a number of pilot studies that were undertaken in the development of this thesis utilising a variety of research methods. This is followed by a discussion concerning why a Q-sort methodology followed by an invitation to participate in an interview was selected as the best way to capture relevant data and answer the proposed research question for the main study of this thesis. The remaining sections of this chapter outline the design, procedures and ethical considerations taken into account in the development of this study. In Chapter 4: Findings – a full description is given of the main findings from the study. Included in this chapter is a breakdown of the factors extracted from the Q-sort analysis and the breakdown of views within the sample group of which educational ideologies were being promoted by which stakeholder groupings and if there was a large amount of diversity of viewpoint within sampled stakeholder groupings. Chapter 5: Meta-analysis – continues with the examination of the data, but triangulates the data from the Q-sort analysis and follow-up interviews, in order to give an overview of the ideological terrain as marked out by the participants. Chapter 6: Discussion – explores the key findings from the study, and proposes a number of recommendations for future practice as well as a reflection regarding the Q-sort methodology utilised in the study. Chapter 7: Conclusion – draws the thesis to a 10 close with a reflection on the theoretical, practical and methodological implications of the main findings, as well as offering ideas concerning how research in future could expand upon the work outlined in this thesis. 11 Chapter 2: Literature Review “The middlemen almost unconsciously adulterate the food which they supply. It is because of teachers that so little is learned, and that so badly.” (Nietzsche, cited from spaceandmotion.com, 2015). 2.1 Introduction In order to address the topic of educational discourse in relation to autistic pupils at school, a thorough literature review of four main areas, was undertaken. Firstly in Section 2.2, literature regarding the construction of autism as a concept was reviewed in order to frame the thesis within current debates and engage with the various ontological considerations as to what autism pertains to. There are many competing theories that try to explain the autism phenomenon, largely from a cognitive psychological perspective, yet also differences of view regarding medical and social models of disability. However one defines what autism is, will naturally lead on to a particular range of educational priorities on which to focus. Section 2.3 continues with a review of literature regarding the autistic voice and insider views regarding education, including from autobiographical accounts of autistic people. As was argued in Chapter 1 of this thesis, the autistic voice has traditionally been the least listened to of all stakeholder groups, and it was seen as of paramount importance that literature regarding autistic experiences of education be reviewed for this thesis. Having considered the views of autistic people regarding education, these views are then contrasted in Section 2.4 with a 12 review of literature concerning educational theory and practice with regard to autistic people. Within this section, educational practice guidance materials are reviewed in terms of their ideology and practice ethos and compared with those expressed by the autistic writers in Section 2.3. Finally, Section 2.5 of the literature review explores texts regarding emancipatory and participatory research, within an ethos in which this thesis is situated. 2.2 Literature regarding the construction of autism as a concept This review does not go into great detail as to the origins of the term autism, as this has been done elsewhere (e.g. Feinstein, 2010; Waltz, 2013). However, one hardly has to look at the diagnostic criteria of the DSM-5 (APA, 2014) or ICD-10 (WHO, 1992), or the majority of autism related literature, in order to see the mark left by the work of Kanner (1943) and Asperger (1944, cited Frith, 1991). Although these were simply two studies amongst a plethora that have come since, they are given extra credibility for originating the term ‘Autism’, in terms of a usage that we may recognise in contemporary times. Many of the initial ideas that they had in terms of conceptualising autism however, for example autism being a personality disorder, have been expunged from the autism lexicon, yet their seminal influence remains. These original studies were followed by those based in the psychoanalytic tradition, epitomised by Bettelheim (1967). For Bettelheim (1967), ‘infantile autism’ was the consequence of a lack of mutuality in mother-child interactions, either expecting the child to cope without support too soon (or neglect), or by inhibiting the child’s efforts to complete tasks without support. 13 “...the experience that his actions (cry or smile) make no difference is what stops him from becoming a human being, for it discourages him from interacting with others and hence from forming a personality through which to deal with the environment.” (Bettelheim, 1967: 25). Although Bettelheim (1967) referenced the work of Kanner (1943) and Rimland (1964), he primarily interpreted autism through the prism of psychoanalysis (Winnicott, 1953; Bowlby, 1958; and Erikson, 1959, cited Bettelheim, 1967). Bettelheim (1967) drew parallels between the dehumanising effect on the young child of a lack of mutual relationships with others, and the dehumanising effect of interactions between concentration camp prisoners and guards, positing both experiences as leading to a loss of self-identity. Although, Bettelheim’s (1967) psychoanalytic theories have lost prominence in Britain as an explanation of autism, they are still prominent within Francophone cultures (Tendlarz, 2003). It is also important to note how a more generalised discourse of the dehumanised autistic person is still a prevalent one today: for example, the stereotype of a child, locked behind a wall, unable to interact with others or to learn basic human ‘social functions’, to be somehow less than fully human (Mencap, 2007). One of the most important developments in the history of autism in Britain was the work of Wing and Gould (1979) and the subsequent widening of the autism spectrum to include Asperger syndrome. This work largely created the discourse of a triad of impairments in autism, of: social communication, social interaction, and imagination (repetitive interests/activities). 14 “Autistic children do have imagination, but it is not social.” (Wing, cited in Feinstein, 2010: 152). For Nadesan (2005), the replacement of the psychoanalytic framework of autism, by the rise of cognitive psychology, reconceptualised autism from being seen as “a disturbed ego development” to a “computer with modular dysfunctions”. The dominant cognitive-psychological models of autism, including: theory of mind deficit, executive dysfunction, weak coherence theory, and empathising-systemising theory, have been previously criticised by this researcher (Milton, 2011, 2012b – See Appendix B1: Overview of related publications) and others (Lawson, 2010; Timimi, Gardner, and McCabe, 2011) for their lack of universality, specificity, and explanatory power in describing autism. It is argued here, that autism is a social construction, with the most accurate depiction of autistic subjectivity to come from psychological theory of monotropism, as endorsed by insider voices such as Murray (1992), Williams (1996), Murray, Lesser and Lawson (2005), and Lawson (2010). The dominant psychological models of autism were also explored in depth in an article that the researcher wrote for the Autism Education Trust Competency Framework (Milton, 2012b – see Appendix B1: Overview of related articles). In more recent years there has been an ‘epidemic’ of autism research, particularly in the field of neuroscience within the UK context (Pellicano, Dinsmore, and Charman, 2013), with some interesting findings and theories emerging regarding autistic ways of processing information (e.g. Pellicano and Burr, 2012). The psychiatrist Sammi Timimi and his two autistic colleagues in The Myth of Autism 15 (Timimi et al. 2011) however, argue that due to the heterogeneity of cases labelled autism, scientific investigations are unlikely to find any universal biological/neurological markers, as the condition is behaviourally defined (and thus based on subjective understandings), and so such investigations are unlikely to discover any objective basis for autism. Timimi et al. (2011) state that massive variations can be found between studies, from increased size of brain regions, to those indicating a smaller size in the same region (e.g. the cerebellum (Buitelaar and Willemsen-Swinkels, 2000; Abell, Krams, Ashburner, Passingham, Friston, and Frackowiak, 1999) versus (Gaffney, Kuperman, Tsai, Minchin, and Hassaneim, 1987; Courchesne, Yeung-Courchesne, Press, Hesslink, and Jernigan, 1988)). Timimi et al. (2011) also suggest that neuroimaging studies often over-exaggerate their claims and tend to be followed by subsequent studies that cast doubt on the specificity of such claims. Social theorist and parent to an autistic child, Majia Nadesan (2005) argued that due to the variety and plasticity of brain development, it is difficult to achieve valid and reliable methods to distinguish between the normal and abnormal, and thus a difficulty in disentangling the relative contribution of multiple causal pathways to whatever brain morphology is being investigated. The scientific evidence for an environmental causal factor is slim indeed, particularly with regards to vaccines (Timimi et al. 2011) and diets (Fitzpatrick, 2009). 16 “Struggling with the difficulties posed by their children in the therapeutic vacuum of mainstream autism provision, many parents were willing to try anything.” (Fitzpatrick, 2009: xi). For Fitzpatrick (2009), the expansion of diagnosis and the growth in public awareness of autism, subsequently led to a reduction in the marginalisation of autistic people, yet concurrently has led to the stretching of the diagnosis “so wide” that autism could lose some of its distinctiveness as a condition. For Fitzpatrick (2009) normalising autistic difference may reduce social stigma, but at the risk of trivialising those with more severe cognitive deficits, and the extreme aloneness from social impairment that affects all on the spectrum. This argument suggests that by reducing the otherness of autism, one would reduce the awareness and appreciation of autistic impairment, an argument that would be in stark opposition to a social model approach to disability (Senior and Viveash, 1998). Timimi et al. (2011) attempted to critique and deconstruct the available psychiatric theory and practice in relation to autism. They argue that the widening of the disorder to a broad spectrum of people has largely been due to an ideological change, reflecting social, economic and cultural changes in Western culture, producing an increasing medicalisation of young males, constructing them as lacking in social and emotional competence. They conclude with arguing that the concept of autism is more of a hindrance than a help to those diagnosed with it, and should be abandoned. For Timimi et al. (2011) the autistic spectrum has obviously been widened too far: 17 “It is obviously absurd to have a spectrum stretching from speechless residents of day centres who need constant care to Einstein...We might just as well replace the term ‘autistic spectrum’ with ‘human spectrum’!” (Timimi et al. 2011: 76). Timimi et al. (2011) rightly reject explanations of autism that locate the cause of ‘problems’ as solely within the individual child (e.g. a medicalised deficit model). Timimi et al. (2011) state that much psychiatric practice is of a subjective nature, and thus is open to a great deal of abuse, one of these being the abuse of normalisation: “The desire to control, amend or even extinguish human behaviours that depart from an increasingly narrow stereotype of normality has bedevilled the history of psychiatry.” (Timimi et al., 2011: 8). Although applying some Marxist sociological concepts, and restating ideas of older luminaries of the anti-psychiatry movement that this researcher has some sympathy with (e.g. Laing, 1960; Rosenhan, 1973; Foucault, 1973), this argument contains a number of serious flaws. Rather than a full deconstruction of the social construction of autism, Timimi et al. (2011) present a case of the lack of empirical evidence to support the label, followed by a philosophical argument as to whether utilising such a label can hold back one’s life chances. Timimi et al. (2011) suggest that there has been a rationalisation of childhood (reminiscent of the sociology of Max Weber, cited in Ritzer, 1996), and increased surveillance (akin to the ideas of Foucault, 1973), employing a growth of 18 professionals tasked with studying, and intervening in children’s lives. Thus, children’s failure to learn it is argued by Timimi et al. (2011), has been increasingly attributed to bio-genetic deficits or poor parenting, rather than a failure of state endorsed apparatus. Nadesan (2005), by contrast, does not dispute a biological basis for autism, yet contends that the idea of autism is fundamentally socially constructed: “Although there is a biological aspect to this condition named autism, the social factors involved in its identification, representation, interpretation, remediation, and performance are the most important factors in the determination of what it means to be autistic, for individuals, for families and for society.” (Nadesan, 2005: 2). For Nadesan (2005), the expansion of public schooling in the 19th century led to the identification and surveillance of troublesome children, linked to biological degeneracy and criminality. This formed the basis for the early 20th century focus on child guidance and the medicalisation and remediation of childhood deviance, and a proliferation of caring professions, the hegemonic framework for such practice being the voice of psychology, which had the power to delineate between the normal and the pathological (from delinquency, to neurosis, and finally developmentally delayed). This discourse dominated by psychoanalysis and cognitive psychology, was not restricted to clinical practice, but influenced everything from educational psychology to childrearing manuals. These paradigms, Nadesan (2005) argued, have narrated the story of childhood: “This increasing medicalisation of childhood combined with parents’ growing familiarity with these representational frames, subtly changed parenting and 19 pediatric practices, leading to historically unprecedented forms of surveillance and social engineering.” (Nadesan, 2005: 81). According to Nadesan (2005) cognitive psychology narrowed the frame of what was considered ‘normal’ and pathologised behaviours that had hitherto escaped the medical/scientific gaze. She also questions Wing’s (1997) assertion that a shift to a cognitive understanding of autism had been an advance in knowledge, but instead represented socially and historically situated ways of knowing. Oliver (1990) distinguishes between impairment (biological lack or deficit) and disability (the social interpretation of impairments), thus, presenting the impaired body as brute biological fact (and within the confines of medical discourse). Additionally, he argues that an analysis of disability must involve addressing subjective experience and phenomenological embodiment, as it expresses, performs and resists the cultural frameworks for knowing and ‘managing’ disability. As Nadesan (2005) points out, narratives of autism and other developmental disabilities are framed in terms of a risk to be managed by society (Beck, Giddens and Lash, 1994). This management tends to privilege the authority of scientific ways of knowing. For Nadesan (2005) autistic symptoms stem from diverse aetiologies, and are produced through historically situated representational practices, whilst biogenetic approaches localise the responsibility for ‘disease’ in the individual, obscuring how genotypes interact with environments to produce phenotypes. 20 In The Autism Matrix: the Social Origins of the Autism Epidemic; Eyal, Hart, Oncular, Oren and Rossi (2010), argue that the recent rise in the population of people diagnosed as autistic is not due to a change in the number of people displaying new clinical symptoms, but due to changes in clinical descriptions and diagnostic procedures. One of the important changes outlined by Eyal et al. (2010) is how diagnostic substitution has occurred, with those previously diagnosed as having learning disabilities or psychiatric conditions being diagnosed as autistic. In this way, Eyal et al. (2010) show autism to be an evolving cultural construct. Eyal et al. (2010) present the ‘autism industry’ as a product of medical economics, which grew out of surveillance strategies implemented in the policing of child development – an argument shared with other authors (Nadesan, 2005, Waltz, 2013). Eyal et al. (2010) also suggest that within a context of service-based economies, the nature of what kinds of people are perceived as economically productive has altered, leaving a range of people excluded, defined as economically invalid and targets for costly intervention. Timimi et al. (2011) argued that autism is a fictional, socially constructed concept, which narrows the social expectations of those labelled (reminiscent of the ‘self-fulfilling prophecy’ of Becker, 1963). They are dismissive of the idea that the label could help someone make sense of their life, likening this to the scientific validity of star-signs, stating that not everyone labelled with the condition has experienced it as liberating. 21 “This does not mean that there is no significant physical component involved in the development of what we today call autism. After all absence of evidence does not necessarily equate with evidence of absence.” (Timimi et al., 2011: 140). Timimi et al. (2011) suggest that it is premature to declare autism as it is known today as a myth, as there is simply not enough evidence to support its existence either way. They argue however, one should thus scientifically adopt the null hypothesis, proclaiming that autism is a myth and that one should do away with the label. What this argument leaves out however, is that for many on the spectrum, gaining a diagnosis can be experienced as liberating, and Timimi et al. (2011) give no explanation as to why this might be the case. They argue for a more genuine acceptance of human diversity, rather than seeking to control such diversities by ever-more encompassing medical categorisations. This may be a noble effort, yet not everyone using such labels, are using these to control diversity. Some are coming from the positionality of that diversity, and who have a voice that has largely been ignored (Arnold, 2010). Nadesan (2005) argues that constructing an ontological divergence between autistic and neuro-typical people, creates the impression of two separate and ontologically homogenous groups, reducing individual differences expressed at the level of mind (open to social influence) to the level of the brain (where they are fixed), and that despite celebrations of ‘autistic genius’, people with autism know that their difference is ultimately devalued in relation to neuro-typical cultural normality. In widening the spectrum of what can be considered autistic however, Wing and Gould (1979) also opened up the possibility for autistic self-advocacy at 22 an individual and group level, in terms of the numbers of people diagnosed and their potential capacity to communicate with one another. By opening up a public discourse about neurological diversity, it has enabled a cultural space for people on the spectrum to interact with one another, resist medical model descriptions of themselves, and to begin to build an autistic culture. The point is that autistic people will be discriminated against whether they are diagnosed or not. Labelling and the subsequent growth of autistic rights and self-advocacy groups could lead to spaces in society where the benefits of these traits can be realised instead of shunned. Timimi et al. (2011) charge the autistic rights movement with not having thought through the implications of supporting the label as a ‘diff-ability’ (as argued by Lawson, 2008), and the associated self-fulfilling prophecy of seeing oneself as genetically different in terms of empathy. They warn of the dangers of the autistic rights movement staying loyal to the pseudoscience supporting the concept, seemingly unaware that many in the movement do challenge the concept of the medical model of autism (Lawson, 2008; Arnold, 2010; Milton, 2012a; 2012b – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). What Timimi et al. (2011) fail to perceive, is that a lack of a universal positive consequence from receiving the label for all autistic people is not a reason to abolish it. Timimi et al. (2011) argue that the autism label is likely to produce a distraction from a full appreciation of an individual’s situation. This view is equally subjective however, to the diagnostic procedures that they are discrediting. Such comments are also divisive to an autistic community that looks to be inclusive of all on the spectrum, and celebrate such diversity. 23 For the social theorist, Jenkins (1998), there has been a progressive shift of nomenclature regarding the naming of people with ‘intellectual disabilities’, from ‘idiocy’, to ‘feeble-mindedness’, to ‘mental subnormality’, to ‘mental handicap’, to ‘learning difficulties’ and ‘learning disabilities’. Although recent changes in political correctness, aimed at enhancing self-worth and value appear more benign, they are often used to obscure an offence. Diagnosis of such ‘intellectual disability’ typically draws upon three main areas: an IQ measured as below an arbitrary level, identification in early childhood, and ‘behavioural problems’. Jenkins (1998) links these notions to the expansion of the values of citizenship, and its definition by exclusion, (i.e. who is deemed fit to exercise the responsibilities of citizenship (Goodey, 1995, cited Jenkins, 1998). For Jenkins (1998), incompetence, intellectual disability, and disability more generally, are not consistent or naturally self-evident categories, but are socially dependent and constructed. Hacking (1990) argues that normality is defined by that which is most typical or the ‘usual state of affairs’, and then suggests that this is reified in the public discourse, with the propagation of the average becoming a moral imperative. The ideology of normality that Hacking (1990) refers to can be seen in the work of sociologists Emile Durkheim and Talcott Parsons (cited Ritzer, 1996) and all whom they influenced. For Jenkins (1998), the authority of science (or one could argue the use of positivist method in social science) legitimised claiming the ‘criteria of competence’: “...the statistical plotting of a normal curve of distribution for measured intelligence has probably been the single most important factor in the definition and creation of 24 a category of persons known as the ‘mildly mentally retarded’. Before the advent of the bell-shaped curve, the category simply did not exist.” (Jenkins, 1998: 17). Jenkins also relates this philosophy to racist 19th century ideologies, and claims of the inferiority of colonised peoples of the world, and the ideology of eugenics, linking these to the early classification of mental incompetence, (e.g. Mongolism in the description of Down’s linked to ‘Mongoloid race’). “Although not an animal, the person with intellectual disabilities may be classified as sub-human, as unnatural monstrosity.” (Jenkins, 1998: 19). As Jenkins (1998) points out, this way of thinking has led to powerful means of social exclusion or even extermination. When one looks at campaigns such as ‘Defeat Autism Now!’ (Defeat Autism Now!, 2011) or research into the ‘cost’ and ‘burden’ of autism (Buescher, Cidav, Knapp and Mandell, 2014; Leigh and Du, 2015), this ideology is still relevant to contemporary discourses. Jenkins (1998) argues that struggles regarding qualification and eligibility to equality and inclusion can be seen in many civil rights movements past and present, something echoed by the neurodiversity movement and autistic voices more generally. The question of ‘whose view counts?’ in the field of autism has become a contentious one, with differences in argument related to whose voice is seen as authentic in talking about the needs of autistic people. The idea that able and articulate autistic adults should ‘speak on behalf’ of less verbal autistic people with learning disabilities are often met with derision from some members of the parent community, particularly those espousing a more control-oriented perspective (e.g. Dillenberger, Keenan, 25 and Gallagher, 2015). However, the idea of ‘speaking on behalf of’ would be seen by autistic activists as a misrepresentation and misappropriation of ideas regarding inclusive autistic communities (ASAN, 2015). According to autistic activists (ASAN, 2015), the need for the autistic ‘voice’ to be heard can be seen as a right that has consistently been removed from the majority of autistic people. In terms of educational theory and practice, this thesis will seek to afford autistic people this right. 2.3 Literature regarding the autistic ‘voice’ (including autobiographical accounts) “Neurology and psychiatry have much to say about the specific formulations of autism, its origins and manifestations, but it is in listening to those who live with and in the condition that the outlines of what it means to be autistic are most significant.” (Murray, 2008: 60). For both the autistic anthropologist Dawn Prince-Hughes (2002) and cultural theorist Stuart Murray (2008), the ability for autistic people to express themselves has been greatly increased through the growth of the internet. Through this there has been a growth of the autistic ‘voice’ being given a platform, and the ability of autistic people to communicate with one another, and develop a neurodiversity movement. As Murray (2008) points out, this movement has challenged traditional ideas of disability (e.g. as absence or lack). Murray (2008) suggests that this has created a tension, however, in discourses concerning autism: 26 “...public conversations about autism are full of arguments between activists expressing a rights-based agenda and others, often parents, who see such expression as an avoidance of the suffering that they witness on a daily basis as carers.” (Murray, 2008: 6). This distinction is not a clear-cut one though, with many on the spectrum being parents of both autistic (like this researcher) and non-autistic children themselves. It is just a popular myth that people with learning disabilities do not have children. Grandin (1995) acknowledges a difference between autism and what is deemed normal. She also stresses the abilities of people on the spectrum, but does not elevate differences to a separate mode of expression and communication, in as positive a way as other autistic writers (e.g. Williams, 1996; Baggs, cited Murray, 2008; or Lawson 2008; 2010). She argues that this difference is largely genetic, and may confer evolutionary advantages (and some disadvantages), set in terms of how it could enrich the majority culture. Often Grandin has become an exponent of the concerns of the wider autism industry (Murray, 2008), an insider whose abilities are deemed remarkable due to the difficulties she has ‘overcome’ (as well as her remarkable achievements). Although she has contributed to this image, it could be said that this is due to the wider community’s construction of her identity. Activists like Baggs (cited Murray, 2008) make bolder claims by suggesting that autism is a way of being in the world which does not need intervention and remediation. 27 “Individuals and families need to be supported in their quest to develop their fullest potential. This must come from a position of value and not one of deficit or impairment.” (Lawson, 2010: 38). When looking at the autobiographical accounts of autistic authors, one can see a general pattern emerging regarding their experiences within educational establishments (Grandin, 1995; Williams, 1996; Sainsbury, 2000; Tammet, 2006; Nazeer, 2006; Lawson 2010). For instance, the liking of predictable routines, places of safety and danger, difficulties concentrating in class due to chatter, the slow pace of a perfectionist nature, visualising episodes and stories in the form of pictures, obsessive collecting and hoarding, a sensory/tactile appreciation of the environment, a feeling of happiness when doing one’s own thing, a liking for maths and/or science or music, being bullied and being seen as a ‘geek’, ‘loner’, and ‘different’, a love of libraries, lists, and facts, of having wanted friendship – but not knowing why people did not talk about anything ‘interesting’, poor coordination, the anxiety of transitions between classes and during breaks, the eventual making of friends with other ‘outsiders’, and an enjoyment of the smaller classes and in-depth study of Higher Education. Although this list is not exhaustive, and autistic people will have experienced these to a greater or lesser extent, it is important to note the social nature of their perceived issues and how these are not primarily linked to an internal locality, but in the transaction and interactions one has with others: the phenomenological life world (Schutz, 1967). Another issue that is consistently raised by the aforementioned autistic writers is the definition of what constitutes a good education for an autistic person. Grandin 28 (1995) argues that many people with a diagnosis of Asperger syndrome would benefit from being placed in a gifted class for areas of strength, whilst needing special education in their areas of weakness. Grandin (1995) argues that intensive early intervention is beneficial to autistic children. Whilst Grandin (1995) is generally supportive of some behaviourist methods, she warns that it is not appropriate for all on the spectrum: “While the program is wonderful for some kids, it is certain to be confusing and possibly painful for children with severe sensory jumbling and mixing problems.” (Grandin, 1995: 43). From her observations, Grandin (1995) argues that the best methods come from consistency of method, rather than which type of intervention is being utilised. What Grandin (1995) concludes, is that educational programs should be tailored to the individual, via a practical awareness of using what ‘works’ and reducing what does not. For Grandin (1995) the potential academic and career success of ‘high-functioning’ autistic people is dependent on two key factors: mentoring and the development of talents. Lawson (2010) argues that autism is generally misunderstood within the education system, and wrongly labelled as challenging behaviour, laziness, stubbornness and so on, creating further difficulties in the school environment, by viewing autistic people in terms of typical developmental expectations. In order to bridge the gap between the perspectives of neurotypical and autistic people, Lawson (2008; 2010) suggests finding a mutual interest (or joining the interest of the 29 autistic individual first). She also argues that technology could help to bridge this gap in understanding and communication. Both Williams (1996) and Lawson (2008; 2010) suggest that between psychology and the media, impressions and appearances of autism from an outsider perspective have become reified stereotypes, with powerful myths being created, (e.g. a lack of empathy, emotions, sense of pain, humour, imagination, and so on). Lawson (2008; 2010) suggests that these stereotypes have been formed and continue to perpetuate a deficit model. Williams (1996) points out that since such myths are treated as facts, when autistic people do not perform to these debased standards, that their diagnosis is then questioned by outsiders, thus for Williams (1996) such stereotypes become self-fulfilling prophecies, with autistic people being kept in a patient role (or ‘Sick Role’ – Parsons, cited Ritzer, 1996). So autistic people working from a devalued social position are unlikely to be asked to be public speakers regarding autism (other than as an ‘expert by experience’), thus professionals and parents became the spokespeople and ‘acclaimed experts’. The world consequently came to see people who did not fit the stereotype as exceptions, thus leaving the stereotypes intact. “...right from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.” (Williams, 1996: 14). 30 Here, Williams (1996) presents a strong argument for hearing autistic voices from a phenomenological perspective, but also one could argue, to analyse the discourses of various stakeholders in the education of autistic people. “I had virtually no socially-shared nor consciously, intentionally expressed, personhood beyond this performance of a non-autistic ‘normality’ with which I had neither comprehension, connection, nor identification. This disconnected constructed facade was accepted by the world around me when my true and connected self was not. Each spoonful of its acceptance was a shovel full of dirt on the coffin in which my real self was being buried alive...” (Williams, 1996: 243). Williams (1996) suggests here the internalised stigma (Goffman, 1963; Milton, 2013a – see Appendix B1: Overview of related articles) and ‘psycho-emotional disablism’ (Reeve, 2011; Milton and Moon, 2012 – see Appendix B1: Overview of related articles) suffered by autistic people can largely be attributed to attempts to normalise them, calling into question functionalist ideals of education and also behaviourist psychological and educational interventions. Williams (1996) directly criticises the use of behavioural techniques such as Applied Behavioural Analysis (ABA), for only working on function and appearance, and for their lack of fit with autistic perceptions, for instance: what is rewarded is chosen by an outsider, leading to potentially inappropriate rewards, (e.g. the bombardment of emotionally laden praise, and hugging, and punishments being internalised as rewards such as time-outs). For Williams, such techniques: “...may feel like a senseless ritual of abuse, regardless of its ‘good’ intentions.” (Williams, 1996: 51). 31 For Williams, rote learning can lead to training people to behave as if their problems do not exist, or lead to inappropriate responses when on ‘autopilot’. Instead she suggests slowing down input (e.g. a low arousal approach), keeping things concrete and tangible, being indirectly confrontational, rather than directly confrontational, and utilising voluntary compensatory strategies. “Looking at how ‘autistic’ people measure up to non-autistic people according to a non-autistic developmental path tells the researcher nothing about how far the same person may have developed a whole range of adaptations, compensations and strategies along an ‘autistic’ track. Measuring non-autistic people by this type of development would often find them failing miserably and appearing to be thoroughly ‘sub-normal’ by ‘autistic’ standards.” (Williams, 1996: 235). Williams (1996) suggests that those children that exhibit less confrontational behaviour (more passive/hypersensitive autistic people), are often overlooked by school staff, if they are not causing problems for staff. Williams (1996) contends that the training and education that is needed is from autistic people themselves, with a growing number across the world, sharing experiences with each other, and with professionals and parents. “...people with autism don’t need a High Street full of competing shops, they need a department store where each department is aware of what the others offer and points people in the direction of other services which complement their own.” (Williams, 1996: 50). In a criticism of the ‘Option approach (Son-Rise)’, Williams (1996) suggests that although such an approach goes beyond surface appearances, to a sense of 32 validating an autistic person’s existential being, she suggests that by using any expression as a basis for interaction, may further alienate people who do not identify with or intend such expressions, and that sometimes a less directly confrontational approach may be needed, due to sensory and emotional hypersensitivities. It is important to note here that the same criticism could be made of the ‘Intensive Interaction’ approach (Nind and Hewitt, 1994; Hewitt and Nind, 1998; Kellett and Nind, 2003) if practised without due sensitivity and reflection. In contrast to Timimi et al. (2011), Williams (1996) and Lawson (2008) agree that psychology has largely conditioned concepts of what it is to be normal, along with the ‘autism industry’. Yet rather than calling for the abolition of the label, Lawson (2008) calls for the expansion of what is considered normal, ideally within a more inclusive society, which at present is not inclusive of difference, and which prevents the healthy development of a varied and wide population of people. Although it is often argued that to frame autism in terms of a ‘diff-ability’ would lead to a limiting of supports/provisions, Lawson (2008) argues why?, as people need support from the design of left-handed guitars, to spectacles for the short-sighted, thus, people all need support to varying degrees throughout the course of their lives: “I recognise that I am disabled in a world that does not recognise, respect, value and accommodate difference.” (Lawson, 2008: 49). 33 For Lawson (2008) inclusion into the school environment would need: consideration of sensory sensitivities, adapting curricula and timetables to accommodate learning styles, providing a well structured classroom/work environment, and arranging for one-to-one support rather than a permanent group focus, with which autistic people are often left with a sense of isolation and despair, rather than a sense of belonging. She contends that placing all children in one setting would be the ‘ideal’, however, it rarely works in practice. Instead people are led to believe that their difference is a bad thing (and a thing holding them back): “Placing every child into a school governed by inclusive policy but not inclusive practicalities is like trying to fit all shapes into one (or round pegs into square holes). It will not work.” (Lawson, 2008: 98). Lawson (2008) argues that at school, pupils are generally encouraged to put away individualistic interests and move toward that of the group. At University however, specialising is seen more in terms of commitment and intelligence. Fostering autistic interests at school would make autistic people feel more valued, and would lead to less school refusal and less loss of motivation. Prince-Hughes (2002) in her study of autistic college students, found that autistic behaviours were often deemed not normal and unwelcome by the university community (e.g. talking at length about special interests, a disregard for personal appearance or hygiene, speaking without censoring thoughts, asking for continuous clarification, and an attachment to comforting objects). Many of the 34 phenomenological accounts reviewed suggested that the effort of trying to fit in was not worth it due to the exhaustion and anxiety it produced, and the potential negative impact this could have on self-esteem, mental health, and grades. A lack of understanding and relevant resources could lead to depression, or the loss of a promising individual to the academy (disabled by social differences). Common problems encountered included: misdiagnosis, lack of efficacy of talking therapy (University counsellors), inappropriate academic advice and support, poor career advice, dealing with exam stress, social challenges, a need for sameness (lecture rooms being altered at the last minute), navigating housing, daily maintenance (e.g. shopping, paying bills, time management), prosopagnosia, and the need for ‘disruptive’ behaviour for others (tics, flaps) to be understood and not seen as ‘not paying attention’. It can thus be seen that navigating the Further and Higher Education environment may be preferable to that of school, but still presents many potential barriers to the autistic learner. In recent work for the Autism Education Trust (AET), Milton and Giannadou (2012 – see Appendix B1: Overview of related articles) analysed the experiences of and views regarding school life of 32 autistic children and young people, as well as adults. The young people sampled, highlighted bullying as the most difficult aspect of school life, along with navigating friendships, and having personal space and relational issues. Supportive staff and friends were also seen as important factors in a positive experience of school life. A lack of understanding from staff was highlighted by a number of participants in this study, along with personal difficulties with change, memory, waiting and anger. In terms of curriculum, utilising one’s interests was highlighted, whilst almost all subjects were cited as 35 being positive or negative depending on the individual young person concerned. The most commonly referred to difficulty concerning the curriculum was in regard to English and literacy classes. The AET consultation work also surveyed parents and practitioners in order to inform their materials, yet neither of these stakeholder groups highlighted issues with the environment to the extent of the numerous mentions of environmental issues expressed by the autistic young people consulted. Issues included: accessible play areas, personal space, monitoring of bullying, tidy buildings, consistency of staff, peers that collaborate in the learning process, and the provision of quiet spaces. 2.4 Literature concerning educational theory and practice regarding autistic people: Following the social theorist, Scrimshaw (1983), educational ideology can loosely be categorised into five major paradigms: classical humanism, liberal humanism, instrumentalism, progressivism, and reconstructionism. For Scrimshaw (1983), classical humanist ideology can be traced back to Ancient Greek philosophy, and conceptualises education as a way of producing a consensual and harmonious society, populated by rational citizens within hierarchical structures of roles and responsibilities. Liberal humanist ideology promoted ideas of structure, order and discipline to encourage individual pupils to become morally responsible citizens, in order to create a fairer more equal society made up of ‘free-thinking individuals’. 36 An instrumentalist views education as primarily concerned with training people to become part of a highly skilled and educated workforce in order to meet the economic needs of a society. Such a view sees knowledge in factual terms and learning as primarily teacher-led. Progressive ideas focus on meeting individual needs and aspirations and take a mutual interactionist stance, seeing education as supporting personal growth and strengthening a democratic society (Dewey, 1915). Progressive educational ideology highlights the need for pupils to learn from one another in active problem-solving activity and in a variety of social contexts. Lastly, a reconstructionist ideology is characterised by radicalism and sees education as fundamental to wider social change. Such educational ideologies can be seen as forming the wider discursive framework that educational practice with autistic people sits within. Educational theorists, Brock, Jimerson, and Hansen (2006), argued that due to the increase in prevalence/diagnosis of autism, it is more likely that school professionals would be identifying and serving people on the autism spectrum. With this increasing prevalence has come a plethora of texts regarding educational theory and practice for those on the autism spectrum. Much of this literature tends to simply accept not only the diagnostic criteria in defining what autism is, but also the dominant psychological models of autism, often utilising an unquestioning positivist as well as liberal or instrumentalist narrative that educational practitioners need to be informed by evidence-based and ‘well-founded’ practice. However, many such texts do not give ‘voice’ to autistic people themselves (Cumine et al., 1998; Peeters and Gillberg, 1999; Hanbury, 2005; Hewitt, 2005; Worth, 2005; Hagland and Webb, 2009). 37 “Children, adolescents and adults with autism have or suffer from autism; they are not autistic.” (Peeters and Gillberg, 1999: 14). Some theorists are more critical of such theories and when utilising them, do so with critical insight (Jordan and Powell, 1995; Jordan, 1999a; Jones, 2002), however, both Jordan (1999a) and Jones (2002) concentrate upon the biological, psychological, and behavioural explanations of autism, and what teachers and other professionals can learn from such insights, yet Jordan (1999a) states that political and sociological perspectives were beyond the scope of her text. It is such omissions that have hampered theoretical discourses regarding educational practice for autistic people. Such texts assume a deficit model of autism, one which is often disputed by autistic writers themselves (Lawson, 2008; 2010; Arnold, 2010; Milton, 2011; 2012a; 2012b; 2014a; Milton and Lyte, 2012 – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). The primary concern of these educational texts tends to be the features of autism which can adversely affect a pupil’s ability to learn and how teaching staff need to adjust their practice to accommodate these. “Based on what we know, it is reasonable to see autism as a behaviourally defined developmental disorder which is the result of neurological dysfunction caused by, as yet, undetermined factors likely to include a strong genetic influence.” (Hanbury, 2005: 7). Such literature blurs the boundaries between educational and medical discourses, with the education of autistic children being framed in terms of therapies, 38 interventions, and treatments, perpetuating myths and stereotypes regarding autistic learners. Worth (2005) and Hanbury (2005) both speak of autistic people’s ‘inflexible thinking and impaired imagination’ leading to ‘disordered play skills’. Worth (2005) states that autistic people will always have difficulties generalising between contexts, due to their literal thinking. Here a monotropic style of processing (Murray, 1992; Murray et al., 2005; Lawson, 2010; Milton, 2012b – see Appendix B1: Overview of related articles) is constructed as dysfunctional for the autistic individual, the people around them, and society at large. Peeters and Gillberg (1999) suggest that autistic people are hyperrealists living in a world of surrealists, with autistic people lacking an awareness of symbolic exchange. Here imagination is defined as the ability to transcend the literal translation of perceived phenomena, ‘needed’ for communication, social behaviour, and play activities. “People with autism do not reach the stage of playing with a meta-reality, or if they do, then only with extreme difficulty...People with autism understand symbols only with great difficulty.” (Peeters and Gillberg, 1999: 6-7). Hewitt (2005) suggests that autistic people fail to decipher social situations and ‘act appropriately’ within context: “All individuals with autism are regularly challenged by their natural inability to decipher and react appropriately to different social situations.” (Hewitt, 2005: 18). Hewitt (2005) only mentions personal space or proxemic challenges associated with autism with regards to autistic people invading the space of others, and not 39 those who have an acute need to protect their own. This tendency is part of a wider trend to see autism in terms of those who are hyposensitive and present with ‘challenging behaviour’ and thus, as Williams (1996) suggested, ignoring the needs of more passive-natured pupils. “Whilst by no means a necessary consequence of autism, there are associations between autism and aggressive behaviour which are the result of the frustrations and fears people with autism experience.” (Hanbury, 2005: 21). Other myths and inaccuracies perpetuated by educational texts include: Asperger’s is only a ‘mild impairment’ (Worth, 2005), that people with Asperger’s have motor clumsiness and more ‘classically’ autistic people do not (Jordan and Powell, 1995; Worth, 2005). Some stereotypes are not always upheld however, for instance Jordan and Powell (1995) suggest that it is a myth when autistic people are perceived as having poor concentration, and suggest that the problem is that the autistic pupil may not be attending to what the teacher wishes them to attend to, due to an idiosyncratic use of attention. They cite Courchesne, Saitoh, Townsend, and Yeung-Courchesne (1994), who related attentional problems to an abnormal brain structure, and argued that a simple delay in switching attention would lead to many of the difficulties seen in autism (giving possible evidence to support Monotropism theory). Although Jordan and Powell (1995) critique one of the myths of autism here, they still see a ‘problem’ in the way autistic people use their attention. 40 One of the most pervasive narratives regarding autistic people is that they have a deficit in understanding social behaviour, for Jones (2002) this is autism’s most disabling feature. Jones (2002) suggests that autistic people are either unaware of, or lack regard for social consequences, lacking a ‘social intuition’, and having to make conscious effort to figure such things out ‘scientifically’. This may well be the case, and that is evidenced in autobiographical accounts (Grandin, 1995; Tammet, 2006). However, a scientific (or sociological) imagination is assumed to be a major disability when compared to a social intuition, again placing the disability within the internal impairments of the individual, and not the social nexus that they inhabit. It has been argued by the author of this thesis however, that when attempting to empathise with autistic people, non-autistic people also struggle and have to figure out the intentions and motives of autistic people in a systematic or ‘scientific’ manner (Milton, 2012a; 2014a – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). Whilst Jordan and Powell (1995) give prominence to a psychological explanation of autism being able to inform educational practices, they highlight two less commonly mentioned features of autistic thinking, and do so in a sympathetic way to the autistic person. These features are the way information is processed, stored and retrieved from memory, and the role of emotion in these processes. For Jordan and Powell (1995) and Jordan (1999a), autistic people often have a strong serial, factual, or rote memory, accompanied by difficulties in autobiographical, or episodic memory. They suggest that autistic people are cue dependent, and have difficulties in putting one’s ‘self in the picture’, for example, Grandin (1995) stating that she perceived memories in a way analogous to 41 watching videos. For an episodic memory to develop, an evaluative appraisal of one’s emotional connection to events is needed. Not just the memorising of facts, but a sense of personal significance attached to events. Problems of connection to emotional appraisal can also lead to challenges formulating goal driven intentional behaviour, so often autistic people become reliant on learnt habits, which then fall into difficulty when interrupted or out of context (Jordan and Powell, 1995). These differences between the way non-autistic and autistic people process information leads to many of the misinterpretations between them, for instance, the misinterpretation of autistic behaviour as having social intent when it may not (Blackburn, 2011). For Jordan and Powell (1995), the development of a personal autobiographical memory should be an explicit and pervasive curriculum aim, so that autistic people can learn to be subjective and to learn through this subjectivity. They suggest that rote learning of social skills in small steps can create as many difficulties as it solves, without the social flexibility of an experiencing self. They suggest that one has to be careful as a practitioner with regards to imposing social behaviour on someone who has little interest in it, so it is important that this is a meaningful choice, and not a by-product of not knowing how to make and maintain friendships. The issue of the fragmented nature of memory in autistic experience and the problems created by the breaking down of tasks into component parts have also been theorised and critiqued by the author of this thesis (Milton, 2014a, 2014b – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). 42 Jordan and Powell (1995) suggest that there may be a fundamental difference in the way that low self-esteem is experienced between neurotypical and autistic people. For example: an autistic person may be more likely to feel a dissatisfaction in the way they are treated by others, rather than from the opinions of others (which may not be internalised, e.g. fashion, and personal hygiene), thus perhaps showing a sociological understanding of injustice, rather than an introspective or ‘social/intuitive’ understanding of status. How one perceives autism, naturally leads to a perception of what is considered best with regard to educational practice. One of the most prevailing trends is that of the notion that the most important educational period in an autistic person’s life is pre-school and the first few years of school. This discourse has produced an ever-growing range of early interventions. It is interesting to note that this emphasis is at a time when the autistic person themselves has no say in the matter. These methods, although aimed at early childhood development, have also been used by schools throughout the curriculum (Challenging Behaviour, 2013; TreeHouse, 2015) and have also been applied to adult services. One of the most controversial of early intervention techniques is that of Applied Behavioural Analysis (ABA) developed through the work of Lovaas (1987), and supported by many practitioners (Challenging Behaviour, 2013; TreeHouse, 2015), theorists (Hewitt, 2005; Brock et al., 2006; Hastings 2013; Dillenberger, 2014; Keenan, Dillenberger, Rottgers, Dounavi, Jonsdottir, Moderato, Schenk, Vireus-Ortega, Roll-Pettersson, and Martin, 2014; Keenan, 2015), and parents (Maurice, 1993, 43 Dillenberger et al., 2015), and yet other theorist and practitioner literature either place it upon a level playing field with other approaches (Jones, 2002), or suggest that it is a flawed approach (Jordan, 1999a). Fitzpatrick (2009) criticises the study of Lovaas (1987) as a small and flawed study, where the results have never been replicated, and the use of aversives has since been abandoned. A study by Remington et al. (2007, cited Fitzpatrick, 2009) compared those who had home-based ABA to those who did not, over a two-year period. Using measures of intelligence, language use, daily living skills, and a statistical measure of ‘best outcomes’, the majority made no significant advances. Magiati, Charman and Howlin (2007), found no significant differences in a range of outcome measures either, although large differences were found regarding outcomes within both control and experimental groups. Hogsbro (2011) found that on average, ABA provision had a negative impact on a number of standardised measures. Yet, the parents of children on such programmes were found to hold the highest expectations for their children’s educational progression, and professionals and parents using this model subjectively rated improvements higher than all other groups. Such evidence raises serious questions as to the validity of the anecdotal accounts of change, and thus with claims made by behaviourist writers. “Another way to decide what to teach a child with autism is to understand typical child development. We should ask what key developmental skills the child has already developed, and what they need to learn next. The statutory curriculum in the countries of the UK also tells us what children should learn. Then there are pivotal behaviours that would help further development: teaching communication, 44 social skills, daily living or academic skills that can support longer-term independence and choices.” (Hastings, 2013). Despite contemporary behaviourist theorists such as Hastings (2013) favouring a version of ABA called Positive Behaviour Support (PBS) and claiming to use a non-normalising social model approach, it is clear from the above passage that a normative approach to child development and education is being utilised. Such a view can be contrasted with autistic and wider disabled activist accounts regarding behavioural intervention: “Because most of us are not ill at all, but have injuries or genetic conditions of a permanent nature, the goal of ‘getting better’ is impossible to achieve, but changing the way we are treated as disabled people is possible. Therefore the social model is full of hope for us.” (Mason, 2005: 57). Fitzpatrick (2009) suggests that ABA may benefit some autistic people, but not the majority, with some making improvements without any intervention being used. He suggests that researchers are no further advanced in discovering which children will make improvements, or which aspects of the intervention are having a positive effect. Even then, what constitutes positive effect is highly contested. Autistic researchers (Dawson, 2004; Milton and Lyte, 2012; Milton, 2014b – see Appendix B1: Overview of related articles) have been quite scathing about ABA theory and practice on a number of levels. These concerns are also found amongst some parental (Milton, 2012c – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles) and practitioner accounts. 45 “...the whole ABA movement appears increasingly more like a cult than a science: there is a charismatic leader, a doctrine, a failure to engage with criticisms, inquisition and denunciation of any who criticise (however mildly), misrepresentation of critics, and proselytising exercises to gain more converts and spread the word.” (Jordan, 2001, cited Fitzpatrick, 2009: 141). Nadesan (2005) argues that ABA has many methodological shortcomings and practitioners and theorists tend to exaggerate its benefits, yet has much potential to shape the development of autistic children (for better or worse), producing certain kinds of subjects requiring professional surveillance and intervention. She argues that in such an instance ‘biolooping’ (Hacking, 1990, 2009) is inevitable, but may be difficult to identify and predict. “Given the dangers of [ABA] inappropriate early diagnosis, the lack of replication, the lack of specificity, the ethically and culturally questionable nature of the ‘treatment’ and its impractical and expensive nature, like all other treatments that have claimed to be specific to autism, it has failed to establish itself as a definitive treatment.” (Timimi et al., 2011: 204). Another early intervention approach that has developed is that of the ‘Option’ or ‘Son-Rise’ method (Kaufman, 1994). This takes a child-centred approach, where ‘mentors’ need to show interest in what the child is interested in, with energy, excitement and enthusiasm, with a balance being struck between following the child’s actions and requesting from the child. This programme costs a great deal of money, and makes highly dubious claims of having ‘cured’ people of their autism, even using a religious discourse of ‘miracles’ being possible. This 46 approach can also be criticised as being too intense, or for not promoting independent play (Jones, 2002). Another popular approach is that of TEACCH or ‘structured teaching’ (Schopler and Mesibov, 1995, cited Jones, 2002). Focusing on what many would consider an autistic strength: visual processing, and using visual timetables and cues; the techniques are transferable to the home environment. Jones (2002), however, suggests that the technique can make autistic people dependent on such communication tools. It is also the case that not all autistic people are visual learners, and thus assuming this as a generalisation would likely lead to hindering educational progress. Other communication techniques include: Makaton (Walker, 1980, cited Jones, 2002) sign language, debatable in terms of efficacy with autistic people due to utilising multiple channels of attention and self-reflection, and the Picture Exchange Communication System or PECS (Bondy and Frost, 1994, cited Jones, 2002) an early intervention strategy, aimed at encouraging initiation. This technique is slow to build progress, and can be used into adulthood, but is criticised for being potentially constraining and could also foster dependence on the communication tool (Jones, 2002). One strategy for helping autistic people manage difficult social environments is that of ‘Intensive Interaction’ (Nind and Hewett, 1994; Hewett and Nind, 1998; Kellett and Nind, 2003), which was developed from practitioners working with people in long stay hospitals with ‘very complex needs’. This approach gives meaning to the actions of individuals, through utilising the language of the person 47 being worked with, and incorporates such expressions into turn-taking routines, and evolved out of an increasing dissatisfaction with behavioural techniques for not promoting ‘real learning or education’ (Kellett and Nind, 2003). Following transactional approaches to the study of communication, Nind and Hewett (1994) argue that learners needed a reason to communicate in order for language to develop. Unlike behavioural techniques, this approach perceives learners to be active participants, rather than passive objects to be conditioned and modified, and thus can be seen as aligned with a more progressive educational ideology. Intensive Interaction borrows from the nurturing interactive style that caregivers give infants, although added to this the need for reflection and evaluation, which was structured and enabled progression, and developed within a team teaching environment. A plethora of other techniques abound in the ‘treatment’ of autism, the vast majority of which being flawed in their appraisals, and lacking autistic subjective input. ‘Daily life Therapy’ (Kitahara, 1984, cited Jones, 2002) promotes conformity to social norms, where ‘inappropriate behaviours’ are reduced, and with little opportunity to engage in self-chosen activity. The only benefit from such a technique in this researcher’s opinion is the benefits of regular physical exercise connected to the programme. The ‘Circle of Friends’ approach as supported by Taylor (1997) aims to strengthen the relationships a person has with others, in order to build a support network, which could also continue beyond the school setting. 48 “...sometimes individuals need to be guided towards more suitable friendships, if their preferred one is deemed unsuitable.” (Hewitt, 2005: 103). The ‘Social Stories’ approach (Gray, 1994; Rowe, 1999) utilises visual depictions that contain stories that show a description of an event, the perspective of others, and directive statements (what the child should try and do), advised to be phrased as advice rather than commands. Both of these latter approaches however, can be seen as problematic if imposed from an outsider perspective that excludes the autistic ‘voice’ within their implementation. For Jones (2002), given the range of needs that autistic people have, it is unlikely that a single approach would be appropriate for all children. For Jones (2002) however, there is a growing ‘consensus’ amongst practitioners as to the common features of ‘successful approaches’ to the education of autistic people. Things included in this consensus are: Involving parents, clarity of instructions, having sensitivity to sensory difficulties, developing joint attention and communication, allowing sufficient time for information processing, taking into account the pupil’s view, utilising special interests, acknowledging differences between people ‘with autism’, supporting transitions, taking a long-term perspective, and providing regular exercise. These factors would be agreed upon by this researcher, but it has been shown above, are not perceived by all practitioners or in the educational literature. As part of this consensus, Jones (2002) also includes: the need for ‘early intervention’ and a ‘functional’ approach to ‘managing behaviour’. It can be argued however, that a functional approach to autistic people (particularly with regards to managing their behaviour, especially attempts at normalisation) has 49 caused much of the ‘psycho-emotional disablism’ (Reeve, 2011; Milton and Lyte, 2012 – see Appendix B1: Overview of related articles) of autistic people. Jordan and Powell (1996) suggest that whatever the ideology of a practitioner, there is a tendency toward what they term ‘therapist drift’. Therapist drift occurs where practitioners, particularly those utilising forms of interaction less natural to those receiving an educational intervention, drift toward a more natural form of interaction, and conversely, those using a child-centred approach may find themselves taking on the role of a professional teacher within certain interactions. Due to ‘therapist drift’ as outlined by Jordan and Powell (1996), it may be the case that in practice there is more similarity between those espousing differing intervention models than practitioners claim. Other factors often referred to in the educational literature regarding autism are that of peer awareness, the use of learning support assistants, break times, and bullying. Hanbury (2005) stresses developing the awareness of peers regarding autism, by examining the difficulties faced by their autistic classmate (although with ‘great sensitivity and respect’). Amongst their suggestions however, were: listing their classmate’s strengths and weaknesses. Hanbury (2005) suggest that a balance needs to be struck between the needs of the autistic pupil and the needs of the whole group, and to explain sensitively why some things are acceptable for them and not others in the group. Worth (2005) suggests that practitioners should ask for permission from the autistic child’s parents before approaching this issue with classmates, and that the word ‘autism’ does not have to be used. Jordan (2006, cited Feinstein, 2010) argued for the use of ‘reverse 50 integration’, in other words: introducing neuro-typical children to an autistic class environment. Jordan and Powell (1995) argue that pupils can become segregated with their support worker within a mainstream context, whilst Worth (2005) suggests that the role of Learning Support Assistant is to engender the independent learning of social skills, and that staying with an ‘ASD child’ continuously would be a misperception of the role. Although they give the caveat that it may take more time to help engender the skills to be independent (if possible at all). Hewitt (2005) suggests that the ultimate goal for the education of autistic people was to promote independence, with a gradual and discreet withdrawal of support to this end. A study by the Autism Education Trust however (AET, 2011), suggests that this may be an imposition of neurotypical values upon the autistic population, where autistic people were interviewed, they expressed needs for interdependence. One area generally agreed upon to be an issue for autistic people is unstructured time within educational environments: “Pupils commonly find these naturally noisy and chaotic times difficult to cope with, leading many of them to resort to inappropriate self-comforting behaviours.” (Hewitt, 2005: 107). 51 However, in the above example, this stress inducing context is linked to the production of inappropriate behaviours. Worth (2005) suggests that a suitably trained assistant should be supporting autistic people at break times (without stating what kind of training would be sufficient). “...some children may be fearful and this may result in ostracising, bullying or mocking the child with autism.” (Hanbury, 2005: 23). Here, Hanbury (2005) frames bullying in terms of problems internal to the autistic child and the fear of them felt by non-autistic children. The discourses presented above regarding peer awareness strategies, LSAs, break times, and bullying, highlight just how uncritical and lacking in thorough exploration of these issues the discourses that pervade educational literature regarding autistic people can be, and the lack of fully listening to autistic ‘voices’ that also pervades such texts. “Accordingly, in the case of Asperger’s syndrome, the formal determination of pathology is at once arbitrary and political because it preserves the status quo from critical interrogation: for example, bullying behaviour is “normal” but specialised and encompassing interests are pathological.” (Nadesan, 2005: 202). Literature regarding educational practice and autistic people often suggests the need to work closely with parents, framed as essential for effective practice, for instance in providing a consistent approach to the child (Hanbury, 2005; Hewitt, 2005; Worth, 2005). However, none of these texts mention the involvement of 52 autistic people in educational practice, or the involvement of the ‘voice’ of the autistic child being ‘practised’ upon. “People with AS are often very used to being told by people without AS what they should and should not do, or what is right and what is wrong. They are used to other folks not understanding or even asking their opinions on things or the reasons behind their behaviours.” (Bliss and Edmonds, 2008: 41). Jones (2002) acknowledges ‘special interests’ as a driving force in an autistic person’s life, and something to be built upon in terms of learning, yet warns of such activity being pursued at the expense of everything else. However, some theorists are more positive about such interests, for instance Murray (1992) as well as Jordan and Powell (1995) argue for the building upon of already existent interests (and not working against them). Bliss and Edmonds (2008) suggest that the best approach to ‘treating’ autism is by noticing the strengths and skills that people already use to get through their daily lives. “The practical aspects of getting people to use these skills are a challenge. We should put emphasis on the things they can do, rather than those they can’t.” (Howlin, cited Feinstein, 2010: 281). For Hanbury (2005), good practice in the field of autism education is attainable by anyone, and it is a myth to suggest that the skills needed to be a good practitioner are exclusive to the “weird and wonderful”; they suggest such assertions to be “amongst the least helpful”. However, what indeed may be the least helpful advice would be to suggest that anyone could teach autistic people without thorough 53 training and work experience, or that the “weird and wonderful” neurodiverse community would have nothing to contribute to such practice. Hewitt (2005) argues that autistic people should be integrated into mainstream settings where possible, in order to offer them equal opportunities and the best preparation for “real life”. However she does see difficulties with such integration, as mainstream settings require the integrated use of the three attributes in which autistic pupils have impairments (referred to as the ‘triad of impairments’ – Wing and Gould, 1978), leading to an ongoing enormous effort just to fit in, placing immense pressure on an individual. Hewitt (2005) suggests however, that all schools can be inclusive of autistic pupils (although she fails to give an account of the structural problems that disable people, e.g. class size and size of school as a whole). Jones (2002) and Hewitt (2005) argued that all educational strategies should take into account staff resources available, thus taking on an ideology of what is seen to work within the current system, rather than critiquing it on a macro-level. Such an aversion to exploring sociological and political issues can also be seen in other educational texts (Jordan, 1999a). By defining autistic people as a disordered other, as is often the case in practical toolkits written for educational professionals (e.g. Cumine et al., 1998; Hagland and Webb, 2009), a notion that autistic people are incapable of self-determination or analysis is constructed and that their problems must be managed by professional outsiders in order for them to live more “appropriately in normal 54 society”. The task of eliciting the ‘voice’ of autistic children could however, become a complex issue to investigate. “We lack evidence concerning the authenticity, credibility and reliability of particular methods of exploring the views of children with learning difficulties” (Lewis, 2004: 4). Lewis (2004) points out a very difficult barrier to overcome in research in this area, is how to elicit the views of pupils with more severe communication difficulties. Williams and Hanke (2007) in wishing to select a practical tool for eliciting the views of pupils, adapted the ‘drawing the ideal self’ technique (Moran, 2001, cited Williams and Hanke, 2007), in order to examine the views of 15 mainstream pupils with a diagnosis of ASD on what they thought were the important features of school provision. By utilising Personal Construct Theory (PCT), Williams and Hanke (2007) examined the core constructs that children had about school provision, and recommended that improvements could be made to current placements in terms of environment, understanding and curriculum. The potential usage of PCT in various settings with autistic people has also been theorised by the author of this thesis and others (Greenstein, 2013; Milton, 2014c). 2.5 Literature regarding emancipatory and participatory research This project takes an emancipatory critical stance and an insider view, in the sense that the researcher has a diagnosis of Asperger syndrome, is a parent of a ‘severely affected’ child with a diagnosis of autism, and has a career background 55 in education. Critical theorists argue that it is essential to make one’s political and moral values transparent, as they reason that the notion of value-free knowledge about the social world is an illusion. A positivist notion of objectivity requires the researcher to stand outside of their own positionality. The impossibility of such a position is criticised most strikingly by the philosopher Nagel (1989) who referred to such a perspective as ‘the view from nowhere’. According to the critical theorist Mannheim (1936), the production of knowledge is never neutral. Scott and Usher (1996) suggest that social research is always of a political nature, whether it is made explicit or not, as research is constrained by what is termed as legitimate and is thus implicated in power relationships. Postmodernist views present research as a socially and historically located practice and distrust absolutes and foundational truths in favour of relativism. Thus, according to this view, following positivist method will not guarantee ‘true results’ (Lyotard, 1984). Post-positivist/modernist research can be characterised by an anti-essentialist position on knowledge. Lyotard (1984) sees positivist knowledge as being a culturally located discourse which cannot escape its own ‘cultural confusions’. Therefore, in post-positivist/modernist research, issues of reflexivity and discourses of power also feature strongly. However, postmodernist praxis can be criticised for its lack of emancipatory effect and for a total refusal to accept that some discourses may be more accurate at describing the noumenal world, leading to the dubious conclusion that one truth may be as good as any other. This may be true of the phenomenal world, yet not the noumenal. 56 According to Scott and Usher (1999), positivism is losing its dominance in the social sciences, but not in the hard sciences or in a bureaucratic society reflecting technical, rational principles and policy making. Wider public appreciation of non-positivist methodology still seems to be hampered by what Weber described as the ‘Iron Cage of Bureaucracy’ (Weber, 1958). Recent educational policy has championed the use of an ‘evidence-based’ model derived directly from that applied in medical practice, especially pertinent to autism given the conflation of education with medical treatment in intervention research within the field. Such evidence is based on aggregated large-scale data patterns, leaving atypical experiences as anomalies. The critical theorist Habermas (1984) suggested that both the positivist and interpretive paradigms neglected the political and ideological situatedness of educational research. Habermas (1984) criticises Interpretive methodology for producing a ‘double hermeneutic’ as researchers attempt to interpret an ‘already interpreted world’ as a commentary rather than a criticism. The critical theory of Habermas (1984) by contrast, sets out to: “…emancipate the disempowered, to redress inequality and promote individual freedoms” (Habermas, 1984: 28). Consequently, the focus of the proposed research is empowerment of the autistic community (with regard to Autistic people themselves), a group which is largely powerless and ‘voiceless’ until fairly recently. Possibly like no other area, 57 research into the education of autistic people has been from an outsider perspective. For many years research has been dominated by Psychoanalysis, Behavioural and Cognitive Psychological approaches (Bettelheim, 1967; Lovaas, 1987; Baron-Cohen, 1995, 2008), and/or a biomedical model. One of the main ethical issues raised by this thesis, is not to create a ‘new regime of truth’ (Gore, 1993), but to reflect the subjective ‘voice’ of the participants without unwittingly subverting it. Thus, by using hermeneutic methodologies (discourse/textual analysis of the narratives of autistic people) and the utilisation of Q-sort methodology (explained in Chapter 3: Methodology), this thesis intends to allow space for the voices of a group that traditionally have been marginalised, which in itself would be an empowering act. Rather than attempting to be a fully neutral observer however, this researcher’s own positionality will be laid bare for scrutiny. “But my personhood is intact. My selfhood is undamaged. I find value and meaning in life, and I have no wish to be cured of being myself. Grant me the dignity of meeting me on my own terms…Recognise that we are equally alien to each other, that my ways of being are not merely damaged versions of yours. Question your assumptions. Define your terms. Work with me to build bridges between us.” (Sinclair, 1993). 2.6 Summary of the Literature review Throughout this literature review a diversity of educational ideologies were uncovered, with a distinct difference in emphasis between some of the priorities voiced by autistic activists and scholars and the narratives expressed within practice guidance materials. These differences in viewpoint revolve around where educational difficulties are located, with the former focusing on social issues such 58 as the learning environment and the attitudes and understanding of others as well as highlighting the interests and potential abilities associated with autistic ways of learning, whereas the latter focuses efforts on the perceived educational impairments and deficits located in the autistic mind. Such differences in educational ideology seem to reflect deeper differences regarding the ontological status of autism, framed either within a largely social (or post-social) and medical model of disability. Such a lack of consensus within the field between stakeholder groups regarding what autism is, will inevitably lead to contentions over educational ideology and practices. The philosopher Ian Hacking (2009) suggested that autistic people are creating a language with which to talk about autism and autistic ways of being, yet it would seem from this literature review that the concerns of autistic activists and scholars are generally speaking, not being represented within much educational practice guidance. On the basis of the literature review, the key issues in the field of autism and educational ideology would thus seem to revolve around such differing models of disability. Consequently, within the literature, a full range of approaches and viewpoints are available and seem to be promoted by differing stakeholders for differing reasons. Following on from the literature reviewed in this chapter, it was found that there were somewhat differing discourses being utilised by autistic people in comparison to the educational advice given by academics in practice guidance materials. This led to the following key research questions being defined for this thesis: 59 - What discourses are being used by relevant stakeholders in the narrative construction of views about educational priorities for autistic children of secondary school age? - What commonalities and tensions exist between (and within) the subjective constructions of stakeholders regarding the education of autistic children of secondary school age? The next chapter considers the methodology and sample, and the ethical issues arising in conducting this research. 60 Chapter 3: Methodology “Every discourse, even a poetic or oracular sentence, carries with it a system of rules for producing analogous things and thus an outline of methodology.” (Jacques Derrida, cited from brainyquote.com, 2015). 3.1 Introduction Following on from the literature review given in Chapter 2, it was found that there were somewhat differing discourses being used by autistic people compared to the educational advice given by academics in practice guidance. This led to the following key research questions being defined for this thesis: - What discourses are being used by relevant stakeholders in the narrativeconstruction of views about educational priorities for autistic children ofsecondary school age?- What commonalities and tensions exist between (and within) the subjectiveconstructions of stakeholders regarding the education of autistic children ofsecondary school age?When looking at the ideology and priorities of differing stakeholders with regard to the education of autistic children, a number of subject positions need to be considered, for example: not only autistic children and young people, but also older adults, all too often a resource that is under-used in the writing of practice guidance (see previous chapters), both fathers and mothers of autistic children, 61 practitioners working with autistic children, and the academics who research, theorise and write guidance about autistic people. Of course, many in the field of autism, like myself (the researcher), have experience of occupying all of these intersecting positions, and such multiple positionalities need to be taken into account when looking at tensions and common ground within and between stakeholder groupings. When researching subjective views and ideology, a number of differing research methods can be utilised, from highly quantitative large-scale opinion polls and surveys to in-depth qualitative case studies. Due to the emancipatory ideals informing this thesis, a purely positivist approach would not be appropriate, yet survey designs can of course incorporate qualitative and open-ended elements and can potentially reach a large audience. In contrast, interview style methods are preferable in regard to exploring in depth, the nuanced meanings and understandings that participants have in constructing their narratives regarding educational priorities for autistic children. Therefore, in the early part of the progression of this thesis, a number of pilot studies were conducted to explore the topic of educational ideology and autistic students. These included small-scale interview and survey studies with parents of autistic pupils, as well as a project involving an online sociology study group for autistic adults. All of these pilot studies were conducted following the advice of the British Educational Research Association (2010) and the British Psychological Society’s guidelines for research with human participants (2009) of informed consent, right to withdraw, anonymity, and use of data; the only partial exception being the research interviews, which were conducted using a public forum website: Talkaboutautism.org, where 62 participants were fully aware that this would be the case. These interviews would also have been removed from the website if the participant chose to do so (see Appendix A1: Ethical clearance for thesis). Upon reflection, it was found that all of the pilot methodologies utilised could be appropriately applied to the research questions originally outlined. Although collecting interview data is thought to be more time consuming and more problematic than collecting survey data (Bryman, 2004; Creswell, 2009), this was not found to be the case, particularly with regards to online interviews, which were easy to complete for both researcher and participant, and led to rich and in-depth responses, allowing for more nuanced analysis of the complexity of the data produced. This methodology, along with the action research project were both considered more supportive of participant needs and ‘voice’ and more likely to lead to emancipatory insights than a questionnaire. The concerns of parents and professionals (with perhaps the exception of fathers) are perhaps more easily found and widespread, which would mean more structured and targeted research questions may be achievable and beneficial with this demographic. When researching the ‘autistic voice’ however, it would seem pertinent to act with sensitivity and employ a more participatory and exploratory research method than a questionnaire could provide in relation to the research questions. Despite concerns that interviews may produce a ‘paralysis of response’ (Lewis, 2004) from autistic participants, it was found in these pilot studies, that all of the participants (both parents and autistic people) were more than willing to share their views and perceptions of educational practices. In fact, many were pleasantly surprised that anybody was asking them in an open-ended format. 63 Strengths and weaknesses were found with all of these piloted methods, yet following this process, a differing methodology was also found that seemed to balance the need for objective measurement with that of the nuances of qualitative meaning that participants expressed, namely: Q-sort methodology. I was introduced to Q-sort methodology (Stephenson, 1935) as a potential way to address the research questions of this study. It became clear that this method would indeed be beneficial in terms of collecting both quantitative and qualitative data on the topic and to potentially give extra nuance and depth to responses, by supplying information and structure to participants, as well as flexibility. In the first few sections of this chapter (Sections 3.2 to 3.4) an overview of these pilot studies are given, before an analysis of the various pros and cons of these methods for the purpose of exploring the research questions outlined (Section 3.5), and explaining how the researcher came to the decision to adopt the Q-sort method for this thesis (Section 3.6). Sections 3.7 and 3.8 report on two pilot studies carried out utilising this method and the results that were found. These sections are followed by sections regarding epistemological concerns of using the Q-sort method (Section 3.9), a review of the design of the study (Section 3.10), sampling techniques employed (Section 3.11), participants who took part in the study (Section 3.12), methodological procedures utilised in the study (Section 3.13), the analytical techniques employed (Section 3.14), ethical concerns (Section 3.15) and finally a statement regarding researcher positionality (Section 3.16). 64 3.2 Pilot survey A pilot project involving a survey of educational attitudes and perceptions of parents of autistic children was undertaken (Milton, 2012c – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). The survey had a specific focus, in that it aimed to measure if there was any correlation between parenting styles and the educational ideologies that parents adopt. Such a correlation was not indicated, but a diverse set of views was expressed (Milton, 2012c – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). Twenty-six parents of autistic children took part in the study (all mothers). Through the use of both survey questions and vignettes of popular educational models, the parents in this survey indicated a preference for family-oriented approaches such as TEACCH and SCERTS (without indicating any knowledge of SCERTS as an approach), but less favouring was given to Intensive Interaction and traditional ABA methods, with parents commenting that they were against ‘normalisation’, but wanted a balance between pupil-led and teacher-led activities. 3.3 Pilot interviews The interviews were piloted on personal contacts, and online, through the Talkaboutautism.org website (an online forum set up by the Ambitious about Autism charity primarily directed at parent of autistic children). When conducted face-to-face, the interviews took between 30-40 minutes to complete and were 65 recorded using Olympus Sonority software, whilst through online e-mail they spanned a few days using posted responses to a forum. Although not all potential respondents own a computer, this diversity of response mediums and channels not only helped response rates, but assisted many of those on the spectrum themselves to fully express their views (as was mentioned during interviews). The use of this methodology was designed to elicit the discourses of both parents of autistic children and autistic people, with the intention of being analysed using a thematic analysis and a discursive analysis of subject positions, and interpretative repertoires utilised (Potter and Wetherell, 1987). Seven pilot interviews were undertaken in total. The results of these indicated some negative educational experiences, such as the lack of autism-friendly environments and experiences of bullying (Milton, 2012c – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). 3.4 Pilot project: the online sociology group A pilot study was undertaken involving a small group of participants (nine, including this researcher), studying and discussing the subject of Sociology on an online forum. This pilot study was reviewed for a published article (Milton and Moon, 2012 – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). This group was mutually formed through contacts on an online forum, with equality of status between participants, with the researcher acting merely as a facilitator who could suggest activities and materials to read and discuss. The group did not have a formal structure or assessments of any kind. Participation in the group ranged from occasional comments to very in-66 depth engagement, often due to pressures over the use of their time. Some important key findings were found from this study, including common discussions of how the participants in the group felt how their needs were not met in previous educational experiences and a common experience of ‘psycho-emotional disablement’, in which one’s psychological and emotional wellbeing is negatively affected by the disabling effects of social attitudes and structures (Reeve, 2011). Another key finding was how a recognition and connection was found between the participants in the group which formed a healthy camaraderie between them and enhanced their learning experience. 3.5 Discussion of initial pilot studies The pilot studies outlined in Sections 3.2 to 3.4, all produced interesting and relevant findings that informed the progression of this thesis. However, significant drawbacks were found with each method in regard to answering the proposed research questions for this thesis. In order to cover a range of topics, the survey pilot design became long and quite cumbersome. Although a number of participants were willing to participate through this format, for those with more pressure over their time, a long survey format was unwieldy. A shorter survey could be administered to a greater number of participants, but that would have constrained the amount of data collected and the ability to analyse the tensions and common ground between perspectives in any depth. Closed survey questions could be seen as leading or constraining the answers participants give, whilst too many open-ended questions could be viewed as too vague and difficult to answer. Similarly, with the interview method, administrating an interview 67 schedule either online or face-to-face can be a lengthy process for just a short number of questions, and could become potentially unwieldy. It was also found that it was more difficult to recruit potential participants who were willing to spend more of their time to participate in this way. Participants taking part in this pilot did appreciate the ability to answer questions online and in their own time however, particularly autistic participants, as one could reflect and deliberate over answers before sending them to the researcher. This method also produced in-depth qualitative data that unveiled some of the deeper meanings behind the discourses being utilised by participants. For these reasons, this method was adapted to be part of the main study (in the form of follow-up interview questions to the main study – see section 3.10). Upon reflection, the action research project was found to be a highly effective method, and also empowering to some of those who took part, yet not an appropriate method to help answer the proposed research questions, particularly in regard to the secondary school age-range. Although such methods have been used to good effect in finding out the views of children and young people (Greenstein, 2013), it was felt that this method would not be the most effective in analysing the tensions and common ground between differing stakeholder perspectives regarding educational ideology. In general, one of the most pertinent difficulties encountered was how to access willing participants who had enough time and energy to participate. It became clear through this process that technology such as the internet vastly increased opportunities for the researcher to access the sample population. It also became apparent, from the autistic people that took part in this pilot research, that face-to-68 face interactions can be difficult to navigate, and that many felt that they could clearly express their opinions more easily in written format online. 3.6 Introduction to Q-sort methodology Following the experiences of conducting the pilot studies outlined in Sections 3.2 to 3.5 and in reflecting upon how to balance the need for accessibility with depth of response, it was suggested to the researcher that a potentially useful methodology would be that of the Q-sort method. In this section an introduction to this methodology is given, and reasoning as to why this methodology was chosen to frame the design of this study. Q-sort methodology was devised by the psychologist William Stephenson (1935; 1953), as a way of analysing personal experience and subjectivity. The methodology involves participants sorting and ordering a set number of items (usually statements about a topic). Through the sorting process, participants provide a visual representation of their viewpoint, which can then be compared and contrasted with those of other participants in order to pull out common factors (ideal models of common threads running through differing perspectives). This process is followed up by discussions which can be analysed qualitatively and compared with findings from the statistical analysis. 69 Instead of being passively subjected to the measurements of researchers, in Q methodology, participants are presented with stimulus items (the Q set) and asked to actively rank them according to their psychological significance in relation to a question posed. In the process, Q methodology provides a holistic matrix for each individual point of view in relation to the stimulus items. With its ability to capture the holistic view of participants, rather than dissecting them, Q methodology offers a means of systematically identifying the range of distinctive subjective standpoints in a given context. Within psychological research, Q-methodology gained few advocates, despite the methodology gaining some popularity in the fields of communication and political science (e.g. Brown, 1980). Brown (1997) regarded the lack of traditional interest in Q-sort methodology within psychology as due to adherence to Newtonianism and psychometric testing. More recently however, the methodology has gained favour with postmodern critical psychologists in studying subjectivity (Stainton-Rogers, 1991; 1995; Stenner and Stainton-Rogers, 2004), and within exploring attitudes to health (Ahmed, Bryant, Tizro, and Shickle, 2012; Risdon, Eccleston, Crombez, and McCraken, 2003; Cross, 2015). Q-sort methodology has also been used in the field of autism-related research, for topics such as parental views of their child’s attachment (Rutgers, van Ijzendorn, Bakermans-Kranenburg, and Swinkels, 2014) or learning of social skills (Locke, Kasari and Wood, 2014). In Q-methodology, the volume of statements that can be made on a particular topic was originally referred to by Stephenson (1953) as a population or trait 70 universe, yet was later renamed the ‘concourse’. The concourse of any given topic would include anything from everyday public opinion to academic scholarship. From this vast array of views and opinions, the researcher must draw out a Q-set (sample of statements) that is representative of this array to be used for experimental purposes. Although statements for a Q-set are selected for their representativeness of the concourse, a priori meanings of the statements are of less importance than the meanings attached to the statements that participants use themselves in the course of the Q-sort study. For Stephenson (1953), the factors that emerge from Q-sort methodology represent ‘operant subjectivity’. Each Q-sort representing the unique viewpoint of an individual participant’s engagement with the Q-sort items, yet analysable through factor extraction. Stephenson (1953) argued that in traditional norm-based methodology as devised by Cyril Burt (1937), this reduced an individual’s subjectivity to passivity, and also argued that such factor analysis outcomes are dependent on the measurements of analysis used to explain factors, potentially leading to a tautology. In Q-sort methodology however, the measurement that takes place is from the participants’ standpoint. Intrinsic to the principles of classical psychological methodology, effects are seen as determined by distinct causes, as can be seen in the use of independent and dependent variables, yet in Q-sort methodology there is no quantity asserted to explain a psychological event. Thus a Q-sort does not attempt to measure variables, but subjective states. Q-sorts are thus said to emerge from an individual’s understanding and are freer from intrusion from the researcher. 71 Respondents to a Q-sort are known as the P-set, and are asked to rank-order statements from their individual point of view, utilising a quasi-normal distribution (see Appendix A2: Q-sort score sheet). In Q-sort methodology participants give their own subjective meanings to the statements. These rankings are then subject to factor analysis which correlates subjective views (Stephenson, 1935). “By correlating people, Q factor analysis gives information about similarities and differences in viewpoint on a particular subject.” (Van Exel and de Graaf, 2005: 1). Where clusters of correlations are found, they can be factorised and help to describe common discourses at play within the wider concourse of statements, and individual profiles can be compared to them. Q-sort methodology is thus used to examine a population of viewpoints, rather than a population of people (Van Exel and de Graaf, 2005). Statements selected for a Q-sort are always matters of opinion rather than ‘fact’. Brouwer (1999) suggests that an advantage in utilising Q-sort methodology is that ideas (expressed as Q-set statements) are not analysed in isolation, but in terms of their mutual coherence for respondents. Brown (1980) states that an important aspect regarding the theorising of Q-sorts is that there is a limit to the number of existing opinions on any one topic, and a well constructed Q-sample will reveal these perspectives in operation. “The results of a Q methodological study are the distinct subjectivities about a topic that are operant, not the percentage of the sample (or the general population) that adheres to any of them.” (Van Exel and de Graaf, 2005: 3). 72 Q-sorts can be said to represent orientations to the topic matter (as reflected in the Q-set of items to be sorted by participants). In this sense, Q-sort methodology is ideally designed to study the ideological positionality of participants, as well as the potential ‘common ground’ and tensions within and between the discourses of various stakeholders in regard to educational priorities for young learners on the autism spectrum. Therefore, it was decided that another pilot would be conducted using this method (and finally for the main methodology utilised in this thesis). 3.7 Piloting the Q-sort method For the purposes of an initial Q-sort pilot study, 8 participants were drawn from the student base of the Autism Centre for Education and Research at the University of Birmingham. One participant took part in a 1-to-1 session, whilst the other 7 participants engaged in the Q-sort through a focus group, with 2 of these participants working as a pair. These differences in modes of participation were utilised in order to highlight the strengths and weaknesses of each potential approach. Of the 8 participants, one identified themselves as being on the autism spectrum (Participant P5) and another as ‘neurodiverse’ and as a parent of someone on the spectrum, another parent also took part, and all participants were educational practitioners in the field in some capacity (see Appendix A3: Instructions given to participants for Q-sort pilot studies – for the guidance given to participants to complete the task). 73 The sorting process involved ranking 42 statements regarding educational priorities for children on the autistic spectrum of secondary school age in a structured Q-sort format (see Appendix A2: Q-sort score chart) and was followed by a group discussion (or individual discussion in the case of the final participant), where participants were asked to elaborate on their point of view, firstly in regard to the most salient statements that are placed at either ends of the continuum, and then salient or incongruent statements, before discussing their viewpoints as a whole. Participants were finally asked if there were any important areas which the statements did not cover. Although feeling somewhat conflicted, the participants remarked upon how interesting they found the exercise, and how it helped them to clarify their thoughts regarding the topic at hand. When asked about any statements that were missing from the Q-set, it was mentioned that something regarding stress and anxiety and a comfortable learning environment could be included. In light of these comments, the statements for the ‘enabling environments’ section were reviewed and amended for the main study. Advantages of the Q-sort methodology included the level of flexibility and control participants felt in the process of Q-sorting, and its reliability as a methodology, requiring engagement, added to by in-depth qualitative reflection to check validity. According to Van Exel and de Graaf (2005), it is also generally speaking a pleasant and interesting experience for those undertaking the exercise. It seemed in this pilot study to have been experienced as an intensive and involving process. 74 “It is a suitable and powerful methodology for exploring and explaining patterns in subjectivities, generating new ideas and hypotheses, and identifying consensus and contrasts in views, opinions and preferences.” (Van Exel and de Graaf, 2005: 17). Many advantages were found to the use of Q-sort methodology with regards to the proposed topic area. Once the instructions were fully explained, participants had little trouble in completing the Q-sort exercise, and they paid close attention to both reading and placing the statements. As expected, the sorting exercise lasted for approximately 45 minutes, with some participants finishing before others. It was found that the two participants working in a pair took longer to complete the Q-sort and so did not make any written statements concerning their sort. It was decided that such pairings added little to the data collection and so was ruled out as an option to be utilised in the final study. Despite these advantages, not all aspects of the pilot study went according to plan. The score sheet that had been prepared only contained 41 boxes, and so once a participant pointed this out, an extra box was added to the ‘0’ column. Some of the statements were slightly too big for the boxes on the score sheet, and not being laminated and attached with velcro, became somewhat difficult for participants to utilise. The materials for the final study were deemed in need of amendment in order to mitigate these issues. 75 It was also remarked upon that some statements a participant initially agrees with are likely to be placed under the disagree end of the spectrum. As it is the holistic spacing of statements in relation to one another that informs the final analysis, plus the score sheets can be analysed in relation to the three initial piles recorded and divided up accordingly (see Appendix A3: Instructions given to participants for Q-sort pilot studies), the scores being given a minus or plus symbol is of little consequence. Although an attempt to make this clear was made to the participants, it was thought to be psychologically beneficial to remove the numbering from the score sheet for the final project, and leave main headings at either end and in the middle of the Q-sort spectrum. The Q-sort methodology proved to be a valuable tool in studying the subjectivities of the participants regarding the education of autistic people. Despite a small number of participants taking part in the pilot study, and all of them studying within the same University department, there was much variation in responses and outlooks. Following this initial pilot of utilising Q-sort methodology, it was decided that in order to reach more potential participants, it would be beneficial to convert the materials into an online system. After reviewing various options, it was decided that PoetQ software would be utilised, as it had been developed by Stephen Jeffares (for an example of software use in research see: Dickinson, Jeffares, Nicholds, and Glasby, 2013) at the University of Birmingham and thus the software and guidance material on its use were easily available. In order to then pilot the online materials, a recruitment message was sent out to students working within the Autism Centre for Education and Research (ACER) at the University of Birmingham, and 5 students completed the exercise. Some of the 76 wording in the initial introductory page was said to be potentially confusing, such as ‘stakeholders’ and ‘field of autism’ and was subsequently altered to make the information clearer and more succinct (see Appendix A4: PoetQ introductory text). One participant mentioned that they did not know that they could alter their selections until later in the process, although this was pointed out in the introductory text (see Appendix A4: PoetQ introductory text). The main ranking exercise when delivered through PoetQ software was found to be accessible by these students; engaging and could be completed quicker by participants than had been the case with the face-to-face focus group pilot study. 3.8 Findings from initial pilot study Factor extraction and analysis was not possible for the initial pilot due to the small number of participants that took part. Instead, individual Q-sorts were analysed in order to gauge any initial indications as to how the participants were relating to the materials. Table 3.8.1 depicts the scoring arrays of the 7 participants. Statements selected for the Q-sort were selected and grouped into categories, shown in the table on the left-hand side. A full explanation of these categories is given in Section 3.10. Each statement was randomly assigned a number (see Appendix A5: Statement List). P1 to P7 indicate the responses participants gave in ranking the statements on a structured scale (see Appendix A2: Q-sort score chart). P6* indicates the pair of participants that produced a Q-sort together, and P7**, the Q-sort that was produced within a 1-to-1 session. Maximum positive and negative scores, along with averaged scores of 2 and above or -2 and below for particular statements, and score ranges of either 1 or 7 are highlighted in bold. 77 Table 3.8.1: Pilot study Q-sort responses from 8 participants General category Statement number P1 P2 P3 P4 P5 P6* P7** Average Range Classical Humanist 13 -1 -2 -2 -2 -3 -3 -1 -2.4 2 25 0 -2 -1 -1 3 -4 -1 -0.9 7 32 -2 -2 -2 -1 0 -2 0 -1.3 2 40 -3 -1 -4 -3 1 -2 -2 -2 5 Liberal Humanist / Instrumentalist 3 -2 -1 -3 -2 0 2 -1 -0.9 5 12 0 1 1 1 1 1 1 0.9 1 36 -1 -2 -2 0 2 1 -3 -0.7 5 38 0 0 -1 1 0 0 0 0 2 Progressive 9 2 -2 0 3 -2 0 3 0.6 5 26 3 -3 -2 -2 -1 -3 -1 -1.3 6 31 1 -3 0 0 -1 -1 0 -0.6 4 37 3 0 0 4 3 1 1 1.7 4 Radical/democratic 7 3 0 0 -1 -4 -4 -1 -1 7 27 -1 -3 -1 1 -3 -3 0 -1.4 4 29 0 -4 -2 2 -4 -3 0 -1.6 6 39 4 -1 -1 1 2 1 1 1 5 Behaviourist 1 -2 -1 -3 -1 0 2 -3 -1.3 5 14 0 2 2 0 2 1 3 1.4 3 18 -4 -4 -3 -4 -2 -1 -3 -3 3 20 -3 1 -1 -3 -1 0 -3 -1.4 4 Functionalist 8 -4 0 -4 -3 1 0 -4 -2 5 10 -3 1 1 -2 3 3 -1 0.3 5 11 1 -1 1 4 1 0 -2 0.6 6 42 -3 0 -1 -4 -1 -2 -2 -1.9 4 RDI 2 -2 3 1 -1 -1 -1 2 0.1 4 6 -1 0 0 -1 1 0 -2 -0.4 3 19 -1 2 0 0 -2 -1 0 -0.3 4 28 -2 0 -3 -3 -2 -1 4 -1 7 Interactionist 4 2 3 2 2 2 3 4 2.4 2 17 0 -3 2 2 -2 -2 3 0 6 21 1 2 3 1 0 4 2 1.9 4 33 3 1 3 3 4 4 2 2.9 3 Building relationships 15 2 -1 0 0 1 2 2 0.9 3 22 1 4 3 1 3 2 0 2 4 24 1 3 2 0 4 0 2 1.7 4 30 0 2 0 0 -3 0 -2 -0.4 5 Enabling environments 5 2 4 4 2 -3 3 1 2.1 7 16 1 2 1 2 0 1 1 1.1 2 23 2 3 3 3 2 2 3 2.6 1 34 -1 1 2 0 -1 -1 1 0.1 3 EBP 41 0 1 1 -2 0 -2 -4 -0.9 5 Tailored curriculum 35 4 0 4 3 0 3 0 2 4 78 In terms of the most consensually agreed upon statement, item 33 (+2.9): ‘...utilising the interests of learners’ was the most popular, although participant P2 marked this lower than other participants (+1). The most consensually disagreed upon statement (-3), was item 18: ‘...helping children on the autism spectrum become indistinguishable from their peers’, yet participant P6 ranked this statement less negatively than other participants (-1). A number of statements created much diversity in response, including ‘...radical change in society’ (ranging from -4 to +3). Participant P1 presented a Q-sort that seemed to be that of a progressive idealist, who would like radical change in educational practice if possible. This is supported by the written notes this participant gave alongside their sort (see Appendix A6: Written notes of participants from Q-sort pilot study 1 – for a full transcript of the notes made by participants during this exercise): “If we really did educate everyone in personalised ways, empowering them and encouraging critical thinking – we might stand a much better chance of radical (positive) change in society.” (Participant P1). Participant P2 highlighted the building of relationships and the enabling of environments, and despite being generally in favour of interactionist practice, also scored functionalist practice ideas higher than some of the other participants and rated the popular priority of ‘utilising the interests of learners’ less favourably: 79 “A different status is needed between staff and pupils, because children with ASD are also expected to follow the rules.” (Participant P2). Participants P3 and P4 gave a view of a strong interactionist (and non-behaviourist) persuasion, also highlighting the enabling of environment as important: “Who’s disrupted by their behaviour? The teachers? Is it a problem for the child or the teacher?” (Participant P3). Participant P5 and the paired group P6 gave a view more in favour of liberal humanist/instrumentalist ideals than the other participants, with participant pairing P6 ranking ‘helping children on the autism spectrum become indistinguishable from their peers’ less negatively than other participants: “Somebody external needs to decide on the curriculum and implement it.” (Participant P5). Participant P7 gave a very interactionist point of view, yet with also seemingly incongruent high scores for two items traditionally associated with other practices. On closer inspection through discussion however, a differing (and more interactionist/pragmatic) interpretation was being implemented. This highlights that participants will read into the statements from their own perspective, 80 irrespective of the clarity of instructions and how one might have intended the statement to mean as a researcher. What is important is that these differences in interpretation are teased out through discussion. In the discussions following the Q-sort exercise, participant P1 asked whether or not it mattered how likely one felt that the statements were likely to be achieved. Interestingly, this came from a Q-sort that indicated a somewhat radical idealist viewpoint. During the follow-up discussions, the question of what was meant by ‘evidence-based practice’ was raised by the researcher. This seemed to be a pertinent question to ask those in attendance, given that they were all studying courses in Autism Studies of some variety, and had scored item 41 on a range of -2 to +1 (later on participant P7 rated item 41 at -4). A dilemma was mentioned by participant P5 regarding what was meant by evidence, and the tension between published article guidance and school policy, and that of experience of working in practice. One of the pairing of participants P6 also suggested that: “Learning should be personalised, but should still fit moving up p-scale levels.” (Participant P6). 81 3.9 Epistemological concerns Utilising social constructionist ontology (Stainton-Rogers, 1991; 1995), this thesis attempted to understand the discursive map of dominant discourse in relation to the education of autistic people. A participant’s Q-sort represents their particular subject position to the Q-set items, whilst the extracted factors that a Q-sort methodology produces relate to the main discourses at work within these individual perspectives; the exhaustiveness of the methodology being only dependent on the relative breadth of statements chosen as Q-set items. The factors that emerge from Q-sort analysis represent discernible patterns of regularity between Q-sorts. Watts and Stenner (2012) point out however, that many participants will still exhibit highly idiosyncratic and subjective views, and in doing so: “...may provide a valuable challenge to the current status quo.” (Watts and Stenner, 2012: 44). It is thus important to also collect qualitative data alongside the ranking exercise to explore the meanings participants attach to statements and their Q-sort as a whole in greater depth. One potential difficulty for this study was how to elicit views from those deemed ‘non-verbal’ or ‘low-functioning’ on the spectrum. However, assumptions regarding levels of functioning are highly problematic. O’Neill (2008) examined how professional discourses often reflect a deficit model, whilst autistic networks 82 (particularly in the UK) tend to conceptualise autism as an aspect of neurological diversity, rather than disability (at least within a purely medical model), and see themselves as belonging to a community, regardless of what sub-categories have been applied to particular individuals. Hacking (2009) agreed with this view and argued that sub-categorisations within the autism spectrum were largely arbitrary, concluding that at least some of the insights gained from those able to express and communicate their ideas, will have relevance for those on the spectrum who cannot. Hacking (2009) supports this claim by citing authors who describe being able to understand speech, long before they were able to communicate. The approach used in this study however was obviously limited to those with good linguistic skills, either written or spoken. This study was not seeking to be fully representative of stakeholder views however, but to discover the main discourses at play, the influences such as stakeholder positionality on these discourses, and the tensions and common ground to be found between these perspectives. In this respect, the Q-sort method was deemed to be the most appropriate for answering the proposed research questions. 3.10 Design The first aspect of designing a Q-sort methodological study is the definition of the topic concourse. Not to be confused with a discourse, the concourse refers to the collection of all possible discourses pertaining to a topic. Thus a concourse includes all the relevant aspects of all the discourses available on a topic. The concourse was obtained from literature regarding educational ideology and practice, both in general and from literature specifically regarding the education of 83 pupils on the autism spectrum. The primary sources for the concourse were the educational literature reviewed earlier in this thesis (see Chapter 2: Literature Review), Scrimshaw’s (1983) descriptions of educational ideology, and data obtained from various stakeholder groups from consultation exercises (Milton and Giannadou, 2012 – see Appendix B1: Overview of related articles) that were undertaken on behalf of the Autism Education Trust for their National School Standards (Jones, Baker, English, and Lyn-Cook, 2012) and Competency Framework (Wittemeyer, English, Jones, Lyn-Cook, and Milton, 2012). For the purposes of this study, forty-two representative statements (the Q-set) of opinion were generated reflecting the spread of views across the concourse (see Appendix A5: Statement List). Brown (1980) suggests that what one includes in the Q-set is of crucial importance, yet is more art than science. He states that it is up to the researcher to draw a representative sample of statements from the concourse. Such a structure may emerge from investigation, or may be imposed on the concourse based on relevant theory. For the purposes of this study, the latter option was chosen. After initial piloting, the number of statements to be used was set at 42, so as to not be too time-consuming for participants. In the piloting process, attempts were made to cut down on any overlapping statements, double meanings were removed, and statements overly difficult to understand were re-worded. Each final statement of the Q-set was then assigned a random number for data collection purposes. The final Q-set was broken down into 10 categories of 4 statements each, 4 ideological (classical humanist, liberal humanist, progressive, and radical); 4 practice-based (behaviourist, functionalist, relationship 84 development intervention (RDI), and interactionist), 2 practice-based categories of ‘building relationships’ and ‘enabling environments’, and with the final two statements being more general statements of particular interest in the field concerning a ‘tailored curriculum’ and ‘evidence-based practice’ (see Appendix A5: Statement List). Whenever a Q-set is designed, different structures and samples would be selected by different researchers from the available concourse, yet this is not regarded as a problem for Q-sort methodology. Firstly, whatever the starting point of statements is, the aim is to provide a range of statements as indicative as one can of the range of opinions available about a topic. Secondly, irrespective of which statements are chosen for the Q-set, it is the research participants who ultimately give meaning to the statements in the sorting process and following discussion (Brown, 1980; Thomas and Baas, 1992; Watts and Stenner, 2012). “The perfect Q set is probably a thing of fantasy and fiction.” (Watts and Stenner, 2012:63). The Q-sort was made available to participants either online through PoetQ software or through a face-to-face meeting. All participants choose to complete the study through the online method. Along with the Q-sort ranking exercise, this incorporated set questions asking participants their reasoning for choosing the statements that they most and least agreed with on the Q-sort scale. The addition of qualitative questions was limited by the constraints of the PoetQ software, yet 85 participants were informed that if they wished to participate further through follow-up interviews they could, again either through online or face-to-face exchanges. The follow-up interview questions utilised a semi-structured and open-ended format, allowing for flexibility of response and rich and detailed qualitative data to be produced, regarding constructions of educational experiences. Too much structure could lead to researcher bias and the omission of important perceptions held by the participants, whilst too little structure could lead to a ‘paralysis of response’ (Lewis, 2004). Thus, the follow-up interviews were limited to five key questions (see Appendix A7: Follow-up interview questions). 3.11 Samples and Sampling Sampling for this study consisted of targeted opportunity sampling for each participant sub-category: autistic adults, parents of secondary-aged children on the autism spectrum, and practitioners and academics working in the field of autism and education. For each of these groupings it was hoped that at least between 5 and 10 participants could be found, in order to give as wider breadth of opinion as possible inputting into the extraction of the Q-sort factor analysis. Participants were recruited via the University of Birmingham students studying autism within the School of Education, through autistic-led organisations and online forums, and from local and national parent-focused organisations. A standardised recruitment letter was designed and sent out to these various sites (see Appendix A8: Recruitment letter). Participants were given clear guidance as 86 to the nature and aims of the study and statements regarding consent to complete when they accessed the PoetQ software online (see Appendix A4: PoetQ Introductory text). The concerns of less verbally articulate autistic people were not explored via this particular Q-sort methodology, asking questions about breadth and representativeness amongst all stakeholders in the field. However, research carried out with autistic young people within school settings was produced for the Autism Education Standards consultation exercises last year by a team of researchers at the University of Birmingham (Milton and Giannadou, 2012 – see Appendix B1: Overview of related articles). The findings from these reports are reviewed later in this thesis and contrasted with the findings from this study (see chapters 5 and 6). 3.12 Participants For Q-sort methodological studies only a limited number of respondents are needed in order to establish the existence of a factor for comparison with one another. Yet, according to Van Exel and de Graaf (2005), a P-set (sample of participants) should provide enough breadth to maximise confidence that whatever factors are at issue emerge from the data. For Van Exel and de Graaf (2005) the aim would be to find four or five people asserting each anticipated viewpoint (with often 2-4, but rarely more than 6 factors tending to emerge from such data). 87 A P-set is not randomly selected, but selected on the basis of a structured sample of people who are theoretically relevant to the issue at hand, in this case selected stakeholder groups; and who may help to define a factor, such as those with a distinct viewpoint or set of practices that they follow. The number of respondents aligning themselves with a factor is of much less importance to this study, than their stakeholder positionality. In a wider population, the prevalence of those associating with particular viewpoints is not measurable using this technique (Brown, 1978), but through using such techniques, the dominant viewpoints being utilised by various stakeholders can be made more explicit and examined in-depth. For this study 60 participants (including the researcher, see Section 3.16) were sampled across stakeholder groups, specifically looking for those with distinct experiences and positionalities. Care was also taken not to test an overly homogenous participant group. These participants included 15 non-autistic parents of children on the autism spectrum of secondary school age and whose diagnosis had been made at least two years before, 12 of whom were mothers and 3 were fathers. Twenty-five practitioners working with autistic children in a number of settings were sampled, 19 of whom were female, 5 male and one person did not state a gender. Of the practitioners, 2 were non-autistic mothers of autistic children, and 7 were autistic, 5 female and 2 male. Ten academics in the field were sampled, 7 female (2 autistic and one non-autistic parent) and 3 male (2 autistic and one not). Overall, there were 19 academics or practitioners who were 88 neither parents nor adults on the autism spectrum. Twenty-six adults who identify as being on the autism spectrum participated in the study, 20 of whom were female and 6 male (including the researcher). As these figures indicate, many of the participants held multiple positions within these categories, for instance being an autistic academic, or both a mother and a practitioner. By utilising a Q-sort methodology, this study did not seek to be representative of the predominance of discourses/beliefs held amongst stakeholder groups, but to highlight the number of available discursive repertoires being utilised within the field, and the motives behind these being employed by various stakeholders that participate. Thus the number of participants required for the study, is that needed to adequately distinguish the number of factors/discursive repertoires in operation, and with enough rich qualitative data to critically examine these formulations and how they are used by participants from differing subject positions within the field. Due to the structural limitations of the PoetQ software used for this study in terms of qualitative data recorded, participants were asked if they would like to complete a short online interview answering a small number of semi-structured questions (see Appendix A7: Follow-up interview questions). Initially, nine participants agreed to this further aspect of the study, yet only six completed the follow-up questions. 89 3.13 Procedure Firstly, the participants were asked to log-on to the PoetQ software platform and read through the instructions regarding the study and conditions of consent (see Appendix A4: PoetQ introductory text). Participants were then asked to sort 42 randomly numbered statements that form the Q-set (see Appendix A5: Statement list) and instructed to rank the statements according to a condition of instruction (see Appendix A2: Q-sort score chart), with reference to: personal views regarding educational priorities for secondary school-age pupils on the autism spectrum. They were then asked to sort statements into three piles: agree, disagree, and neutral or undecided. Participants were then asked to rank the statements, utilising the PoetQ software, which then produced a pyramid ‘score sheet’ ranging from most disagree to most agree (see Appendix A2: Q-sort score chart), with all statements being ranked within this framework. The participants could then move any of the statements they so chose around the pyramid structure to their liking. Finally, participants were asked a small number of questions (see Appendix A9: PoetQ qualitative questions) and whether they would like to be contacted for further input into the study, by emailing the author of this thesis. Participants were warned in this instance that if they were to express such an interest that their anonymity would no longer be possible, yet the confidentially of any further information given was assured. This further input took the form of a set of semi-structured online interview questions (see Appendix A5: Follow-up interview questions). 90 3.14 Data analysis The initial analysis of the Q-sort data produced from this study began with looking at the sample group as a whole and how the stakeholders rated statements and statement categories, analysing the range of views given by the sample group and average ranking scores for statements and statement categories (see Section 4.2 of Chapter 4: Findings). The data was then inputted into PQMethod software in order to compute and obtain a correlation matrix of Q-sorts. The correlation matrix measures the levels of agreement and disagreement between all individual Q-sorts in a sample compared to all other individual Q-sorts, and the distributions of rankings that each contains. This highlights the degree of similarity in points of view between participants. The correlation matrix is then open to a factor analysis that identifies the number of natural groupings of Q-sorts on the basis of similarity/dissimilarity. This gives an indication of how many factors (or discourses) are in operation within the Q-set/concourse. Then a factor loading is determined for each Q-sort to highlight the extent to which each Q-sort is associated with each factor. The next step in the analysis involved a process of factor rotation. In this study, a ‘VARIMAX’ rotation was used due to the high numbers of participants that took part in the study. Rotation of factors does not affect the original Q-sorts or relationships between Q-sorts, but changes the vantage point from which they are viewed. All of the above procedures were undertaken by utilising PQMethod software and data outputs and thus free from researcher bias, other than potential bias in the selection of the Q-set of statements from the available concourse of views available. 91 Due to the methodological insights of Stephenson (1953), each Q-sort does not change in position, only the point at which one views the data from. This can be done by comparing one factor with another (up to as many factors that are found within the data). In doing so, subjectivity is conceptualised and represented as occupying a form of multi-dimensional ‘hilbert space’, a concept that interestingly has been echoed in the theoretical accounts of autism in recent papers (Pellicano and Burr, 2013). Each resulting final factor represents a grouping of views that are highly correlated with one another and uncorrelated with others to a significant degree. The data produced by PQMethod software also gives the estimated influence each factor had on the data set as a whole, and the number of individual Q-sorts that exemplify each factor (see section 4.3 in Chapter 4: Findings). This data then could be analysed in terms of the differences of view held by differing participants, along with demographic data taken, to indicate the influence of positionality of the discourses being voiced. The next step in the analytical process was to analyse the factor and difference scores associated with each statement in relation to respective factors. A statements factor score refers to the normalised weighted average statement score (z-score) of respondents who define that factor. Using these Z-scores, statements are then attributed to a quasi-normal distribution, in a composite (idealised) Q sort for each factor (see section 4.13 in Chapter 4: Findings and Appendix A10: Sample Q-sort distribution). This resulting Q-sort represents how a hypothetical respondent with a 100% loading on that factor would have ordered all the remaining statements in the Q-sample. When these factors are found, one can then compare the original Q-sorts to see how loaded they are to different 92 factors (see sections 4.4 to 4.11 of Chapter 4: Findings and Appendices A11 to A18: Z-score correlations by factor). When a respondents factor loading exceeds p<0.01 it is called a defining variable. The difference score refers to the magnitude of difference between a statements score on any two factors needed for it to be of statistical significance. When a statement’s difference score exceeds this limit then it is called a distinguishing statement. A statement that statistically does not distinguish between any of the factors is called a consensus statement (see Section 4.13 of Chapter 4: Findings). Such identified factors and statements point to those that need specific attention in analysis, as through such an analysis of distinguishing and consensus statements, the study can highlight the array of differences and commonalities in discourse within and between stakeholder groups in the field of education for autistic pupils (if not the proportion of people who hold such views), and thus answer the research questions of this thesis. Statements that are ranked at either end of composite Q-sorts representing a factor, are called characterising statements (shown by the five most and five least characterising statements for each factor in Sections 4.4 to 4.11 of Chapter 4: Findings, and with full listings in Appendices A11 to A18: Z-score correlations by factor), while distinguishing and consensus statements show differences and similarities between factors (and thus discourses). Finally, an analysis was made of the qualitative explanations given by the participants in relation to interpreting the factors found in the quantitative analysis through those provided through the PoetQ software, and triangulated with data from the thematic analysis of the follow-up questions that participants could chose to partake in (see Section 4.16 of Chapter 4: Findings). The analysis of the follow-93 up questions adopted a discursive social psychological perspective. The discourse of the various stakeholders was analysed using the conceptual tools of ‘interpretive repertoires’, ‘subject positions’ and ‘ideological dilemmas’ (Hollway, 2007) and how discursive resources are used to construct educational practices. The dilemmas and contradictions found within the expressions of various stakeholders were analysed in terms of how they constitute, and are constituted by, wider power relations. Taking a mixture of top-down approaches (Foucault, cited Hollway, 2007) to examine the expressions produced by participants, and bottom-up approaches (Edley, 2001, cited Hollway, 2007) to explore the agency involved in the taking-up of subject positions, this project endeavoured to analyse how participants position themselves in relation to autism, educational placements, the curriculum, and other stakeholders. In so doing, this project aimed to identify any ideological dilemmas or contradictory repertoires present in the use of these models or personal constructions expressed within the discourse produced. According to Billig, Condor, Edwards, Gane, Middleton, and Radley (1988), views are not fixed or consistently expressed and represent flexible rhetorical resources, but often used in a contradictory way, for instance, using both medical and social models of disability to construct accounts. 3.15 Ethical issues For the purposes of this study, a number of exclusion criteria applied to participant selection. It was decided that only adults on the autism spectrum would be sampled, in part due to the requirements of the exercise, and partly as the views of children and young people on the autism spectrum were surveyed for 94 consultation exercises for the school-based materials for the AET (Milton and Giannadou, 2012 – see Appendix B1: Overview of related articles). The findings from these reports will be reviewed in order to contrast them with that of the findings from this project (see chapter 6). The concerns of less verbally articulate autistic people were also not explored via the Q-sort methodology, asking questions about breadth and representativeness amongst all stakeholders in the field. Due to the nature of the exercise, only verbally articulate autistic people with access to the internet were able to take part in the study. Parents of autistic children were excluded if their children were either of primary school or post-secondary school age, or if their children had been diagnosed within the previous two years. All participants were given the same information regarding consent through the introductory message of the PoetQ website format (see Appendix A4: PoetQ introductory text). Had participants wanted to complete the exercise face-to-face they would have been given a written consent form to complete. Upon initial consent, participants were informed of their right to withdraw from the project at any point during the process, and that they could do so without having to give a reason for doing so, and that withdrawal from the study would not affect the study in any way. Data for participants was kept completely confidential and given a code that could be removed and not utilised if participants chose to do so. Participants who chose to further participate in the follow-up interview questions needed to email the researcher and thus waive their anonymity if doing so, but participants were warned that this would be the case, and that their data would still be kept confidential. There was the risk that talking about educational priorities may heighten emotional responses from people closely related to the issues at hand. Therefore, care was taken to ensure that participants fully understood the 95 topic and process, as well as their right to withdraw. Participants were given the choice to either remain anonymous or to be given credit for their contribution to the research in some way, for example, being named for quotes or for their personal Q-sort. This is due to many autistic people having expressed in the past how their input into the production of knowledge is obscured by anonymity. In this study the participants all chose to remain anonymous however. The data will be held by the researcher at home for the period of ten years. Access to data will only be given to supervisors, and to participants concerning their own data. This data will be held on a password protected computer. It is important to note what is to be gained for the participants who take part in this study. No compensation was offered for the time of participants, yet it is hoped that participants benefitted from having their voices contribute to this research, particularly adults on the autism spectrum whose views are often absent from research in the field. Also, by highlighting and helping to define the competing discourses within the field and the reasons why differing stakeholders chose to draw upon their respective interpretive repertoires, this method allows for greater clarity of understanding between perspectives. The tensions between perspectives in the field uncovered in Chapter 2 of this thesis are also somewhat obscured within current literature regarding best practice guidance for autistic pupils, and therefore, by giving voice to participants, it should make any tensions (as well as common ground between perspectives) easier to decipher. The data would also highlight what is of most and least concern in terms of educational priorities for the sampled groups, albeit this will not be representative of a wider population, the findings from this study could help to refine further research in this 96 area. The document regarding ethical clearance for this thesis is included in Appendix A1: Ethical clearance for thesis. 3.16 Researcher positionality and ‘potential bias’ As is argued in Section 2.5 (of Chapter 2: Literature review) and Section 3.9 of this thesis, when conducting interpretive work based in a social constructionist paradigm, it is essential and common practice to lay out one’s own positionality in respect to the topic at hand and reflect on how that will inevitably bias interpretations made from a projects findings. Although the methodology used in this study could be deemed to be objective in part, considering that many of the operations are free from human manipulation, as mentioned in Section 3.6, the selection of a Q-set of statements from an available concourse is more ‘art than science’ and is open to a bias selection. Also, how one interprets both the quantitative and qualitative data produced from such a study will inevitably be infused with the ideological leanings and positionality of the researcher doing the viewing, as it is argued in this thesis that it is impossible to take up a position of a ‘view from nowhere’ (Nagel, 1989). It was decided that the best way to show my own positionality with regard to the methodology being used was to undertake the Q-sort exercise myself and use this as part of the data in order to compare my educational ideology with that of the participants in the study. My own Q-sort would not affect the findings in regard to other individual participants and could be compared in exactly the same way as 97 any other viewpoint within the data set. This also provides data for reflection on one’s own position in comparison to the data set as a whole, lays it bare to the reader, and helps the reader to reflect on how their own positionality could affect their own interpretation of the data and the conclusions that I come to (which could potentially be somewhat different). Rather than affecting the data in terms of any bias, it is argued here that such an approach allows for greater transparency regarding the influence of one’s own positionality. Throughout Chapter 4, my own findings are presented in the data as participant P1. This positionality is again reflected upon in Section 6.2 of Chapter 6: Discussion, before debating the findings from the study. 98 Chapter 4: Findings “We are taught for the schoolroom not for life” (Seneca cited from spaceandmotion.com, 2015). 4.1 Introduction For the purpose of this study, 60 participants were sampled from across stakeholder groupings related to the education of children on the autism spectrum, all of whom completed a Q-sort study, ranking 42 statements relating to educational priorities for autistic children along a structured scale (see Appendix A2: Q-sort score chart and Appendix A5: Statement list). Six participants chose to complete follow-up online interviews in order to explore their views more in-depth. The two key research questions explored through these methods were as follows: x What discourses are being used by relevant stakeholders in the narrative construction of views about educational priorities for autistic children of secondary school age? x What commonalities and tensions exist between (and within) the subjective constructions of stakeholders regarding the education of autistic children of secondary school age? This chapter is structured into sixteen sections. Section 4.2 examines the general findings from the participant responses in relation to the range and average scores 99 given by the participant group as a whole, regarding the statements and the a priori categories that were chosen to be represented by these statements. Section 4.3 explores the data further by giving the overall findings from the Q-sort factor analysis procedure, including the number of factors extracted, their respective weightings in explaining the variance within the data set, and their correlation scores in relation to one another. Sections 4.4 through 4.11 examine each extracted factor from the study in turn, describing the statements rated most highly and those least by participants exemplifying the factor, the demographic data of those exemplifying each factor and the qualitative statements they gave for positioning particular statements and the top or bottom of their respective Q-sorts. Each of these sections ends with an exploration of the distinguishing statements for each extracted factor, which separated them from other factors to a statistically significant level. Section 4.12 makes comparisons between the first two factors extracted from the data-set, due to their dominance in terms of statistical influence. Section 4.13 analyses the amount of consensus found for the 42 individual statements in the Q-set between the various factors extracted. Section 4.14 breaks the data up by stakeholder groupings of autistic adults, non-autistic parents, and (non-autistic, nor parent) practitioners and academics – in order to look at which factors were exerting the most influence on the Q-sorts ranked by participants within these groupings. Section 4.15 examines the relative correlation scores by factor for the statements, separated out by a priori categories (see section 3.10 in Chapter 3: Methodology). Finally, section 4.16 explores the narrative constructions produced via the 6 follow-up online interviews, and triangulates this data with that of Q-sort statistical findings. 100 4.2 General findings Sixty participants took part in the Q-sort study. These participants included 15 non-autistic parents of children on the autism spectrum of secondary school age and whose diagnosis had been made at least two years ago, 12 of whom were mothers and 3 fathers, 25 practitioners working with autistic children in a number of settings were sampled, 19 of which stated they were female, 5 male and 1 did not state a gender. Of the practitioners, 2 were non-autistic mothers of autistic children, and 7 were autistic, 5 female and 2 male. Ten academics in the field were sampled, 7 female (2 autistic and one non-autistic parent) and 3 male (2 autistic and one not). Overall, there were 19 academics or practitioners who were neither parents nor adults on the autism spectrum. Twenty-six adults who identified as being on the autism spectrum participated in the study, 20 of whom were female and 6 male (including the researcher). The majority of participants stated that they were not following any specific model of intervention, yet 9 participants stated that they used ABA, 9 used TEACCH, and 9 Intensive Interaction, with some using combinations of these. The 42 statements used in the Q-sort exercise encompassed 10 a priori categories, each containing four statements, with two general statements being separate to this categorisation. Table 4.2.1 shows the rankings for each a priori category, from least agreed with to most agreed with (-4 to +4) and average ranking for each category. 101 Table 4.2.1: Average ranking of a priori categories A priori category -4 -3 -2 -1 0 1 2 3 4 Avg. Interactionist 0 7 14 22 49 53 46 28 18 0.96 Enabling environments 1 0 16 25 74 52 36 34 11 0.87 Building relationships 0 5 11 26 78 47 40 26 7 0.71 Progressive 3 20 27 30 33 45 23 34 27 0.61 RDI 2 7 27 53 62 46 26 12 5 0.08 Liberal Humanist 4 22 40 45 43 21 25 28 14 0.02 Functionalist 10 29 29 32 47 32 28 22 8 -0.13 Radical 26 49 40 34 25 20 24 15 7 -0.93 Behaviourist 43 40 30 38 28 21 22 11 6 -1.12 Classical Humanist 30 58 53 42 26 10 8 11 1 -1.86 The most highly ranked categories on average were ‘Interactionist’ influenced statements regarding theory and practice, and the categories of ‘Enabling environments’ and ‘Building relationships’ (both drawn from the Autism Education Trust training materials – Guldberg, Bradley, Cooper, Jones, Mackness, Makriyannis, Milton, Waltz, and Wittemeyer, 2012). The highest ranked category derived from the educational ideologies described by Scrimshaw (1983) was that of ‘Progressive’ ideology, yet there were also a wide range of rankings for these statements, with 80 responses between 4 statements in total, or one-third of responses, receiving a negative ranking score (below 0 – it should be noted here that a negative ranking score does not necessarily mean full disagreement, but can also mean being seen as less important than other statements). This category however, also received the most rankings at the top of the scale (ranking of +4 = 27). Practice statements based on ‘RDI’ and ‘Functionalist’ ideas, along 102 with ‘Liberal Humanist’ ideology based statements all attracted a wide range of rankings, indicating a level of tension in view between differing participant perspectives. Both ‘Radical’ ideology and ‘Behaviourist’ practice statements attracted more negative rankings than positive, yet both also showed a wide range of response. The least favoured category was that of ‘Classical Humanist’ educational ideology. In order to see in more depth how these categories were ranked however, it is necessary to look at how within each category, individual statements were ranked (for a full results table of how all statements were ranked, see Appendix A19: Statement scores – all participants). Table 4.2.2: Classical Humanist statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 13 12 19 19 7 2 - - - - -2.48 25 7 14 6 10 7 6 4 6 - -1 32 1 9 10 17 11 3 3 5 1 -0.88 40 10 16 18 8 6 1 1 - - -2.15 Total 30 58 53 42 26 10 8 11 1 -1.86 Statement key: 13: Teaching traditions and heritage 25: Teaching the three R’s: reading, writing and arithmetic 32: Long-range goals and well-established standards 40: Learning being controlled, directed or guided by teachers Table 4.2.2 shows the breakdown of rankings for the a priori category of a ‘Classical Humanist’ educational ideology. The statements that received the most positive responses were in regard to teaching the ‘three R’s’ and setting ‘Long-range goals and well-established standards’, yet all of the statements were ranked 103 low on average. The idea that learning should be ‘controlled, directed and guided by teachers’ was generally negatively ranked, whilst the idea of teaching traditions and heritage was not seen by participants within this sample as relevant, or at least not as relevant as the other statements ranked. Table 4.2.3: Liberal Humanist statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 3 1 8 15 15 7 3 5 2 4 -0.63 12 1 1 - 2 16 9 10 16 6 1.53 36 2 10 11 13 9 4 6 3 1 -0.73 38 - 3 14 15 11 5 4 7 3 -0.1 Total 4 22 40 45 43 21 25 28 14 0.02 3: Training learners to take up roles in society 12: Promoting independence 36: Providing structure, order and discipline 38: Producing responsible individuals able to play a full part in society Table 4.2.3 indicates that by far the most popular ‘Liberal Humanist’ statement was that of ‘Promoting independence’, yet even so, four participants rated the statement negatively and two significantly so. The statements regarding taking up ‘roles in society’ and ‘playing a full part in society’ attracted a range of rankings, as did ‘providing structure, order and discipline’ (ranked most negatively of the four statements), indicating a level of tension and disagreement, with some being in favour of these views and some less so. 104 Table 4.2.4: Progressive statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 9 1 3 3 4 4 9 6 13 17 1.75 26 - 9 17 17 7 5 2 3 1 -0.93 31 2 8 7 7 14 13 3 4 2 -0.23 37 - - - 2 8 18 12 14 7 1.83 Total 3 20 27 30 33 45 23 34 27 0.61 9: Celebrating learners and not trying to ‘normalise them’ 26: To not accept values and morals, but to examine them 31: Goals being dictated by the interests of the learner 37: Empowering learners to learn how to think for themselves Although ‘Progressive’ ideology was ranked higher overall than the other ideological categories derived from Scrimshaw (1983), Table 4.2.4 shows that some of the statements attracted a wide range of rankings. The most popular in this category and the second most popular statement overall was ‘Empowering learners to learn how to think for themselves’. What this meant to differing participants may differ however, as ‘Celebrating learners and not trying to ‘normalise’ them’ was also very popular, especially among some participants, attracting 17 participants to rank the statement as most important. However, 11 participants ranked the statement negatively in comparison to others, revealing a level of tension between differing viewpoints. Less favourably rated were the goals of learning ‘being dictated by the interests of the learner’, and to ‘not accept values and morals, but to examine them’. This suggests that the more the statements veered toward ‘Radical’ ideology, the less favourably the statements were ranked overall, and the more tension between viewpoints they attracted. 105 Table 4.2.5: Radical statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 7 4 12 11 11 2 4 6 4 6 -0.55 27 13 19 10 8 6 2 1 1 - -2.15 29 9 17 15 6 5 2 3 3 - -1.77 39 - 1 4 9 12 12 14 7 1 0.75 Total 26 49 40 34 25 20 24 15 7 -0.93 7: Radical change in society 27: Pupils decide how to spend their time 29: Equality of status between staff and pupils 39: Empowering students to be active and critical in their learning Table 4.2.5 shows the four statements derived from Scrimshaw’s (1983) category of ‘Radical’ educational ideology. The most popular statement was that of ‘Empowering students to be active and critical in their learning’, although this statement did attract 14 negative rankings, indicating that some participants saw this as a higher priority than others. The statement ‘Radical change in society’ attracted a wide range of responses, with a tendency toward the negative, yet with 16 participants ranking the statement at either -3 or -4 and 10 participants ranking the statement as +3 or +4, suggesting that this statement could be a highly contentious one. Least favourably ranked were the statements regarding pupils deciding ‘how to spend their time’ and the ‘equality of status between staff and pupils’. It is interesting to note here that these unfavourable rankings match those regarding the ‘Classical Humanist’ statement regarding ‘learning being controlled, directed or guided by teachers’. This suggests that, taking a mean average between participants, learning is being seen ideally as not being too learner nor teacher led. 106 Table 4.2.6: Behaviourist statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 1 - 7 7 11 9 8 9 7 2 0.15 14 1 2 2 14 14 12 9 4 2 0.37 18 32 13 11 2 1 - 1 - - -3.15 20 10 18 10 11 4 1 3 - 2 -1.83 Total 43 40 30 38 28 21 22 11 6 -1.12 1: Reducing inappropriate and disruptive behaviours 14: Examining the causes and consequences of behaviour 18: Helping people on the autism spectrum become indistinguishable from their peers 20: Every moment being seen as an opportunity for reinforcing learning Table 4.2.6 shows the range of rankings given to statements based on differing elements of ‘Behaviourist’ theory and practice. By far the least favoured statement of all statements was that of ‘helping people on the autism spectrum become indistinguishable from their peers’ (Average -3.15). This brought down the average for this category, yet even without this statement, on average this category scored lower than other practice based categories. This was largely due to the generally negative ranking given to ‘every moment being seen as an opportunity for reinforcing learning’, although this statement was also ranked at the top of the Q-sort scale by two participants. The statements regarding the reduction of ‘inappropriate and disruptive behaviours’ and ‘examining the causes and consequences of behaviour’ drew a wide range of responses, indicating a level of tension between differing viewpoints. The statement regarding the ‘causes and consequences of behaviour’ was the most popular of the ‘Behaviourist’ inspired statements, based on the ABC methodology of functional 107 assessments of behaviour, yet this statement also drew 19 negative responses from participants. Table 4.2.7: Functionalist statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 8 4 12 9 7 13 6 5 2 2 -0.77 10 - 5 6 2 11 12 12 11 1 0.73 11 - - 2 10 18 9 7 8 5 0.88 42 6 12 12 13 6 5 4 1 - -1.35 Total 10 29 29 32 47 32 28 22 8 -0.13 8: Addressing the core deficits of learners 10: Developing social skills 11: The development of functional communication 42: A curriculum based upon developmental milestones Table 4.2.7 shows the rankings for statements based on functionalist educational theory and practice. All four statements received a wide range of responses, with the less popular statements being ‘A curriculum based upon developmental milestones’ and ‘addressing the core deficits of learners’, and the more popular statements being ‘the development of functional communication’ and ‘developing social skills’. This would suggest that the normative aspects of functionalist theory are not as popular amongst the participants sampled, than the aspects looking to aid communication and social interaction. 108 Table 4.2.8: RDI-based statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 2 - 1 4 9 14 11 10 6 5 0.83 6 1 2 6 20 17 10 4 - - -0.4 19 1 3 11 15 12 13 4 1 - -0.43 28 - 1 6 9 19 12 8 5 - 0.32 Total 2 7 27 53 62 46 26 12 5 0.08 2: Building motivation and tools for successful social interaction 6: Helping pupils to take the perspective of others 19: Helping pupils refer to others and share emotions 28: Helping pupils to integrate sensory information Table 4.2.8 shows statements drawn from RDI (Relationship Development Intervention) theory and practice. Although drawing a range of responses, there was a greater tendency among participants to rank these statements around the middle of the Q-sort ranking, not seeing them as the least or the most important priorities. As with the statements based on functionalist theory and practice, the RDI statement regarding social interaction was ranked higher than those with potentially normative connotations, such as taking on the ‘perspective of others’ or referring to others. Table 4.2.9: Interactionist statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 4 - - 1 6 12 6 15 12 8 1.6 17 - 7 11 13 11 7 7 1 1 -0.47 21 - - 1 2 11 19 14 7 6 1.47 33 - - 1 1 15 21 10 8 3 1.23 Total 0 7 14 22 49 53 46 28 18 0.96 4: Taking account of differing learning styles 109 17: Being learner-led 21: The building of secure and trusting relationships 33: Utilising the interests of learners Table 4.2.9 shows the rankings given by participants to statements based on ‘Interactionist’ theory and practice. This category was the most popular overall, with only one statement being ranked negatively on average overall: ‘being learner-led’ (Average -0.47). ‘Utilising the interests of learners’, ‘taking account of differing learning styles’ and (crossing over with the ‘Building relationships’ category) ‘the building of secure and trusting relationships’ were all positively ranked on average by participants. Table 4.2.10: Enabling environment related statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 5 - - 1 3 11 16 10 9 9 1.57 16 - - 4 5 23 12 10 6 - 0.62 23 - - 2 4 13 16 10 13 2 1.25 34 1 - 9 13 17 8 6 6 - 0.02 Total 1 0 16 25 74 52 36 34 11 0.87 5: Reducing the bullying of people on the autism spectrum by others 16: Supporting transitions 23: Giving learners personal space, and/or quiet spaces to retreat to 34: Smaller class sizes Table 4.2.10 shows the rankings given to statements regarding ‘Enabling environments’ derived from educational priorities highlighted within the Autism Education Trust training materials (Guldberg et al., 2012). This category was the second most highly ranked overall of all the categories. The statement regarding 110 the prioritising of ‘smaller class sizes’ drew a range of responses, but was ranked lower than the other statements within this category. The statements regarding giving learners ‘personal space’ and reducing ‘bullying’ were on average seen as important priorities. Table 4.2.11: Building relationships related statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 15 - - 1 8 14 13 10 12 2 1.12 22 - - - 1 17 14 14 12 2 1.42 24 - 1 1 3 28 11 13 1 2 0.67 30 - 4 9 14 19 9 3 1 1 -0.37 Total 0 5 11 26 78 47 40 26 7 0.71 15: Employing calm and patient staff members 22: Good communications between staff, pupils and parents 24: The clarity of instructions given to learners 30: The provision of augmented communication devices Table 4.2.11 shows the responses for the ‘Building relationships’ category of statements, derived from educational priorities highlighted within the Autism Education Trust training materials (Guldberg et al., 2012). The least favoured statement from this category was in regard to ‘the provision of augmented communication devices’ (Average -0.37), although this was seen as very important by a small number of participants, perhaps indicating a specific need for this for some individuals. The most highly rated statement from this category was in regard to ‘good communication between staff, pupils and parents’ (Average +1.42). 111 Table 4.2.12: General statements Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 35 - 1 - 3 7 8 15 16 10 2 41 1 2 9 10 17 6 7 4 3 0.1 35: A tailored curriculum to meet individual need 41: Being informed by evidence-based practice Table 4.2.12 shows the two general statements that were added to the other statements to make up the Q-sort of 42. The first statement reflects a somewhat ‘Interactionist’ and person-centred ideal of ‘a tailored curriculum to meet individual need’ and the second statement, a somewhat more ‘Functionalist’ ideal of ‘being informed by evidence-based practice’. The former scored the highest average ranking score of all statements (Average +2), yet the latter scored 21st of 42 statements (Average +0.1), with a wide range of responses, suggesting a level of tension and disagreement regarding the statement. Given the wide spread of views expressed regarding the 42 statements (for a full ranking list of statements see Appendix A19: Statement scores – all participants), it could be said that interpretations of these two general statements, and indeed more specific statements from the main categories, could differ greatly between participants. The analysis of base rankings has shown a general tendency within the sample group toward a person-centred and ‘Interactionist’ approach, also including ‘Enabling environments’ and ‘Building relationships’. Yet, little agreement was shown over categories and statements within them, given the range of responses 112 the statements attracted, such as ‘radical change in society’ in particular. In order to take a more nuanced approach to the data, the Q-sort rankings of all the participants were subjected to a Q-sort factor analysis. The purpose of this process was to compare all the Q-sorts with one another and aggregate factors within the data. Each factor obtained from this process would indicate where statements had clustered together to produce a distinct profile that was similar to a number of individual Q-sorts to a greater or lesser extent, and indicated sufficient deviance from one another to represent significantly differing viewpoints being expressed within the data. Through this factor analysis process, one is able to analyse the dominant discourses at play within the data set and how they differ (or not) from one another over certain aspects of the Q-sort list of statements. 4.3 Overall findings from Q-sort factor analysis The Q-sorts of the 59 participants, as well as that of the researcher (see Appendix A20: Q-sort for participant P1), were analysed through PQMethod software, and following the application of the VARIMAX rotation method (discussed in section 3.14 of Chapter 3: Methodology), eight factors were extracted: Table 4.3.1: Factors extracted by percentage of variance explained and individual exemplars of factors F1 F2 F3 F4 F5 F6 F7 F8 %expl.var 15 17 5 7 7 6 9 6 Exemplars 9 11 1 2 2 1 3 2 113 According to the PQMethod analysis, the eight factors (F1-F8) identified could account for 72% of the variance in the Q-sort data. Of the eight factors extracted, two were dominant, making up 32% of the variance (15% and 17% respectively) and having nine and eleven respective individual Q-sorts that statistically exemplified these points of view. The other six factors were not dominant factors with none acquiring more than 3 participants who exemplified them. There were 31 exemplifying Q-sorts and 29 that did not exemplify any of the factors, but could be said to have been drawing upon more than one factor (or discourse). My own Q-sort (participant P1, see Appendix A20: Q-sort for participant P1) indicated a strong correlation with factor 2 which was the most dominant factor within the data-set, along with some potential influence from factor 6 and a near to zero correlation with factor 1 (the other dominant factor in the data set). Table 4.3.2: Correlations between factor scores F1 F2 F3 F4 F5 F6 F7 F8 F1 1 0.1417 0.2825 0.4362 0.2517 0.4414 0.4456 0.3423 F2 0.1417 1 0.418 0.1277 0.359 0.464 0.4146 0.2577 F3 0.2825 0.418 1 0.1624 0.1771 0.117 0.4575 0.3758 F4 0.4362 0.1277 0.1624 1 0.3598 0.4409 0.2327 0.2398 F5 0.2517 0.359 0.1771 0.3598 1 0.3494 0.3494 0.2908 F6 0.4414 0.464 0.117 0.4409 0.3494 1 0.2973 0.2854 F7 0.4456 0.4146 0.4575 0.2327 0.3494 0.2973 1 0.311 F8 0.3423 0.2577 0.3578 0.2398 0.2908 0.2854 0.311 1 Table 4.3.2 shows the amount of correlation that the factors had with one another. Although there is an amount of overlap between the factors, it is of note that there was a very weak correlation between the two dominant factors (factors 1 and 2) indicating significant tensions and differences of viewpoint between these two 114 dominant factors/discourses. There is a degree of overlap between the various factors, but enough to distinguish them from one another, and most significantly was the lack of correlation in viewpoint between factors 1 and 2 (n = 0.1417), indicating almost opposing views. 4.4 Findings regarding factor 1 Table 4.4.1: Highest z-scores for factor 1 Rank Statement Z-score 1 ...a tailored curriculum to meet individual need. 1.672 2 ...the development of functional communication. 1.549 3 ...being informed by evidence-based practice. 1.441 4 ...reducing inappropriate and disruptive behaviours... 1.373 5 ...promoting independence. 1.318 (For a full ranking list for factor 1 see Appendix A4.10) The z-scores shown for factor 1 in Table 4.4.1 are the weightings that individual statements had on the formation of factor 1 (for a full ranking list for factor 1 see Appendix A11: Factor 1 z-scores). The most approved statement was that of ‘a tailored curriculum to meet individual need’ (z-score = 1.672). Below are a number of quotes taken from qualitative responses to those participant Q-sorts that exemplified factor 1 and rated this statement highest and when asked the question “Why?”, they ranked this statement as one of the two highest priorities: “A tailored curriculum will address the priorities for individual children and their needs. This is essential for future successful outcomes in life.” (Participant P3). “Learning works best when tailored to the strengths and needs of the learner – what works for one doesn’t work for everyone.” (Participant P10). “Autism is such a widely varying condition that it is vital for any curriculum to be individually tailored as much as possible.” (Participant P13). 115 All of these participants express the need for a tailored curriculum, with participant P10 including tailoring learning to the strengths of learners. However, all three contain the use of narrative more akin to functionalist or behaviourist ideology, for example: ‘successful outcomes’, ‘what works’ and ‘varying condition’. The other statements clustered around the top of the factor 1 z-score list indicate what a tailored curriculum might look like according to this viewpoint, such as: ‘developing functional communication’ (z = 1.549), ‘reducing inappropriate and disruptive behaviours’ (z = 1.373), and ‘promoting independence’ (z = 1.318). Below are a number of quotes taken from qualitative responses to those participant Q-sorts that exemplified factor 1 and rated the statement regarding ‘functional communication’ highest and when asked the question “Why?’, they ranked this statement as one of the two highest priorities: “Because otherwise he is trapped in a world where he cannot communicate his hopes and fears, particularly when I am dead and cannot look out for him.” (Participant P20). “It is the most basic thing to be able to communicate your needs and wants, and it is beneficial to anyone to find a way to do this.” (Participant P50*). “Being able to communicate one’s needs is the most important skill for any human being.” (Participant P54). (* indicating that the participant is on the autism spectrum). 116 From these quotes, functional communication is seen as the most ‘basic thing’ and ‘most important skill’ for anyone to learn. The quote from participant P20 shows a deeper fear however, of a mother fearing that her autistic child without the ability to communicate would be ‘trapped’, and fearing for their future when she is no longer alive to ‘look out’ for them. The following quote from participant P20 expresses their reasoning for rating the statement regarding ‘reducing inappropriate and disruptive behaviours’ highest: “Because my boy is very severe and if he had carried on punching and head butting himself and others he would end up in a parlous state, especially when he is too big and I am too old. To send him to residential would break my heart, ergo I needed to teach him early on to self-manage his behaviours.” (Participant P20). This quote reveals the motivation behind rating this statement highly. The mother in question does not want her child to live a life in a residential home and sees the route away from this as teaching her child to ‘self-manage his behaviours’. The following quote is from participant P50 who rated the statement regarding ‘promoting independence’ highest: “Independence is really important for living your life, learning to do as much as possible for yourself.” (Participant P50*). (* indicating that the participant is on the autism spectrum). 117 Interestingly, as this participant identified as being on the autism spectrum, ‘independence’ is not framed within a social model narrative of supporting the autonomy of people with disabilities, but one of individual responsibility to ‘do as much as possible for yourself’. Factor 1 also rated highly the statement relating to ‘evidence-based practice’ (z = 1.441). The following quote from participant P13 rated the statement regarding ‘evidence-based practice’ highest: “I want my child to have the best education fully informed by evidence based practice and I would like to see more studies being carried out to help others in the future.” (Participant P13). Although this statement attracted a wide range of responses within the sample group as a whole, participants with Q-sorts exemplifying Factor 1 rated this statement highly. Table 4.4.2: Lowest Z scores for Factor 1 Rank Statement Z-score 38 ...radical change in society. -1.444 39 ...equality of status between staff and pupils. -1.679 40 ...teaching traditions and heritage. -1.836 41 ...helping people on the autism spectrum become indistinguishable... -1.909 42 ...pupils decide how to spend their time. -2.143 (For a full ranking list for factor 1 see Appendix A4.10) 118 Those weighted at the bottom of the list of Z scores for factor 1 show where there was the most disagreement with statements. Lowest was: ‘pupils decide how to spend their time’ (z = -2.143). Also low on this list were the: ‘equality of status between staff and pupils’ (z = -1.679), ‘radical change in society’ (z = -1.444) and ‘being learner-led’ (z = -1.23). Below are a number of quotes taken from qualitative responses to those participant Q-sorts that exemplified factor 1 and rated the statement regarding ‘pupils decide how to spend their time’ lowest and when asked the question “Why?”, they ranked this statement as one of the two lowest priorities: “Because he is a child, with autism and a low IQ. If I left him to decide, he would stim all day and learn nothing to help him fend for himself in the world...No child in education is allowed to decide how to spend their time. Autism or not, the maturity isn’t there nor the understanding of the skills required in order to navigate the world as an adult...to do otherwise discriminates against children with autism, reduces expectations of outcomes and prevents the child from developing skills.” (Participant P20). “Children should be given some responsibility, but ultimately children need guidance and adults need to provide the right guidance to them.” (Participant P50*). “You’d get pupils engaging in their obsessions and not learning anything new.” (Participant P54). (* indicating that the participant is on the autism spectrum). The above quotes indicate a more normative or medical/deficit model of autism being applied to what autism is, and also a positionality of parenting a child with potentially more obvious support needs. The ‘Radical’ statement of pupils deciding ‘how to spend their time’ is seen as a form of discriminatory neglect that would lead the child to ‘stim all day’ or engage in ‘obsessions’. Normative 119 expectations are used to justify such an outlook, such as in the phrases: ‘No child in education...’ and ‘ultimately children need guidance’. In order to ‘navigate the world as an adult’, participant P20 suggests that this is only achievable through the learning of ‘skills’. It is interesting to note that participant P50 offers the caveat that ‘Children should be given some responsibility’, and was one of two autistic participants who exemplified factor 1. The following quotes from participants rated the statement regarding ‘Equality of status between staff and pupils’ lowest: “...there needs to be a distinction between the teacher and the learner with the teacher in a position of authority. This is the case in the workplace, for example, and it is good for learners to appreciate hierarchy.” (Participant P10). “Staff must be respected and in a leadership role.” (Participant P31*). “A good teacher/therapist/parent should be so skilled at motivating the pupil that they will rarely get into a direct confrontation with the pupil. But if that happens, it must be the view of the teacher that prevails. Otherwise, they will never get on top of demand avoidance behaviour.” (Participant P54). (* indicating that the participant is on the autism spectrum). The above quotes indicate a normative view where learners are seen as needing to respect authority, hierarchy, and leadership. The quote from participant P54 suggests that confrontation should be avoided, but if it does occur, that it ‘must be the view of the teacher that prevails’ in order to control ‘demand avoidance behaviour’. In doing so, they frame autistic discomfort within a narrative of ‘Pathological Demand Avoidance Syndrome’ and something to be overridden, indicating a behaviourist outlook that has often been criticised by autistic authors (Milton and Lyte, 2012; Milton, 2014b – see Appendix B1: Overview of related articles). 120 Despite being against a lack of control from teaching professionals, it is interesting to note that the statement regarding ‘learning being controlled, directed or guided by teachers’ was rated more highly by those exemplifying factor 1 than other participants on average, yet this statement still received a negative z score (z = -0.565, see Appendix A11: Factor 1 z-scores). The statement regarding ‘addressing the core deficits of learners’ received varying responses from those exemplifying Factor 1, with participant P43 ranking the statement at the bottom of the Q-sort scale and participant P54 ranking it at the top of the scale. “Too often mainstream schools only see the negatives of children with any additional support need and this can further deepen the divide between them and others, by concentrating on what they can do we will enable them to grow, develop and flourish.” (Participant P43). “You need to address barriers to learning before you can teach effectively. For example, teaching the ability to imitate actions is a prerequisite for learning a huge range of skills.” (Participant P54). According to participant P54 in order to teach ‘effectively’ and for pupils to learn ‘skills’, ‘deficits’ and ‘barriers’ need to be overcome, whilst for participant P43, there is a need for mainstream schooling to provide support, and the need to concentrate on a child’s strengths as well as what they find challenging. These quotes show that between those exemplifying differing factors, alternative viewpoints on particular issues still exist, and that these may be related to differing 121 positionalities (for instance being a parent of a child placed in mainstream or specialist provision). The very low score attained by the statement: ‘helping people on the autism spectrum become indistinguishable from their peers’ (z = -1.909) would indicate that full ‘normalisation’ is not the intent of this point of view. Below are a number of quotes taken from participants who rated the statement regarding ‘helping pupils on the autism spectrum become indistinguishable from their peers’ lowest and where asked the question why they ranked this statement as one of the two lowest priorities: “Because it is nonsense and a loaded statement.” (Participant P20). “I support individuality and diversity in our society. We are not tasked with forcing them to become ‘indistinguishable’.” (Participant P31*). “You cannot permanently hide your autism and neither should you have to – autistic children are individuals just as all other children and they should be encouraged and celebrated within acceptable social boundaries.” (Participant P43). (* indicating that the participant is on the autism spectrum). Whilst seeing this statement in a very negative way, it is interesting to note that participant P43 whilst wishing to celebrate individuality and utilise the strengths of learners, sees this as beneficial ‘within acceptable social boundaries’. Whilst being ‘indistinguishable’ is not a goal for those exemplifying factor 1, looking to equip autistic children with ‘skills’ to navigate a normative social environment is highly prioritised, given the views expressed in regard to other statements. 122 Table 4.4.3: Exemplar individual Q-sorts for factor 1 by demographic data Participant No. Gender Autistic Parent Practitioner Academic Age Intervention 3 M Y 33 SSt / PECS 10 F Y 29 13 F Y 51 20* F Y 50 ABA 21 F Y 38 31* M Y Y Y 52 ABA, PECS, Floortime 43 F Y 41 50 F Y 32 54 F Y 42 ABA * Indicates that these participants asked to take part in the further follow-up questions as part of the study. M = Male, F = Female, Y = Yes, SSt = Social stories, PECS = Picture Exchange and Communication System, ABA = Applied Behavioural Analysis. Of the nine exemplifying Q-sorts for factor 1, five came from non-autistic mothers of autistic children, and two from autistic adults, including one father of an autistic child. Three of these participants said they were utilising ABA methods with their children, including the autistic father (participant P31), who also stated that they were utilising the Floortime approach, as well as participant P20, whose Q-sort most highly correlated with factor 1 (see Appendix A22: Factor correlations by individual Q-sort). Table 4.4.4: Distinguishing statements for factor 1 (P < .05; Asterisk (*) Indicates Significance at P < .01) No. Statement F1 F2 F3 F4 F5 F6 F7 F8 9 ...celebrating learners and not trying to ‘normalise’ them. -0.84* 2.09 1.4 1.07 2.16 1.4 0.64 -1.87 41 ...being informed by 1.44 0.15 0.47 -0.99 -1.08 -0.93 -0.68 -1.35 123 evidence-based practice. 28 ...helping pupils to integrate sensory information. -0.84 0.12 0.47 0 0.94 0.47 -0.2 0.12 Table 4.4.4 indicates the statements that distinguish factor 1 from all the other extracted factors to a statistically significant level. The statement regarding the need to help: ‘pupils to integrate sensory information’ was rated far more negatively than it was in the other factors, with factor 5 rating this statement quite favourably. It was also shown that those with a viewpoint akin to factor 1 ranked the need for educational priorities to be informed by evidence-based practice highly, and far more so than the other factors, five of which ranked the statement negatively, perhaps suggesting a different interpretation and understanding of this term and its usage. Most significantly, those exemplifying factor 1 rated: ‘celebrating learners and not trying to normalise them’ in the negative, less negatively than factor 8, yet with all the other factors rating the statement in the positive, particularly those exemplifying factor 2. 4.5 Findings regarding factor 2 Table 4.5.1: Highest Z scores for factor 2 Rank Statement Z-score 1 ...celebrating learners and not trying to ’normalise’ them. 2.089 2 ...radical change in society. 1.54 3 ...empowering learners to learn how to think for themselves. 1.314 4 ...a tailored curriculum to meet individual need. 1.305 5 ...reducing the bullying of people on the autism spectrum by others. 1.18 (For a full ranking list for factor 2 see Appendix A4.11) 124 Although like factor 1, a tailored curriculum was rated highly (z = 1.305), the z-scores for factor 2 indicate a perspective in favour of radical and progressive principles and interactionist practice: ‘celebrating learners and not trying to normalise them’ (z = 2.089), ‘radical change in society’ (z = 1.54), ‘empowering students to be active and critical in their learning’ (z = 1.107), ‘utilising the interests of learners’ (1.066). Below are a number of quotes (all being from participants who were on the autism spectrum) taken from qualitative responses to those participant Q-sorts that exemplified factor 2 and rated the statement regarding ‘celebrating learners and not trying to ‘normalise’ them’ highest and were asked the question why they ranked this statement as one of the two highest priorities: “The concept of normalisation is abhorrent – we should be celebrating and embracing the world of autism, not trying to change individuals to become like everyone else – not least coz it ain’t ever gonna work anyway!” (Participant P8). “Because being normal isn’t being happy. Diversity should be embraced and autistic people should not be made to feel that they are wrong. Forcing people to fit in does not help them in the long run, it just damages them. Anyone who wants to normalise people who are different should change themselves, not others. Different not less.” (Participant P19). “As an adult given a late diagnosis of Asperger syndrome I spent my whole life trying to ‘fit in’ with society and never understood why I did not. I thought it was my fault, that I was not trying hard enough, that I was a failure, that I was lazy, stupid, nasty, horrible and this caused me great stress, severe depression, anxiety and I was depersonalised. I was taken advantage of, abused, neglected, manipulated. Once I understood that I saw the world differently and needed to approach life differently from the ‘norm’ it all started to make sense...” (Participant P28). “Difference should be accommodated, accepted and celebrated by a decent and reasonable society. We could help make society a better place instead of being marginalised and at its mercy.” (Participant P47). 125 The above quotes, all from autistic participants, clearly indicate an anti-normalisation stance indicative of a ‘neurodiversity paradigm’ and social model of disability (Walker, 2014). Seeking normalcy in these accounts is seen as a damaging pursuit or ‘abhorrent’, with effort needed to reduce social marginalisation. This finding is also supported by the following quotes from those who exemplified factor 2 and ranked ‘radical change in society’ among their highest priorities: “Society in general has an appalling understanding of autism, as well as the supposition that it should be the individual with autism that should adapt and ‘fit in’ – I do not agree – and think a change in societal understanding and expectations would be hugely progressive and beneficial to the autism population.” (Participant P8). “There is a need for all in society to recognise how to acknowledge, engage with and celebrate our individual differences, rather than react to and want to normalise it...and this requires a radical change in the way society operates.” (Participant P23*). “Society is NT-dominated and we autistics are painted as diseased, a burden on society and in need or cure and eradication. Society needs to change to accept and fully accommodate us and make adjustments so that we can be part of society on equal terms without we autistics having to change what and who we are.” (Participant P47). (* indicating that the participant is not on the autism spectrum). Parallel to rejecting a normative medical/deficit account of autism, celebrating diversity is seen as requiring radical social change. It is interesting to note both that this statement was one of the most contentious (see Sections 4.2 and 4.13), yet the 2nd most highly weighted statement for those exemplifying the factor 2 perspective and the 5th lowest ranked by those exemplifying factor 1, and also that participant P23 quoted above did not identify as being on the autism spectrum. 126 Table 4.5.2: Lowest z-scores for factor 2 Rank Statement Z-score 38 ...teaching traditions and heritage. -1.317 39 ...providing structure, order and discipline. -1.376 40 ...learning being controlled, directed or guided by teachers. -1.521 41 ...every moment being seen as an opportunity for reinforcing... -1.756 42 ...helping people on the autism spectrum become indistinguishable... -2.039 (For a full ranking list for factor 2 see Appendix A4.11) The approach highlighted by factor 2 is also clearly against a normative functionalist or behaviourist theory and practice: ‘reducing inappropriate and disruptive behaviours’ (z = -1.126), ‘addressing the core deficits of learners’ (z = -1.235), ‘every moment being seen as an opportunity for reinforcing learning’ (z = -1.756); as well as being against ‘Classical Humanist’ educational ideology. Below are a number of quotes taken from qualitative responses to those participant Q-sorts that exemplified factor 2 and rated the statement regarding ‘every moment being seen as an opportunity for reinforcing learning’ lowest and were asked the question why they ranked this statement as one of the two lowest priorities: “It gives children one clear message – you are a freak that needs fixing and must feel bad about this for the rest of your life. No one wanted you the way you were.” (Participant P17). “To educate someone that they need ‘rewards’ is educating them to struggle.” (Participant P28). These quotes show that the idea of reinforcement strategies are viewed negatively, firstly as connected with negative views of normative remedial connotations, and with the second quote relating to teaching people through 127 ‘rewards’ as a hindrance to learning. Unlike with those exemplifying a factor 1 viewpoint, those exemplifying a factor 2 view talked of such ideas as connected to those of being indistinguishable from one’s peers: “...trying to do so is ethically and morally reprehensible.” (Participant P8). “It is damaging to autistic people to be taught/forced to suppress autistic behaviours and act NT. It causes vast amounts of stress and [are we] any less autistic – it just teaches us to pretend we aren’t. Why should we pretend in order to pander to prejudice? Would it be okay to require a black person to paint their skin white in order to fit in?” (Participant P44). Both of these quotes come from participants identifying as being on the autism spectrum. The second quote indicates a use of language often found in the discourse of autistic activists, talking of ‘autistic people’ and acting ‘NT’. Learning to behave indistinguishably from one’s peers is seen through this lens as unethical and prejudicial – likened in the second quote to a black person painting their skin white. It should be remembered that it was not solely autistic people who exemplified this view however, as this practitioner exemplifying factor 2 states: “It is abnormal to think we should all be the same or conform to a narrow bell curve.” (Participant P58). The factor 2 viewpoint also had similar views regarding Functionalist and Liberal Humanist views. Here an autistic participant rejects the notion of ‘core deficits’ entirely, framing this view firmly within what could be called the ‘neurodiversity paradigm’ and a social model of disability (Walker, 2014): 128 “I don’t believe that autistics have ‘core deficits’, we’re just different, so there is nothing to address other than the poor attitude of NTs which isn’t our problem.” (Participant P47). In rejecting Liberal Humanist views, those exemplifying the Factor 2 viewpoint stated progressive or radical viewpoints to support their reasoning. For instance in regard to ‘providing structure, order and discipline’; ‘learning being guided by teachers’, or ‘taking up roles in society’: “We do not live in a Victorian society – yes, we all value routine, but structure, order and discipline are not something to provide – they are something that someone may wish to embrace, if they find it helpful in their life.” (Participant P23). The quote above states how structure should not be something ‘provided’, but something mutually built and consensual. “Teachers are predominantly NT and therefore have no business dictating what autistics should be learning. These teachers don’t understand us and have no idea what they’re doing...The teachers are there merely to facilitate learning not to control it.” (Participant P47). “Education should not be about training people to fit into the role that more powerful groups in society would choose to impose on them. Education should be about empowering people to choose, develop roles of their own – creating new roles if necessary.” (Participant P44). The above quotes suggest that non-autistic teachers have no place controlling and dictating the learning agenda of autistic people due to a lack of understanding 129 and expertise, evoking the ‘double empathy problem’ and how empowerment is seen in terms of autonomy and choice (Milton, 2012a; 2014a – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). Table 4.5.3: Exemplar individual Q-sorts for Factor 2 by demographic data No. Gender Autistic Parent Practitioner Academic Age Intervention 1 M Y Y Y Y 40 II. 8* M Y Y Y 43 TEACCH, PECS. 9 F Y 24 II, PECS. 17 F Y Y Y 41 19 F Y 23 22 F Y 38 (mainstream) 23 F Y 40 TEACCH, PECS, SSt. (runs unit) 28 F Y 40 44 F Y Y Y 40 TEACCH, SSt. 47* F Y Y 33 II. 58 F Y 41 TEACCH, II, PECS. * Indicates that this participant asked to take part in the further follow-up questions as part of the study. Of the eleven participants who exemplified factor 2, eight were autistic (including my own Q-sort P1) and five of these participants held multiple positionalities regarding their engagement with the field of autism. Of the three participants exemplifying this factor who were not identifying themselves as being on the autism spectrum, one was a mother of a child in a mainstream school setting, and two were practitioners. None of these participants said that they were currently using ABA, but four said they were utilising TEACCH, and four said that they were utilising Intensive Interaction (II). 130 Table 4.5.4: Distinguishing statements for factor 2 (P < .05 ; Asterisk (*) Indicates Significance at P < .01) No. Statement F1 F2 F3 F4 F5 F6 F7 F8 29 ...equality of status between staff and pupils. -1.68 0.86* -0.47 -0.87 -1.62 -0.93 -1.72 -0.92 27 ...pupils decide how to spend their time. -2.14 0.05 -1.4 -1.74 -1.62 -0.93 -0.76 -1.56 Table 4.5.4 indicates the statements that distinguish factor 2 from all the other extracted factors to a statistically significant level. Both the distinguishing statements for factor 2 indicated areas of radical / progressive ideology. Firstly, the statement: ‘pupils decide how to spend their time’, was marked somewhat neutrally by those exemplifying factor 2, yet this was significantly different to the other factors which all marked the statement very negatively. Similarly, but to a greater level of statistical significance were responses to the statement: ‘equality of status between staff and pupils’ which was rated in the positive by those exemplifying factor 2 and in the negative by all the other factors. 4.6 Findings regarding factor 3 Table 4.6.1: Highest Z scores for factor 3 Rank Statement Z-score 1 ...addressing the core deficits of learners. 1.868 2 ...examining the causes and consequences of behaviour. 1.868 3 ...reducing inappropriate and disruptive behaviours before... 1.401 4 ...celebrating learners and not trying to ‘normalise’ them. 1.401 5 ...employing calm and patient staff members. 1.401 (For a full ranking list for factor 3 see Appendix A4.12) 131 Table 4.6.2: Lowest Z scores for factor 3 Rank Statement Z-score 38 ...learning being controlled, directed or guided by teachers. -1.401 39 ...teaching traditions and heritage. -1.401 40 ...pupils decide how to spend their time. -1.401 41 ...long-range goals and well-established standards. -1.868 42 ...every moment being seen as an opportunity for reinforcing... -1.868 (For a full ranking list for factor 3 see Appendix A4.12) Factor three stated a differing view to both the first two factors. Taking a more deficit model approach with: ‘addressing the core deficits of learners’ ranked highest (z = 1.868) along with ‘examining the causes and consequences of behaviour’ (z = 1.868). Similarly to factor 2 however, radical, progressive and interactionist ideas were also ranked highly: ‘celebrating learners and not trying to normalise them’ (z = 1.401), ‘utilising the interests of learners’ (z = 1.401), ‘radical change in society’ (z = 0.934). Learning being directed by either teachers or learners were both ranked negatively (z = -1.401), along with classical humanist and normative ideology: ‘producing responsible individuals able to play a full part in society’ (z = -1.401), ‘every moment being seen as an opportunity for reinforcing appropriate behaviour’ (z = -1.868); thus presenting a somewhat medical model view of autism, yet a non-normalising interactionist approach. This analysis is supported when we look at the quotes (see below) for the one participant that exemplified the factor 3 viewpoint, a practitioner who stated that they used a modified version of the ‘Intensive Interaction’ approach. Table 4.6.3: Exemplar individual Q-sorts for Factor 3 by demographic data No. Gender Autistic Parent Practitioner Academic Age Intervention 11* F Y Y N/K II. * Indicates that this participant asked to take part in the further follow-up questions as part of the study. 132 Quotes from PoetQ qualitative data (participant P11) suggest that the perceived need for ‘addressing core deficits’ and ‘examining the causes and consequences of behaviour’ were seen as relating to ‘sensory processing problems’, as illustrated by the following quotes: “...we cannot assess the cognitive level of students without first addressing their sensory processing problems.” (Participant P11). “Disturbed behaviour in autism is almost always the outcome of sensory overload...we need to examine crises in the light of sensory distress.” (Participant P11). Although on the surface this viewpoint would seem to indicate a mixture of medical and social model views, it was clear from this discourse that these statements were simply being interpreted somewhat differently. Indeed, the following quote indicates a rejection of behaviourist ‘manipulation’ and ‘compliance’ training with regard to the notion of reinforcement: “There are a number of problems with behavioural manipulation. It objectifies the student, takes no notice of sensory difficulties and neurobiological distress the child may be experiencing. It is based on the ‘normal’ experience of sensory reality rather than the students. It teaches compliance rather than self-motivation and some students on the spectrum find it a senseless ritual of abuse.” (Participant P11). 133 Table 4.6.4: Distinguishing statements for factor 3 (P < .05) No. Statement F1 F2 F3 F4 F5 F6 F7 F8 8 ...addressing the core deficits of learners. 0.74 -1.23 1.87 -0.31 -1.48 -1.4 -0.6 0.31 Although the statement: ‘addressing the core deficits of learners’ was rated fairly highly by those with a viewpoint akin to factor 1, it was rated very highly by those with a view more akin to factor 3, with a number of factors having a negative rating toward the statement. This should be taken in the context of the quotes above though as reflecting a differing account of what these deficits may be and how to accommodate such perceived differences. 4.7 Findings regarding factor 4 Table 4.7.1: Highest Z scores for factor 4 Rank Statement Z-score 1 ...the building of secure and trusting relationships. 1.997 2 ...promoting independence. 1.687 3 ...developing social skills. 1.435 4 ...providing structure, order and discipline. 1.32 5 ...empowering learners to learn how to think for themselves. 1.32 (For a full ranking list for factor 4 see Appendix A4.13) Table 4.7.2: Lowest Z scores for factor 4 Rank Statement Z-score 38 ...goals being dictated by the interests of the learner. -1.182 39 ...radical change in society. -1.435 40 ...every moment being seen as an opportunity for reinforcing... -1.435 41 ...smaller class sizes. -1.63 42 ...pupils decide how to spend their time. -1.744 (For a full ranking list for factor 4 see Appendix A4.13) 134 The viewpoint expressed by factor 4 seemed unusual in that it seemed to draw on a wide range of ideological and practice ideas. Highlighted most strongly was the ‘building of secure and trusting relationships’ (z = 1.997), yet also ‘developing social skills’ (z = 1.435), and ‘providing structure, order and discipline’ (z = 1.32). This view took a non-radical approach when compared to factors 2 and 3: ‘being learner-led’ (z = -1.182), ‘radical change in society’ (-1.435), ‘pupils decide how to spend their time’ (z = -1.744); yet somewhat similarly to factor 3 encouraged relationship building as key. Table 4.7.3: Exemplar individual Q-sorts for factor 4 by demographic data No. Gender Autistic Parent Practitioner Academic Age Intervention 32* M Y 44 59 F Y 39 (1-2-1 mainstream) * Indicates that this participant asked to take part in the further follow-up questions as part of the study. Factor 4 was exemplified by two participants, a practitioner, and an autistic adult male. The following quote shows that along with the goal of being indistinguishable from one’s peers is equally rejected, the notion of celebrating differences is also stated, and autism being central to an individual identity: “We should celebrate differences. Being autistic is part of who one is. It is probably as bad as asking homosexuals to be indistinguishable from heterosexuals, or boys should be indistinguishable from girls.” (Participant P32). “Autistic people move to the ‘beat of a different drum’ and therefore need to examine critically the assumptions and expectations that society places on them.” (Participant P32). 135 Factor 4 in contrast to factor 2 however, took a less radical and more pragmatic approach to perceived issues related to varying statements. For example, in regard to providing structure and support from understanding staff: “Structure, order and discipline are necessary to organise a stable life from which other activities can then work out. Autistic people need more with less (spoon theory) and having an orderly physical and mental environment helps this.” (Participant P32). “If the child trusts and feels comfortable with the adult then they will feel more able to achieve.” (Participant P59). Table 4.7.4: Distinguishing statements for factor 4 (P < .05 ; Asterisk (*) Indicates Significance at P < .01) No. Statement F1 F2 F3 F4 F5 F6 F7 F8 34 ...smaller class sizes. -0.02 0.08 0.93 -1.63* -0.34 0.47 -0.04 0.64 Factor 4 bore some resemblance to aspects of other factors, yet intriguingly it was distinguished from the others in terms of the need for smaller class sizes. This statement was rated neutrally within the ranking order, or else of some importance by the other factors, but was not seemingly seen as important at all by those with a viewpoint akin to factor 4. However, the following quote from the PoetQ qualitative responses indicates that the need is simply not appropriate for all pupils and that the resources needed to implement such a change would be better applied elsewhere, again highlighting a rather ‘pragmatic’ approach. 136 “Smaller classes help. However autistic students should also learn to work in environments that are difficult for them. The resources needed for smaller class sizes can be diverted to other things like providing specialised training to teachers and anti-bullying programmes.” (Participant P34). 4.8 Findings regarding factor 5 Table 4.8.1: Highest Z scores for factor 5 Rank Statement Z-score 1 ...celebrating learners and not trying to ‘normalise’ them. 2.164 2 ...reducing the bullying of people on the autism spectrum by others. 1.823 3 ...every moment being seen as an opportunity for reinforcing... 1.765 4 ...giving learners personal space, and/or quiet spaces to retreat to. 1.623 5 ...a curriculum based upon developmental milestones. 1.282 (For a full ranking list for factor 5 see Appendix A4.14) Table 4.8.2: Lowest Z scores for factor 5 Rank Statement Z-score 38 ...radical change in society. -1.224 39 ...addressing the core deficits of learners. -1.482 40 ...equality of status between staff and pupils. -1.623 41 ...pupils decide how to spend their time. -1.623 42 ...learning being controlled, directed or guided by teachers. -1.765 (For a full ranking list for factor 5 see Appendix A4.14) Factor 5 interestingly ranks the highest priority to be: ‘celebrating learners and not trying to normalise them’ (z = 2.164), yet also rates highly ‘every moment being seen as an opportunity to reinforce appropriate behaviour’ (z = 1.765), and ‘a curriculum based on developmental milestones’ (z = 1.282). Not favoured by this approach was the RDI inspired statement: ‘helping pupils refer to others and share emotions’ (z = -1.165), ‘addressing the core deficits of learners’ (z = -1.482), and both ‘pupils decide how to spend their time’ (z = -1.623) and ‘learning being controlled, directed or guided by teachers’ (z = -1.765). This approach would 137 seem to highlight a normative functionalist approach, but one that views focusing on deficits alone as unhelpful. Table 4.8.3: Exemplar individual Q-sorts for Factor 5 by demographic data No. Gender Autistic Parent Practitioner Academic Age Intervention 15 F Y Y Y 30 II. 42 F Y Y 39 Two participants exemplified a viewpoint akin to factor 5, one of them being on the autistic spectrum and utilising the Intensive Interaction approach, and both being practitioners and academics in the field. Interestingly, the notion of ‘reinforcement’ ranked very low by participant P11 who exemplified factor 3 who utilised a modified version of Intensive Interaction was ranked highly by those exemplifying factor 5. Also the statement regarding ‘core deficits’ was not interpreted as being a comment regarding sensory issues, but related to a rejected ‘deficit model’ of autism, as indicated by the following quote from the PoetQ qualitative responses: “I don’t see that the ‘deficit’ model promotes the equality agenda.” (Participant P15). Table 4.8.4: Distinguishing statements for factor 5 (P < .05 ; Asterisk (*) Indicates Significance at P < .01) No. Statement F1 F2 F3 F4 F5 F6 F7 F8 20 ...every moment being seen as an opportunity for reinforcing... -0.92 -1.76 -1.87 -1.43 1.76* -1.87 -1.32 -0.52 138 42 ...a curriculum based upon developmental milestones. -0.23 -1.13 -0.93 -1.07 1.28* -1.87 -0.17 -0.43 The distinguishing features of factor 5 was the positive ratings given to the traditionally behaviourist notion of ‘every moment being seen as an opportunity for reinforcing appropriate behaviour’ and the traditionally functionalist idea of ‘a curriculum based upon developmental milestones’. “There seems to be a lot of emphasis on looking at the negative behaviours of pupils with autism and not reinforcing and celebrating their achievements.” (Participant P42). In the above quote from the PoetQ qualitative responses it can be seen that reinforcing behaviour is being viewed by those exemplifying factor 5 in the sense of celebrating achievements, however, the high ranking for a curriculum based on developmental milestones also belies a normative ideological influence. 4.9 Findings regarding factor 6 Table 4.9.1: Highest Z scores for factor 6 Rank Statement Z-score 1 ...training learners to take up roles in society. 1.868 2 ...taking account of differing learning styles. 1.868 3 ...celebrating learners and not trying to ‘normalise’ them. 1.401 4 ...teaching the three R’s: reading, writing and arithmetic 1.401 5 ...a tailored curriculum to meet individual need. 1.401 (For a full ranking list for factor 6 see Appendix A4.15) 139 Table 4.9.2: Lowest Z scores for factor 6 Rank Statement Z-score 38 ...helping people on the autism spectrum become indistinguishable... -1.401 39 ...radical change in society. -1.401 40 ...teaching traditions and heritage. -1.401 41 ...every moment being seen as an opportunity for reinforcing... -1.868 42 ...a curriculum based upon developmental milestones. -1.868 (For a full ranking list for factor 6 see Appendix A4.15) Ranked highest by those with a viewpoint akin to factor 6 was the ‘Liberal humanist’ statement: ‘training learners to take up roles in society’ (z = 1.868) and the more progressive idea of: ‘taking account of differing learning styles’ (z = 1.868). Although rating ‘radical change in society’ negatively (z = -1.401), so were the behaviourist idea of ‘every moment being seen as an opportunity for reinforcing appropriate behaviour’ (z = -1.868) and the functionalist idea of ‘a curriculum based upon developmental milestones’ (z = -1.868), the complete opposite ranking for these latter two statements to factor 5. Table 4.9.3: Exemplar individual Q-sorts for Factor 6 by demographic data No. Gender Autistic Parent Practitioner Academic Age Intervention 60* F Y Y Y N/K * Indicates that this participant asked to take part in the further follow-up questions as part of the study. One participant exemplified factor 6, who was a mother to an autistic child and also a practitioner and academic. The following quotes from the PoetQ qualitative responses suggest a person-centred approach based on notions of the diversity of individual need: 140 “Not enough account is taken of people’s learning styles. Mainstream education only caters for a broad middle-ground. Many lose out because they don’t fit into this.” (Participant P60). “If the child is engaged, understood, believed in and supported, additional rewards are not needed.” (Participant P60). The following quote regarding developmental milestones suggests that in order to meet individual need, a normative perspective would be seen in need of being jettisoned: “I definitely agree with this the least. So many autistic children are held back because they are deemed not to have reached ‘developmental milestones’ in some area or another...The ‘developmental milestones’ were devised for non-autistic children, so those who are autistic will always fail when compared with them.” (Participant P60). Table 4.9.4: Distinguishing statements for factor 6 (P < .05 ; Asterisk (*) Indicates Significance at P < .01) No. Statement F1 F2 F3 F4 F5 F6 F7 F8 3 ...training learners to take up roles in society. 0.32 -1.04 -0.47 -0.14 -0.54 1.87* -0.92 -0.74 The most distinguishing statement for factor 6 was the ‘liberal humanist’ idea of ‘training learners to take up roles in society’, with the other factors ranking this negatively, other than factor 1. The following quote from the PoetQ qualitative questions regarding this statement indicates a differing interpretation that 141 concerns the need for autistic people to be in ‘decision-making roles’ in order to help the situation for autistic people in general: “I believe that the situation for autistic people in general will not improve fundamentally until more autistic people are in decision-making roles, which in turn can only happen if more autistic children access good quality education relevant to them.” (Participant P60). 4.10 Findings regarding factor 7 Table 4.10.1: Highest Z scores for factor 7 Rank Statement Z-score 1 ...developing social skills. 1.88 2 ...taking account of differing learning styles. 1.721 3 ...building motivation and tools for successful social interaction. 1.639 4 ...promoting independence. 1.446 5 ...utilising the interests of learners. 1.398 (For a full ranking list for factor 7 see Appendix A4.16) Table 4.10.2: Lowest Z scores for Factor 7 Rank Statement Z-score 38 ...long-range goals and well-established standards. -1.16 39 ...every moment being seen as an opportunity for reinforcing... -1.319 40 ...equality of status between staff and pupils. -1.721 41 ...teaching traditions and heritage. -2.041 42 ...teaching the three R’s: reading, writing and arithmetic. -2.043 (For a full ranking list for factor 7 see Appendix A4.16) Factor seven emphasised social skills and interaction above other areas of priority: ‘developing social skills’ (z = 1.88), ‘building motivation and tools for successful social interaction’ (z = 1.639), ‘building secure and trusting relationships’ (z = 0.801). This factor also highlighted a progressive learner-led ideology: ‘taking account of different learning styles’ (z = 1.721), ‘utilising the interests of learners’ (z = 1.398), ‘being learner-led’ (z = 0.997). Much less 142 favoured were Classical and Liberal Humanist ideology. One could say that this viewpoint was a ‘person-centred’ perspective that saw social interaction and communication as key educational priority areas. Such a perspective may contain elements of practice influenced by TEACCH, SCERTS or RDI, as the quotes from the PoetQ qualitative responses indicate aspects of both normative functionalist ideology relating to the need to learn social interaction or skills: “Because, like it or not, we all live in a non-autistic society in which social interaction is massively salient unlike in autism.” (Participant P38). “People on the autistic spectrum have to live in society and generally benefit from some form of social interaction. I have two teenagers who are desperate to fit in with their peers but don’t know how to.” (Participant P45). “Teachers and pupils are not equals...regardless of whether a child has autism.” (Participant P52). “Learners interests can be wide and varied and shouldn’t be overlooked as a way of exploring ways to develop cognitive learning and social/emotional development.” (Participant P52). Table 4.10.3: Exemplar individual Q-sorts for Factor 7 by demographic data No. Gender Autistic Parent Practitioner Academic Age Intervention 38 M Y Y 60 45 F Y 53 52 N/K N/K N/K N/K N/K N/K Three participants exemplified this factor, making it the third most popular factor of the eight. Two of these participants were non-autistic practitioners, one of whom also an academic, with the third participant not entering their demographic details. 143 Table 4.10.4: Distinguishing statements for factor 7 (P < .05 ; Asterisk (*) Indicates Significance at P < .01) No. Statement F1 F2 F3 F4 F5 F6 F7 F8 25 ...teaching the three R’s: reading, writing and arithmetic. -0.13 -0.7 -0.47 1.18 0.82 1.4 -2.04* 0.83 2 ...building motivation and tools for successful social interaction. 0.89 -0.52 -0.47 0.51 0.54 0 1.64 0.43 7 ...radical change in society. -1.44 1.54 0.93 -1.43 -1.22 -1.4 -0.11 1.01 Three statements distinguished factor 7 from other factors to a statistically significant level. Firstly, the controversial statement of ‘radical change in society’ highlighted positively by factors 2, 3, and 8 but negatively by factors 1, 4, 5 and 6, was ranked very neutrally in comparison. Secondly, the RDI inspired statement of ‘building motivation and tools for successful social interaction’ was ranked far more positively than it was by the other factors, although factor 1 also ranked this statement fairly highly. The most distinguishing statement was that regarding the teaching of the ‘three R’s’, marked favourably by some and somewhat unfavourably by others, those with a viewpoint akin to factor 7 indicate that this statement was of little relevance, perhaps suggesting that this viewpoint was formed by practitioners working with less verbal autistic children. “Life-skills, social and independent living skills far outweigh the 3 R’s. It is important for mental health and self-esteem.” (Participant P45). 144 “We should be aiming to support children to be happy and be as independent as possible with life skills and not just focus on the three R’s.” (Participant P52). 4.11 Findings regarding factor 8 Table 4.11.1: Highest Z scores for factor 8 Rank Statement Z-score 1 ...taking account of differing learning styles. 1.777 2 ...reducing the bullying of people on the autism spectrum by others. 1.777 3 ...the clarity of instructions given to learners. 1.654 4 ...giving learners personal space, and/or quiet spaces to retreat to. 1.562 5 ...a tailored curriculum to meet individual need. 1.256 (For a full ranking list for factor 8 see Appendix A4.17) Table 4.11.2: Lowest Z scores for factor 8 Rank Statement Z-score 38 ...goals being dictated by the interests of the learner. -1.256 39 ...being informed by evidence-based practice. -1.348 40 ...pupils decide how to spend their time. -1.562 41 ...celebrating learners and not trying to ‘normalise’ them. -1.869 42 ...helping people on the autism spectrum become indistinguishable... -2.083 (For a full ranking list for factor 8 see Appendix A4.17) Factor 8 highlighted aspects of the environment and interactionist practice: ‘taking account of differing learning styles’ (z = 1.777), ‘reducing bullying’ (z = 1.777), ‘giving learners personal space’ (z = 1.562). A person-centred approach and an acceptance of the autistic way of being and learning were also highlighted by the corresponding PoetQ qualitative question responses: “I learnt little in my first two years at mainstream secondary school apart from how to be bullied. It still has a major effect on me today thirty years on.” (Participant P35). 145 “False mimicry is unlikely to be successful in the long run, and can have a detrimental effect on the mental well-being of the individual being shoehorned into a foreign mould.” (Participant P49). Unlike factor 2, education being learner-led was not favoured by this viewpoint however: ‘celebrating learners and not trying to normalise them’ (z = -1.869), ‘pupils decide how to spend their time’ (z = -1.562), ‘goals dictated by the interests of the learner’ (z = -1.256), ‘being learner-led’ (z = -1.042). Table 4.11.3: Exemplar individual Q-sorts for Factor 8 by demographic data No. Gender Autistic Parent Practitioner Academic Age Intervention 35 F Y 42 49 F Y 37 Interestingly, both those exemplifying factor 8 were adult autistic women. Table 4.11.4: Distinguishing statements for factor 8 (P < .05 ; Asterisk (*) Indicates Significance at P < .01) No. Statement F1 F2 F3 F4 F5 F6 F7 F8 9 ...celebrating learners and not trying to ‘normalise’ them. -0.84 2.09 1.4 1.07 2.16 1.4 0.64 -1.87* The only statistically significant statement differentiating factor 8 from the other factors was the very negative ranking given to the statement: ‘celebrating learners and not trying to ‘normalise’ them’. This statement was seen by those 146 exemplifying factor 8 as being related to pupil-led learning and something to be rejected: “The learning process should not be disrupted or aborted altogether by staff being led by non-compliant learners.” (Participant P49). 4.12 Comparisons between factors one and two Given the dominance of the first two factors within the data-set, Table 4.12.1 through to 4.12.3 indicate three main areas, 4.12.1 listing statements where factor 1 favours the statements and factor 2 does not, 4.12.3 where there is a level of agreement, and 4.12.2 where factor 2 much prefers the listed statements than factor 1. Therefore these tables indicate the amount of tension between the two dominant factors, as well as areas of potential similarity in viewpoint. Table 4.12.1: Descending array of differences between factors 1 and 2 – statements favoured by Factor 1 more than Factor 2 Statement F1 Z-score F2 Z-score Difference ...reducing inappropriate and disruptive behaviours before... 1.373 -1.126 2.5 ...addressing the core deficits of learners. 0.742 -1.235 1.977 ...developing social skills. 0.941 -0.844 1.785 ...building motivation and tools for successful social interaction. 0.886 -0.519 1.405 ...producing responsible individuals able to play a full part in society. 1.077 -0.29 1.367 ...training learners to take up roles in society. 0.315 -1.039 1.354 ...the development of functional communication. 1.549 0.201 1.349 ...being informed by evidence-based practice. 1.441 0.152 1.289 ...long-range goals and well-established standards. 0.474 -0.641 1.115 ...examining the causes and consequences of behaviour. 0.582 -0.503 1.085 ...promoting independence. 1.318 0.249 1.069 147 ...learning being controlled, directed or guided by teachers. -0.565 -1.521 0.956 ...a curriculum based upon developmental milestones. -0.229 -1.131 0.902 ...every moment being seen as an opportunity for reinforcing... -0.921 -1.756 0.834 ...helping pupils to take the perspective of others. 0.078 -0.747 0.825 ...teaching the three R’s: reading, writing and arithmetic. -0.133 -0.699 0.565 ...helping pupils refer to others and share emotions. -0.151 -0.71 0.56 The biggest areas of difference between the two factors where factor 1 is in favour and factor 2 not, include: ‘reducing inappropriate and disruptive behaviours’ (2.5 z-score difference), ‘addressing the core deficits of learners’ (1.977), and ‘developing social skills’ (1.785). Table 4.12.2: Descending array of differences between factors 1 and 2 – statements favoured by factor 2 more than factor 1 Statement F1 Z-score F2 Z-score Difference ...teaching traditions and heritage. -1.836 -1.317 -0.519 ...the provision of augmented communication devices. -0.343 0.189 -0.532 ...the clarity of instructions given to learners. 0.028 0.589 -0.561 ...taking account of differing learning styles. 0.38 0.954 -0.575 ...goals being dictated by the interests of the learner. -0.412 0.346 -0.758 ...reducing the bullying of people on the autism spectrum by others. 0.422 1.18 -0.759 ...helping pupils to integrate sensory information. -0.837 0.116 -0.954 ...empowering students to be active and critical in their learning. 0.118 1.107 -0.989 ...to not accept values and morals, but to examine them in... -1.025 0.225 -1.25 ...giving learners personal space, and/or quiet spaces to retreat to. -0.361 1.106 -1.467 ...being learner-led. -1.23 0.533 -1.763 ...pupils decide how to spend their time. -2.143 0.052 -2.195 ...equality of status between staff and pupils. -1.679 0.856 -2.534 ...celebrating learners and not trying to ‘normalise’ them. -0.841 2.089 -2.93 ...radical change in society. -1.444 1.54 -2.984 148 In contrast, the biggest areas of difference between the two factors where factor 2 is in favour and factor 1 not, included: ‘radical change in society’ (z score difference = 2.984), ‘celebrating learners and not trying to normalise them’ (2.93), ‘equality of status between staff and pupils’ (2.534), ‘pupils decide how to spend their time’ (2.195), and being ‘learner-led’ (1.763). Thus there is a clear divide between the two factors, with factor 1 preferring functionalist/behaviourist ideas, and factor 2 preferring ideas that are more critical/radical/progressive in focus. Table 4.12.3: Descending array of differences between factors 1 and 2 – statements favoured (or not) by factors 1 and 2 similarly Statement F1 Z-score F2 Z-score Difference ...providing structure, order and discipline. -0.903 -1.376 0.473 ...a tailored curriculum to meet individual need. 1.672 1.305 0.367 ...helping people on the autism spectrum become indistinguishable... -1.909 -2.039 0.13 ...good communications between staff, pupils, and parents. 0.76 0.686 0.074 ...supporting transitions. 0.06 0.045 0.015 ...the building of secure and trusting relationships. 0.708 0.774 -0.066 ...smaller class sizes. -0.02 0.077 -0.097 ...empowering learners to learn how to think for themselves. 1.067 1.314 -0.247 ...employing calm and patient staff members. 0.377 0.74 -0.363 ...utilising the interests of learners. 0.614 1.066 -0.451 The above table shows where there is a degree of agreement between factors 1 and 2. Both factors favour a ‘tailored curriculum to meet individual need’, ‘empowering learners to learn how to think for themselves’, ‘utilising the interests of learners’, ‘building secure and trusting relationships’, ‘employing clam and patient staff members’, and ‘good communications between staff, pupils, and 149 parents’. Both factors ranked ‘smaller class sizes’ and ‘supporting transitions’ somewhat neutrally, and both factors ranked negatively: ‘providing structure, order and discipline’ (although this was ranked highly in factors 4 and 8), and ‘helping people on the autism spectrum become indistinguishable from their peers’. The latter statement being negatively marked by all factors, marking a rejection of the original educational goal as set out by the behaviourist ideology of Lovaas (1987). 4.13 Level of consensus between factors Table 4.13.1 below indicates that only one of the 42 statements selected for the Q-set received a consensual response from those exemplifying all factors that were extrapolated from the data, and this was only significant to a value of P<.05. The table indicates the z-score loading each factor had for this statement and where it would be placed on a Q-sort indicative of that factor (its place on a factor array from -4 to +4 – see Appendix A2: Q-sort score sheet and Appendix A21: Factor array by Q-sort distribution – to see how each statement was ranked by each factor depicted by Q-sort distribution). Table 4.13.1: Consensus statements (those that do not distinguish between any of the factors). Significant to P<.05 Statement F1 F2 F3 F4 F5 F6 F7 F8 ...good communications between staff, pupils, and parents. 0.76 0.69 0.47 1.12 0 0.93 0.16 0 Factor array 2 1 1 2 0 2 0 0 150 The one statement that reached a statistically significant level of agreement was: ‘good communications between staff, pupils, and parents’, ranging in z-scores between 0 and 1.12, showing that most agreed with the statement and that there were no factors ranking it in the negative. It was not of primary importance to any of the factors either though, with none of the factors ranking the statement at the upper end of their indicative Q-sort factor arrays (i.e. +3 or +4). The following tables indicate the values given for statements sorted by consensus vs. disagreement (variance across factor Z-scores), presented by factor array, ranging from where there seems to be some level of agreement between factors to statements which produced significant tensions between the views represented by the various factors: Table 4.13.2: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...learning being controlled, directed or guided by teachers. -1 -3 -3 -2 -4 -1 -3 -2 There was a level of agreement between the factor scores regarding ‘learning being controlled, directed or guided by teachers’ with all ranking it negatively, but with a fair range as to how negatively this statement was ranked, with significantly factor 1 ranking the statement higher than many other factors. 151 “I disagree because learning needs involvement of the pupil themselves and not just from the teacher.” (Participant P42 – who exemplified Factor 5). Table 4.13.3: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...the provision of augmented communication devices. -1 0 1 -1 -2 1 -1 -1 There was some level of agreement in regard to the ‘provision of augmented communication devices’ with all but one factor ranking the statement between -1 and +1 on their respective factor arrays. Thus, such devices are not seen as a negative aspect of education, but not a primary priority either. An exception to this general rule was one participant, a practitioner exemplifying factor 2 who saw this issue as being of fundamental importance: “In this day and age to not allow access to technology for learners who cannot access it themselves is modern day exclusion...This is particularly true for individuals on the autism spectrum for whom predictability, sameness and clarity, may be antidotes to anxiety and overload.” (Participant P58). Table 4.13.4: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...teaching traditions and heritage. -3 -3 -3 -2 -2 -3 -4 -1 152 There was a fair amount of agreement between the eight factors in seeing the statement ‘teaching traditions and heritage’ as not particularly important as a priority for autistic learners, this being the second least approved of statement overall. Table 4.13.5: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...employing calm and patient staff members. 0 1 3 2 3 0 0 0 There was some level of agreement in ‘employing calm and patient staff members’, with factors 3 and 5 seeing this as important, and none of the factors ranking the statement negatively. Table 4.13.6: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...empowering learners to learn how to think for themselves. 2 3 0 3 2 3 0 1 There was also a level of agreement with the statement ‘empowering learners to learn how to think for themselves’, with factors 2, 4 and 6 rating this statement highly. 153 “Because the ability to do this and to self-advocate are vital for real autonomy in adult life. Therefore that is the best way to help autistic individuals protect themselves from bullying, abuse, manipulation and being controlled by others (even well-meaning others).” (Participant P44 – who exemplified factor 2). Table 4.13.7: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...reducing the bullying of people on the autism spectrum by others. 1 3 2 2 4 1 1 4 All the factors were in agreement with the statement: ‘reducing the bullying of people on the autism spectrum by others’, yet some ranked this as fairly important, whilst for others it was of the utmost importance. Table 4.13.8: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...helping people on the autism spectrum become indistinguishable... -4 -4 -2 -1 -2 -3 -2 -4 There was a level of agreement over the statement: ‘helping people on the autism spectrum become indistinguishable from their peers’, with factors 1, 2 and 8 all ranked it at bottom of their rankings, and all factors ranking the statement negatively. 154 “Because people on the autism spectrum ARE distinguishable from their peers. They always will be. To say otherwise is so very wrong – and who would you be doing this for?” (Participant P28 – who exemplified factor 2). Table 4.13.9: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...to not accept values and morals, but to examine them... -2 0 -2 1 -1 -2 -2 -1 The statement: ‘to not accept values and morals, but to examine them...’ was ranked somewhat positively by factor 4, but somewhat negatively by factors 1, 3, 5, 6, 7, and 8, with factor 2 ranking the statement somewhat neutrally. Table 4.13.10: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...supporting transitions. 0 0 2 -1 2 -1 2 -1 The statement ‘supporting transitions’ was ranked slightly negatively by factors 4, 6 and 8, neutrally by factors 1 and 2 and positively by factors 3, 5 and 7. Table 4.13.11: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...helping pupils to take the perspective of others. 0 -2 -1 0 -1 0 1 2 155 The statement ‘helping pupils to take the perspective of others’ was somewhat negatively ranked by factors 2, 3 and 5, neutrally ranked by factors 4 and 6, and positively ranked by factors 7 and 8. The negative view of this statement was often by those exemplifying factor 2 to forcing the autistic person into the perspective of non-autistic people without the effort in the other direction: “When is anyone going to try and stand in the shoes of the autistic child and see things their way? Don’t expect me to value you if you don’t value me.” (Participant P17). Table 4.13.12: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...the building of secure and trusting relationships. 1 2 1 4 2 2 2 0 The ‘building of secure and trusting relationships’ was ranked positively by all but one of the factors, with factor 4 seeing it as of the utmost importance and more of a primary priority than the other factors. Table 4.13.13: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...helping pupils to integrate sensory information. -2 0 1 0 2 1 0 0 156 The statement ‘helping pupils to integrate sensory information’ was ranked negatively by factor 1, neutrally by factors 4, 7 and 8, and positively by factors 3, 5 and 6. Table 4.13.14: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...utilising the interests of learners. 1 2 3 -1 0 1 3 2 The statement: ‘utilising the interests of learners’ was found in the initial Q-sort pilot study to be the most popular. However, in the main study it was ranked somewhat negatively by factor 4 and neutrally by factor 5. All the other factors ranked the statement positively. Table 4.13.15: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...the clarity of instructions given to learners. 0 1 1 1 0 0 -1 3 The ‘clarity of instructions given to learners’ was ranked somewhat neutrally or slightly positively by most of the factors, however factor 7 ranked the statement slightly negatively and factor 8 saw the statement as a strong priority area. 157 Table 4.13.16: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...helping pupils refer to others and share emotions. -1 -1 -1 1 -3 1 1 -1 Although seen somewhat positively by factors 4, 6 and 7, the statement: ‘helping pupils refer to others and share emotions’ was ranked somewhat negatively by factors 1, 2, 3 and 8 and very negatively by factor 5. Table 4.13.17: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...building motivation and tools for successful social interaction. 2 -1 -1 1 1 0 3 1 Ranked negatively by factors 2 and 3 and neutrally by factor 6, the statement: ‘building motivation and tools for successful social interaction’ was ranked somewhat positively by factors 4, 5 and 8, and positively by factors 1 and 7. Table 4.13.18: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...pupils decide how to spend their time. -4 0 -3 -4 -4 -2 -2 -3 158 The statement: ‘pupils decide how to spend their time’ was ranked negatively by all of the factors apart from factor 2, which significantly ranked this statement neutrally in comparison. “This wouldn’t work in a class environment if 30 pupils were doing their own thing.” (Participant P59 – who exemplified factor 4). Table 4.13.19: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...taking account of differing learning styles. 1 2 0 0 1 4 4 4 There was also some level of disagreement over the statement: ‘taking account of differing learning styles’, with factors 6, 7 and 8 seeing the priority of the utmost importance, yet factors 3 and 4 ranked the statement neutrally. “Expecting someone to learn in someone else’s style teaches someone that they are a failure before they learn anything else and prevents them from learning anything else.” (Participant P17 – who exemplified factor 2). Table 4.13.20: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...giving learners personal space, and/or quiet spaces to retreat to. -1 2 2 -1 3 0 1 3 159 The statement: ‘giving learners personal space and/or quiet spaces to retreat to’ also provided a range of responses, with factors 1 and 4 ranking the statement somewhat negatively and factors 5 and 8 ranking the statement very positively. “If there was a space for learners to retreat to that would be amazing. Time out to calm down, relax, breathe, assimilate all inputs and prepare to face the next onslaught.” (Participant P28 – who exemplified factor 2). Table 4.13.21: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...empowering students to be active and critical in their learning. 0 3 -2 1 1 2 0 0 A level of disagreement was found over the statement: ‘empowering students to be active and critical in their learning’, ranging from being ranked highly in factor 2, to being somewhat negatively ranked in factor 3. Table 4.13.22: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...goals being dictated by the interests of the learner. -1 1 0 -3 -1 0 2 -3 160 Viewed positively by factors 2 and 7, the statement: ‘goals being dictated by the interests of the learner’ was ranked neutrally by factors 3 and 6, somewhat negatively by factors 1 and 5 and very negatively by factors 4 and 8. Table 4.13.23: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...being learner-led. -3 1 0 -3 0 -1 2 -3 ‘Being learner-led’ was ranked positively by factors 2 and 7, yet very negatively by factors 1 and 8 – signifying a tension as to the extent to which progressive ideology should be applied in the classroom: “An education that is learner-led is more likely to inspire, motivate and capture potential. A learner’s strengths and abilities are at the forefront. A holistic, flexible approach allowing a learner to be an individual and work at their own pace at what suits and ultimately benefits them.” (Participant P58 – who exemplified factor 2). Table 4.13.24: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...producing responsible individuals able to play a full part in society. 3 -1 -3 2 -1 -1 -1 -2 161 The liberal humanist statement of ‘producing responsible individuals able to play a full part in society’ was ranked negatively by most of the factors, yet positively by factor 4 and very positively by factor 1. Table 4.13.25: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...reducing inappropriate and disruptive behaviours before... 3 -2 3 1 -2 -1 -1 0 The statement: ‘reducing inappropriate and disruptive behaviours’ drew a wide variety of responses ranging from negative rankings by factors 2, 5, 6 and 7, to highly positive rankings by factors 1 and 4. A large number of statements produced significant differences in viewpoint between the different factors: Table 4.13.26: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...the development of functional communication. 4 0 -2 0 1 2 0 0 The statement: ‘the development of functional communication’ was seen as being of the utmost importance in factor 1 and was positively ranked by factors 5 and 6. 162 Yet, it was neutrally ranked by factors 2, 4, 7 and 8 and negatively ranked by factor 3. Possibly suggesting a difference of views over what ‘functional communication’ entails. Table 4.13.27: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...smaller class sizes. 0 0 2 -4 0 1 0 1 The need for ‘smaller class sizes’ was seen as somewhat of a priority by factors 3, 6 and 8, but neutrally by factors 1, 2, 5 and 7 and very negatively by factor 4. Therefore, few disagreed with this statement, but for those who did it was a low priority. Table 4.13.28: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...equality of status between staff and pupils. -3 2 -1 -2 -4 -2 -3 -2 A contentious issue was that of ‘equality of status between staff and pupils’, seen negatively by all but one of the factors and very negatively by factor 5, and being given a positive ranking by factor 2. 163 Table 4.13.29: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...promoting independence. 3 1 0 4 1 0 3 -2 The statement: ‘promoting independence’ was rated very favourably by factors 1, 4 and 7, but much less so by the other factors and negatively by factor 8. “Independence is often used as an excuse for giving a vulnerable person no support at all – sink or swim.” (Participant P35 – who exemplified factor 8). Table 4.13.30: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...developing social skills. 2 -2 0 3 0 0 4 2 Another contentious issue was: ‘developing social skills’, seen negatively by factor 2, neutrally by factors 3, 5 and 6, positively by factors 1 and 8, and very positively by factor 7. Table 4.13.31: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...long-range goals and well-established standards. 1 -1 -4 0 0 2 -3 -2 164 Having ‘long-range goals and well-established standards’ was seen as not at all important by factors 3 and 7, negatively by factors 2 and 8, neutrally by factors 4 and 5, and positively in factors 1 and 6. Table 4.13.32: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...a tailored curriculum to meet individual need. 4 3 0 -2 0 3 2 3 Somewhat surprisingly perhaps, even the statement: ‘a tailored curriculum to meet individual need’ caused a tension, with factor 4 ranking it negatively, factors 3 and 5 neutrally, and the other factors positively to very positively. Table 4.13.33: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...being informed by evidence-based practice. 3 0 1 -2 -2 -2 -1 -3 Another important statement causing significant tensions was: ‘being informed by evidence-based practice’, with high ranking from factor 1, a neutral ranking from factor 2, and negative rankings from factors 4, 5, 6, 7 and 8. This indicates serious differences over what people mean by ‘evidence-based practice’ and the usage of this term in educational theory and practice, as indicated by this quote from the PoetQ qualitative responses: 165 “It may be evidence based but it might not work with the individual child in a school environment.” (Participant P59 – who exemplified factor 4). Table 4.13.34: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...examining the causes and consequences of behaviour. 1 -1 4 0 -1 -2 3 1 The traditionally behaviourist statement of: ‘examining the causes and consequences of behaviour’ was ranked very highly by factors 3 and 7, somewhat positively by factors 1 and 8, and negatively by factors 2, 5 and 6. Table 4.13.35: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...providing structure, order and discipline. -2 -3 0 3 -1 -1 -2 3 Seen very positively by factors 4 and 8, the statement ‘providing structure, order and discipline’, the same statement was seen negatively by factors 1, 2, 5, 6 and 7. 166 Table 4.13.36: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...teaching the three R’s: reading, writing and arithmetic 0 -1 -1 3 2 3 -4 2 The traditional educational value of teaching the ‘three R’s’ also was a statement that received wide ranging responses, from being highly ranked by factors 4 and 6, to not being seen of any importance by factor 7, perhaps reflecting the differing positionalities of those with views akin to the differing factors. Table 4.13.37: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...training learners to take up roles in society. 0 -2 -1 0 -1 4 -3 -2 ‘Training learners to take up roles in society’ also met with a large variation in response, with factor 7 again not seeing this statement as being relevant, being negatively ranked by factors 2, 3, 5, and 8, neutrally ranked by factors 1 and 4 and seen as being of the utmost importance by factor 6. 167 Table 4.13.38: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...every moment being seen as an opportunity for reinforcing... -2 -4 -4 -3 3 -4 -3 -1 The traditionally behaviourist notion of ‘every moment being seen as an opportunity for reinforcing appropriate behaviour’ was seen very negatively by factors 2, 3, 4, 6 and 7, yet very positively by factor 5. Table 4.13.39: Statement F1 F2 F3 F4 F5 F6 F7 F8 ...a curriculum based upon developmental milestones. -1 -2 -2 -2 3 -4 0 -1 The traditionally functionalist ideal of ‘a curriculum based on developmental milestones’ caused much contention, with factor 6 ranking this statement very negatively, factors 1, 2, 3, 4, 6 and 8 all ranking the statement negatively, and yet factor 5 ranking the statement very positively. Table 4.13.40: No. Statement F1 F2 F3 F4 F5 F6 F7 F8 8 ...addressing the core deficits of learners. 2 -3 4 -1 -3 -3 -1 0 168 A potentially important tension was found regarding the statement: ‘addressing the core deficits of learners’. With its explicit ‘deficit model’ functionalist meaning, it attracted very negative rankings from factors 2, 5 and 6, contrasted with the positive ranking of factor 1 and the very positive ranking of factor 3 (the latter relating the statement to potential sensory difficulties experienced). Table 4.13.41: No. Statement F1 F2 F3 F4 F5 F6 F7 F8 7 ...radical change in society. -3 4 2 -3 -3 -3 0 2 As with the initial Q-sort pilot study, a vast range of views were expressed regarding the statement: ‘radical change in society’. This statement attracted very negative rankings from factors 1, 4, 5 and 6, positive rankings from factors 3 and 8 and yet seen as being of the utmost importance by factor 2. “I am not saying that radical change is not required...In my view, radical change in general is not a matter specific in relation to the education of persons with autism.” (Participant P38 – who exemplified factor 7). Table 4.13.42: No. Statement F1 F2 F3 F4 F5 F6 F7 F8 9 ...celebrating learners and not trying to ‘normalise’ them. -2 4 3 2 4 3 1 -4 169 Finally, the statement that caused the widest variety of responses and friction was: ‘celebrating learners and not trying to normalise them’, ranging from a very negative ranking by factor 8 and a negative ranking by factor 1, alongside positive rankings by all the remaining factors and being seen as of the utmost importance by factors 2 and 5. It is a significant finding that the two statements most highly rated by those exemplifying a factor 2 viewpoint, dominant among autistic adults in the sample (see section 4.14), were also the most highly contentious statements, drawing out negative responses, with significantly again, those exemplifying factor 1 seeing these statements as of far less importance, or being against these ideals. 4.14 Q-sort findings by stakeholder grouping Table 4.14.1: Autistic male participant demographic data Q-sort No. Parent Practitioner Academic Age Intervention 1 Y Y 40 II. 8* Y Y 43 TEACCH, PECS. 30 Y 27 31* Y Y 52 ABA, PECS, Floortime. 32* 44 34 33 II. * Indicates that these participants asked to take part in the further follow-up questions as part of the study. 170 Including the initial Q-sort conducted by the researcher (see Appendix A20: Q-sort for participant P1), six autistic male adults completed the Q-sort, of these participants, three were also parents of children on the autism spectrum, two practitioners who worked with autistic children, and two academics working in the field. Table 4.14.2: Autistic male factor correlation scores Q-sort No. F1 F2 F3 F4 F5 F6 F7 F8 1 0.0161 0.8024X 0.1066 -0.0007 0.12 0.4054 0.0516 0.0906 8* 0.0926 0.7565X 0.1436 -0.1419 0.2011 -0.0093 0.1854 0.1115 30 0.1825 0.2423 0.5196 -0.11 0.5166 0.2065 0.1865 -0.0367 31* 0.612X 0.1503 0 0.3943 0.0684 0.1091 0.1705 0.0384 32* 0.1508 0.158 0.1043 0.6793X 0.1118 0.0203 0.1193 -0.0529 34 0.186 0.4391 -0.1353 0.1975 0.3165 -0.0762 0.0549 0.4485 Avg. 0.1256 0.4248 0.1231 0.1698 0.2224 0.1093 0.128 0.0999 Avg.** 0.2448 0.3492 0.1264 0.2024 0.2429 0.0501 0.1433 0.1018 * Indicates that these participants asked to take part in the further follow-up questions as part of the study. ** Indicates average scores without including the statistics for participant P1. X Indicates an exemplifying Q-sort. Among autistic male participants the strongest average influence from any of the factors was that of factor 2, although this figure was lower when the researchers own scores (participant P1) were removed from the data. It is interesting to note that participant P31 who was also a parent, indicated that they utilised ABA-based practices and exemplified factor 1, yet to a lesser extent than participants P1 and P8 exemplified factor 2. The results from this small sample are spread between the factors indicating a diverse range of views being expressed, with no view being particularly dominant. 171 Table 4.14.3: Autistic female participant demographic data Q-sort No. Parent Practitioner Academic Age Intervention 2 Y 24 TEACCH 7 (sib) Y 27 TEACCH, PECS, Sstr, SCERTS, II. 9 24 II, PECS. 15 Y Y 30 II. 17 Y Y 41 18 52 SStr, 5-point. 19 23 24 Y N/K PECS, SStr. 25 25 26 43 27 26 28 40 29 27 35 42 37 41 39 Y 59 44 Y Y 40 TEACCH, SStr. 47 Y 33 II. 49 37 50 32 In total, twenty autistic female participants completed the Q-sort exercise; of these four were mothers of autistic children and one an elder sister. Four were practitioners working with autistic children and two were academics working in the field of autism. The most popular intervention cited as being used was Intensive Interaction (4) and Social Stories (4), followed by TEACCH (3). Table 4.14.4: Autistic female participant factor correlation scores Q-sort No. F1 F2 F3 F4 F5 F6 F7 F8 2 0.1756 0.5441 -0.1498 0.2255 0.1327 0.0825 0.4424 0.0835 7 0.2781 0.4193 0.0831 0.3344 0.3455 -0.2765 0.3125 0.2889 9 0.1717 0.5729X 0.265 0.134 0.0923 0.0992 0.3473 0.2247 15 -0.051 0.3528 -0.0357 0.0365 0.6476X 0.0763 0.3124 0.1159 17 0.0172 0.7648X -0.108 -0.0213 -0.0228 0.2997 0.0122 0.0719 18 0.1811 0.4473 0.5571 0.24 0.3001 0.1629 0.1835 0.003 19 -0.0886 0.8051X 0.2495 0.0685 0.0577 0.0558 0.064 0.1836 172 24 0.1205 0.5317 0.304 0.004 0.1647 -0.0741 0.2501 0.464 25 0.5018 0.3581 -0.0121 0.049 0.2996 0.2609 0.2283 -0.1057 26 0.018 0.432 0.2848 0.1361 0.1207 0.5064 0.1027 0.3524 27 0.4529 0.3011 -0.0446 0.2087 0.4307 0.2784 0.3259 0.1636 28 -0.0819 0.6191X 0.0988 0.0327 0.1623 0.1192 0.2901 0.1963 29 0.1992 0.4493 0.1652 0.2584 0.3405 0.0488 0.4203 0.1138 35 0.0956 0.0415 0.204 0.0698 0.231 0.2025 0.0636 0.6987X 37 0.1245 0.5178 0.1282 0.3707 0.4142 0.3121 -0.165 0.1578 39 0.3083 0.3411 0.3772 0.2308 0.0631 -0.0395 0.6039 0.1178 44 0.1518 0.7621X -0.0119 0.3905 0.0749 -0.102 -0.0306 -0.032 47 -0.1953 0.8625X 0.0663 -0.0722 -0.0397 0.1897 0.0674 0.0047 49 0.1554 0.1606 -0.0232 0.1335 0.0005 0.1255 0.1169 0.7759X 50 0.6276X 0.1224 0.0086 0.433 -0.0382 0.2448 0.1094 0.0122 Avg 0.1581 0.4703 0.1203 0.1631 0.1647 0.1286 0.2029 0.1946 X indicates a Q-sort that exemplified a particular factor. Of the twenty participants, six exemplified factor 2, two exemplified factor 8, and one exemplifying participant Q-sorts for factors 1 and 5. Factor 2 was clearly the most popular factor within this participant group, yet it is also interesting that those who scored low for factor 2 exemplified other factors, and both of those that exemplified factor 8 came from this group. When looking at autistic male and female respondents together, it is clear that factor 2 indicates the most dominant and popular view amongst the autistic people who took part in the study, yet eighteen of twenty-six participants did not exemplify this factor, showing the diversity of views amongst this cohort of participants. Table 4.14.5: Non-autistic fathers – participants by demographic data Q-sort No. Practitioner Academic Age Intervention 41 52 53 49 56 54 ABA, PECS, SStr. 173 Only three of the participants that took part in the study were non-autistic fathers of autistic children, none of these participants were practitioners or academics in the field, yet one indicated that they utilised practices such as ABA, PECS and Social Stories. Table 4.14.6: Non-autistic fathers – participation factor correlation scores Q-sort No. F1 F2 F3 F4 F5 F6 F7 F8 41 0.5301 0.2398 -0.2939 0.1482 0.1437 0.2562 0.469 0.0156 53 0.4833 0.4199 0.1288 0.0683 0.3355 0.098 0.3072 -0.0961 56 0.6226 0.0851 0.5702 0.0124 0.2398 -0.0752 0.1348 0.2552 Avg. 0.5453 0.2483 0.135 0.0763 0.2397 0.093 0.3037 0.0582 All three non-autistic fathers who participated in the study had a stronger correlation to factor 1 than the other factors (0.5453), yet none exemplified a factor 1 viewpoint, with participant P53 seemingly mixing together influences from both factors 1 and 2. The strongest correlation with factor 1 was that of participant P56 who also stated that they utilised practices based on ABA. Table 4.14.7: Non-autistic mothers – participants by demographic data Q-sort No. Practitioner Academic Age Intervention 12 42 PECS. 13 51 (SCERTS). 20* 50 ABA. 21 38 22 38 33 44 SStr. 36 40 ABA, PECS, SStr. 43 41 51 46 SStr. 54 42 ABA. 55 Y 53 174 60* Y Y N/K (ABA). * Indicates that these participants asked to take part in the further follow-up questions as part of the study. Twelve non-autistic mothers of autistic children participated in the study, with two also being practitioners and in addition, one of those mothers being an academic. Four of these mothers indicated that they had utilised at least some aspects of ABA-based practices. Table 4.14.8: Non-autistic mothers – participation factor correlation scores Q-sort No. F1 F2 F3 F4 F5 F6 F7 F8 12 0.4927 0.5018 0.2191 -0.0881 0.0784 0.1781 0.3206 -0.0802 13 0.7116X 0.2319 0.1456 0.0703 0.1348 0.166 0.2055 0.2397 20* 0.8298X -0.1689 0.0536 0.0658 0.1586 -0.1089 -0.022 0.255 21 0.7222X -0.063 0.0143 0.2877 -0.1134 -0.1014 0.1741 0.0534 22 0.3565 0.6454X 0.1082 0.2598 0.2772 0.1943 0.1293 0.09 33 0.425 -0.0885 0.0997 0.5948 0.134 0.1765 0.3091 0.2011 36 0.3985 0.0742 0.2358 0.533 0.3875 0.1751 -0.1006 0.2607 43 0.6438X 0.0946 -0.0822 -0.0074 0.1612 0.0635 0.3941 -0.1812 51 0.2857 0.105 -0.2571 0.2871 0.0854 0.431 0.2263 0.1617 54 0.7669X -0.1303 0.0861 0.1868 0.0597 -0.1655 0.1007 0.3085 55 0.3963 0.3352 0.3417 0.3893 -0.0479 0.1953 0.3108 0.1821 60* 0.3529 0.344 -0.1266 0.2625 0.1522 0.6358X 0.0701 0.0382 Avg. 0.5318 0.1568 0.0699 0.2368 0.1223 0.1533 0.1765 0.1274 * Indicates that these participants asked to take part in the further follow-up questions as part of the study. The dominant factor amongst this group was factor 1, averaging a correlation of 0.5318 and five of the twelve respondents exemplifying this factor. Participant P22 exemplified factor 2 however, and participant P60 exemplified factor 6. 175 Table 4.14.9: Non-autistic nor parent practitioners and academics by demographic data No. Gender Practitioner Academic Age Intervention 3 Male Y 33 PECS, SStr. 4 Female Y 25 TEACCH, PECS, SStr, II. 5 Female Y 32 TEACCH, PECS, SStr, SCERTS. 6 Female Y 30 Sstr. 10 Female Y 29 11* Female Y Y N/K II. 14 Male Y 41 ABA, TEACCH, PECS, SStr, II, Low-A. 16 Female Y 36 TEACCH, II, SCERTS, PECS, SStr. 23 Female Y 40 TEACCH, PECS, SStr. 38 Male Y Y 60 40 Male Y 24 42 Female Y Y 39 45 Female Y 53 46 Female Y 48 TEACCH, SCERTS, SStr. 48 Female Y 55 TEACCH, SCERTS, SStr, PECS. 52 N/K N/K N/K N/K 57 Female Y 24 58 Female Y 41 TEACCH, II, PECS. 59 Female Y 39 * Indicates that this participant asked to take part in the further follow-up questions as part of the study. Nineteen participants within the study sample neither identified as being on the autism spectrum, nor as parents of autistic children, fourteen being female, four male and one participant not indicating a gender identity. Of these sixteen indicated that they were practitioners working with autistic children, and five stated that they were academics working in the field. Participant P52 did not fill in their demographic data, but was included in this grouping of participants rather than the other categories. The most popular intervention cited by this group was that of TEACCH (n=8), followed by Intensive Interaction (n=5) and SCERTS (n=4), with only one following practice based on the principles of ABA. 176 Table 4.14.10: Non-autistic nor parent practitioners and academics – participant factor correlation scores No. F1 F2 F3 F4 F5 F6 F7 F8 3 0.7362X 0.0501 0.2314 0.1119 0.0199 0.3569 -0.0396 -0.119 4 0.4456 0.1714 0.2667 -0.0566 -0.0107 -0.0277 0.4397 0.4488 5 0.4507 0.4677 -0.1574 0.2817 0.4206 0.0767 0.1598 0.1504 6 0.5117 0.2358 0.085 0.4581 0.1297 0.1739 0.0722 0.3158 10 0.6111X 0.1673 0.025 0.2753 0.0346 0.4138 0.2878 0.0976 11* 0.1026 0.2973 0.6654X 0.1607 -0.0529 -0.01 0.2521 0.3867 14 0.4949 0.052 0.2779 -0.0287 0.4586 0.127 0.3437 0.0127 16 0.1933 0.3087 0.2272 0.3416 0.3705 -0.0144 0.5121 -0.1549 23 0.2205 0.7345X -0.0282 0.0961 0.0183 -0.339 0.2196 0.0194 38 0.2025 0.0369 0.0302 0.068 0.2347 0.2547 0.7089X 0.1908 40 0.1502 0.3874 0.0576 0.306 0.3765 0.3786 0.2286 0.2387 42 0.102 0.0792 0.0676 0.3243 0.7714X 0.0596 0.0091 0.1734 45 0.2995 0.1433 0.1908 0.0492 -0.0164 -0.0624 0.6576X 0.3195 46 0.4355 0.1155 0.2285 0.0687 0.16 0.5814 0.179 0.2964 48 0.1901 0.0569 0.3409 0.214 0.4862 0.0636 0.6009 -0.0046 52 0.1631 0.4122 0.0158 0.0317 0.0248 0.1687 0.7116X -0.0088 57 -0.0484 0.4452 0.1892 0.4018 0.116 0.5638 0.2296 -0.0349 58 0.2639 0.6375X 0.1212 -0.0233 0.1787 0.1399 0.1317 -0.3596 59 0.2086 -0.1069 -0.0963 0.7276X 0.1361 0.1771 0.0395 0.1592 Avg. 0.3018 0.2469 0.1441 0.2004 0.203 0.1622 0.3023 0.112 * Indicates that this participant asked to take part in the further follow-up questions as part of the study. The factor correlation scores for non-autistic practitioners and academics did not indicate a dominant factor amongst this group. However, the highest ranked was factor 7 (0.3023), which attained a higher average than it did by any other group other than the three non-autistic fathers (0.3037). This was closely followed by factor 1 (0.3018) and factor 2 (0.2469). None of these represent a strong correlation between this grouping of participants and any one factor though. Of the nineteen in this group, three exemplified factor 7, two exemplified both factors 1 and 2, and one exemplified factors 3, 4 and 5. This can be interpreted as representing an eclectic array of views, but with a stronger influence from 177 TEACCH and SCERTS than the other groups and with some within the cohort favouring an approach more akin to factor 7. 4.15 Z-scores by factor and a priori category In this section the results from the Q-sort factor analysis are displayed utilising the a priori categories that the initial Q-set of statements was collected from. Each of the tables from 4.15.1 through to 4.15.11 indicate both the z-score and ranking out of 42 (shown in brackets in the tables) for each statement in the Q-set, so that comparisons between factors can be made. Table 4.15.1: Classical Humanism – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...teaching traditions and heritage. -1.836 (40) -1.317 (38) -1.401 (39) -0.872 (31) -0.882 (34) -1.401 (40) -2.041 (41) -0.613 (30) ...teaching the three R’s: reading, writing and arithmetic. -0.133 (25) -0.699 (30) -0.467 (31) 1.182 (6) 0.824 (9) 1.401 (4) -2.043** (42) 0.827 (10) ...long-range goals and well-established standards. 0.474 (16) -0.641 (29) -1.868 (41) 0 (20) -0.258 (23) 0.934 (10) -1.16 (38) -0.95 (36) ...learning being controlled, directed or guided by teachers. -0.565 (31) -1.521 (40) -1.401 (38) -1.125 (36) -1.765 (42) -0.467 (31) -0.922 (37) -0.919 (35) **Indicates that a statement is a differentiating statement for that factor to a significance of P<.01. The statements derived from Scrinshaw’s (1983) category of ‘Classical Humanism’ were not generally as well received as other categories within the responses of the sample Q-set of participants, least favoured was the notion of ‘teaching traditions 178 and heritage’. Interestingly though, this statement was not as ill-favoured by factors 4 and 8 which included three exemplifying Q-sorts from autistic people. Also, the least preferred by the whole sample population was the idea of learning being ‘controlled, directed and guided by teachers’, yet somewhat less so by factors 1 and 6. Having ‘long-range goals and well-established standards’ was somewhat favoured by factors 1 and 6, yet was not seen as important by factors 3 and 8. The most favoured statement from this category was that of teaching the three R’s, gaining positive Z-scores for factors 4, 5, 6 and 8, yet significantly not favoured by factor 7, potentially reflecting the differing perceived communication needs of autistic people and the positionalities of those completing the Q-sorts in relation to these needs. Table 4.15.2: Liberal Humanism – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...training learners to take up roles in society. 0.315 (19) -1.039 (34) -0.467 (26) -0.138 (23) -0.541 (29) 1.868** (1) -0.922 (36) -0.735 (32) ...promoting independence. 1.318 (5) 0.249 (17) 0 (18) 1.687 (2) 0.4 (16) 0 (18) 1.446 (4) -0.858 (33) ...providing structure, order and discipline. -0.903 (34) -1.376 (39) 0 (23) 1.32 (4) -0.4 (25) -0.467 (29) -0.763 (33) 1.256 (6) ...producing responsible individuals able to play a full part in society. 1.077 (7) -0.29 (26) -1.401 (37) 0.929 (10) -0.4 (26) -0.467 (30) -0.399 (29) -0.735 (31) **Indicates that a statement is a differentiating statement for that factor to a significance of P<.01. A great deal of tension was found within the category of ‘Liberal Humanism’ (Scrimshaw, 1983). ‘Training learners to take up roles in society’ was rated of the utmost importance by factor 6 and of some importance by factor 1, but far less so 179 by the other factors – however, this could have been due to an individualistic interpretation of the statement. In contrast to this, ‘producing responsible individuals able to play a full part in society’ carried normative connotations and was not at all favoured by factor 6, but was very positively ranked by those exemplifying factor 1. ‘Promoting independence’ was the most favoured statement within this category across factors, yet was seen negatively by the autistic people who exemplified factor 8. Despite the somewhat pro-Liberal Humanist approach of factor 1 on the other statements, the notion of ‘providing structure, order and discipline’ was far less favoured, producing a level of common ground on this idea with factor 2, however this statement was ranked positively by factors 4 and 8 which included three exemplifying Q-sorts from autistic people within the sample participants. Thus, this could be read that some of the autistic people taking a more pragmatic and less radical approach to educational ideology appreciate a level of structure and order being provided. Table 4.15.3: Progressive ideology – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...celebrating learners and not trying to ‘normalise’ them. -0.841** (33) 2.089 (1) 1.401 (4) 1.068 (8) 2.164 (1) 1.401 (3) 0.637 (13) -1.869** (41) ...to not accept values and morals, but to examine them in... -1.025 (36) 0.225 (18) -0.934 (32) 0.448 (17) -0.541 (30) -0.934 (35) -0.918 (35) -0.214 (24) ...goals being dictated by the interests of the learner. -0.412 (30) 0.346 (16) 0 (21) -1.182 (38) -0.483 (27) 0 (22) 0.962 (8) -1.256 (38) ...empowering learners to learn how to think for themselves. 1.067 (8) 1.314 (3) 0 (24) 1.32 (5) 0.683 (11) 1.401 (6) 0.161 (18) 0.521 (14) 180 **Indicates that a statement is a differentiating statement for that factor to a significance of P<.01. The category of ‘Progressive’ ideology (Scrimshaw, 1983) also created a large degree of disagreement between factors. Not ‘accepting morals’, but examining them, along with the goals of learning being ‘dictated by the interests of the learner’ were generally more positively ranked by factor 2, and also that of ‘empowering learners to learn how to think for themselves’, although this statement garnered more support by those exemplifying other factors too. The statement regarding ‘celebrating learners and not trying to ‘normalise’ them’ was very highly rated, other than by factors 1 and 8 which regarded this notion as indicating an over-emphasis on learner-led ideology. It is perhaps this difference which seems most significant between factors 1 and 2, particularly in conjunction with the contrast in ‘radical views’ that accompany this difference. Table 4.15.4: Radical ideology – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...radical change in society. -1.444 (38) 1.54 (2) 0.934 (7) -1.435 (39) -1.224 (38) -1.401 (39) -0.109* (22) 1.011 (8) ...pupils decide how to spend their time. -2.143 (42) 0.052* (24) -1.401 (40) -1.744 (42) -1.623 (41) -0.934 (32) -0.759 (32) -1.562 (40) ...equality of status between staff and pupils. -1.679 (39) 0.856** (10) -0.467 (27) -0.872 (32) -1.623 (40) -0.934 (33) -1.721 (40) -0.919 (34) ...empowering students to be active and critical in their learning. 0.118 (20) 1.107 (6) -0.934 (34) 0.562 (15) 0.541 (13) 0.934 (11) -0.082 (21) 0.092 (21) *Indicates that a statement is a differentiating statement for that factor to a significance of P<.05, **Indicates that a statement is a differentiating statement for that factor to a significance of P<.01. 181 This category is highly indicative of the main ideological differences within the sample set. When one looks at the differences in rankings on these statements between factor 2 and all the other factors, one can see that factor 2 is somewhat indicative of the radical educational ideology as set out by Scrimshaw (1983). For instance, although the statement ‘pupils decide how to spend their time’ was ranked neutrally by factor 2, but very negatively by the other factors. When one contrasts these rankings for factor 2 with those of factor 1, and also the higher rankings given by those exemplifying factor 1 for ‘Liberal Humanist’ ideology, that despite the vast diversity of views within the data set, there is a ‘Liberal Humanist’ (and largely parental view) versus a ‘Radical’ (and largely held by some autistic people) perspective. It should be remembered though that those exemplifying factor 1 were not in favour of the ‘Classical Humanist’ view of learning being directed and controlled by teachers (see table 4.15.1), and so the tension over how learner-led education should be, is nuanced as to the extent that education should or can be learner-led. Table 4.15.5: Behaviourist ideology and practice – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...reducing inappropriate and disruptive behaviours before... 1.373 (4) -1.126 (35) 1.401 (3) 0.562 (14) -0.599 (32) -0.467 (26) -0.277 (26) 0.123 (19) ...examining the causes and consequences of behaviour. 0.582 (15) -0.503 (27) 1.868 (2) -0.253 (24) -0.541 (31) -0.934 (34) 1.282 (6) 0.521 (13) ...helping people on the autism spectrum become indistinguishable... -1.909 (41) -2.039 (42) -0.934 (35) -0.391 (28) -1.141 (36) -1.401 (38) -0.881 (34) -2.083 (42) ...every moment being seen as an opportunity for -0.921 (35) -1.756 (41) -1.868 (42) -1.435 (40) 1.765** (3) -1.868 (41) -1.319 (39) -0.521 (28) 182 reinforcing... **Indicates that a statement is a differentiating statement for that factor to a significance of P<.01. Within the category of ‘Behaviourist’ ideology and practice, a great variety of responses was also found. Significantly, the Lovaas (1987) inspired statement of ‘helping people on the autism spectrum become indistinguishable from their peers’ was the least favoured statement amongst the sample as a whole. The notion of ‘every moment being seen as an opportunity to reinforce learning’ was also largely seen in the negative, although significantly not so by those exemplifying factor 5. It could be the case that those exemplifying factor 1 (or others) rejected the notion that ‘every moment’ should be seen in this way, yet it should also be noted that this statement was not as negatively loaded by factor 1 than many of the other factors. An important statement in regard to ‘Behaviourist’ ideology and practice was that of ‘examining the causes and consequences of behaviour’, which could be said to be a central tenet of the ABC method of functional assessment. Although being highly ranked by factors 3 and 7, this was negatively ranked by those exemplifying factors 2, 5 and 6. Although positively ranked by factor 1, somewhat surprisingly, given that a number exemplifying this factor stated they were utilising ABA-based practices, only ranked this statement 15th out of 42 overall. A wider disparity was found however regarding the statement ‘reducing inappropriate and disruptive behaviours’; ranked highly by factors 1 and 3, and very low by factor 2. Given these rankings, it could be said that factor 1 represents a Liberal Humanist ideology applied in particular to the perceived need to manage ‘challenging behaviour’. The theory of reinforcement or the goal of normalisation may well be of less importance to people following this perspective. 183 Table 4.15.6: Functionalist ideology and practice – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...addressing the core deficits of learners. 0.742 (12) -1.235 (37) 1.868* (1) -0.31 (26) -1.482 (39) -1.401 (37) -0.602 (30) 0.306 (16) ...developing social skills. 0.941 (9) -0.844 (33) 0 (19) 1.435 (3) 0.283 (19) 0 (23) 1.88 (1) 0.827 (9) ...the development of functional communication. 1.549 (2) 0.201 (19) -0.934 (33) 0 (22) 0.599 (12) 0.934 (7) -0.157 (23) 0.306 (18) ...a curriculum based upon developmental milestones. -0.229 (27) -1.131 (36) -0.934 (36) -1.068 (35) 1.282** (5) -1.868 (42) -0.166 (24) -0.429 (27) *Indicates that a statement is a differentiating statement for that factor to a significance of P<.05, **Indicates that a statement is a differentiating statement for that factor to a significance of P<.01. The category of statements based on ‘Functionalist’ ideology and practice also gave rise to range of responses, significantly with those exemplifying factor 2 ranking the statements far lower than those exemplifying factor 1. The notion of a ‘curriculum based upon developmental milestones’ was somewhat negatively ranked by factor 1 however, yet was highly ranked by factor 5. The functionalist statement that resonated most with those exemplifying factor 2 was the ‘development of functional communication’, yet this was seen as of utmost importance by those exemplifying factor 1. A large disparity was seen between factors 1 and 2 regarding the ideas of ‘addressing core deficits of learners’ and ‘developing social skills’. One can see that a range of views are expressed within the sample regarding the ideals of functionalist normativity, yet these ideas are particularly rejected by those with views exemplifying factor 2. 184 Table 4.15.7: Ideology and practice relating to Relationship Development Intervention (RDI) – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...building motivation and tools for successful social interaction. 0.886 (10) -0.519 (28) -0.467 (30) 0.505 (16) 0.541 (14) 0 (21) 1.639* (3) 0.429 (15) ...helping pupils to take the perspective of others. 0.078 (21) -0.747 (32) -0.467 (28) 0.196 (18) -0.483 (28) 0 (25) 0.196 (16) 0.827 (11) ...helping pupils refer to others and share emotions. -0.151 (26) -0.71 (31) -0.467 (29) 0.62 (13) -1.165 (37) 0.467 (12) 0.56 (14) -0.214 (26) ...helping pupils to integrate sensory information. -0.837* (32) 0.116 (22) 0.467 (15) 0 (19) 0.941 (8) 0.467 (13) -0.201 (25) 0.123 (20) *Indicates that a statement is a differentiating statement for that factor to a significance of P<.05. The responses to statements based on the ideology and practice of ‘RDI’ were more muted than they were to the other categories, with the exception that those exemplifying factor 7 firmly highlighted the notion of ‘building motivation and tools for successful interaction’. Given the priority expressed by those exemplifying factor 1 for ‘developing functional communication’, it is perhaps unsurprising that this statement was also ranked fairly highly by factor 1. Given the prominence within the field of autism of the theory of mind thesis, it is perhaps surprising to see the relatively low ranks given for the statements regarding ‘helping pupils take the perspective of others’ and ‘helping pupils refer to others and share emotions’ – although perhaps less surprising that these were ranked particularly low by those exemplifying factor 2 given the critique of this theory within the autistic community (Milton, 2012a; 2014a – see Appendix B1: Overview of related articles and Appendix B2: Printed copies of related articles). The statement that gained the most approval from those exemplifying factor 2 was that of ‘helping pupils to 185 integrate sensory information’, yet this was significantly not seen as a priority by those exemplifying factor 1. Table 4.15.8: Interactionist ideology and practice – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...taking account of differing learning styles. 0.38 (18) 0.954 (9) 0 (20) 0 (21) 0.4 (15) 1.868 (2) 1.721 (2) 1.777 (1) ...being learner-led. -1.23 (37) 0.533 (15) 0 (25) -1.182 (37) -0.142 (22) -0.467 (28) 0.997 (7) -1.042 (37) ...the building of secure and trusting relationships. 0.708 (13) 0.774 (11) 0.467 (12) 1.997 (1) 0.683 (10) 0.934 (8) 0.801 (11) -0.184 (23) ...utilising the interests of learners. 0.614 (14) 1.066 (8) 1.401 (6) -0.367 (27) 0.341 (17) 0.467 (15) 1.398 (5) 1.133 (7) ‘Interactionist’ ideology and practice statements were generally ranked higher than other practice related categories, with the exception of the statement ‘being learner-led’. Perhaps highlighting the practical nuanced difference that would seem to exist between those exemplifying factors 1 and 2, this statement divided opinion, with factor 7 also ranking the statement highly. There was a level of consensus regarding the ‘building of secure and trusting relationships’, with those exemplifying factor 4 seeing this statement of being of the utmost importance. There was also generally positive responses to ‘utilising the interests of learners’ and ‘taking account of differing learning styles’, with the latter being seen of utmost importance by factors 6, 7 and 8. 186 Table 4.15.9: Building relationships category – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...employing calm and patient staff members. 0.377 (20) 0.74 (12) 1.401 (5) 0.986 (9) 1.082 (6) 0 (24) -0.077 (20) 0.306 (17) ...good communications between staff, pupils, and parents. 0.76* (11) 0.686* (13) 0.467* (13) 1.125* (7) 0* (20) 0.934* (9) 0.161* (17) 0* (22) ...the clarity of instructions given to learners. 0.028 (23) 0.589 (14) 0.467 (14) 0.815 (12) 0 (21) 0 (20) -0.285 (27) 1.654 (3) ...the provision of augmented communication devices. -0.343 (28) 0.189 (20) 0.467 (16) -0.758 (30) -0.624 (33) 0.467 (14) -0.397 (28) -0.214 (25) *Indicates that a statement is a consensual statement between all the factors to a significance of P<.05. Leading on from the ‘Interactionist’ category, the ‘Building relationships’ category also garnered a generally positive and consensual response from the sample, with the only statement reaching statistical significance: ‘good communications between staff, pupils, and parents’ coming from this category. The ‘clarity of instructions given to learners’ was ranked positively, but significantly so by factor 8 and positively by factors 2 and 4, showing that this was of greater perceived importance to the autistic people within the sample. ‘Employing calm and patient staff members’ was generally seen positively, but with some factors ranking it higher than others. The least favoured statement within this category was that of ‘the provision of augmented communication devices’, yet this statement was ranked positively by those exemplifying factors 3 and 6 (both practitioners in the field) and of utmost importance by the one non-autistic practitioner who exemplified factor 2 (see section 4.5). This range of responses possibly reflects the specific nature of this statement and the perception of universal need that participants were perhaps likely to have in completing this study. 187 Table 4.15.10: Enabling environments category – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...reducing the bullying of people on the autism spectrum by others. 0.422 (17) 1.18 (5) 0.934 (8) 0.872 (11) 1.823 (2) 0.467 (17) 0.523 (15) 1.777 (2) ...supporting transitions. 0.06 (22) 0.045 (25) 0.934 (9) -0.31 (25) 1.024 (7) -0.467 (27) 0.883 (10) -0.613 (29) ...giving learners personal space, and/or quiet spaces to retreat to. -0.361 (29) 1.106 (7) 0.934 (10) -0.505 (29) 1.623 (4) 0 (19) 0.756 (12) 1.562 (4) ...smaller class sizes. -0.02 (24) 0.077 (23) 0.934 (11) -1.63** (41) -0.341 (24) 0.467 (16) -0.039 (19) 0.643 (12) **Indicates that a statement is a differentiating statement for that factor to a significance of P<.01. Similarly to some of the statements from the ‘Building relationships’ category, the statement regarding the ‘reducing of bullying’ was generally positively ranked, yet more so by factors 2, 5 and 8, indicating that this was a strong priority for many participants who were on the autism spectrum. The notion of ‘supporting transitions’ was also generally positively ranked, but this time, less so by factors 2, 4, 6 and 8. This pattern was somewhat different again when considering ‘giving learners personal space, and/or quiet spaces to retreat to’, where those exemplifying factors 2, 3, 5, 7 and 8 all ranking this statement highly and factors 1 and 4 not doing so. Of all the statements within the ‘Enabling environments’ category, the least favoured was that of ‘smaller class sizes’, significantly least favoured by those exemplifying factor 4, yet as seen earlier (see Section 4.7), this was due to this being perceived as unrealistic and could be taking resources away from more pressing perceived needs. These results would indicate somewhat of a divide between those advocating for changes to the environment and the actions 188 of others (primarily factors 2 and 8) and those looking to the supporting the autistic person to make changes in order to ‘better navigate’ an unfriendly environment (factor 1). Table 4.15.11: General statements – z-scores by factor F1 F2 F3 F4 F5 F6 F7 F8 ...being informed by evidence-based practice. 1.441* (3) 0.152 (21) 0.467 (17) -0.986 (33) -1.082 (35) -0.934 (36) -0.682 (31) -1.348 (39) ...a tailored curriculum to meet individual need. 1.672 (1) 1.305 (4) 0 (22) -1.068 (34) 0.341 (18) 1.401 (5) 0.92 (9) 1.256 (5) *Indicates that a statement is a differentiating statement for that factor to a significance of P<.05. Although the general statement regarding ‘a tailored curriculum to meet individual need’ was highly ranked, this statement when taken in the light of the rankings of all the other categories can be seen as being interpreted differently by those exemplifying differing factors, particularly the dominant factors 1 and 2. A very interesting range of responses were also given to the statement regarding education ‘being informed by evidence-based practice’, with this being seen as highly important by those exemplifying factor 1, more neutrally by factors 2 and 3 and negatively by factors 4, 5, 6, 7 and 8 – producing a significant tension regarding this statement that differentiates factor 1 statistically from the other factors. 189 4.16 Analysis of follow-up question responses In order to examine the reasoning between the different discourses espoused by various stakeholders, participants were asked if they would like to contact the researcher in order to answer a number of open-ended interview questions. Of the sixty participants, six decided to do this, and all six opted for answering the interview questions via an exchange of emails (for a full transcript of answers see Appendix A23: Transcripts of interview responses). All six participants who chose to do this exemplified one of the factors extracted in the Q-sort factor analysis, ranging from participant P20 who most exemplified factor 1 of all participants and participant P31 who was one of two adults who identified as being on the autism spectrum who exemplified factor 1, through participants that exemplified factors 3, 6 and 4 (participants P11, P60, and P32 respectively – with participant P32 also identifying on the autism spectrum), and finally participant P8, an adult on the autism spectrum, practitioner and academic, whom exemplified factor 2. The participants were asked the following questions: 1. How would you describe autism in general, for example, as a disability or difference? 2. What do you consider to be the most essential educational priorities for children on the autism spectrum, and why? 3. What would you say has influenced your view concerning educational priorities for children on the autism spectrum, and why? 4. How do you think your educational priorities can be implemented in practice? 190 5. Is there anything else that you would like to add? In responses to these questions, an awareness of issues regarding the social and medical models of disability were shown, particularly in regard to the first question. Responses to this question ranged widely however, from those espousing a largely normative/functionalist model of autism to those presenting autism as a differing cognitive style to the ‘predominant neurotype’: “I am aware of the debate around this but I think I would say disability, given how hugely affected my son is at every single level of his functioning...I think it depends a great deal on where a child or adult sits on the spectrum...” (Participant P20 in response to Q1). In the above quote, participant P20 who exemplified factor 1 in their viewpoint, refers to their own son and how affected they are at ‘every single level of his functioning’ and then goes on to talk of the autism spectrum in a linear fashion ranging from mild to severe. This would at first sight suggest a normative / functionalist model of what autism is. “To me, nowadays, I would say the autism is less disabling to my son than are the Severe Learning Difficulties.” (Participant P20 in response to Q1). In this statement however, participant P20 separates out autism as a phenomena with ‘Severe Learning Disabilities’, yet both are seen as separate entities to their son’s identity, that presumably may be subject to being worked upon by 191 educational intervention. Both participants P20 and P31 preferred to use the term ‘condition’ to ‘disorder’ however, with participant P31 noting: “For some on the spectrum the disability is not primarily the social model, as their medical condition is profoundly disabling.” (Participant P31 in response to Q1). In this section, the social model of disability is seen as not applicable in cases where disability is seen as profound, and such cases are framed as a medical ‘condition’. When one moves beyond those exemplifying a factor 1 viewpoint however, one sees a differing picture emerging: “Recent research all points towards autism as an overall neurobiological developmental dysfunction...Each person is different and experiences a range of hyper and hypo sensitivities which interfere with sensory processing.” (Participant P11 in response to Q1). Participant P11 who exemplifies a factor 3 viewpoint framed autism in terms of neurobiological ‘dysfunction’, but the main core dysfunction referring to interference with the processing of sensory information. “In general terms, I would describe autism as a difference and not a disability. But I think it is more complicated than that...the restrictions placed on autistic people can be highly disabling, and the difficulties I have referred to can be greatly exacerbated due to environmental and attitudinal barriers.” (Participant P60 in response to Q1). “I think it is both a disability and a difference...Another issue is that disability is in many ways a social construct.” (Participant P32 in response to Q1). 192 Participants P60 who exemplified a factor 6 view and participant P32 who exemplified a factor 4 view, begin to describe autism in terms of a social model of disability and even a ‘social construct’. The quote below shows the view of participant P8 who exemplified factor 2 and describes autism in terms of a differing ‘cognitive style’ to be celebrated and accepted: “I would describe autism as a distinctly different cognitive style to the PNT...I do accept that in many cases it can be seriously disadvantageous being autistic – while, at other times, it can be an advantage. If not all autistic people are ‘disabled’ – which they are not – I do not see how autism in general can be regarded as a disability.” (Participant P8 in response to Q1. Note that PNT means ‘predominant neurotype’). When asked about their educational priorities and why they would see them as being of utmost importance, the participants gave a range of responses, some related to the learning of new or ‘adaptive skills’: “Top priorities for me would be learning to communicate and learning to navigate the world happily and safely.” (Participant P20 in response to Q2). “What I think is most important are adaptive skills to cope with the environment...and it is helpful to learn how not to make other people put up social barriers before they actually know the autistic person.” (Participant P32 in response to Q2). Although these two quotes talk of the need to learn adaptive skills, there is a differing emphasis between them. Participant P20 who exemplified a factor 1 viewpoint suggests a somewhat unchanging world that the person on the autism 193 spectrum needs to learn to adapt to. Participant P32 who exemplified a factor 4 viewpoint, talked of such skills as useful when employed in particular circumstances, so that people do not treat you unsympathetically before getting to know you. Learning a few ‘social graces’ would be quite a different aim than what would seem to be a focus on ‘independent living skills’ from participant P20. In comparison, participant P8 who exemplified a factor 2 approach highlighted the need for self-understanding and to build an understanding of others, so that one can make informed autonomous choices on how to act within the world. This aim could be said to be an attempt to reduce the ‘double empathy problem’ between the autistic and non-autistic dispositions (Milton, 2012a; 2014a – see Appendix B1: Overview of related articles and Appendix B2: Printed copies of related articles). These ‘outcomes’ are also framed as leading to better self-esteem and mental well-being. “...understanding of self should lead to greater capacity for appropriate choice making, and understanding of those around them should help the individual understand better what their own problems might be, and how to overcome them. Overall, I believe that these two learning outcomes will lead to higher self-esteem and reduce risk of poor mental well-being.” (Participant P8 in response to Q2). In contrast again was the view of participant P60 who exemplified a factor 6 viewpoint. In this account of educational priorities in response to Q2, they talked of ‘inclusion’ as not needing a radical overhaul of the educational system, but small steps and adjustments to be made: 194 “There's no point in trying to 'include' children in an environment which is completely wrong for them. Therefore we need a rethink schools and curricula if we're serious about inclusion, but having said that, it's often very small adjustments and flexibilities that can make a big difference educationally to autistic children.” (Participant P60 in response to Q2). Such a spread of narratives show the contrasting views between those supporting a more normative medical model approach to autism through to those who do not, with a number of participants holding ‘middle ground’ views. When asked in question 3 what had influenced the participants in their educational priorities, it was interesting to note that almost all talked of their personal experiences, and the participant who did not stated their reasoning as if factual (participant P11). Participants P20 and P31 who exemplified a factor 1 viewpoint, highlighted their disgruntlement with current systems and how that led them to support ABA-based practices. This dissatisfaction arose from a perceived lack of standards and expectations for their child: “The biggest influence on me was the utterly woeful low expectations I found in a state TEACCH and SALT-based school for my precious boy. They seemed to want to give up on his learning any skills at all, at age 3, and just babysit him till the inevitable institution beckoned, when I could no longer cope with him at home. This made me very angry and I found that ABA was a far more positive and enabling methodology, which taught him how to talk, how to stop expressing himself through self-harm, how to use a toilet, how to eat a healthy diet etc etc.” (Participant P20 in response to Q3). In the above narrative, ‘woeful low expectations’ are related to SALT provision and the TEACCH method seen to be offered by ‘state provision’. This perception of 195 low expectations regarding what their child was capable of was then linked to them ‘inevitably’ being institutionalised in later life. ABA in contrast is perceived as being responsible for their child learning communication and daily living skills. A similar account was given by participant P60 who exemplified a factor 6 and somewhat ‘eclectic’ viewpoint, yet within this narrative was a longer description of their child other than ‘precious’ (perhaps perceived as in need of protection?). The description is a highly positive one, yet this is immediately contrasted with that of other people viewing their child as ‘sub-human’ and that without them ‘fighting’ as parents they would be offered limited educational opportunities: “Giving birth to a bright, funny and generally wonderful autistic child, and realising that not only do most other people perceive him as some sort of a sub-human, but that unless we fight very hard (and perhaps even despite this), he will be offered nothing like the educational opportunities of other children.” (Participant P60 in response to Q3). Participants P32 and P8 (exemplifying factors 4 and 2 respectively) both talked of their experiences of being on the autism spectrum as influential on their viewpoint, with participant P32 saying they had been diagnosed as an adult having already found coping strategies for navigating social life. Participant P8 however was highly motivated by helping others on the autism spectrum in ways that they saw as beneficial to themselves, a benefit seen to be made possible from sharing an autistic perspective on the world: “My own experiences in developing and understanding of self has been influential, as has all the work I have done with autistic individuals to support a similar process...Understanding the behaviour of an autistic child and not responding to it 196 from a PNT perspective would, I believe, have immense positive impact on children at school.” (Participant P8 in response to Q3). The initial view one holds regarding what autism is can be said to be highly influential on what one perceives educational priorities to be, yet all have been influenced primarily by their own personal experiences and thus dispositional outlooks. What was considered ‘evidence-based practice’ was not mentioned by any of the interviewees, despite its perceived importance statistically as a priority for those exemplifying a factor 1 viewpoint. Such differences in view, between a medical/behavioural view and a full social model or account akin to a ‘neurodiversity paradigm’ (Walker, 2014) create significant tensions however, with regard to what, how and why educational issues should be prioritised. This tension is highlighted by the responses participants gave to question 4 regarding the implementation of their educational priorities, for participant P20 who exemplified factor 1, this meant the utilising of ABA-based practices in school settings teaching a child how ‘to learn’: “More ABA techniques in autism schools and units, so the staff know how to motivate the child to learn rather than just singing him nursery rhymes for 15 years.” (Participant P20 in response to Q4). Interestingly, participant P31 who also exemplified a factor 1 approach but also identified as being on the autism spectrum responded with a novel idea: 197 “Start getting nine year olds involved in policy making.” (Participant P31 in response to Q4). When comparing participant P20 with those exemplifying other factors, differences immediately appear however: “Currently a big problem is that 'difficult to manage' behaviour is seen as needing to be 'coped with' rather than looking for underlying sensory triggers...Self injury is poorly understood and still leads to restraining practices that do not address the pain and confusion that leads to them.” (Participant P11 in response to Q4). In this quote, participant P11 challenges the way the behaviour of autistic children are interpreted and ‘managed’, drawing attention to the pain and confusion caused by sensory overload. Participant P60 who exemplified a factor 6 viewpoint highlighted the differing expectations and standards offered to autistic as against non-autistic children, and also stated that there was a need to involve autistic adults in the training of educational professionals. Whilst participant P32 who exemplified a factor 4 viewpoint stated that implementation of educational priorities depended on where someone sat ‘on the autism spectrum’. Participant P8 did not comment on this question, but in response to the previous question talked of the need to build understanding of self and others. When participants were asked if they had anything more to add, the following was noted by participant P20: 198 “I wish those who are anti could see the good that I see in ABA, and stop thinking that it is trying to normalise, when really it is helping many of our kids live happier lives. I wish somehow there would come a will for change and improvement in our lacklustre and outdated autism education system in the UK.” (Participant P20 in response to Q5). My own understanding (from a perspective akin to factor 2) of those exemplifying a factor 1 viewpoint as espousing a normative approach is contested here, yet the ‘how’ of trying to help autistic children lead ‘happier lives’ is disputed and in tension between differing dispositional perspectives and educational objectives. What is clear from many participants is a disillusionment regarding the state of educational provision for children on the autism spectrum, whatever their ideological stance was. 199 Chapter 5: Meta-analysis “Give me a place to stand and I will move the Earth.” (Archimedes, cited from Wikiquote, 2015). 5.1 Introduction In Chapter 4: Findings, it was outlined how eight factors were extracted from the data, with two dominant factors exerting a great deal of influence on the data-set. In this chapter, the findings are explored in greater depth before moving on to a discussion of the findings in Chapter 6: Discussion. In Section 5.2 a summary comparison is given of the factors extracted, including an examination of the similarities and differences between the dominant factors 1 and 2 and factors 3 through 8, showing these positions to be differing examples of positions in-between these two dominant and somewhat opposing factors. The data from individual Q-sorts and stakeholder groupings were then analysed in relation to their respective correlation scores with the dominant factors and charted diagrammatically to show that there exists three differing distributions of educational ideology when participants are separated by stakeholder grouping. This ‘three-way dispositional problem’ is then discussed in Section 5.3 in relation to previous published theorising (Milton 2012a; 2014a – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles) and the theoretical concepts of Pierre Bourdieu (1986). Section 5.4 presents an initial discussion regarding the amount of potential consensus or ‘common ground’ between the views of the whole sample from this study in order to begin answering 200 the second research question posed in this thesis. Within this chapter, a number of points are discussed from the personal perspective of the author, who within this thesis exemplified a factor 2 viewpoint (see Appendix A20: Q-sort for participant P1), in order to contrast this view with those expressed by those exemplifying other factors. 5.2 A summary comparison of factors extracted From the Q-sort factor extraction method, eight factors were identified that statistically explained 72% of the variance in the data sets. Of these factors, two were dominant, making up 32% of the variance, with one third of the individual Q-sorts exemplifying one of these two factors (factors 1 and 2). Factors 3 to 8 contained 11 exemplifying Q-sorts between them, showing marked differences to factors 1 and 2, and 29 Q-sorts did not exemplify any of these factors, but were influenced to different measures by each of them. My own Q-sort exemplified a discourse characteristic of factor 2 in the data-set (see Appendix A19: Q-sort for participant P1) and therefore, despite the relative objectivity of the data produced by the Q-sort method, my interpretations of the data will always be that of someone occupying a position, yet it is argued here that wherever one’s positionality is along this spectrum of viewpoints, such interpretations would necessarily be affected. As the data from this thesis highlights, it is not possible within the area of setting educational priorities for children on the autism spectrum to take up an objective ‘view from nowhere’ (Nagel, 1989). 201 A number of participants exemplifying a factor 1 viewpoint expressed the need for a tailored curriculum. However, the language used by these participants was more akin to functionalist or behaviourist ideology, for example: ‘successful outcomes’, ‘what works’ and ‘varying condition’ (see section 4.16 in Chapter 4: Findings). When looking at the other statements ranked highest by those exemplifying this viewpoint, one found ‘developing functional communication’ (z = 1.549), ‘reducing inappropriate and disruptive behaviours’ (z = 1.373), and ‘promoting independence’ (z = 1.318). This factor was found to be prevalent amongst non-autistic parents of autistic children. The most exemplifying individual Q-sort for this factor was that of participant P20, who in saying why they rated the statement regarding ‘developing functional communication’ as of utmost importance said: “Because otherwise he is trapped in a world where he cannot communicate his hopes and fears, particularly when I am dead and cannot look out for him.” (Participant P20). To ‘functionally communicate’ is seen a primary aim for this participant, a mother to an autistic child who indicated that they used the ABA-based practices. Within this narrative is that of the autistic child ‘being trapped in a world’, which would perhaps upset those exemplifying a factor 2 viewpoint. Yet, this is set against the prospect of an autistic child unable to communicate and thus advocate for their needs being met. This becomes a palpable fear for parents regarding ‘when I am dead and cannot look out for him’. As a parent to an autistic child who is classed as having severe learning disabilities and communication difficulties, I have some 202 sympathy and understanding for this fear, but as someone with a view more akin to a factor 2 perspective, would not see teaching a child new skills of resilience to be the prime educational priority. Similarly, when asked why participant P20 also rated ‘reducing inappropriate and disruptive behaviour’ of utmost importance, they talked about aggressive behaviour and self-harming, and the prospect of this leading to residential care: “To send him to residential would break my heart, ergo I needed to teach him early on to self-manage his behaviours.” (Participant P20). This participant is clearly fearful of their child’s potential life within a ‘residential home’ and sees the route away from this as teaching their child to ‘self-manage his behaviours’. For me however, looking at such issues from a factor 2 perspective, autistic people are self-managing their actions all of the time, not always successfully (however that may be defined by various people). My priority would not be primarily on helping the autistic person to change, but on radical change to the structures and culture which make surviving and thriving as an autistic person so difficult. Those exemplifying a factor 1 viewpoint rated statements related to pupil-led activities and critical pedagogy low, and by comparison to other factors rated liberal humanist ideology and the priority of basing education on ‘evidence-based practice’ relatively highly. Education from this viewpoint is framed within a seemingly normative perspective: 203 “...of the skills required in order to navigate the world as an adult.” (Participant P20). Not doing so is seen as a form of neglect or discrimination, reducing expectations and preventing the development of ‘functional skills’, and leaving autistic people to be ‘in their own world’ or left with their ‘obsessions’. Such a narrative seemingly utilises a normative and/or medical/deficit model of autism being applied to what autism is. As an example, the narrative constructions of those exemplifying a factor 1 viewpoint utilise normative expectations as justifications with phrases used by participants such as ‘no child in education...’ and ‘ultimately children need...’ (see Section 4.16 in Chapter 4: Findings). Participants exemplifying factor 1 indicated more strongly the need for learners to respect authority and hierarchy than did those exemplifying other factors, but interestingly still rated the idea of ‘learning being controlled, directed or guided by teachers’ somewhat negatively (although less negatively than other factors). Factor 1 indicates a point of view that would appear against radical/critical pedagogy (advocated by those exemplifying factor 2), whilst being in favour of a normative functionalist or behavioural approach that addresses perceived challenges located primarily in the autistic learner. The very low score attained by the statement: ‘helping people on the autism spectrum become indistinguishable from their peers’ (z = -1.909) would indicate that full ‘normalisation’ is not the intent of this point of view however. Whilst being ‘indistinguishable’ is not a goal for 204 those exemplifying factor 1, looking to equip autistic children with ‘skills’ to navigate a normative social environment is highly prioritised. This data would suggest that factor 1 displays a viewpoint akin to the theory of Positive Behaviour Support (PBS) (Hastings, 2013) and is the viewpoint with the most influence over parental accounts within the sample. The statements that distinguish factor 1 from all the other extracted factors to a statistically significant level was the need for educational priorities to be informed by evidence-based practice, and most significantly, those exemplifying factor 1 rated: ‘celebrating learners and not trying to ‘normalise’ them’ in the negative, less negatively than factor 8, yet with all the other factors rating the statement in the positive, particularly those exemplifying factor 2. Although like factor 1, a tailored curriculum was rated highly, those exemplifying a factor 2 viewpoint indicate a perspective in favour of radical and progressive principles and interactionist practice: ‘celebrating learners and not trying to ‘normalise’ them’ (z = 2.089), ‘radical change in society’ (z = 1.54), ‘empowering students to be active and critical in their learning’ (z = 1.107), ‘utilising the interests of learners’ (1.066). Factor 2 can be seen to thus be anti-normative in its approach: “Because being normal isn’t being happy.” (Participant P19). “Difference should be accommodated, accepted and celebrated.” (Participant P47). The accounts of those exemplifying the factor 2 perspective indicated an anti-normalisation stance indicative of a ‘neurodiversity paradigm’ and social model of 205 disability (Walker, 2014). Seeking normalcy in these accounts is seen as a damaging pursuit or abhorrent, with effort needed to reduce social marginalisation. Such a perspective was not only strongly held by a number of autistic people (n = 8/26) however, as a small number of non-autistic people also exemplified such a perspective (n = 3/34). Therefore, although an autistic dispositionality was a strong indicator of participants taking up a factor 2 positionality in terms of educational ideology, this was not an exclusive influence. The approach highlighted by factor 2 is also clearly against a normative functionalist or behaviourist theory and practice: ‘reducing inappropriate and disruptive behaviours’ (z = -1.126), addressing the core deficits of learners (z = -1.235), ‘every moment being seen as an opportunity for reinforcing learning (z = -1.756), as well as being against Classical Humanist educational ideology. The factor 2 perspective largely rejected Liberal Humanist views (as opposed to factor 1), stating progressive or radical viewpoints to support their reasoning. Of the eleven participants who exemplified factor 2, eight of them were autistic (including my own Q-sort P1) and five of these participants held multiple positionalities regarding their engagement with the field of autism. Of the three participants exemplifying this factor who were not identifying themselves as being on the autism spectrum, one was a mother of a child in a mainstream school setting, and two were practitioners. None of these participants said that they were currently using ABA, but four said they were utilising TEACCH, and four said that they were utilising Intensive Interaction (II). 206 Both the distinguishing statements for factor 2 indicated areas of radical / progressive ideology. Firstly, the statement: ‘pupils decide how to spend their time’, was marked somewhat neutrally by those exemplifying factor 2, yet this was significantly different to the other factors which all marked the statement very negatively. Similarly, but to a greater level of statistical significance were responses to the statement: ‘equality of status between staff and pupils’ which was rated in the positive by those exemplifying factor 2 and in the negative by all the other factors. Table 5.2.1: Table of factors by similarities and differences to factors 1 and 2 Factor Similarities to factor 1 Similarities to factor 2 Distinguishing statements Review of qualitative statements and general notes 3 Seeming need to look at ‘disruptive behaviour’ and against emphasis on pupil-led activities. In favour of more interactive and progressive ideology. Addressing ‘core deficits’ rated higher than other factors. ‘Core deficit’ interpreted as the sensory and perceptual differences that people on the autism spectrum experience. 4 Providing structure and a focus on developing ‘social skills’. Non-radical perspective. In favour of celebrating diversity and the development of critical thinking and secure relationships, and against reinforcement theory. Less emphasis on smaller class sizes. Exemplified by a practitioner and an autistic adult male participant. 5 Non-radical and neither in favour of teaching being teacher-led nor pupil-led. Celebrating learners and diversity and highlighting the ‘enabling environments’ category. More emphasis on developmental ‘milestones’ and the reinforcement of learning. Normative and interactive aspects. Exemplified by a practitioner and an autistic adult female participant. 6 Some liberal humanist Celebrating learners and not in Learners taking up roles in More progressive than radical – with 207 concerns. favour of aspects of ABA-based practice. society. ‘autistic people needing to be in ‘decision-making roles’, occupying somewhat of an ‘eclectic approach’. Exemplified by a mother of an autistic child, who is also a practitioner and academic. 7 Promoting ‘social skills’ and ‘independence’, not seeing staff and pupils as having ‘equal status’. Utilising the interests of learners. Building tools for successful social interaction. A functionalist approach to teaching social interaction, akin to TEACCH, SCERTS, RDI and exemplified by three practitioners in the sample. 8 - Accommodating differing learning styles and highlighting ‘enabling environments’ category. Not ‘celebrating learners’. Comments related to not ‘celebrating learners’ related to other learners / peers who disrupted classes. Exemplified by two autistic adult female participants. Table 5.2.1 show that factors 3-8 along with participants not exemplifying any of the factors can be charted as occupying various ‘middle-ground’ positions in-between the positions being stated by factors 1 and 2, with some being influenced by differing aspects of each, often being less radical in orientation than either positions. It is interesting to note that those factors indicating a more progressive approach were often being favoured by autistic people, and those resembling a more functionalist approach often being non-autistic parents and practitioners. 208 Table 5.2.2: The spectrum of educational ideology Participant grouping Factor 1 Factor 2 Factors 3-8 Non-exemplifying participants Totals Autistic people 2 8 4 12 26 Non-autistic parents 5 1 1 8 15 Non-autistic/parent practitioners and academics 2 2 6 9 19 Totals 9 11 11 29 60 Table 5.2.2 shows the spread of views between factors by participant grouping. Factor 1 as has been seen in the previous sections can be characterised by a tendency toward ‘Liberal Humanist’ ideology and a mixture of ‘Behaviourist’ and ‘Functionalist’ ideology regarding practice. Factor 2 can be seen as exemplifying a ‘Radical/Progressive’ ideological agenda and the use of ‘Interactionist’ ideology regarding practice, with a stronger emphasis on the ‘enabling’ of environments. Factors 3-8, as well as participants who did not exemplify any of the factors but who were influenced in differing measure by them, could be seen as differing points on a spectrum between the diverging views expressed in factors 1 and 2 (albeit with some aspects of the Q-set of statements being seen as of high/low importance where they may not have done so by either factors 1 or 2). When seen in this way, an interesting pattern emerges (shown in Figures 5.2.1 and 5.2.2 below). 209 Figure 5.2.1: Number of participants exemplifying factors by participant group X = factor exemplified (column 1 = factor 1, column 2 = factors 3-8, column 3 = factor 2), Y = number of participants. Red = Non-autistic parents of autistic children, Blue = Autistic adults, Green = Non-autistic or parent practitioners and academics. Figure 5.2.2: Numbers of participants exemplifying factors by participant group (including non-exemplifying factors within middle group). X = factor exemplified (1 = factor 1, 2 = factors 3-8 and those that were not exemplifying Q-sorts, 3 = factor 2), Y = number of participants. Red = Non-autistic parents of autistic children, Blue = Autistic adults, Green = Non-autistic or parent practitioners and academics. 01234567891 2 3Series1Series2Series30246810121416181 2 3Series1Series2Series3210 Although a crude reduction of the diversity of views amongst the sample group, Figures 5.2.1 and 5.2.2 indicate that there is a bell-curve normative pattern expressed by participants who were neither on the autistic spectrum nor parents of autistic children, with the majority who did exemplify factors being those other than factors 1 and 2, with each of these factors being exemplified by two non-autistic/parent practitioners or academics. Although a smaller cohort, the parent participant group largely made up those that exemplified factor 1, and only had one participant exemplify factors 3-8 and one exemplifying factor 2. Of the eight who did not exemplify any of the factors, three of these were the non-autistic fathers whose dominant influence on average was still factor 1. Thus, within the sample group, instead of a bell-curve of results indicating a preference for a more eclectic approach like the practitioner group, the parent group favoured a more ‘Liberal Humanist’ and ‘Behavioural-Functionalist’ style of approach, and indeed included a number of participants who stated they were using ABA-based practices, and with mothers more likely than fathers within the small sample to fully exemplify a factor 1 position, but also showing a wider range of views than fathers. The distribution curve of autistic participants however is skewed in the other direction toward the dominant view of factor 2 and a more ‘Radical / Progressive / Interactionist’ approach to educational ideology and practice. The skewing either way was less marked for male participants (both autistic and non-autistic parents), for parents of more verbal children (indicated potentially by the favouring of other factors and statements such as learning the three R’s) this skewing was also less marked, or for autistic people favouring a less ‘radical’ and more ‘pragmatic’ approach with some asking for the provision of ‘structure’. This 211 range of views within the sample could thus be roughly hypothesised in the Figure 5.2.3 as a split between three distribution curves, indicating a three way general split in dominant views, discourse and prioritised practices based largely upon the positionality of participants: Figure 5.2.3: The three-way distribution curve of educational ideology In Figure 5.2.3, hypothetical distributions are given for the stakeholder groups. The number of the x-axis refers to an increasing tendency toward a factor 1 approach and away from a factor 2 approach. Figure 5.2.4 below shows a scatter-plot distribution for all 60 individual Q-sorts for those who participated in the study plotted against their correlation to factors 1 (x-axis) and 2 (y-axis): 05101520251 2 3 4 5 6 7 8 9Autistic adultsNon-autistic parentsNon-autisticpractitioners andacademics212 Figure 5.2.4: Individual Q-sort correlation with factors 1 and 2 X = Factor 1 correlation score, Y = Factor 2 correlation score. Note: Exemplifying Q-sorts for each factor would usually score above 0.6. Figure 5.2.4 indicates clumping of Q-sorts that rise above a score of 0.6 for either factor, and that the more one is influenced by one factor the less one is likely to be influenced by the other. There are some participants scoring somewhat highly in both and some scoring low in both factors though. In relation to those Q-sorts that scored a correlation below 0.6 in either factor’s 1 or 2, they either exemplified other factors (factors 3 to 8) or none at all. One could say that all fall on a spectrum between factors 1 and 2, but also show significant dissimilarities from one another, otherwise there would not have been 8 factors extracted from the data, however small effect some of these factors were having on the overall sample distribution. The amount of difference between each factor can be seen in table 4.3.2 in the previous chapter. In regard to how much overlap there was between the two dominant factors 1 and 2, the correlation was only 0.1417, showing almost an opposite orientation (which would have been highlighted by a -0.4-0.200.20.40.60.81-0.4 -0.2 0 0.2 0.4 0.6 0.8 1Series1213 negative correlation). In Table 5.2.3 and the scatterplot in Figure 5.2.5. each of the factors are plotted against factors 1 and 2 in terms of their correlation to one another. Table 5.2.3: Factor correlations between factors F1 F2 F1 1 0.1417 F2 0.1417 1 F3 0.2825 0.418 F4 0.4362 0.1277 F5 0.2517 0.359 F6 0.4414 0.464 F7 0.4456 0.4146 F8 0.3423 0.2577 Figure 5.2.5: Factor correlation scatterplot graph X = Factor 1 correlation score, Y = Factor 2 correlation score. According to these correlation scores, factors 3 and 5 score above 0.3 and below 0.6 for factor 2, but below 0.3 for factor 1 (indicated on the left of the scatterplot). Factors 4 and 8 have a pattern in reverse, particularly factor 4, scoring above 0.3 00.050.10.150.20.250.30.350.40.450.50 0.1 0.2 0.3 0.4 0.5Series1214 and below 0.6 correlation with factor 1 and below 0.3 for factor 2 (indicated by the lowest two spots on the scatterplot). Factors 6 and 7 scored above 0.3 for and below 0.6 for both factors, indicating an ‘eclectic’ approach, but approaches that differ from one another (see previous chapter) on issues largely unrelated to factors 1 and 2. Thus each of these factors can be seen as positionalities at the intersections between factors 1 and 2, but stressing different specific concerns. Table 5.2.4: Table of contrasting views by correlation to factors 1 and 2 Category Factor 1 score Factor 2 score Autistic adults Non-autistic parents Non-autistic P+A Total Pragmatic <0.3 <0.3 4 1 6 11 Functionalist 0.3-0.6 <0.3 - 3 4 7 Behaviourist >0.6 <0.3 2 6 2 10 Progressive <0.3 0.3-0.6 10 - 4 14 Radical <0.3 >0.6 7 - 2 9 Eclectic 0.3-0.6 0.3-0.6 3 4 1 8 Radical-eclectic 0.3-0.6 >0.6 - 1 - 1 Behavioural-eclectic >0.6 0.3-0.6 - - - 0 Total 26 15 19 60 Table 5.2.4 indicate the spread of individual Q-sorts by correlation to factors 1 and 2 and split by participant grouping. The data from this table has been grouped by the amount of correlation with the two factors into categories shown in the left-hand column. In order to differentiate these groupings, each was given rhetorical categories. It should be remembered that views within these categories are based on their correlations to factors 1 and 2 and indicate a broader breadth of views than those at the extremes of this scale (here labelled ‘Radical’ and ‘Behaviourist’). Those participants that scored near to exemplifying factor 1 215 (between 0.3 and 0.6) and lower than 0.3 for factor 1, were labelled ‘functionalist’, as they were closer to the factor 1 view that utilised behaviourist and functionalist views and not radical ones. Factors 4 and 8 would probably be close to this category theoretically, but in fact none of the 3 autistic people who exemplified these factors personally fitted into this category. Those who had the opposite pattern to this one, i.e. close to exemplifying factor 2 (correlation between 0.3 and 0.6) and below 0.3 for factor 1 were labelled ‘progressive’ and encapsulated views of those exemplifying factors 3 and 5, who interestingly included participants who stated they utilised an Intensive Interaction approach in practice. Such a view would be less radical than those exemplifying factor 2, but largely opposing a factor 1 viewpoint. Those that scored fairly highly in both factors 1 and 2 (between 0.3 and 0.6) were deemed ‘eclectic’ and indicated views close to those exemplifying factors 3 and 7. A number of participants did not exemplify any of the factors and scored lower than 0.3 on both factors 1 and 2, these were deemed as ‘pragmatists’ (although little is known from the data about this group). The final two categories of ‘behavioural-eclectic’ and ‘radical-eclectic’ refer to ‘eclectic’ participants (scoring above 0.3 in both factors 1 and 2), yet scored above a 0.6 correlation score in the factors 1 and 2 respectively. Of the autistic participants, 2 scored above 0.6 (‘Behaviourist’), but only 5 in total scored above 0.3 on correlation to factor 1 (zero ‘Functionalist’ and 3 ‘Eclectic’). 4 autistic participants scored below 0.3 on both factors (‘Pragmatic’), 7 above 0.6 (‘Radical’) on factor 2 and a further 13 above 0.3 (10 ‘Progressive’ and the 3 ‘Eclectic’ participants). This is contrasted with the non-autistic parents who showed an opposite skewing toward factor 1, with 6 scoring over 0.6 and a further 216 8 above 0.3 (4 ‘Eclectic’ and 3 ‘Functionalist’ and one ‘Radical-Eclectic’). The number of non-autistic parents scoring lower than 0.3 on factor 1 equalled 1 (of 15) and this participant also scored lower than 0.3 on factor 2 (in the ‘Pragmatic’ category). There were no straight ‘Radicals’ amongst the parent group, no ‘Progressives’ either, but a sole ‘Radical-Eclectic’ voice (above 0.6 on factor 2 and above 0.3 on factor 1). When looking at the non-autistic practitioner and academic sample however, something approaching a bell-curve distribution between the 2 factors is found, with 2 ‘Radicals’, 4 ‘Progressives’, 6 ‘Pragmatists’ and 1 ‘Eclectic’, 4 ‘Functionalists’ and 2 ‘Behaviourists’. Tables 5.2.5 to 5.2.7 and Figures 5.2.6 to 5.2.8 show these distributions, with the table layouts mimicking the layout of findings as they are found in the scatterplots. 217 Table 5.2.5: Autistic adult Q-sorts by correlation to factors 1 and 2 Radical 7 Radical-eclectic 0 - Progressive 10 Eclectic 3 Behavioural-eclectic 0 Pragmatic 4 Functionalist 0 Behaviourist 2 Figure 5.2.6: Autistic adult Q-sorts by correlation to factors 1 and 2 X = Factor 1 correlation score, Y = Factor 2 correlation score. 00.10.20.30.40.50.60.70.80.91-0.4 -0.2 0 0.2 0.4 0.6 0.8Series1218 Table 5.2.6: Non-autistic parent Q-sorts by correlation to factors 1 and 2 Radical 0 Radical-eclectic 1 - Progressive 0 Eclectic 4 Behavioural-eclectic 0 Pragmatic 1 Functionalist 3 Behaviourist 6 Figure 5.2.7: Non-autistic parent Q-sorts by correlation to factors 1 and 2 X = Factor 1 correlation score, Y = Factor 2 correlation score. -0.3-0.2-0.100.10.20.30.40.50.60.70 0.2 0.4 0.6 0.8 1Series1219 Table 5.2.7: Non-autistic practitioners and academics by correlation to factors 1 and 2 Radical 2 Radical-eclectic 0 - Progressive 4 Eclectic 1 Behavioural-eclectic 0 Pragmatic 6 Functionalist 4 Behaviourist 2 Figure 5.2.8: Non-autistic practitioners and academics by correlation to factors 1 and 2 X = Factor 1 correlation score, Y = Factor 2 correlation score. Table 5.2.8: Spectrum of educational views by participant grouping Participant grouping Radical (including Radical-Eclectic) Progressive Pragmatic-Eclectic Functionalist Behaviourist Total Autistic adults 7 10 7 0 2 26 Non-autistic parents 1 0 5 3 6 15 Non-autistic practitioners and academics 2 4 7 4 2 19 Total 10 14 19 7 10 60 -0.2-0.100.10.20.30.40.50.60.70.8-0.2 0 0.2 0.4 0.6 0.8Series1220 Figure 5.2.9: Spectrum of educational views by participant grouping By using the scatterplot method of charting participants by their correlation to factors 1 and 2, a similar but more nuanced pattern emerges to that of Figures 5.1.1 and 5.1.2 and a clear indication is given that the pattern described in Figure 5.1.3 could be hypothesised to be potentially the case with a wider sample population (although that would require further research to explore) and certainly within the sample population of this study. Table 5.1.8 and Figure 5.1.9 above present the data by participant grouping across the categories correlation categories. Pragmatic and eclectic views were placed together and thus indicate somewhat of a pull toward the middle of this chart, however, the chart gives a simple indication of the skewing of distributions of views of autistic and non-autistic parents from the middle-ground, whilst the practitioners and academics who participated in the study showed an even distribution across the educational ideology spectrum, yet more ‘pragmatic’ (n=6) than ‘eclectic’ (n=1), indicating a 024681012Autistic adultsNon-autistic parentsNon-autisticpractitioners andacademics221 somewhat low correlation with both the concerns of autistic adults and non-autistic parents. 5.3 The three-way dispositional problem Sociologists of various theoretical inclinations have given differing accounts of how the dynamic between social structures and hegemonic discourse and the agency of social actors have shaped the conceptualisations and linguistic / social constructions of reality that people negotiate on an everyday basis. Social theorists such as Mills (1956), and Bourdieu (1986), argued that power relations were created and legitimised within the interplay between structure and agency. For Bourdieu (1986), the main way in which this is structured he termed ‘habitus’, referring to the way social values and norms are internalised by social actors as guides to their actions. Habitus is the product of social processes and yet although being changeable over time, was theorised as being relatively stable across contexts. Another way to describe habitus is the term disposition (and alternatively (dis)position and dis/position depending on one’s theoretical leanings – see Milton, 2013; 2014d – see Appendix B1: Overview of related articles). In my early writings (referred to in Milton, 2014d – see Appendix B1: Overview of related articles) I wrote about the nature of ‘dispositional diversity’ and a social prejudice evident against those deemed of psychological abnormality and a rejection of the agenda of normalisation (e.g. Milton and Lyte, 2012 – see Appendix B1: Overview of related articles). Therefore as an example, my own disposition as a critical social theorist could be said to have remained stable over a number of decades (and both pre and post diagnosis as being on the autism spectrum). Differing 222 dispositions within society are then expressed discursively through what Bourdieu (1986) described as ‘Doxa’ or taken-for-granted beliefs and conceptualisations about social reality, or what phenomenologists might describe as the ‘natural attitude’, a disjuncture between experiences of leading to mutual incomprehension and what I have previously described as the ‘double empathy problem’ (Milton 2012a; 2014a – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). When looking at the distribution of data between participant groupings evident in the previous section of this thesis, one can see a three-way split between an autistic adult view highlighting a critical pedagogical ideology (or ‘doxa’), non-autistic parents prioritising a more liberal humanist ideology and practice based on a Positive Behavioural Support (PBS) style of approach, and practitioners and academics often taking up a pragmatic or potentially eclectic middle ground position between the two. Thus in nuanced ways, the ‘double empathy problem’ in the case of educational ideology becomes a ‘three-way dispositional problem’ between autistic adults often favouring factor 2, non-autistic parents of autistic children often favouring factor 1 and non-autistic practitioners/academics favouring neither factor 1 or 2, but other positions in-between (at least within this sample, if not a wider population). For non-autistic practitioners and academics there did not appear to be a consensus behind a coherent / dominant set of beliefs and practices that they adhered to as a group, but an array of positions taken up between those espousing a factor 1 or 2 viewpoint. It should be remembered too, that these were tendencies within the data and there was much diversity of views 223 within each participant / stakeholder grouping, and that the findings from this sample may not be at all generalisable to a wider population of people. Yet, what is behind this three-way split in disposition and related doxa or discourse? Why does splitting the data into these three groupings produce such differing results? It would seem that differing dispositions lead to very differing experiences of what it is to be autistic and what educational priorities should follow from this (see section 4.16). When preparing the Q-set of statements, some of the priorities were chosen on the basis of Scrimshaw’s (1983) taxonomy of educational ideologies. Although these ideological conceptualisations did seem to be at play in the data, with factor 2 promoting a progressive / radical ideology and factor 1 promoting a more liberal humanist approach, and none of the factors promoting a classical humanist approach, such ideological stances were not clear cut and not as influential to eventual Q-sorts as many practical considerations. When looking at considerations related to the theory and practice of particular models, factor 1 favoured Behaviourist and Functionalist concerns compared to factor 2, and factor 2 favoured more Interactionist concerns, with both treating statements related to RDI more neutrally (yet practitioners exemplifying factor 7 rated these statements more favourably). Such a difference of view presents as problematic a number of common areas of concern within the context of education. For example, is the avoidance of demands a rational rebellion against a prejudicial and unfriendly social environment, or a pathological deficit in need of remedial strategies? Does promoting independence mean promoting self-advocacy and autonomy or doing things for oneself? Should more educational activities be led by pupil interests or less? Are intense autistic interests to be viewed as an autistic learning style to be nurtured and utilised as intrinsic motivation within classroom activities, or seen as 224 something to be used as reinforcement for appropriate behaviour or as potentially dangerous ‘obsessions’? According to one participant exemplifying a factor 1 viewpoint, pupils deciding how to spend their time would lead to: “...pupils engaging in their obsessions and not learning anything new.” (Participant P54). A fundamental tension between views was evident in the diversity of responses regarding the notion of ‘evidence-based practice’. Interestingly, given the positionality context of the sample, it was the non-autistic parents in favour of factor 2 which favoured this narrative significantly more than the other factors (and hence practitioners, academics and autistic adults). Perhaps there was a stronger narrative need for parents to be seen to base their decisions on received wisdom and a perceived state of evidence than it was for practitioners and academics working in the field of autism? It may be the case that the lower priority given to this narrative by practitioners, academics and autistic adults would be how the term has been debased by its over-usage, or that there are too many examples of when it is claimed without much to support it (in their view), or its connotations with normative and medical model perspectives? What is clear when triangulating the statistical data from the Q-sort activity with the qualitative responses given by participants, particularly the follow-on interview questions of six of these participants (see section 4.16 in Chapter 4: Findings), 225 was that differences in educational priorities and how they can be implemented can be traced back to how one sees the nature of autism itself, particularly between those espousing a view akin to a more medical or behavioural view of autism and those taking up a more social model position. Extremes of either model were rare in the data however, with nuanced differences appearing between people and a common recognition of the diversity of needs a person on the autism spectrum might have (albeit sometimes seen in a linear fashion from mild to severe needs). Normalisation to the point of being indistinguishable from one’s peers was rejected across the board by virtually all participants in the study. Thus an initial claim that can be made from this data sample is that there was a consensus over the rejection of the educational priorities as set out by Lovaas (1987). Many of the accounts (see Section 4.16 in Chapter 4: Findings) linked whether someone should take a more medical or social model approach to an autistic person and their resultant educational priorities to where someone was deemed to be ‘on the spectrum’. Those seen to be more severely affected were seen to be more ‘impaired’ and treated more frequently in a normative fashion, whilst those deemed less so, seen as more in need of understanding and respect on their own terms. One could interpret the data as showing a split in views between autistic adults able to articulate their concerns and take part in such a study, and parents of less verbal ‘low-functioning’ children. However, this would be to miss the point that many of the autistic adults who participated were also parents of autistic children with more ‘complex’ or ‘severe’ needs (if viewed from a more functionalist 226 perspective), yet took up a radical viewpoint akin to factor 2 (as in my own positionality seen in the Q-sort results for participant P1 – see Appendix A19: Q-sort for participant P1). Whilst some exemplifying a factor 1 viewpoint espoused a need for discipline and hierarchy in the classroom and those exemplifying a factor 2 viewpoint a more pupil-led approach, there was a general consensus that educational activities should be mutual and neither too learner or teacher-led. These findings support those found with the sample of parents that were surveyed as part of the pilot studies that fed into this thesis (see Milton, 2012c – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). 5.4 A common ground? Given the data provided from this sample of merely 60 participants, it is clear that a genuine consensus between differing stakeholders and dispositional outlooks regarding educational priorities for autistic children is highly unlikely. Although some of the tensions could be accounted for as being an artefact of the Q-sort method utilised, the fact that only one statement out of forty-two gained general consensus to a statistically significant level (‘good communications between staff, pupils and parents’) and this was a consensus of mild agreement; and that the diversity of views could be plotted on a graph regarding the level of correlation a participant had in relation to factors 1 and 2, being pulled in opposite directions by 227 two dominant discourses; perhaps there are areas of agreement that can be explored? Along with good communications between staff, autistic pupils and parents, there was a general favouring amongst the sixty participants toward an approach that considered the environment around the autistic learner and how enabling/disabling this can be. These areas were particularly noted by autistic participants and a number of practitioners in the sample. Such areas were also strongly highlighted by the autistic children and young people who participated in the consultation exercises for the Autism Education Trust’s School Standards (Milton and Giannadou, 2012 - see Appendix B1: Overview of related articles). A second area for discussion from this study would be the effects the environment has on the ability an autistic child has to learn new information, whatever educational model or ideology one promotes. There was also a general favouring for the category of ‘building relationships’ in general. A starting point that stakeholder’s of all inclinations may agree on, would be the need to build better understanding and communications between all involved in the field of autism. It would appear that those at opposite ends of the ideological / dispositional spectrum are literally ‘talking a different language’. An autistic person may be faced with practitioners and family members with a very differing view to their own. A practitioner may be faced with accommodating two parents with ideologically opposing viewpoints regarding their child’s education. A 228 parent may feel that the approach they use at home is helping their child, yet what they see at school may not meet the same expectations. Therefore, a third area for discussion to come from this thesis, is the need to provide practical means by which differing stakeholders can explore their educational priorities in a respectful way. The above analysis and highlighted discussion points are concerns that can be mapped against the educational priority areas that were devised by the Autism Education Trust (Guldberg et al., 2012) in building their training and support materials for educational practitioners, these being: Understanding the Individual Child, Enabling Environments, and Building Relationships. These materials also provided guidance on a fourth area though, that of ‘Learning and the Curriculum’. This fourth area within the AET materials across differing age ranges drew criticism from those supporting a model based on ABA (ABA4ALL, 2014). Given the findings from this thesis of a wide diversity of views regarding aspects of all practice related educational theory (including Interactionist theory although this was generally favoured overall), it is likely that any such material would have acquired criticism from at least one section of the wider autism community. Therefore, a fourth area for discussion to be explored is how to present the range of views that exist regarding educational priorities and practice in a respectful way, and be mindful of the differing dispositions which can lead to these differing views. 229 These discussion points will be explored further in the following chapters. To summarise: 1. The rejection of the traditional Lovaas (1987) inspired ideal of trying to make autistic children ‘indistinguishable from their peers’. 2. An exploration of the effects that the environment has on the ability an autistic child has to learn new information. 3. The need to provide practical means by which differing stakeholders can explore their educational priorities in a respectful way. 4. How to present the range of views that exist regarding educational priorities and practices in a respectful way, and be mindful of the differing dispositions which can lead to these differing views? 230 Chapter 6: Discussion “Because a free man ought not to learn anything under duress. Compulsory physical exercise does no harm to the body, but compulsory learning never sticks to the mind. 'True'. ‘Then don't use compulsion,' I said to him, 'but let your children's lessons take the form of play. You will learn more about their natural abilities that way.” (Plato, cited from spaceandmotion.com, 2015). 6.1 Introduction This thesis employed a Q-sort method in order to explore the educational ideologies held by sixty participants in order to answer the following research questions: x What discourses are being used by relevant stakeholders in the narrative construction of views about educational priorities for autistic children of secondary school age? x What commonalities and tensions exist between (and within) the subjective constructions of stakeholders regarding the education of autistic children of secondary school age? Through a Q-sort factor analysis, eight factors were extracted, with two in particular having a dominant influence on the data-set, constructing narratives in near opposition to one another and being occupied in the main by particular stakeholder groups. It was found that autistic adults had a slanting toward radical 231 / critical pedagogy (akin to factor 2 in the data-set) underlined by a social model of disability, with also a large number taking up a somewhat progressive, interactionist, or eclectic position, but with only two of twenty-six participants exemplifying a view more akin to a Behaviourist or Functionalist approach (akin to factor 1 in the data-set). Of fifteen non-autistic parents only one demonstrated a radical ideology, with six holding a view akin to Positive Behavioural Support (PBS) and being influenced by a more Liberal Humanist ideology. Participants who were neither autistic, nor parents of autistic children of secondary-school age, tended to take up positions in-between these two somewhat opposing perspectives, at times expressing views of less concern to either autistic adults or parents to autistic children (as shown by factors 3 and 7 which were only held by a small number of this grouping). This stakeholder grouping did not hold a well defined, coherent and well-defined view, but could be described as a constellation of pragmatic and eclectic approaches positioned in-between the dominant factors. Considering the total of eight factors that were extracted from the data-set, as well as the opposing dominant views, plus the diversity of views held as a whole, means that the level of tension and disagreement between and even within stakeholder groupings was high, at least within the sample of this study. Statistically significant distinguishing statements were found for all of the factors in order for them to be defined, yet only one statement reached a statistical level of consensus between factors, that of: ‘good communication between staff, parents and pupils’. A goal that is made all the more difficult to achieve given the diversity of educational ideologies and priorities revealed in this study. Not only can it be 232 difficult for stakeholders to articulate their positions, but they can often be perceived as attacking the viewpoint of other stakeholders. In Chapter 5: Meta-analysis, it was found that this ‘three-way dispositional problem’ led on to a number of concerns to be addressed in this thesis: 1. The rejection of the traditional Lovaas (1987) inspired ideal of trying to make autistic children ‘indistinguishable from their peers’. 2. An exploration of the effects that the environment has on the ability an autistic child has to learn new information. 3. The need to provide practical means by which differing stakeholders can explore their educational priorities in a respectful way. 4. How to present the range of views that exist regarding educational priorities and practices in a respectful way, and be mindful of the differing dispositions which can lead to these differing views? This chapter is split into ten sections exploring differing issues related to the above questions or the study as a whole. In Section 6.2 a reflection regarding my own positionality and bias is given, before moving on in section 6.3 to the first point for discussion as highlighted in Chapter 5: Meta-analysis, regarding the rejection of the Lovaas (1987) inspired goal of ‘helping children on the autism spectrum to become indistinguishable from their peers’ and widening this to a general discussion concerning the controversial ‘ABA debate’. In section 6.4, the second point from the meta-analysis findings is explored by looking at environmental effects on the ability of an autistic child to learn, whatever the goals and priorities 233 of the learning process may be. Section 6.5 begins to explore the fourth point as framed in the meta-analysis regarding how to present a range of views regarding educational priorities and practices in a respectful way, whilst being mindful of the differing dispositions that can lead to these views. Section 6.6 looks at the potential effects on practice of listening to and implementing the priorities of autistic people as outlined within this study, whilst section 6.7 explores practitioner views as indicated by those sampled in this study in contrast to the practitioner-focused guidance materials that were reviewed in Chapter 2: Literature review of this thesis. Section 6.8 highlights the need for reflection regarding parental engagement, before section 6.9 looks into the third discussion point as outlined in the meta-analysis of creating a practical means by which various stakeholders can explore their own views in a mutually respectful way together. The chapter finishes with a discussion regarding the use of Q-sort methodology in this project and the relative strengths and weaknesses of taking this approach with regard to answering the research questions. 6.2: A reflection regarding positionality and bias Although an account of my own positionality was given in Chapter 3: Methodology, I felt it necessary to revisit the issue in terms of the interpretation and discussion of the data produced from this study. As the findings of this thesis indicate, when interpreting information, it is not possible to remove oneself from one’s own positionality and take up a ‘view from nowhere’ (Nagel, 1989). As pointed out in Chapter 2: Literature review, in reference to the work of Scott and Usher (1996), research can always be seen as being situated socially and also political in nature. 234 In this study for instance, all participants occupied differing positions in respect to educational priorities for secondary school-aged children on the autism spectrum, however similar and different they were from one another. Those who held a centre ground position were not necessarily any more objective than anyone else involved in the field, but just hold another position, and in this case, not a coherent or dominant view having been expressed (in comparison to factors 1 and 2). Occupying a factor 2 position or radical pedagogy stands me in contrast, in particular to those occupying a factor 1 position, and thus my interpretations of the data will inevitably be informed by such a perspective. Having said this, the Q-sort raw data as well as factor rotation and extraction were not dependent on subjective interpretation and speak for themselves and in that sense are objective, albeit influenced by the choice of statements for the Q-set, the sample found for the study, and potential participant biases and researcher effects that could account for some of the differentiation of findings. My interpretations of the data however, would no doubt differ from those taking up a more ‘eclectic’ position, and greater still from those taking up a more behaviourist-functionalist ideology and exemplifying a factor 1 position. Yet such differences in disposition and discourse are the very crux of the ‘double empathy problem’, as I and others have previously theorised (see Milton, 2012a; 2013; 2014a; 2014d; Chown, 2014 – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). Therefore, if someone exemplifying a factor other than factor 2 were to have collected this data, their interpretations of it would no doubt look potentially different to my own, yet the influence of any positionality on interpretation is a finding being clearly shown in this thesis. 235 The philosopher Ian Hacking (2009), as referenced in Chapter 2: Literature review, suggested that autistic people were building their own culture and language in which autism is described, yet this study has shown that in many ways, so are practitioners and parents of autistic children. Yet, these cultures and languages differ markedly, hence the ‘three-way dispositional problem’, or what the autistic scholar and activist Larry Arnold (2010) called the ‘silo mentality’ in regard to the autism community. Within these various ‘fields’ (Bourdieu, 1986) or ‘silos’ (Arnold, 2010), differing dispositions and discourses exist, sometimes with little communication with one another, other than to critique each other, or suggest that those who critique them are misunderstanding their points (e.g. Hastings, 2013). I have previously theorised that due to dispositional diversity there exists a ‘double empathy problem’ between autistic and non-autistic perceptions of the lived social ‘life-world’ (Milton, 2012a; 2012b; 2013; 2014a; 2014d – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles), and the evidence from this thesis would suggest that such a difference in disposition and discourse does indeed exist. It has become apparent that there is a larger gap experienced with those taking up a position exemplifying a factor 1 outlook often inhabited by non-autistic parents, reflecting the divide in objectives of advocacy between parent and self-advocacy groups that I have also previously commented about (Milton, 2012d). In addition, with the divide in views between autistic and non-autistic parents, it is clear that within this sample, if not in practitioner-oriented practice guidance materials (see Chapter 2: Literature review), there was also a divide between non-autistic parents and non-autistic practitioners and academics (as well as the latter with autistic viewpoints). In 236 order to understand better the orientations of differing dispositions to one’s own, one needs to build communication in a respectful manner. Although full ‘verstehen’ (Weber, 1958), or understanding of another, is for me philosophically impossible, as Collins and Evans (2007) argued, ‘interactional expertise’ with cultural groups and communities is possible. Building such expertise amongst all those involved in the field of autism could be said to be a need for all to find a way of establishing (Milton, 2014a – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). Given the findings regarding the building of relationships within this study and elsewhere (Milton and Giannadou, 2012 – see Appendix B1: Overview of related articles), perhaps this is something stakeholders can gain some consensus over. Since beginning my PhD in the field of autism, I have spent a number of years campaigning and working within the field. Within this time, I have both been involved in the development of educational materials (Guldberg et al., 2012; Wittemeyer et al., 2012), had work published that in differing ways critiqued dominant models of educational theory and practice in regard to autistic people and in particular ABA-based theory and practice (Milton and Lyte, 2012; Milton, 2014b – see Appendix B1: Overview of related articles), as well as appearing on a national television programme about the topic (Challenging Behaviour, 2013). Of all the work I have been involved with in the field of autism, the TV programme and related content has been the most contentious, leading at times to online arguments (Dillenberger, 2014), as well as personal and offensive remarks about me and my work (ABA4all, 2014). Such comments and criticisms included an argument I (along with another author) put forward regarding the legacy of Lovaas 237 (1987) in the field of autism feeding into a ‘normalisation agenda’ and how this caused the ‘psycho-emotional disablement’ of autistic people (Milton and Lyte, 2012 – see Appendix B1: Overview of related articles), being disregarded as a ‘straw man’ argument within an academic journal (Keenan et al. 2014). Therefore, it can be said that the topic of my thesis has come to affect me on a personal level, and indeed has become political. From such a journey into the field of autism, it would be impossible to put these experiences to one side and be able to interpret and discuss the findings of this study objectively. What I can do however, is to be transparent about my own positionality, which according to my own research would class my view as exemplifying a ‘radical’ factor 2 point of view. However, this would seem to be in keeping with the views of others with a similar (autistic) disposition to my own. As my interpretation inevitably comes from such a position, my discussion regarding the factor 1 viewpoint and related ABA-based theory and practices will inevitably display an element of bias, and assuredly would not fully ring true for some of the participants from this study. I hope however that the views of those exemplifying factor 1 and other views in this thesis have been given room to speak for themselves in terms of the quotes I have used to explain their views, if not in my interpretation of the wider connotations of these views and subsequent recommendations. This caveat is particularly pertinent in respect of the first recommendation put forward in the meta-analysis section of this thesis, that regarding a rejection of the Lovaas (1987) inspired educational goal of ‘helping autistic children become indistinguishable from their peers’. Although this statement was rejected by those exemplifying a factor 1 viewpoint in this study, many normative / functionalist notions were still 238 followed, and nine participants stated that they currently utilised ABA-based practices. Also, others outside of this study may still hold a more Lovaas-esque set of ideals, especially in other countries (e.g. Challenging Behaviour, 2013; Autism Speaks, 2015). This can be seen through a number of research studies that use normative based tools aligned with a behaviourist viewpoint, such as the ‘Aberrant Behaviour Scale’ (e.g. Kaat, Lecavalier, and Aman, 2014). 6.3 Becoming indistinguishable from their peers and the ABA debate Of all the 42 statements selected for the Q-set for this study, the statement that caused the most disagreement among all stakeholder groups was the educational goal aspired to by Lovaas (1987), a pioneer in the use of ABA-based theory and practice with autistic children, that being of ‘helping children on the autism spectrum become indistinguishable from their peers’. This aversion to an extreme normalising statement was also found in the pilot survey study that was conducted as part of this thesis with parents of autistic children (Milton, 2012c – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). Although I would recommend the abandoning of such normative goals, educational priorities of a normative behavioural-functionalist perspective were clearly given by those exemplifying a factor 1 perspective. Coupled with the fact that some within the wider autism community do advocate such extreme goals (e.g. Challenging Behaviour, 2013), this statement needs to be addressed within a wider debate regarding ABA (in all its diverse forms). 239 Academic proponents of ABA-based theory and practice often state that practitioners taking an ‘eclectic’ and personalised approach to practice are not following the evidence-base (Stahmer, Collings, and Palinkas, 2005; Hess, Morrier, Heflin, and Ivey, 2007), and yet at times exaggerate the state of the evidence, for example: Thompson (2013) states that autism is ‘eminently treatable’. Thompson (2013) also suggests that without such intervention, autistic people will be led into a life of ‘languishing in an institution’. Similar sentiments were held by those exemplifying a factor 1 viewpoint within this study. Recently, an article was published by pro-ABA theorists (Keenan et al. 2014) that suggested that there was a gulf in practice between North America and Europe in regard to the adoption of ABA-based theories and practices in the ‘treatment’ of autistic people. For Keenan et al. (2014) and other pro-ABA supporters (e.g. Hastings, 2013; ABA4All, 2014; Dillenberger, 2014; Dillenberger et al., 2015; Keenan, 2015), ABA is a science that has helped to spawn a number of ‘evidence-based’ strategies in autism intervention, and thus depicted as value-free, objective, and free of political motivation. Not only this, but they are presented as being the only practices to have been shown to have any efficacy: “Interventions that are based on ABA are significantly related to best outcomes”. (Keenan et al. 2014: 167). Keenan et al. (2014) seem to take for granted how good learning outcomes for autistic people should be viewed. Yet when stating what these outcomes might be, one will find comments such as: 240 “...to address quality of life issues by improving skills that can remove barriers to learning and facilitate independence and best practice utilises methods based on ABA...” (Keenan et al. 2014: 167). This narrative presents autism as a barrier to learning, and ABA as a way of facilitating independence and improving skills, and that this will all lead to a better quality of life. Those exemplifying a factor 2 viewpoint within this study, like myself, would no doubt disagree with such a statement. This statement would probably be viewed in terms of normative skill training, ableism, and a dogmatic adherence to a deficit and behaviourist model of intervention. This is made clearer by Keenan et al. (2014) in their citing of Maurice (1993) who within that text likened ABA ‘treatment’ for autism as similar to chemotherapy for cancer. Whatever these outcomes are however, given the diversity of views advocated for in this thesis sample of just 60 participants, it can be demonstrated that such a consensus regarding behaviourist intervention does not exist within the field in terms of educational priorities and what these should be, or how one goes about achieving them. Interestingly, when criticising the work of Pat Howlin, Keenan et al. (2014) make the following remark, which is followed by others in response to Simon Baron-Cohen and Rita Jordan, in an attempt to position those with other viewpoints as ‘ideological’ and their own perspective as objective and empirical: “...it is not surprising to find that ideological assumptions can interfere with an objective appraisal of empirical data.” (Keenan et al. 2014: 168). Keenan et al. (2014) suggest that such other writers (including myself) are misrepresenting ABA and stating absurdities, one of which being that the ideology 241 of many proposing one uses ABA follow a ‘normalisation agenda’ (Milton and Lyte, 2012 – see Appendix see Appendix B1: Overview of related articles); a piece co-written by another neurodivergent activist, yet the fact that these complaints came from such a positionality was not referred to by Keenan et al. (2014). Keenan et al. (2014), citing Maurice (1993), state that claims of abuse by those practising ABA come from ‘pseudo-scientific’ texts, and fail to mention that most of these complaints have originated from the subjective accounts of autistic people (and some parents), often with direct experience of such practices being implemented (e.g. Zurcher, 2012). “The caricatures and misrepresentations that persist and impede the uptake of an effective science are puzzling.” (Keenan et al. 2014: 171). For many autistic activists, as shown by the radical view of those exemplifying a factor 2 viewpoint, normalisation is not a caricature, but a felt experience of living in what is perceived to be an inherently ableist (discrimination in favour of able-bodied people) society. Who gets to define what is ‘appropriate’, ‘challenging’, ‘disordered’, and ‘socially important’, is always imbued with unequal power relations (Mason, 2005). A denial of the directly felt harm of those that have had such methods implemented on them (including from fully trained BCBAs) is often met with increased anger and frustration from members of the autistic community, as well as some parents (for recent examples see: realsocialskills, 2015, Omum2, 2015, Dalmayne, 2015), yet despite this, activists have attempted to explain what their contentions are, even making distinctions between differing experiences of ABA (Unstrangemind, 2015). The impasse between these perspectives is not just 242 over the ideological purpose that a method is set to, but also the processes of ABA-based practices. “Behaviour analysis simply makes explicit the principles of behaviour that operate implicitly in everyday life.” (Keenan et al. 2014: 171). The principle that tacit or implicit knowledge can always be made explicit and learnt has been critiqued by many theorists (such as Collins and Evans, 2007), and by this researcher in regard to autistic learning styles (Milton, 2014a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). According to Keenan et al. (2014) and other behaviourist academics (e.g. Hastings, 2013), a key problem is misunderstandings of the language of ABA. “One of the difficulties with understanding the ‘real’ ABA is the language of the science itself.” (Keenan et al. 2014: 171). Utilising the schema devised by Collins and Evans (2007) in regard to the acquisition of knowledge and expertise, this would be suggesting that people (and practitioners) that are not trained thoroughly in ABA, lack the ‘interactional expertise’ to understand and utilise the language and practice of ABA. In many respects, this is the same argument as put forward by autistic writers (Chown, 2014; Milton, 2012a; 2014a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles), but in reverse. Given 243 the ‘three-way dispositional problem’ that was suggested by the findings of this thesis, perhaps they have a point in this regard, however, the lack of interactional expertise shown with those critiquing ABA-based theory and practice seems to be non-existent and is simply dismissed as a ‘straw man’ argument. If progress is to be made in terms of people who occupy differing dispositions and espouse differing discourses understanding one another’s point of view, such dismissals of autistic accounts of harm need to be addressed. As stated in Chapter 2: Literature review how a person perceives autism leads on to perceptions regarding what constitutes best practice. Such views are heavily influenced by disposition and the relationship someone has to autism as a subjective phenomenon, both in terms of social positionality and embodiment. Yet, how does one build mutual understanding across such a chasm of ideological repertoires? At first sight, a factor 1 viewpoint would indicate some opposition toward radical/critical pedagogy, whilst being in favour of a normative functionalist or behavioural approach that addresses perceived challenges as located primarily in the autistic learner. Yet, given the low score given to the Lovaas (1987) inspired statement, along with its overall pattern of responses, it could be said that factor 1 is more representative of a contemporary behaviourist educational ideology such as Positive Behaviour Support (PBS) (e.g. Hastings, 2013) than more radical behaviourist approaches. Statistically however, within this study, such a perspective was contrasted in an opposing position to the radical views of those exemplifying a factor 2 viewpoint. This may be representative of a differing understanding of ABA based theory and how it should be implemented in practice 244 and across contexts, at least within this sample group, than a Lovaas-esque model of remediation. If this were to be representative of wider concerns of UK-based parents within the autism community, than perhaps there is somewhat of a gulf between the US and UK in terms of how ABA should be applied, let alone with those employing more eclectic, progressive or radical views. Although the findings from this thesis indicate that a style of ABA akin to Positive Behaviour Support (PBS) was a dominant view through those exemplifying a factor 1 viewpoint, this was contrasted with the more radical views of those exemplifying a factor 2 viewpoint. These differences of view can also be seen to have gained cultural expression through differing voices (Neary, 2013; Challenging Behaviour, 2013). Tensions between these views are likely to persist, but a greater understanding of the reasoning behind why differing stakeholders are attracted to differing ideologies and practices can help all to build a common language in which to debate the issues. As the findings from this thesis show, those who state that they practice a particular model may differ quite markedly from one another in viewpoint and priorities. For instance, those stating they used Intensive Interaction exemplified factor 2, 3 and 5 or did not exemplify a factor. Those following an ABA-based approach did largely exemplify a factor 1 approach, but as section 4.16 of Chapter 4: Findings shows through the analysis of the follow-up interview questions, participants P20 and P31 had quite differing narratives as to what drew them toward ABA and what they understood by it in implementation. It is clear from the findings of this thesis however, that consensus over educational ideology is not likely. As such, perhaps the ‘gulf’ between US and UK practice has much less to do with the suggested evidence-base and a great deal more to do with differing cultures. Equally however, there is unlikely to be a consensus 245 between stakeholders to follow any one model or approach, as no model could satisfy all perceived needs, due to the opposing and contradictory views that exist. It is also important to consider the socioeconomic factors that may drive particular points of view. For example, the dominance of Neoliberal ideology in policy making, champions positivist approaches to education and disability services. The hegemonic educational rhetoric regarding all children can be said to reflect a growing instrumentality within education practice, valorising approaches and methods that claim to lead to outcomes sanctioned by the state. Across the whole sample group there was little consensus over how to prioritise the Q-set of statements, yet despite the vast tensions, there was some consensus between the dominant factors (1 and 2), if not all the factors extrapolated from the data. These areas of consensus between otherwise opposing views included: providing a tailored curriculum, empowering learners how to think for themselves, utilising interests, building trusting relationships and good communications, and employing calm and patient staff members. Both factors negatively rated statements regarding the provision of structure, order and discipline (as well as the Lovaas inspired goal of becoming indistinguishable from one’s peers). Of course, of more concern perhaps, is that the two statements most highly rated by those exemplifying a factor 2 outlook, were also the most highly contentious statements within the Q-set, i.e. ‘celebrating learners and not trying to ‘normalise’ them’, and ‘radical change in society’. So, despite areas of potential agreement, such tensions cannot be underestimated. 246 6.4 Environmental effects on the ability an autistic child has to learn A common aspect of reports from autistic people, both in respect to the adults sampled in this study and elsewhere, such as in the consultation exercises that were carried out with children and young people on the autism spectrum in the creation of the school-based materials for the Autism Education Trust (Milton and Giannadou, 2012 – see Appendix see Appendix B1: Overview of related articles) was the emphasis given to ‘enabling environments’ in the learning process. Although in this study, a range of responses were given concerning the idea of having smaller class sizes, those who scored this statement negatively often were doing so due to the current improbability of such an educational priority being implemented, and so this statement was rated lower by some for this reason. The statement regarding ‘supporting transitions’ was fairly well rated on average (z = 0.62), yet could have been open to various interpretations. More general support was given by all stakeholder groups regarding the provision of quiet spaces to retreat to, and the reduction of bullying. Both these statements were derived from reviewing the earlier findings of the consultation work for the Autism Education Trust, and were again found to be considered significant issues, particularly for those participants who were on the autism spectrum. It would thus seem an area of potential consensus between stakeholder views, but if this was highlighted then the centrality of the autistic perspective, would be accorded its appropriate priority. In a practical sense however, such aims are not so easy to implement. Unfortunately, all too often instead of safe quiet spaces to retreat to, one finds media reports of ‘time out rooms’ being utilised to exclude, segregate and even imprison young people (Autism Eye, 2015). The reduction in such practices would 247 no doubt be consensually agreed upon by all who took part in this study and no doubt many involved in the field of autism. Examples and case studies of good practice in the use of space need to be shared as well as reflection upon ideas implemented whilst being mindful of contextual differences. A reduction in the bullying experienced by young people on the autism spectrum was a highly ranked statement within this participation sample as an educational priority. It was also the most commonly cited issue by children and young people on the spectrum themselves when consulted for the Autism Education Trust materials (Milton and Giannadou, 2012 – see Appendix see Appendix B1: Overview of related articles). In recent years this issue has also led major autism charities to publish materials regarding the problem of autistic children and young people being bullied (Ambitious about Autism, 2011). Much like any kind of abusive interaction(s) however, one needs to be careful not to victim blame, in the sense of suggesting autistic people are bullied because of their ‘differences’ or ‘social naivety’, as this can so readily be likened to ideas that short dresses inspire sexual assault. If one were to aspire to making a difference in terms of changing environmental contexts to be more autism-friendly, than in the view of many autistic people this would go beyond the notion of making reasonable adjustments to accommodate someone’s needs to access an environment. A reasonable adjustment is considered to be an alteration made to enable a disabled person to carry out normative responsibilities, such as the duties of a job role. In practice the idea of 248 alterations to cultural norms often make such adjustments exceptions rather than the rule. In many respects reasonable adjustment could be seen as a base legal requirement, where good autism practice would, in the views expressed across the stakeholder spectrum in this study, require more concerted efforts. In contrast to the normative notion of reasonable adjustment, one can look at the concept of ‘Universal Design’ (UD) which suggests that environments need to be designed to be accessed, understood and usable to the greatest extent possible by people of all ages, sizes and abilities (Milton, 2015). Rather than making ‘special requirements’ to meet the perceived needs of a specified grouping of people, UD is based on the premise that environments that are accessible, usable, convenient and pleasurable lead to benefits for all. Therefore, one could claim that the theory of Universal Design could potentially help in making the case for why creating autistic-friendly environments could simply be considered as ‘good design’ practice. There exists a number of environmental auditing tools and guidance, such as from the Autism Education Trust (Jones et al., 2012; Wittemeyer et al., 2012), as well as accreditation schemes (NAS, 2015c), yet a recommendation here would be to employ people on the autism spectrum as environmental and organisational ‘troubleshooters’ with regard to autism-friendliness. Of course such a scheme would require the will and financial support of organisations wishing to improve the accessibility of their practices. 249 6.5 Presenting the views of differing dispositions in a respectful way As this thesis clearly shows within this sample of sixty participants, there is not a high degree of consensus when it comes to educational ideology and consequential aims and priorities, and so a number of controversial issues persist between differing discourses favoured by people of differing dispositions. This helps explain why it is that when organisations or products that attempt to explain the range of interventions in the field of autism, such products are often met with strong criticisms from at least some stakeholder groups (if not several). An example would be the very different yet critical responses that were expressed following the airing of the TV program: ‘Autism: Challenging Behaviour’ (2013) which looked into the pros and cons of ABA-based practices with young autistic children (e.g. Murray, 2014; Mumsnet, 2015; Lowery, 2015). Within the UK, perhaps the organisation seen as being the most authoritative academic voice regarding the evidence-base for autism interventions would be that of Research Autism, yet like any organisation taking on such a task, it has attracted criticism (e.g. ABA4all, 2014). Recently, Research Autism published a book (Fleming, Hurley and The Goth, 2015) that like their website (Research Autism, 2015) looks primarily at the scientific evidence-base behind claims made by a huge variety of autism interventions. They also offer ethical guidance and information regarding differing types of interventions and the motivations behind them, yet the ideological controversies within the field are not made fully transparent. Whilst there is much to recommend the educational materials developed by the Autism Education Trust (Guldberg et al., 2012; Jones et al., 250 2012; Wittemeyer et al., 2012), the materials shy away from explicit guidance and critique of main educational models and interventions being marketed to parents of autistic children and practitioners working with autistic children. I would make the argument that the controversies within the field need to be made as open and transparent as possible, including reasoning as to why some claim benefits from interventions and why some claim the opposite, as well as the evidence utilised to support (and refute) such claims. Although the findings from this thesis indicated a general pattern of the existence of a ‘three-way dispositional problem’ with regard to educational ideology, there was also a great diversity of nuanced differences between individual viewpoints, experiences, aims, priorities and strategies. This diversity can however be mapped against a backdrop of a spectrum of ideology ranging from a critical radical or progressive agenda to a highly normative behaviourist one. The latter of these ideologies, not being expressed in such extremes as have been made public elsewhere by participants within the sample for this particular study, given the rejection of the goal of being indistinguishable from one’s peers. The discourse within the field of autism is being pulled into two different or even oppositional directions mainly related to what could be described as the medical and social models of disability. Similar controversies can be found across the field of disability studies and indeed with regard to the emergence of ‘Mad Studies’ (McWade, Milton and Beresford, 2015) and earlier movements regarding the ideology behind the provision of mental health care and support. 251 How autism is thought about and described in discourse, intersect with ideologies regarding what it is to be human and what is meant by a ‘good education’. Thus, there are few educational outcomes that all stakeholders and stakeholder groups will find agreement with, or even if one should talk in terms of outcomes. As this thesis indicates, whatever one’s disposition, what is cited as influencing perspectives and priorities is personal experience rather than evidence, including by those who exemplified a factor 1 viewpoint and rated highly the statement regarding the need for education to be based on evidence-based practice. The contrasting views that exist within the field of autism are being informed by differing dispositional outlooks and interpretive repertoires (Potter and Wetherell, 1987), with perspectives formed from differing experiences, fears, anxieties and motivations. Most importantly perhaps are that these perspectives are being formed by people with very differing positionalities in relation to autism and the autistic person. What this has led to is a kind of impasse within the field with those supporting differing ideologies utilising different sources of evidence to support their views and rejecting evidence to the contrary. In order for the ‘silo mentality’ (Arnold, 2010) within the field of autism to be reduced, focused effort will need to be made by people of all dispositional outlooks to understand the perspectives of others as best they can and yet remain humble and reflective with regard to those understandings. It should be remembered however, that autistic people have been making this extra concerted effort their entire lives in their social interactions with others and yet this is rarely felt to be a reciprocal experience (Milton, 2012a, Milton and Giannadou, 2012 – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). 252 In terms of encouraging all stakeholders in the field of autism to be mindful of the differing dispositions and experiences which lead to the expression of differing views, there is a recognised need by the majority of participants within this study for the building of communication and understanding across dispositional divides. In order to do this, the entrenched ‘silo mentality’ (Arnold, 2010) within the field of autism needs to be addressed. At present, academics of various disciplines, differing autistic-led groups, parent-led groups and charities, etcetera, generally work in relative isolation to one another. There are exceptions to this general pattern however. The action research pilot project that was referred to in Chapter 3 of this thesis (also see Appendix B1: Overview of related articles and Appendix B2: Printed copies of related articles), as well as with the work of other activists and scholars such as the inception of the ‘Autonomy’ journal (Autonomy, 2015), led to the setting up of the ‘Theorising Autism Project’ (Greenstein, 2014), which then in turn has influenced the establishment of the ‘Participatory Autism Research Centre’ based at London South Bank University. These projects have all been led by autistic scholars, but are looking to collaborate and build bridges in understanding with other stakeholder groups and academics in the field of autism. Such efforts toward collaboration can also be seen in the work of the Autism Education Trust (Guldberg et al., 2012; Jones et al., 2012; Wittemeyer et al., 2012), where the structure and ethos of the organisation is such that it has sought to bring together representatives from differing groups from across the country, and projects have been designed around developing communities of practice (Wenger, 1998). Whilst attempting to build successful communities of practice can be a difficult task, particularly when there are such dispersed views and 253 embedded power relations between the various stakeholders involved in the wider field of autism, given the ‘three-way dispositional problem’ and also the diversity of views within stakeholder groups, such efforts are fundamental to building better understanding as to why such controversies exist and how one might navigate through them. The findings of this thesis support those that were found through the consultation exercises conducted for the Autism Education Trust’s school-based materials (Milton and Giannadou, 2012 – see Appendix see Appendix B1: Overview of related articles), in suggesting that the building of relationships between practitioners, parents and autistic people is fundamental to educational planning. Indeed, ‘building relationships’ has been a key principle and category demarcated in the guidance materials that were produced. Through building such relationships a better understanding of the autistic learner can be developed, and thus how to enable environments and differentiate curricula to meet their learning needs. These other areas also were demarcated in the Autism Education Trust materials (Guldberg et al., 2012; Jones et al., 2012; Wittemeyer et al., 2012) in order to frame the structure of them. Such collaborative practices are not without their constraints and related barriers with regard to participation and inclusion within them. As argued in the introductory chapters of this thesis, traditionally it has been the ‘autistic voice’ that hitherto has not been listened to, understood, or acted upon, with regard to educational practice. However, such an argument has also been presented (rightly or wrongly given the evidence) by parent-led organisations, particularly those favouring ABA-based educational practice (ABA4all, 2014; Dillenberger et al., 2015). The findings from this thesis suggest that such issues go deeper than 254 the ‘double empathy problem’ between autistic and non-autistic perspectives (Milton 2012a; 2014a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles), in that the ‘three-way dispositional problem’ would suggest that perspectives and outlooks are dispersed between two dominant discourses pulling the field in opposing directions. Interestingly however, participants that exemplified both these discourses expressed concerns that their views were not central to dominant theories and practices in the field. This would suggest that attempts to form a consensus of opinion on educational theory and practice have largely been unsuccessful. For example, the Autism Education Trust has attracted criticism by pro-ABA parent-led groups for not representing their views (ABA4all, 2014). Where consensus is not possible however, perhaps a better understanding of differing dispositions and related discursive accounts and the motivations and influences which have shaped these views is achievable. For communities of practice to be successful and sustainable in regard to educational theory and practice for children on the autism spectrum, it means that participation needs to happen across all levels of the community, and this means not being stuck at the periphery of them as ‘end users’, but having central core roles to play in the development of such communities. In this sense, a lot can be learnt from looking at how autistic-led organisations such as Autscape (Autscape, 2015) manage the access and participation needs of all those involved in such communities. Having representation at the centre of decision-making processes means being able to move beyond tokenistic involvement and toward a partnership of people with an equality of status (Milton, 2014e). Through such 255 involvement, autistic people can begin to break through the ‘glass sub-heading’ (Milton and Bracher, 2013 – see Appendix see Appendix B1: Overview of related articles) – a concept that refers to how autistic people are (mis)framed and (mis)quoted and rarely involved in writing conclusions and recommendations in regard to academic work or practice-related guidance materials (a matter returned to in the concluding chapter of this thesis). Yet, even when one may have autistic involvement at the core of communities of practice theoretically speaking, how can this involvement lead to practices being implemented that are informed by this perspective? 6.6 Listening to autistic voices and implementing recommendations and lessons learnt from such views in practice “When autistic people talk about not wanting to be changed, we’re not talking about wanting to remain static and unchanging throughout time…We’re saying “We don’t want to be changed” in the same way that a cat, faced with becoming a dog, would say “I don’t want to be changed.” The cat isn’t denying the important passage from kittenhood to adulthood. The cat is saying I want to grow as a cat, not a dog.” (Baggs, cited from Autism Women’s Network, 2015). Autistic autobiographical accounts of education reviewed in Chapter 2: Literature review, highlighted educational needs such as: structure, safety, the environment and pace of life/studying, the utilising of interests, bullying, and the opportunity to make friends with other autistic people. All of these issues highlight socially contextualised issues within educational practice, rather than purely internal ‘problems’ to be remediated. Such a social model orientation was also clearly apparent in this sample, indeed, perhaps a stronger radical view than one finds in 256 the predominant existent autobiographical literature. Yet, a level of consensus was found on the above listed issues, as well as with regard to employing a differentiated and tailored curriculum. The views of Grandin (1995) could be seen as someone with factor 1 leanings, but given the caveats she gives regarding behaviourist theory and practice she would possibly be closer to an eclectic or functionalist approach, perhaps akin to the views expressed by those exemplifying factors 4, 5 or 8. As one looks at the ideas of writers from Grandin (1995), Nazeer (2006) and Tammet (2006), through to Williams (1996), Sainsbury (2000), Prince-Hughes (2002) and Lawson (2010) one can see an increasing radicalism. The spread of autistic views currently in print may represent what practitioners and academics wish to promote as a discourse, rather than representing the dominant views within the autistic community, which given the spread of views within this group explored within this thesis would be represented by many more radical activist voices. For Williams (1996), one needs to promote the development of the autistic learner along their own track. This view also resonates with the views expressed in a recent blog by a non-autistic academic who suggested that the goal of intervention should be ‘optimal’ autistic development (Fletcher-Watson, 2015). For Lawson (2010), the more a child feels valued and part of a community of a school, the less likely there is to be a loss of motivation or school refusal. Such a social model approach would be more indicative of the progressive and/or radical values and experiences informing a factor 2 approach. In the consultation exercises undertaken by the AET for their school standards, 32 children and young people on the autism spectrum (average age 10 years old) were surveyed using various methods with their views regarding school (Milton 257 and Giannadou, 2012 – see Appendix see Appendix B1: Overview of related articles). In the analysis of this data, the most highlighted issue was that of bullying, largely from peers, yet also in some cases to be perceived to have been perpetuated by teaching staff. The overall categorical area highlighted most frequently was that of issues to do with enabling (or ‘disabling’) environments, especially issues regarding personal and crowded spaces. When looking at the needs of the individual and their relationships with others, their lack of understanding of the motivations of others (or theory of mind) were hardly mentioned, whilst the need for training in something akin to ‘social skills’ was completely absent from accounts. Instead, what was often mentioned was the lack of understanding from others around them, showing a social insight from a differing dispositional space. When looking at curriculum issues, often mentioned were specific issues within specific academic subject areas, especially English and Literacy. Again, as with adult accounts, the problems faced by autistic people are not generally located (at least purely) in their own autistic embodiment, but in the social contexts within which they live their lives, evoking a social model of disability more akin to a progressive/radical educational ideology (or factor 2 viewpoint). When looking outside the confines of these studies, one can see similar views being expressed by self-advocacy groups such as ASAN (2015), and ARGH (2014), in conjunction with autistic scholars and activists such as Larry Arnold (2010), Nick Walker (2014), Melanie Yergeau (2013), and Lydia Brown (AutisticHoya, 2015). All of whom could be considered as supporting views reminiscent of the factor 2 viewpoint expressed in this thesis, namely a pro social 258 model (or post-social) radical ‘neurodiversity paradigm’, yet it is rare to find such voices on mainstream autism related conference programmes. In a paper published last year (Milton, 2014a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles), I utilised the theories of Collins and Evans (2007) in order to explore the ‘double empathy problem’ (Milton, 2012a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles) in terms of ‘interactional expertise’. According to Collins and Evans (2007), such expertise is gained when an individual is able to communicate in the language of a cultural group, without being able to truly contribute to that field or specialism (which they term ‘contributory expertise’). I questioned the extent to which interactional expertise could be gained between autistic and non-autistic people, and theorised that despite neurological and dispositional differences in outlook and knowledge acquisition, that such differences were likely to be largely cultural and thus, better understanding between dispositions possible (if still being far from ‘perfect’). When reflecting as to why it is that the radicalism often seen within the neurodiversity movement is rarely given space within the discourse of the wider autism community, it indicates historical and political differences in power. However, it could be added to this the idea that those autistic people with a more pragmatic or eclectic ideological view toward educational ideology and practice, or the rare cases of autistics who may somewhat favour a more remedial or behaviourist approach (as shown in the findings of this thesis and elsewhere, see Lowery, 2015), mirror the views expressed by non-autistic parents and practitioners. Therefore, a level of interactional and ideological alignment is 259 possible. This aligning of views is potentially detrimental however, in terms of showing a potential bias in the balance of autistic voices that are allowed space within mainstream settings to describe autistic ways of being. When an autism-related event does not include a radical/critical voice of some kind, it is little wonder when one views the findings of this thesis that many within the autistic community feel alienated and silenced. It might even be argued that such divides in perspective and lack of voice leads to the further entrenchment of the ‘silo mentality’ (Arnold, 2010) and autistic radicalism, and even a further ‘psycho-emotional disablism’ of autistic people due to normative agendas (see Milton and Lyte, 2012 – see Appendix see Appendix B1: Overview of related articles). The functionalist sociologist Robert K. Merton (1938) once theorised that individuals are put under ‘strain’ when there is a disjuncture between themselves (or one could say dispositions) and the idealised ‘goals’ of a society/culture and the prescribed normative means by which one achieves them. Such a strained social positionality in this view was argued to be a position of ‘anomie’, social isolation and alienation. When in such a social position, Merton argued that there were five main options available to people in terms of their social agency: conformity, ritualism, retreatism, innovation, and rebellion. Although a somewhat crude and generalised categorisation of ‘deviancy’, one can see such reactions from members of the autistic community with regard to prevailing medical and behavioural model discourses within the field. Conformity may not be a very natural response to a number of highly stressed and alienated autistic people (Milton, 2012a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles), yet rigid adherence to social rules 260 and structures is not unheard of within the autistic population either. The term ‘ritualism’ referred to those who had rejected in some way the idealised goals of society, but ritualistically conformed to the prescribed means of achieving them. As an example, there are accounts of autistic people who when finally achieving employment, feel that they are underemployed and lacking fulfilment in their employment (NAS, 2015b). It could be suggested that autistic-led spaces, particularly the creation of autistic-only spaces would be a form of ‘retreatism’ from the dominant culture. However, perhaps crossing over with this strategy are those of ‘innovation’ where people achieve goals by unconventional means, and ‘rebellion’ where people reject both dominant goals and ways of achieving them and replace them with their own sets of norms and values. Elements can be found of all of these strategies being explored at autistic-led conferences such as Autscape (Autscape, 2015). Due to a rejection of or lack of understanding with autistic voices, critical and radical views are often left out of debates, despite being seen to be a dominant and coherent discourse within the data set of this study. Given the strength of such views within the autistic community, there is obviously a need to be reflective of representations of ‘insider views’ at autism related events and conferences. Following on from the example set by the Autscape conference (Autscape, 2015), there have been attempts at partnered conferences between the autistic community and charity organisations (ARGH, 2014), as well as the development of the Autonomy journal (Autonomy, 2015), the Theorising Autism Project (Greenstein, 2014), and the Participatory Autism Research Centre at London South Bank University, all of which are autistic-led projects. All of these 261 endeavours seek to make such events and discussions accessible to autistic people and also try to encourage debate across stakeholder and dispositional divides, and thus reduce the entrenchment of the ‘silo mentality’ (Arnold, 2010). There have also been efforts by practitioner-led groups such as the AET (Guldberg et al., 2012; Wittemeyer et al., 2012) to incorporate autistic people as core team members on projects and within their building community of practice (Wenger, 1998). Such efforts are not without their tensions and practical difficulties, yet highlight the autistic voice as paramount. Due to differing dispositions and objectives, the ‘double empathy problem’, and communication differences (or difficulties), this is no easy task, particularly given the diversity of experiences and views expressed by those on the autism spectrum, this is particularly pertinent in regard to those who may struggle to communicate via speech or have severe learning difficulties. Translating the needs of the less verbal and giving voice to this diversity is fraught with dangers and creates many disputes between differing stakeholder groups, yet it should be remembered that radical and rebellious voices exist within such groups too (e.g. Baggs, cited in Murray, 2008). So, when we do listen to a radical and critical viewpoint (akin to factor 2) what would it recommend, and what can be learnt from this approach? What would a non-normative ‘neurodiversity paradigm’ informed educational ideology and practice look like? The answers to these questions may not be obvious or clear, and one would not be able to follow a set model of practice parameters, but some suggestions would be firm ones that could be implemented where there is the will to do so. 262 Amongst those exemplifying a factor 2 viewpoint within this study, the primary rated goal was that of ‘celebrating learners and not trying to ‘normalise’ them’, followed by ‘radical change in society’. From such a viewpoint, a radical shift in ideology away from a normative model of both autism and educational practice is needed, in which autistic ways of being and learning styles are respected and learning activities adapted to suit their needs; needs as defined by them and their learning styles, dispositions, and ways of making sense of the world, rather than imposed beliefs and social standards of those around them. Such an educational ethos would be highly person-centred, highlighting processes (and their potential harms) over aspiring to completing measurable outcomes. Such an approach would utilise the interests of the learner as a foundation from which to build an understanding of themselves and others within various negotiated contexts, rather than teaching the following of reportedly explicit social rules. Such an approach would value humility and be against a generalised evidence-base regarding improved ability to ‘pass as normal’, which would be seen as damaging to one’s sense of self (Milton and Lyte, 2012 – see Appendix see Appendix B1: Overview of related articles). 6.7 Practitioner views and practitioner guidance materials The views of practitioners sampled for this study contrasts markedly with much available practitioner-oriented guidance that has a strong medical, remedial model and often behaviourist tone (Cumine et al. 1998; Peeters and Gillberg, 1999; Hanbury, 2005; Hewitt, 2005; Worth, 2005; Hagland and Webb, 2009). It could be said that since these publications were written, practice and guidance materials 263 have ‘moved on’ to a more social model approach, yet apart from the AET materials (Guldberg et al., 2012; Jones et al., 2012; Wittemeyer et al., 2012), the ‘Ask autism’ online training modules produced by the National Autistic Society (Ask autism, 2015), or University programmes (University of Birmingham, 2015; London South Bank University, 2015; The Institute of Education, 2015; Sheffield Hallam University, 2015), it would be difficult to think of many examples. Perhaps the ‘eclectic’ view espoused by many within this sample was partly an artefact of the participants being partly recruited through the University of Birmingham, as the Autism Centre for Education and Research (ACER) generally teach a more transactional approach to the education of children on the autism spectrum, and were involved in the creation of the Autism Education Trust’s school-based (and other) materials (Guldberg et al., 2012; Jones et al., 2012; Wittemeyer et al., 2012). It may be the case that if a wider sample were to be taken, a different pattern would emerge. It would be impossible to fully predict from this sample what a wider distribution of practitioner views may look like, but not, one could postulate, in terms of the two ends of the spectrum of educational ideology and how these form dominant and opposing views that influence many of the controversies within the field of autism. In order to explore these distributions with a wider sample population, further research would be needed (and will be explored in the concluding chapter). Jones (2002) suggested that there was a growing consensus regarding the educational needs of autistic children, which included involving parents, giving pupils clear instructions, understanding sensory and communication needs, utilising interests and supporting transitions. Indeed there was a fair amount of 264 consensus found on many of these issues, however no such consensus was found in this study with regard to other aspects that Jones (2002) highlighted, in particular, a ‘functional approach to managing behaviour’. The findings of this thesis found that such an approach (or at least discourse) was ill-favoured by the vast majority of autistic participants as well as some non-autistic participants. Much of the educational guidance reviewed in Chapter 2: Literature review (Hanbury, 2005; Hewitt 2005; Worth, 2006; Hagland and Webb, 2009) acknowledges the need for better understanding and communication between staff and parents, but little mention is made in terms of involving the autistic pupil/student in decisions that affect their lives, although, this need was recognised by the AET’s school-based materials (Guldberg et al., 2012; Jones et al., 2012; Wittemeyer et al., 2012). A long-standing framework for the education and support of autistic people has been the SPELL framework, which has been under development and review by the National Autistic Society since its inception (Mills, 2013; NAS, 2015d). The SPELL acronym stands for: structure, positive approaches, empathy, low-arousal, and links. Of all the models for autism practice that exist, this is perhaps the most general and adaptable to differing ideologies, and, findings from this thesis could help to develop it yet further. The ‘structure’ component of the framework looks at ways in which practitioners can reduce anxiety through increasing the predictability of a social context. Given the diverse experiences of autistic people and their perceived needs in regard to structure and routine however, such provision needs to be led by this need and not the rigid adherence to structures as if all were beneficial, no matter how illogical or unnecessary in the view of those 265 receiving such contextual management. The ‘positive approaches’ component of the framework asks practitioners to play to strengths and interests, to be aware of uneven skill profiles, and to set high expectations. As with the ‘structure’ component, as long as there is a realistic understanding of a particular child and their capabilities, this would be likely to receive a level of agreement from a range of participants in this study. The ‘empathy’ component of the framework looks to help build understanding and connection between the practitioner and those that they seek to support. Given the ‘double empathy problem’ (Milton 2012a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles), this is no easy task, and one of continual mutual negotiation, yet building such relationships and connections were seen as consensually important within this study by all stakeholders. The ‘low-arousal’ aspect of the framework asks practitioners to recognise the stress caused by sensory overwhelm and by social confrontation and seek to reduce it. This area links in with that of the ‘enabling environments’ aspect of the AET school-based materials (Guldberg et al., 2012; Jones et al., 2012; Wittemeyer et al., 2012) and the findings of this thesis, and again would secure widespread agreement and particularly support from autistic people. The ‘links’ component of the framework looks to promote consistency in approach and the social inclusion of autistic people. 6.8 Parental engagement The distribution of views from non-autistic parents within this study was skewed toward that of a factor 1 approach (compared to other stakeholder groups). This 266 was the case despite the sample for this study being parents of children of secondary-school age and thus their views are not likely to be solely related to influences regarding ‘early intervention’ in the field of autism. Thus, one needs to ask the question why such a view persists over time and is more likely to be held by this stakeholder group than others. Looking at the qualitative remarks, particularly those of participant P20 who most exemplified a factor 1 viewpoint from the sample, there was a palpable anxiety regarding the future that lay ahead for their child. This was coupled with the feeling of being let down by provision which at least claimed to be basing their practices on approaches such as TEACCH (see section 4.16 in Chapter 4: Findings). When meeting ABA practitioners, they found an effort and engagement with both themselves as parents and their child, and perceived benefits from such an approach. Whatever the influences affecting a parental point of view may be, whether personal experiences, expectations, information provided on the internet, and so on, there is a responsibility on practitioners and the research community to provide clear information on not only their roles, but their practice ethos and what they are basing this on. Perhaps the perceived need for an evidence-base by many parents following a factor 1 viewpoint is more to do with a disillusionment with practitioners than what has informed their own view (which is often it would seem heavily influenced by personal experiences, as with other views expressed by participants in this study). Clarity and communication is needed for all concerned, as there is a real danger of parents looking for information and guidance and finding reports that offer much, but perhaps have very little to support such a claim, or in some cases are actively dangerous for the autistic person concerned (Research Autism, 2015). 267 A driving force for many parental views is the perception of a lack of ambition or effort from practitioners, described as a form of neglect or ‘baby-sitting’. Whilst against extreme forms of normalisation ideology, often parents supported priorities that when viewed from a factor 2 perspective would indicate a normative, even ableist, approach. There are many factors that can influence why a parent may set high expectations, which to a practitioner may seem unrealistic or unattainable. One such factor is the social pressure, particularly on mothers, to be seen as ‘good parents’ (Tardy, 2000), which is often judged socially by the behaviour of one’s children and the perceived reasons for said behaviour. It is seen as parental responsibility to prepare a child for independent life in the adult world and somehow a failing of them as a parent if this does not happen (DCSF, 2008). Given the diversity of views within and between stakeholder groups in this study, coupled with the need for consistency of approach in the education of any one child in practice, there is a pragmatic need for all concerned to explore the educational priorities they are looking to achieve and why. A parent may feel the need to express their views regarding their child’s education in a structured way to a school. School practitioners may be teaching a class where the parents of one child want them to follow an intensive ABA-based approach, while the parents of another child would like a pupil and interest-led curriculum. There is also a lack of engagement with fathers of autistic children within the field, which this study unfortunately was unable to address. Above all perhaps, there needs to be 268 practical means by which autistic children and young people attending school can make their views be heard and acted upon. 6.9 Providing practical means by which differing stakeholders can explore their educational priorities in a respectful way “...what counts as success in an educational programme may be judged very differently by different participants in that situation...Thus it is impossible to answer the question without making the goals of the intervention explicit. Others will then need to consider whether they share these goals...” (Jordan, 1999b: 420). The findings from this thesis indicate that there is a need for practical tools by which differing stakeholders can explore their views and priorities with one another in a respectful manner (see Chapter 5: Meta-analysis). Whilst there has been exciting work in regard to eliciting the views of autistic people through various mediums such as collage (Ridout, 2014) and photography (Milton, 2014c), and utilising approaches such as personal construct theory or critical pedagogical theories (Moran, 2006; Greenstein, 2013; Williams and Hanke, 2010; Milton, 2014b – see – see Appendix see Appendix B1: Overview of related articles), perhaps less attention has been given to eliciting the views of practitioners and parents in regard to their educational priorities and influences in coming to such views. It is therefore a proposal here, that a simplified practical tool can be adapted from the Q-sort ranking method utilised in this study, as an aide for parents, practitioners and autistic young people to potentially explore their priorities and be 269 able to highlight any tensions in viewpoint before they become entrenched ‘battle zones’. Whilst children and young people on the autism spectrum may not always be able to utilise a resource highly dependent on verbal descriptions, one could still explore educational likes and dislikes through ranking (or at least preference related) activities. More verbally articulate young people attending secondary schools would however be able to participate in a more verbal exploration of such priorities. In such situations, the autistic young person, their parent and relevant practitioners could share with one another their priorities and reasoning for them, opening up a space for discussion and negotiation. Such a tool would not need 42 statements, as such a number was utilised in this study in order to produce a factor analysis, but rather far fewer key statements, perhaps a grid of 9 or 16 statements in a pyramid structure echoing that of the Q-sort. Some may wish to rate statements of equal importance and have a simpler structure of being for, against, or neither, regarding a particular statement. Within such a structure, a list of statements can be provided as examples that one can use, but perhaps space left for the stakeholders involved to write their own statements regarding educational priorities, thus making them more specific to the child and context being discussed. Such a tool could be used to frame objectives for individual education plans (IEP), and to reflect upon and review these in concordance with IEP reviews. A sample prototype practice tool is given in Appendix A23: Practice tool for exploring educational priorities. 270 6.10 Methodological discussion In applying Q-sort methodology for this study, a number of strengths and weaknesses to the method were found, as well as potential applications of the method. In general, the method was found to be a highly useful, flexible and adaptable approach that had much to offer researchers working within various theoretical paradigms. For researchers wishing to operationalise personal subjectivity without overtly distorting the data through preconceived models and assumptions, as is somewhat inevitable when using Likert-scale based questionnaires, Q-sort could be said to be an invaluable research tool. The method has potential appeal to those of a more positivist persuasion, by applying some statistical rigour to the mapping of subjectivities, whilst also appealing to social constructionist theorists wishing to reduce the influence of researcher bias (Watts and Stenner, 2012). Such a mixed-methods approach also produces in-depth qualitative data that can then be triangulated with the statistical factor analysis. What a Q-sort method cannot do is produce data that can then be generalised to a wider population. In order to do this a survey questionnaire would need to be employed. However, by utilising Q-sort methodology, researchers would be able to run a pilot exploratory study in order to help define the issues and terms that could then help inform the design of such a survey (this potential is explored within the context of the distribution of stakeholder views in the concluding chapter of this thesis). As with all research methods available to study personal subjectivity, there are drawbacks to the Q-sort method that were found through the process of 271 completing this study. Firstly, the structured Q-sort method utilised in this study forces participants into ranking statements that otherwise they may see as being more equal in value. By forcing participants to make a choice, it does make them reflect on the relative importance of statements, yet may create an artefact from the data of over-emphasising differences in view, rather than areas of commonality. An unstructured Q-sort may have produced a less differentiated data-set. However, the downside here would have been less well-defined factors being produced for analysis. All of the procedures undertaken in this study were undertaken utilising PQMethod software, other than the collection and analysis of the follow-up interview questions. In this sense, the data outputs and factor analysis were free from researcher bias, other than the potential bias that could occur in the selection of the initial Q-set of statements from the available concourse of wider views available. A potential problem with the method utilised in this study, was the wording of individual statements that could have contained more potential for negative connotations, such as ‘every moment being seen as an opportunity for reinforcing appropriate behaviour’ might have been interpreted as overly intensive. Yet, as Brown (1980) stated, an important aspect regarding the theorising of Q-sorts is that there is a limit to the number of existing opinions on any one topic, and a well constructed Q-sample will reveal these perspectives in operation. It is debateable however, with a Q-set of 42 statements, that one would be able to cover all possible discourses within a wider concourse. Yet, a larger set of statements would have become cumbersome and could have led to boredom for those participating. The same criticism can be levied however at survey 272 questionnaires utilising numerous Likert-scale based questions. Also, differing researchers when designing a Q-set of statements would potentially use differing statements, or sampling methods. However, the main aim of such a method is to provide a wide enough range of statements indicative of the range of views available on a topic, so that participants can sort them and provide their own meanings and interpretations through the Q-sort process (Brown, 1980; Thomas and Baas, 1992; Watts and Stenner, 2012). Therefore, having examples of what might be considered extreme ideology, allowed participants to interpret their own meanings of such statements alongside others from the wider concourse of potential views. For Van Exel and de Graaf (2005), the ideal number of people asserting each factor in a Q-sort analysis would be between four and five, yet often only between two and four exemplifiers are found, with rarely more than six factors emerging from such an analysis. From the data-set of this study of the views of sixty participants, eight factors were extracted, yet six of these were asserted by between one and three people only. However, two factors dominated the data, with nine and eleven participants exemplifying the first two factors respectively, thus showing the strength of these factors as influencers within the data-set. This is all the more the case when considering that the two dominant factors were in almost opposition to one another, almost registering a negative correlation score when compared. 273 In general, the Q-sort method was found to be highly adaptable and to have wide-ranging potential as a research and/or practice tool for exploring the dispositions and discourses of people in all kinds of settings, not least within educational settings and in the context of autism-related research. In addition to conducting large Q-sort studies followed by factor analysis to help define the discourses within a wider discursive concourse of views on any particular subject, the method could be used in simpler ways. For example, using less statements, or ranking pictures or photographs instead of statements. If one wished to explore the views autistic children had of school life, one could ask children to take their own photographs of what they felt was important to them and then rank them in a sorting exercise of some kind. Such a tool could be used to explore pupil perspectives from their perspective and would be complementary to other work conducted in this area utilising Personal Construct Theory (PCT) (e.g. Moran, 2006; Williams and Hanke, 2007; Greenstein, 2013; Milton, 2014c). Such a method makes subjective choices more tangible, visually realised and communicable. 274 Chapter 7: Conclusions and implications “Education is not preparation for life; education is life itself.” (John Dewey, cited from brainyquote.com, 2015). 7.1 Introduction Following on from Chapter 4: Findings and Chapter 5: Meta-analysis, a ‘three-way dispositional problem’ was found between stakeholders regarding their ideological preferences for the education of autistic children of secondary-school age. This led on to a discussion of a number of issues that arose from the study in Chapter 6: Discussion. These debates included an examination of the ABA-debate, the effects that the environment has on an autistic child’s ability to learn, presenting different stakeholder views in a respectful way, the need for updated practitioner guidance and improved parental engagement, and the need for a practical means by which stakeholders can discuss their educational priorities and objectives. In this final concluding chapter, theoretical and practical conclusions and implications from the findings of this study are put forward in Section 7.2. This is followed by section 7.3, which looks at methodological conclusions and section 7.4 that explores the potential for further research to follow on from this thesis. Finally, section 7.5 offers some concluding remarks regarding how the research community may be able to help provide the conditions for autistic people to break through the ‘glass sub-heading’ (as explained in this section and Milton and Bracher, 2013 – see Appendix B1: Overview of related publications). 275 7.2 Theoretical and practical conclusions and implications The findings from this thesis indicate two main discourses that are influencing educational ideology regarding autistic children of secondary school age, pulling in opposite directions from one another. One a radical / critical pedagogy, and the other a more normative approach influenced by Liberal Humanist ideology, and Behaviourist and Functionalist theory and practice, more akin to something approaching a PBS (Positive Behavioural Support) model. Of the sixty participants that took part in this study, differing distributions were found when looking at the views held by differing stakeholder groups, creating a ‘three-way dispositional problem’ between autistic adults (including parents and practitioners) largely following a more progressive or radical agenda, non-autistic parents often following more of a PBS-style approach, and practitioners and academics who are neither autistic nor parents occupied a variety of ‘middle-ground’ positions between the two poles, sometimes expressing somewhat ‘pragmatic’ or ‘eclectic’ approaches, and potentially being influenced by conditions and structures in a differing way to other stakeholders in the field. The theme that underlies these two discourses could be said to be the influence of differing models of disability, and how to provide appropriate help and support to such a person and why (see section 4.16). Parents following a more normative agenda may be doing so through a perceived lack of support and anxiety about their child’s future life chances. Autistic adults often become radicalised due to a variety of reasons, not least of which is the feeling that they need to be listened to in such debates, and if so, have a greater potential to be understood. Such differences of opinion were generalised differences however, as there were small numbers of participants in 276 each stakeholder grouping that bucked the trend of their respective dominant view, suggesting that the ‘double empathy problem’ theorised to exist between autistic and non-autistic people is to at least some extent cultural (or at least dispositional) in origin (Williams and Hanke, 2010; Greenstein, 2013; Milton 2012a; 2014a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). The Q-sort method utilised in this study could be said to highlight differences of opinion over potential areas of consensus. Despite this potential bias, it is a significant finding that not only did the two main factors extracted from the Q-sort method express a view that was in near opposition to one another, but these discourses were seen to be largely expressed by differing stakeholders within the field, showing the importance of disposition and personal experience in the choice of educational ideology, priorities and practices favoured by any one individual. Given the diversity of views expressed by the participants in this study, seeking a ‘false consensus’ would be detrimental to progress. Instead, what the findings from this thesis suggest is needed, would consist of more communication, openness and transparency, in parallel with efforts from all stakeholders to find ways of discussing controversial issues in a respectful and mutually beneficial way. As an autistic activist, I could argue that the autistic voice needs to be paramount in all educational guidance regarding autistic children, yet this would be to deny the present realities and power structures that all stakeholders involved are working within, and the influence these have, along with differing personal/social dispositions one inhabits, on the discourse one extols and the reasons for doing so (Bourdieu, 1986). In order to breakdown the ‘double 277 empathy problem’ (Milton, 2012a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles) between differing dispositions (Milton, 2014d – see Appendix see Appendix B1: Overview of related articles), then one must seek to increase the ‘interactional expertise’ (Collins and Evans, 2007; Milton, 2014a – – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles) that stakeholders have with one another. In order to acquire this, immersion is required into the culture and practices of one another, or in other words, to build collaborative communities of practice (Wenger, 1998). For Wenger (1998), communities of practice are ubiquitous in culture and can be seen in all their diversity in family homes, in the workplace, at social clubs and so on. Such communities are formed whenever a collection of people engage in a process of learning through their activities. Communities of practice can have a range of participation available to members, from core participants to those on the periphery, but all involved in a community share a level of mutual engagement and common activity or interest through which they learn common practices. Through the membership of such groups, participants learn social competencies from interacting with one another that distinguish them from other groups, and in doing so, develop a repertoire of resources that represent their experiences and practices, as well as ways of addressing common social issues that they encounter. Such shared practices can only be sustained by the social actors participating within them. In order to build communities of practice, members of communities need to engage in relationships with one another over a sustained period of time. As a consequence of being organised around common principles 278 and activity, communities of practice can also create a shared sense of identity. Communities of practice generate a shared repertoire of ideas that become translated into materials, documents, and language. In this sense, a community carries its shared history and knowledge it is able to collate. Similarly to Collins and Evans (2007), Wenger (1998) argues that the acquisition of knowledge can be seen as socially situated and contextual. As members of communities become more competent, they become ‘contributory experts’ (according to the schema of Collins and Evans, 2007), or ‘core members’ (according to the schema of Wenger, 1998). Thus, learning in this kind of theorising is seen as accomplished through a process of social participation. Of course, not all communities of practice are equally advantageous to all of their members, and some are distorted by unequal power relationships and the tight patrolling of membership and participation. When applied to the field of autism, one can see that a number of communities of practice have evolved in relative isolation to one another. From autistic self-advocacy groups, through communities of practice that have developed through a particular academic discipline or paradigm, to parent support groups and forums, and professional conferences, one can see that many communities of practice exist. Each of these communities produces their own language, their own culture, and their own sets of resources and materials. The extent that these have been shared practices between these communities however has been traditionally at their respective fringes. Such a separation of related communities is a significant issue within the field of autism, characterised by Arnold (2010) as the ‘silo mentality’, and can be said to be largely responsible (combined with potential embodied differences of perception) for the ‘three-way dispositional problem’ 279 found in the data of this thesis. One of the downsides of communities of practice, is that they develop in ways in which their shared competencies, experiences and practices, distinguish them from other groups, both providing a sense of identity and pride for their members, but also potentially fermenting a disparaging view regarding ‘outsiders’, especially if holding opposing views and performing practices that would seem somehow abhorrent to those within one’s own group. Such disparities can easily lead to apathy, dyspathy (Cameron, 2012), and antipathy and/or stigma toward others. Therefore, to limit the effects of the ‘silo mentality’ (Arnold, 2010), the barriers separating these communities need to be reduced and collaborative communities of practice need to be established in order that stakeholders do not feel alienated and disenfranchised. This is easier said than done however, when autistic activists have felt excluded from debates, as have parent-led groups advocating for ABA-based practices (Dillenberger et al., 2015). An interesting starting point to explore this potential is by looking at autism-related conferences and events. How many of these conferences explicitly attempt to bring together significant participants from all stakeholder groups in the field? “As disability academics and/or activists we cannot focus on how society needs to change without recognizing our own responsibility to develop greater understandings and appreciation of human difference within our own academic community.” (Hodge, 2014: 656). 280 Hodge (2014) looked into the extent to which ‘unruly bodies’ can become socially excluded in disability conferences. That, even within ‘informed spaces’, hegemonic normalcy and ableism can be entrenched in everyday practices, such as negative reactions to interruptions from audience members whilst a speaker is presenting. Hodge (2014) suggests that how such events become more accessible and inclusive needs to be informed by those who currently feel excluded, so that collectively the community can develop more ‘enabling environments’. Such sentiments can be paralleled with those of AutisticHoya (2015), an autistic activist blogger, who in an article entitled: How not to plan disability conferences (or, how to be an ableist asswipe while planning a disability conference), sarcastically commented: “You just have to make the token disabled person feel like someone listened to their opinion before you proceed...Remember. You’re being perfectly reasonable. Any possible complaints are unfounded accusations riddled with personal bias, irrational thinking, and emotionally volatile lack of perspective.” (AutisticHoya, 2015). In response to exclusionary practices, AutisticHoya (2015) suggests including disabled people in the planning group of such events, with equal responsibility and decision making power as other group members, or in other words, to be represented at the core of collaborative communities of practice. The current state of play within the field of autism has parallels with a series of arguments that ensued in the 1990s between a number of sociologists and scientists which became known as the ‘science wars’ (Collins and Labinger, 2001). Sociologists were charged with shoddy scholarship and attempting to undermine scientific 281 practice, whilst sociologists suggested that the scientists were misunderstanding their arguments, idealising their own practices, and trying to silence criticism; a pattern reminiscent of arguments put forward by protagonists in the field of autism (e.g. Hastings 2013; Keenan et al. 2014). In 1997, some of the academics involved met at a ‘peace workshop’ in an attempt to clarify issues and see if any common ground existed. From this workshop Collins and Labinger (2001) edited a collection of essays on the subject. Included in this collection was an essay by Mermin (2001, cited Collins and Labinger, 2001), a theoretical physicist, who concluded with three simple lessons: 1. Focus on the substance of what is being said and not on alleged motives for saying it. 2. Do not expect people from remote disciplines to speak clearly in or understand the nuances of your own disciplinary language. 3. Do not assume that it is as easy as it may appear to penetrate the disciplinary language of others. These points no doubt influenced the work of Collins and Evans (2007) in their model concerning the acquisition of knowledge, and would make good initial guidelines for the construction of collaborative communities of practice involving stakeholders with differing dispositions and espousing differing discourses within the field of autism, whether that be in terms of organising autism-related events or in the formation of research teams. When research teams or the writing of practice guidance has involved significant autistic input, such as the AET school-based materials (Guldberg et al., 2012; Jones et al., 2012; Wittemeyer et al., 2012) or the National Autistic Society’s Ask autism project (NAS, 2015a), the potential benefits in terms of the quality of material produced, its accessibility and its ethos are evident. By including members of teams that occupy differing 282 dispositions and outlooks, one is able to weigh-up the arguments presented by differing interpretations of the same phenomena or data, and these can be openly debated. Of course, not all stakeholder groups can be said to be content with their current level of involvement (ABA4All, 2014; Dillenberger et al., 2015), and perhaps what is needed is some kind of ‘summit’ or ‘peace workshop’ in order to initiate contact and build an acceptance or even an understanding, if not a consensus of opinion. Initial attempts at creating such discursive spaces can be said to have originated within the autistic community, with examples such as the Theorising Autism Project (Greenstein, 2014) that sought to bring together people from all stakeholder groups so that they can work interactively. The project has organised seminar days with this purpose in mind and led by autistic people and their concerns, which at this stage may well be needed to redress the traditional power imbalance between stakeholders in the field. This project has also helped to inspire the setting up of the ‘Participatory Autism Research Collective (PARC)’ at London South Bank University, an initiative that is autistic-led and focusing on the promotion of participatory methods in research within the field. It should be remembered however, that neither of these projects are currently funded. The funding for participatory research or even inclusive autism-related events is sparse, especially when compared with the funding available for scientific or medical-model based research (Pellicano et al., 2013; Milton and Bracher, 2013 – see Appendix see Appendix B1: Overview of related articles). This imbalance, at the very least, needs to be problematised, and until redressing this balance is seen as a priority, controversies within the field are not likely to be clear and understood by the various parties involved, and even less likely to subside. Such a need for inclusion of autistic voices produces cynicism in regard to whether 283 current efforts by the James Lind Alliance (2015) or the National Autism Project (2015) in setting targets for the planning of future research in the field will be able to muster any kind of consensus or favour from either autistic people or non-autistic parents of autistic children. Rather than seeking a ‘false consensus’, there does need to be an opening up of debates and without these being distorted by particular agendas. Not only could autism-related research, events and conferences, become more inclusive in their participatory practice, but so can schools and other social organisations. A major issue that was particularly highlighted by autistic people in this thesis was that of how disabling everyday environments, structures, and social expectations can be for autistic people. Currently, organisations are obliged to make ‘reasonable adjustments’ in order to further incorporate the needs of disabled people, yet such an approach is often translated as ‘special accommodations’ in terms of alterations to the norms of a community. Rather than taking an approach of normative adjustment to building enabling environments, one could potentially learn from the concept of ‘Universal Design’ (UD). The concept of UD suggests that environments need to be designed to be accessed, understood and usable to the greatest extent possible by people of all ages, sizes and abilities. Rather than making ‘special requirements’ to meet the perceived needs of a specified grouping of people, UD is based on the premise that environments that are accessible, usable, convenient and pleasurable lead to benefits for all (Milton, 2015). Such a design ethos could potentially help in making the case for why creating autistic-friendly environments could simply be considered as ‘good design’ practice. If adopted in a school environment, this 284 would mean not only adjustments to architecture and school routines, but also to the flexibility of curricula to meet a wider diversity of need. Of course, there will always be a tension between ideals that one may wish to work toward and the constraints of current political and structural conditions, yet as many of the autistic adults sampled in the Q-sort exercise suggested, maybe a radical change of ethos is needed, if organisations and service providers are to become more inclusive and participatory. One could say that efforts toward this have already begun however, through the work of the Theorising Autism Project (Greenstein, 2014), PARC and the collective nature of the AET (Guldberg et al., 2012; Jones et al., 2012; Wittemeyer et al., 2012). It is hoped that the findings from this thesis can feed into the work of all of these groups, including the development and implementation of the practice tool outlined in Chapter 6: Discussion (section 6.9 and Appendix A23: Practice tool for exploring educational priorities). 7.3 Methodological conclusions and implications Exploring the subjective accounts and narratives of research participants is never an easy process and such projects are often critiqued for lacking rigour or a substantial sample size, whilst quantitative analysis of the same topic areas are often lacking in-depth nuance or are overly led by the concerns of the researcher. In comparison, Q-sort methodology is particularly useful as a mixed-methods approach, providing a rigorous and robust statistical analysis coupled with opportunities to explore issues more deeply through qualitative discussions, focus groups, or in the case of this study, follow-up online interviews. Q-sort methodology was found to be a highly adaptable and flexible method that 285 epistemologically can sit comfortably within a social constructionist ontology (Watts and Stenner, 2012). Concomitantly, methods derived from personal construct theory (Moran, 2006; Williams and Hanke, 2007; Greenstein, 2013; Milton, 2014c), and Q-sort methodology can help to delve into personal constructions, but also help to locate such narratives within wider social discourse. The findings from this study indicated a split in views along the grounds of disposition to the topic and provide a window into how such differences are influencing the interpretive repertoires that people employ to make sense of the situations they live in. As a method, it can be used in both a therapeutic or counselling arrangement, or as a personalised research tool varying in levels of complexity. For helping to explore the research questions set out in this thesis, Q-sort methodology proved to be an invaluable approach. Ideally however, there were areas of the research design that could be improved upon. For instance, it would be desirable to add more adaptability to the PoetQ software in terms of links to qualitative questions. Despite weaknesses to the Q-sort method itself, as outlined in Section 6.10 of Chapter 6: Discussion, such as the choosing of initial statements for a Q-set, these issues do not detract from the overall utility of the method in helping researchers and indeed participants explore their subjective views on a chosen topic. A weakness in the study which was not due to the method chosen was the range of stakeholders within the sample. In recruiting participants, there was a shortage of both autistic adult men and fathers of autistic children who took part, and this was not remedied by the end of the period in which the study could be kept open. Given that the views of participants from both of these groups within this study 286 were less likely to exemplify a factor 2 or factor 1 perspective respectively, then if a follow-up study were to be carried out to help distinguish the distribution of views within a wider population, then quota-sampling would need to be employed. Often the gender identity of the participants within survey-based research in the field of autism is not made clear (e.g. Pellicano et al. 2014), which could lead to a biasing toward particular dispositions over others. Quota-sampling would also be difficult however, due to the assumed prevalence figures of an autism diagnosis and how many argue that there is an under-representation of women being diagnosed as on the autism spectrum (Attwood, 2006; Gould and Ashton-Smith, 2014). Whatever the method used however, it would be a recommendation from this thesis that the gender identity of participants be recorded where potentially relevant to the findings produced. 7.4: Recommendations for future research As shown in Section 6.10 of Chapter 6: Discussion, a potential perceived weakness of Q-sort methodology is that it is not an appropriate method for being able to estimate whether findings regarding the distribution of views from various participant sub-groupings can be generalisable to a wider population. However, by utilising Q-sort methodology, researchers can run exploratory pilot studies in order to help define the issues and terms that could then help inform the design of a survey study. Given the well described factors within this study, particularly factors 1 and 2, these aggregated perspectives could be written as vignettes or as a set of preferences to be measured by Likert-scales. These could also be compared against similar summaries extrapolated from available models (e.g. 287 TEACCH, SCERTS) such as those used in the pilot survey study that was conducted as part of this thesis (see section 3.2 of Chapter 3: Methodology and Milton, 2012c – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles). Such a survey would then be able to more accurately measure the distribution of educational ideologies and views regarding priorities for practice across a wider and generalisable sample group. I would hypothesise however, given the bearing that disposition had on the framing of individual Q-sorts within the sample of this study, that if not a three-way distribution, that a significant difference would be found between the perceptions of autistic and non-autistic stakeholders. A second area in which the recommendations from this thesis could lead to future research would be with regard to the development of a practical tool for exploring the views and priorities that stakeholders have (as outlined in section 6.9 of Chapter 6: Discussion and Appendix A24: Practice tool for exploring educational priorities). Such a tool could be fully developed and then trialled to see if it made a difference to subjective ratings of communication and satisfaction with the process of goal-setting in the writing of Individual Education Plans (IEPs) and whether such tools helped in this process. Through such research, the tool could be refined and then potentially added to the AET resources for schools. Finally, the findings from this thesis indicate a divide between autistic and non-autistic views regarding educational ideology and priorities for practice, if not a three-way dispositional divide between autistic adults, non-autistic parents, and 288 practitioners and academics working with autistic people. I have already suggested elsewhere (Milton, 2014a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles) that there is a need for more research regarding dispositional diversity, the ‘double empathy problem’ (Milton, 2012a – see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles), and the amount of ‘interactional expertise’ attained between autistic and non-autistic people, potentially through the use of the ‘imitation game’ experiment as devised by Collins and Evans (2007) and influenced by the work of Alan Turing. In order to better understand the differences of viewpoint held by stakeholders regarding educational priorities for autistic children, one needs to be able to address the respective lack of interactional expertise and commonality of discursive repertoires used. Therefore, research is needed into the nature and impact of the double empathy problem (Milton, 2012a – see Appendix see Appendix B1: Overview of related articles, and Appendix B2: Printed copies of related articles) in order to be able to build a collaborative community of practice that can address the controversies and misunderstandings that exist, and that the ‘silo mentality’ within the field has done little to remedy. I am glad to say though that this theorising has already influenced others and been reflected upon in regard to a number of contexts (e.g. Chown, 2014, The Autism Anthropologist, 2015). 7.5 Breaking through the ‘glass sub-heading’ In writing a paper regarding the participation of autistic people in research (Milton and Bracher, 2013 – see Appendix B1: Overview of related publications), my 289 colleague Mike Bracher coined the term ‘glass sub-heading’ to indicate how autistic people may often be quoted or commented upon within research reports, but are rarely in the position of writing the interpretations of data or conclusions of such reports. In order for to break through this barrier, autistic people (as well as other stakeholders) need to be able to input into what research questions should be addressed, and the methodological design of research projects, especially ethical scrutiny, but also in terms of interpretations of evidence and reflections often framed within established ontological and theoretical assumptions. One way of doing this would be to give voice to separate and distinct interpretations of data, rather than seeking reliability and consensus from differing researchers within a team (and practice community). The latter approach is often regarded as increasing the reliability and validity of research findings, but instead may lead to the creating of yet another practice ‘silo’ in terms of interpretation. Utilising the former approach would lay bare positionality and conflicts of interest, and controversies regarding the theoretical interpretation of evidence can be clarified. For such a transition to happen in regard to how academic research in the field of autism is conducted would mean the valuing of autistic input and expertise on a par with that of other research team members. Too often, participation and even ‘co-production’ can be used to mean little more than a token gesture (Milton, 2014e; AutisticHoya, 2015). For inclusive practice to flourish, autistic people (along with stakeholders with non-autistic dispositions) need to feel a sense of belonging within collaborative communities of practice. It is hoped here that the example set by the efforts made by the AET (Guldberg et al., 2012; Jones et al., 2012; Wittemeyer et al., 2012), the Ask autism project (NAS, 2015a), the Theorising Autism Project (Greenstein, 2014), the PARC group, Hodge (2014), the 290 Autonomy journal (2015), Autscape, and other such endeavours can act as a signpost for all seeking to build bridges across dispositional divides. 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These included small-scale interview and survey studies with parents of autistic pupils, as well as a project involving an online sociology study group for autistic adults. All of these pilot studies were conducted following the advice of the British Educational Research Association (2010) and the British Psychological Society’s guidelines for research with human participants (2009) of informed consent, right to withdraw, anonymity, and use of data; the only partial exception being the research interviews, which were conducted using a public forum website: Talkaboutautism.org, where participants were fully aware that this would be the case. These interviews would also have been removed from the website if the participant chose to do so. These initial pilot studies formed part of work for a research module for the PGCert in Educational Research Methods at the University of Birmingham and checked by the module leader and my then supervisor. The full ethical review form for the main Q-sort study is copied below: 309 UNIVERSITY OF BIRMINGHAM APPLICATION FOR ETHICAL REVIEW 310 311 312 313 314 315 316 317 318 319 320 321 322 323 324 325 326 Appendix A2: Q-sort score chart The following table (Figure A1.1) gives a pictorial depiction of the structured Q-sort distribution that participants were asked to rank statements within for this study. Figure A2.1: Q-sort score chart Most disagree Most agree 2 2 4 4 5 5 6 6 8 The numbers on this chart refer to the numbers of statements allowed to be ranked by participants in each column, thus creating a quasi-normal distribution of rankings from most agree to most disagree. 327 Appendix A3: Instructions given to participants for Q-sort pilot studies The following instructions were given to participants who took part in the initial Q-sort pilot studies: These instructions will guide you through the sorting activity. If you have any queries please ask. 1. You will be given a deck of 42 statement cards. Each of these cards has a statement written on them concerning educational priorities for pupils on the autism spectrum attending secondary education. I will be asking you to rank-order these statements from your own point of view. Each statement is a differing ending to the following: ‘Education for pupils on the autism spectrum should prioritise the inclusion of...’. The numbers on the cards have been assigned to them randomly and are only relevant for recording your responses later. 2. I am interested in your interpretations of the statements (so if they are confusing to you, then this is your interpretation of them), and your view on educational priorities for autistic pupils. All statements should be read as stand-alone statements and not related to whether or not ideas on other statements are being implemented or not. 3. Read the statements thoroughly and place them into three piles. Firstly, a pile for those you would tend to disagree with, secondly a pile of the statements you would tend to agree with, and a pile that you neither agree nor disagree with, or you think are not relevant or applicable to your point of view. When you have finished this, write down the number of statements in each pile. Please check that these three numbers add up to 42. 4. You will now be given a sorting sheet. Take the cards from the ‘agree’ pile and read them again, select the two statements that you most agree with and place them in the right hand boxes of the diagram on the sheet. Next select the next four statements that you agree with most and place them under the column 2nd furthest from the right. Follow this procedure with the rest of the statements that you tend to agree with moving from the right-hand columns to the left. 5. Now take the cards from the ‘disagree’ pile and read them again. Like with the ‘agree’ pile, take the two statements that you disagree with most and place them under the far left column. Follow this procedure with the rest of the disagree pile, moving from the left to the right. 6. Finally, take the remaining cards and read them again and then arrange them in the remaining boxes on the sorting sheet. 7. When you have placed all the cards on the sorting sheet, please go over how you have placed them and make any changes that you want to. 8. When you have finished, please write down the numbers from your cards into their respective boxes on the record sheet. 328 9. We will then discuss the activity as a group. If you finish before others in the group, then please reflect on the following questions for discussion: Think of why it is you agreed most with the two statements you placed under the far right column, and also why it is you disagreed most with the two statements you placed under the far left hand column? 329 Appendix A4: PoetQ introductory text The following information was provided to participants upon accessing the PoetQ online activity: Welcome to POETQ and thank you for your interest in this study. There currently exists a wide range of theories and practices pertaining to the education of children and young people on the autism spectrum, yet there is often contentious disagreements as to what educational practices should be prioritised for such pupils/students. The study involves the ordering and ranking of written statements regarding the educational priorities that you hold for children on the autism spectrum who are of secondary school age (11-16). This process should take about 30 minutes to complete. When I have gathered opinions from a broad range of stakeholders, I will be writing a report that will help to inform the development of future educational practices, so that individuals on the autism spectrum and other important stakeholders can express their views on this important debate, and that tensions between stakeholder groups can be addressed. The report will be made available on my University of Birmingham research student profile page: http://www.birmingham.ac.uk/schools/education/courses/postgraduate-research/profiles/damian-milton.aspx. This study is designed to be simple to complete and there are instructions throughout in order to support you in responding to the questions set out on this site. If you are stuck at any point then click the help button which you should see in the top right hand corner and guidance here should assist you There are five main stages to the survey. If you need to leave the survey at any point then simply make sure that you have completed that section of the survey and pressed the next button in the bottom right hand corner, upon re-entry you will return to the last place you saved data from. For whatever reason, you can choose to remove both you and your data from the study at any time before January 1st 2015. The data for each participant will be given a code and the list of which will be kept separately from the main data and its analysis. Upon withdrawal from the study, both the code and the data collected will be removed and not utilised for any research purposes. All information gathered will be treated with the strictest confidence and will only be shared with my doctoral supervisors at the University of Birmingham: Dr. Kerstin Wittemeyer and Dr. Glenys Jones All data will be anonymised, unless specifically asked not to be so by you – i.e. if you wish to be quoted by name. 330 This project has been self-funded by the researcher, who is a PhD student at the University of Birmingham, and has been reviewed by the University of Birmingham Research Ethics Committee. The reference number for this study is ERN 13-0875. If you have any queries please email Before continuing, please read the following statements: I have had the research satisfactorily explained to me in written form by the researcher. I understand that the research will involve the sorting and ranking of statements regarding educational priorities for children on the autism spectrum of secondary school age. I understand that I may withdraw from this study at any time without having to give an explanation. I understand that all information about me will be treated in strict confidence and that I will not be named in any written work arising from this study, unless I specifically ask for this to be the case. I understand that you will be discussing the progress of your research with Dr. Kerstin Wittemeyer and Dr. Glenys Jones , your supervisors at the University of Birmingham. If you consent to participate in this study and would like to continue, please press next. 331 Appendix A5: Statement list (or ‘Q-set’) The list below lists the statements used in the Q-set and the random numbers that they were assigned: 1. ...reducing inappropriate and disruptive behaviours before they become established. 2. ...building motivation and tools for successful social interaction with others. 3. ...training learners to take up roles in society. 4. ...taking account of differing learning styles. 5. ...reducing the bullying of people on the autism spectrum by others. 6. ...helping pupils to take the perspective of others. 7. ...radical change in society. 8. ...addressing the core deficits of learners. 9. ...celebrating learners and not trying to ‘normalise’ them. 10. ...developing social skills. 11. ...the development of functional communication. 12. ...promoting independence. 13. ...teaching traditions and heritage. 14. ...examining the causes and consequences of behaviour. 15. ...employing calm and patient staff members. 16. ...supporting ‘transitions’. 17. ...being learner-led. 18. ...helping people on the autism spectrum become indistinguishable from their peers. 19. ...helping pupils refer to others and share emotions. 20. ...every moment being seen as an opportunity for reinforcing learning, primarily through the use of rewards. 21. ...the building of secure and trusting relationships. 22. ...good communications between staff, pupils, and parents. 23. ...giving learners personal space, and/or quiet spaces to retreat to. 24. ...the clarity of instructions given to learners. 25. ...teaching the three R’s: reading, writing and arithmetic. 26. ...to not accept values and morals, but to examine them in relation to present issues. 27. ...pupils decide how to spend their time. 28. ...helping pupils to integrate sensory information. 29. ...equality of status between staff and pupils. 30. ...the provision of augmented communication devices. 31. ...goals being dictated by the interests of the learner. 32. ...long-range goals and well-established standards. 33. ...utilising the interests of learners. 34. ...smaller class sizes. 35. ...a tailored curriculum to meet individual need. 332 36. ...providing structure, order and discipline. 37. ...empowering learners to learn how to think for themselves and make decisions. 38. ...producing responsible individuals able to play a full part in society. 39. ...empowering students to be active and critical in their learning. 40. ...learning being controlled, directed or guided by teachers. 41. ...being informed by evidence-based practice. 42. ...a curriculum based upon developmental milestones. Table A5.1: A priori categories of statements by randomly assigned number A priori category Ideological Classical Humanist 13 25 32 40 Liberal Humanist 3 12 36 38 Progressive 9 26 31 37 Radical 7 27 29 39 Practical Behaviourist 1 14 18 20 Functionalist 8 10 11 42 RDI 2 6 19 28 Interactionist 4 17 21 33 Other Building relationships 15 22 24 30 Enabling environments 5 16 23 34 Evidence-based practice 41 A tailored curriculum to meet individual need 35 333 Appendix A6: Written notes of participants from Q-sort pilot study 1 The following transcripts were taken from the notes made by participants during the initial Q-sort pilot study. The numbers relate to the statement (or grouping of statements) being commented upon (see Appendix A4: Statement list), with the number in brackets referring to where they had placed the statement on the Q-sort score sheet (see Appendix A1: Q-sort score sheet). Participant P1: In relation to item...: 18 – “Life denying, immoral.” 18 and 8 (-4) – “How dispiriting to have an education focus on what you can’t do!” 42, 40, 20, 10 (-3) – “Things that are issues/priorities for NTs – not necessarily relevant/salient to people on the autism spectrum.” 41 (0) – “Important to take account of research, but it can be too restrictive to let it totally guide education.” 12 (0) – “Independence is unreal.” 25 (0) – “3 Rs may or may not be important – relevance will be different for different people and different times. There is too much emphasis on forcing children to read too early!” 7 (+3) – “If we really did educate everyone in personalised ways, empowering them and encouraging critical thinking – we might stand a much better chance of radical (positive) change in society.” 35 and 39 (+4) – “I think these are fundamental for all learners / people.” General comments: “Not everything can or should be taught in secondary school. Some skills may be more appropriately developed or taught (self-taught / worked on) later, post-school when the time is right for the person concerned. When there is a meaningful reason to learn the skill.” “Teaching children things that have no meaning or interest for them is a very strange thing to do – it favours the success of conformist, unquestioning people, and is probably detrimental to society.” Participant P2: In relation to statements agreed with: 334 “Bullied children have many emotional and behavioural problems that make their development difficult. Good communication between staff, children with ASD, typically developing children and parents is needed to detect their special needs.” “Instructions should be clear enough to allow the children with ASD to follow the rules. Children should be motivated to do their best in classrooms and each child has a different learning style and this must be taken into account to encourage their learning. A quiet place to retreat is important if a child needs it.” In relation to statements disagreed with: “Children with autism should be respected by their peers, not indistinguishable. To see their autism condition is not bad, if their peers know what their autism condition is. A different status is needed between staff and pupils, because children with ASD are also expected to follow the rules. Children will choose what to do in free time, but not always. Values and morals should be accepted, and goals should be dictated by the needs of the learner, not their interests, although interests should be taken into account.” Participant P3: In relation to items: 5 (+4) – “If children are bullied they cannot learn. Feeling safe and respected should be the utmost priority.” 35 (+4) – “It is a general statement about the importance of differentiation. I couldn’t agree with it more.” 22, 33, 23 and 21 (+3) – “Making pupils happy and offering them an enjoyable environment to learn in is very important. Feeling valued, having a quiet place to retreat, and trust that all staff are conducive to that. Communication between school, parents, pupils is also important to make sure the pupils are happy.” 8 (-4) – “I don’t like the word deficits.” 40 (-4) – “Although teachers should be in control of the class, i.e. know what they are doing and why, they shouldn’t control the children. I should be based more on overall knowledge of the goals children are working towards.” 18 (-3) – “I like people to be distinguishable from each other.” 1 (-3) – “Whose disrupted by their behaviour? The teachers? Is it a problem for the child or the teacher?” 3 (-3) – “Such a cliché. I hate clichés. We should encourage pupils to create new roles, not to get the existing ones.” Participant P4: 335 In relation to items: 18 (-4) – “I cannot see the value in not recognising individual differences.” 42 (-4) – “Too much importance is currently placed on progression, guidance, and where children ‘should be at’, leading to horrible pressure on teachers to teach a curriculum based on ticking off levels, regardless of whether it is relevant or of interest to the learner.” 37 (+4) – “I have seen in teaching too much control leading to de-motivated and prompt-dependent individuals.” 11 (+4) – “These are vital life skills to be able to communicate hurt, hunger, and wants. One cannot contribute to any decision-making otherwise.” Participant P5: In relation to items: 27 (-4) – “Somebody external needs to decide on the curriculum and implement it.” 7 (-4) – “This is not an educational issue, but a socio-political one.” 33 (+4) – “This is a requirement of all effective education, not just ASD.” 24 (+4) – “This is particularly relevant to this student group.” (clarity of instructions) Paired participants P6: no written responses recorded within the time period. Individual session – participant P7: In relation to items: 41 (-4) – “I don’t like ‘evidence-based’ practice as a term, because whose interpretation of evidence is important? It’s a term that can be used to include or exclude if the voice of disenfranchised groups are abused.” 28 (+4) – “This has to be led by the individual, who should be encouraged to identify good working environments for themselves, e.g. if they need to sit nearer a window or further from a source of noise, they can learn to identify this preference and need.” 14 (+3) – “For me this is determined by individuals and may incorporate memory or sensory issues. These two underpin many choices made by individuals in terms of them engaging in activities in the first place.” 336 Appendix A7: Follow-up interview questions The following questions were given to those participants who agreed to take part in the follow-up interviews. 1. How would you describe autism in general, for example, as a disability or difference? 2. What do you consider to be the most essential educational priorities for children on the autism spectrum, and why? 3. What would you say has influenced your view concerning educational priorities for children on the autism spectrum, and why? 4. How do you think your educational priorities can be implemented in practice? 5. Is there anything else that you would like to add? 337 Appendix A8: Recruitment letter The following was used as recruitment information for this study: My name is Damian Milton, and I am contacting you to invite you to take part in research being conducted for my PhD thesis within the Autism Centre of Education and Research at the University of Birmingham, under the supervision of Dr Kerstin Wittemeyer and Dr Glenys Jones The aim of this study is to look at how various stakeholders in the field of autism view educational priorities for people on the autism spectrum of secondary school age. If you are an adult on the autism spectrum, a parent of someone on the autism spectrum of secondary school age (11-16), or a practitioner/academic working in the field of autism, then you would be eligible for this study. Participation would involve an online task, sorting into a ranked order a number of written statements regarding educational priorities for children of secondary school age who are on the autism spectrum. Involvement in the study requires about 30 minutes of your time. All information will be confidentially held. If you would like to take part in the study, please follow this link: http://milton.poetq.com/AutismQ/ Thank you for your time and consideration. Regards, Damian Milton 338 Appendix A9: PoetQ Qualitative questions The following open-ended questions were asked of participants as part of the PoetQ activity: Why did you rank the following statements as highest priority? Why did you rank the following statements as lowest priority? Do you have any other comments that you would like to make regarding this exercise? 339 Appendix A10: Sample Q-sort distribution In figure A9.1 below, a sample Q-sort distribution is given, utilising the numbers randomly assigned to Q-sort statements. Figure A10.1: Sample Q-sort distribution 41 1 11 26 29 12 33 14 4 8 36 6 25 31 37 15 9 28 18 42 7 22 5 2 23 20 40 3 27 16 21 17 30 13 32 39 24 10 19 34 35 38 340 Appendix A11: Z-score correlations for factor 1 In Appendix A10 through to A17, full listings are given for the Z-score correlations for the eight extracted factors from this study. Table A11.1: Z scores for factor 1 Rank Statement No. Z-score 1 ...a tailored curriculum to meet individual need. 35 1.672 2 ...the development of functional communication. 11 1.549 3 ...being informed by evidence-based practice. 41 1.441 4 ...reducing inappropriate and disruptive behaviours... 1 1.373 5 ...promoting independence. 12 1.318 6 ...producing responsible individuals able to play a full part in society. 38 1.077 7 ...empowering learners to learn how to think for themselves. 37 1.067 8 ...developing social skills. 10 0.941 9 ...building motivation and tools for successful social interactions... 2 0.886 10 ...good communications between staff, pupils, and parents. 22 0.76 11 ...addressing the core deficits of learners. 8 0.742 12 ...the building of secure and trusting relationships. 21 0.708 13 ...utilising the interests of learners. 33 0.614 14 ...examining the causes and consequences of behaviour. 14 0.582 15 ...long-range goals and well-established standards. 32 0.474 16 ...reducing the bullying of people on the autism spectrum by others. 5 0.422 17 ...taking account of differing learning styles. 4 0.38 18 ...employing calm and patient staff members. 15 0.377 19 ...training learners to take up roles in society. 3 0.315 20 ...empowering students to be active and critical in their learning. 39 0.118 21 ...helping pupils to take the perspective of others. 6 0.078 22 ...supporting transitions. 16 0.06 23 ...the clarity of instructions given to learners. 24 0.028 24 ...smaller class sizes. 34 -0.02 25 ...teaching the three R’s: reading, writing and arithmetic. 25 -0.133 26 ...helping pupils refer to others and share emotions. 19 -0.151 27 ...a curriculum based upon developmental milestones. 42 -0.229 28 ...the provision of augmented communication devices. 30 -0.343 29 ...giving learners personal space, and/or quiet spaces to retreat to. 23 -0.361 30 ...goals being dictated by the interests of the learner. 31 -0.412 31 ...learning being controlled, directed or guided by teachers. 40 -0.565 32 ...helping pupils to integrate sensory information. 28 -0.837 33 ...celebrating learners and not trying to ‘normalise’ them. 9 -0.841 34 ...providing structure, order and discipline. 36 -0.903 35 ...every moment being seen as an opportunity for reinforcing... 20 -0.921 36 ...to not accept values and morals, but to examine them... 26 -1.025 37 ...being learner-led. 17 -1.23 38 ...radical change in society. 7 -1.444 39 ...equality of status between staff and pupils. 29 -1.679 40 ...teaching traditions and heritage. 13 -1.836 41 ...helping people on the autism spectrum become indistinguishable... 18 -1.909 341 42 ...pupils decide how to spend their time. 27 -2.143 342 Appendix A12: Z-score correlations for factor 2 Table A12.1: Z scores for factor 2 Rank Statement No. Z-score 1 ...celebrating learners and not trying to ’normalise’ them. 9 2.089 2 ...radical change in society. 7 1.54 3 ...empowering learners to learn how to think for themselves. 37 1.314 4 ...a tailored curriculum to meet individual need. 35 1.305 5 ...reducing the bullying of people on the autism spectrum by others. 5 1.18 6 ...empowering students to be active and critical in their learning. 39 1.107 7 ...giving learners personal space, and/or quiet spaces to retreat to. 23 1.106 8 ...utilising the interests of learners. 33 1.066 9 ...taking account of differing learning styles. 4 0.954 10 ...equality of status between staff and pupils. 29 0.856 11 ...the building of secure and trusting relationships. 21 0.774 12 ...employing calm and patient staff members. 15 0.74 13 ...good communications between staff, pupils, and parents. 22 0.686 14 ...the clarity of instructions given to learners. 24 0.589 15 ...being learner-led. 17 0.533 16 ...goals being dictated by the interests of the learner. 31 0.346 17 ...promoting independence. 12 0.249 18 ...to not accept values and morals, but to examine them in... 26 0.225 19 ...the development of functional communication. 11 0.201 20 ...the provision of augmented communication devices. 30 0.189 21 ...being informed by evidence-based practice. 41 0.152 22 ...helping pupils to integrate sensory information. 28 0.116 23 ...smaller class sizes. 34 0.077 24 ...pupils decide how to spend their time. 27 0.052 25 ...supporting transitions. 16 0.045 26 ...producing responsible individuals able to play a full part in society. 38 -0.29 27 ...examining the causes and consequences of behaviour. 14 -0.503 28 ...building motivation and tools for successful social interaction. 2 -0.519 29 ...long-range goals and well-established standards. 32 -0.641 30 ...teaching the three R’s: reading, writing and arithmetic 25 -0.699 31 ...helping pupils refer to others and share emotions. 19 -0.71 32 ...helping pupils to take the perspective of others. 6 -0.747 33 ...developing social skills. 10 -0.844 34 ...training learners to take up roles in society. 3 -1.039 35 ...reducing inappropriate and disruptive behaviours before... 1 -1.126 36 ...a curriculum based upon developmental milestones. 42 -1.131 37 ...addressing the core deficits of learners. 8 -1.235 38 ...teaching traditions and heritage. 13 -1.317 39 ...providing structure, order and discipline. 36 -1.376 40 ...learning being controlled, directed or guided by teachers. 40 -1.521 41 ...every moment being seen as an opportunity for reinforcing... 20 -1.756 42 ...helping people on the autism spectrum become indistinguishable... 18 -2.039 343 Appendix A13: Z-score correlations for factor 3 Table A13.1: Z scores for factor 3 Rank Statement No. Z-score 1 ...addressing the core deficits of learners. 8 1.868 2 ...examining the causes and consequences of behaviour. 14 1.868 3 ...reducing inappropriate and disruptive behaviours before... 1 1.401 4 ...celebrating learners and not trying to ‘normalise’ them. 9 1.401 5 ...employing calm and patient staff members. 15 1.401 6 ...utilising the interests of learners. 33 1.401 7 ...radical change in society. 7 0.934 8 ...reducing the bullying of people on the autism spectrum by others. 5 0.934 9 ...supporting transitions. 16 0.934 10 ...giving learners personal space, and/or quiet spaces to retreat to. 23 0.934 11 ...smaller class sizes. 34 0.934 12 ...the building of secure and trusting relationships. 21 0.467 13 ...good communications between staff, pupils, and parents. 22 0.467 14 ...the clarity of instructions given to learners. 24 0.467 15 ...helping pupils to integrate sensory information. 28 0.467 16 ...the provision of augmented communication devices. 30 0.467 17 ...being informed by evidence-based practice. 41 0.467 18 ...promoting independence. 12 0 19 ...developing social skills. 10 0 20 ...taking account of differing learning styles. 4 0 21 ...goals being dictated by the interests of the learner. 31 0 22 ...a tailored curriculum to meet individual need. 35 0 23 ...providing structure, order and discipline. 36 0 24 ...empowering learners to learn how to think for themselves. 37 0 25 ...being learner-led. 17 0 26 ...training learners to take up roles in society. 3 -0.467 27 ...equality of status between staff and pupils. 29 -0.467 28 ...helping pupils to take the perspective of others. 6 -0.467 29 ...helping pupils refer to others and share emotions. 19 -0.467 30 ...building motivation and tools for successful social interaction. 2 -0.467 31 ...teaching the three R’s: reading, writing and arithmetic. 25 -0.467 32 ...to not accept values and morals, but to examine them in... 26 -0.934 33 ...the development of functional communication. 11 -0.934 34 ...empowering students to be active and critical in their learning. 39 -0.934 35 ...helping people on the autism spectrum become indistinguishable... 18 -0.934 36 ...a curriculum based upon developmental milestones. 42 -0.934 37 ...producing responsible individuals able to play a full part in society. 38 -1.401 38 ...learning being controlled, directed or guided by teachers. 40 -1.401 39 ...teaching traditions and heritage. 13 -1.401 40 ...pupils decide how to spend their time. 27 -1.401 41 ...long-range goals and well-established standards. 32 -1.868 42 ...every moment being seen as an opportunity for reinforcing... 20 -1.868 344 Appendix A14: Z-score correlations for factor 4 Table A14.1: Z scores for factor 4 Rank Statement No. Z-score 1 ...the building of secure and trusting relationships. 21 1.997 2 ...promoting independence. 12 1.687 3 ...developing social skills. 10 1.435 4 ...providing structure, order and discipline. 36 1.32 5 ...empowering learners to learn how to think for themselves. 37 1.32 6 ...teaching the three R’s: reading, writing and arithmetic 25 1.182 7 ...good communications between staff, pupils, and parents. 22 1.125 8 ...celebrating learners and not trying to ‘normalise’ them. 9 1.068 9 ...employing calm and patient staff members. 15 0.986 10 ...producing responsible individuals able to play a full part in society. 38 0.929 11 ...reducing the bullying of people on the autism spectrum by others. 5 0.872 12 ...the clarity of instructions given to learners. 24 0.815 13 ...helping pupils refer to others and share emotions. 19 0.62 14 ...reducing inappropriate and disruptive behaviours before... 1 0.562 15 ...empowering students to be active and critical in their learning. 39 0.562 16 ...building motivation and tools for successful social interaction. 2 0.505 17 ...to not accept values and morals, but to examine them in... 26 0.448 18 ...helping pupils to take the perspective of others. 6 0.196 19 ...helping pupils to integrate sensory information. 28 0 20 ...long-range goals and well-established standards. 32 0 21 ...taking account of differing learning styles. 4 0 22 ...the development of functional communication. 11 0 23 ...training learners to take up roles in society. 3 -0.138 24 ...examining the causes and consequences of behaviour. 14 -0.253 25 ...supporting transitions. 16 -0.31 26 ...addressing the core deficits of learners. 8 -0.31 27 ...utilising the interests of learners. 33 -0.367 28 ...helping people on the autism spectrum become indistinguishable... 18 -0.391 29 ...giving learners personal space, and/or quiet spaces to retreat to. 23 -0.505 30 ...the provision of augmented communication devices. 30 -0.758 31 ...teaching traditions and heritage. 13 -0.872 32 ...equality of status between staff and pupils. 29 -0.872 33 ...being informed by evidence-based practice. 41 -0.986 34 ...a tailored curriculum to meet individual need. 35 -1.068 35 ...a curriculum based upon developmental milestones. 42 -1.068 36 ...learning being controlled, directed or guided by teachers. 40 -1.125 37 ...being learner-led. 17 -1.182 38 ...goals being dictated by the interests of the learner. 31 -1.182 39 ...radical change in society. 7 -1.435 40 ...every moment being seen as an opportunity for reinforcing... 20 -1.435 41 ...smaller class sizes. 34 -1.63 42 ...pupils decide how to spend their time. 27 -1.744 345 Appendix A15: Z-score correlations for factor 5 Table A15.1: Z scores for factor 5 Rank Statement No. Z-score 1 ...celebrating learners and not trying to ‘normalise’ them. 9 2.164 2 ...reducing the bullying of people on the autism spectrum by others. 5 1.823 3 ...every moment being seen as an opportunity for reinforcing... 20 1.765 4 ...giving learners personal space, and/or quiet spaces to retreat to. 23 1.623 5 ...a curriculum based upon developmental milestones. 42 1.282 6 ...employing calm and patient staff members. 15 1.082 7 ...supporting transitions. 16 1.024 8 ...helping pupils to integrate sensory information. 28 0.941 9 ...teaching the three R’s: reading, writing and arithmetic. 25 0.824 10 ...the building of secure and trusting relationships. 21 0.683 11 ...empowering learners to learn how to think for themselves. 37 0.683 12 ...the development of functional communication. 11 0.599 13 ...empowering students to be active and critical in their learning. 39 0.541 14 ...building motivation and tools for successful social interaction. 2 0.541 15 ...taking account of differing learning styles. 4 0.4 16 ...promoting independence. 12 0.4 17 ...utilising the interests of learners. 33 0.341 18 ...a tailored curriculum to meet individual need. 35 0.341 19 ...developing social skills. 10 0.283 20 ...good communications between staff, pupils, and parents. 22 0 21 ...the clarity of instructions given to learners. 24 0 22 ...being learner-led. 17 -0.142 23 ...long-range goals and well-established standards. 32 -0.258 24 ...smaller class sizes. 34 -0.341 25 ...providing structure, order and discipline. 36 -0.4 26 ...producing responsible individuals able to play a full part in society. 38 -0.4 27 ...goals being dictated by the interests of the learner. 31 -0.483 28 ...helping pupils to take the perspective of others. 6 -0.483 29 ...training learners to take up roles in society. 3 -0.541 30 ...to not accept values and morals, but to examine them in... 26 -0.541 31 ...examining the causes and consequences of behaviour. 14 -0.541 32 ...reducing inappropriate and disruptive behaviours before... 1 -0.599 33 ...the provision of augmented communication devices. 30 -0.624 34 ...teaching traditions and heritage. 13 -0.882 35 ...being informed by evidence-based practice. 41 -1.082 36 ...helping people on the autism spectrum become indistinguishable... 18 -1.141 37 ...helping pupils refer to others and share emotions. 19 -1.165 38 ...radical change in society. 7 -1.224 39 ...addressing the core deficits of learners. 8 -1.482 40 ...equality of status between staff and pupils. 29 -1.623 41 ...pupils decide how to spend their time. 27 -1.623 42 ...learning being controlled, directed or guided by teachers. 40 -1.765 346 Appendix A16: Z-score correlations for factor 6 Table A16.1: Z scores for factor 6 Rank Statement No. Z-score 1 ...training learners to take up roles in society. 3 1.868 2 ...taking account of differing learning styles. 4 1.868 3 ...celebrating learners and not trying to ‘normalise’ them. 9 1.401 4 ...teaching the three R’s: reading, writing and arithmetic 25 1.401 5 ...a tailored curriculum to meet individual need. 35 1.401 6 ...empowering learners to learn how to think for themselves. 37 1.401 7 ...the development of functional communication. 11 0.934 8 ...the building of secure and trusting relationships. 21 0.934 9 ...good communications between staff, pupils, and parents. 22 0.934 10 ...long-range goals and well-established standards. 32 0.934 11 ...empowering students to be active and critical in their learning. 39 0.934 12 ...helping pupils refer to others and share emotions. 19 0.467 13 ...helping pupils to integrate sensory information. 28 0.467 14 ...the provision of augmented communication devices. 30 0.467 15 ...utilising the interests of learners. 33 0.467 16 ...smaller class sizes. 34 0.467 17 ...reducing the bullying of people on the autism spectrum by others. 5 0.467 18 ...promoting independence. 12 0 19 ...giving learners personal space, and/or quiet spaces to retreat to. 23 0 20 ...the clarity of instructions given to learners. 24 0 21 ...building motivation and tools for successful social interaction. 2 0 22 ...goals being dictated by the interests of the learner. 31 0 23 ...developing social skills. 10 0 24 ...employing calm and patient staff members. 15 0 25 ...helping pupils to take the perspective of others. 6 0 26 ...reducing inappropriate and disruptive behaviours before... 1 -0.467 27 ...supporting transitions. 16 -0.467 28 ...being learner-led. 17 -0.467 29 ...providing structure, order and discipline. 36 -0.467 30 ...producing responsible individuals able to play a full part in society. 38 -0.467 31 ...learning being controlled, directed or guided by teachers. 40 -0.467 32 ...pupils decide how to spend their time. 27 -0.934 33 ...equality of status between staff and pupils. 29 -0.934 34 ...examining the causes and consequences of behaviour. 14 -0.934 35 ...to not accept values and morals, but to examine them in... 26 -0.934 36 ...being informed by evidence-based practice. 41 -0.934 37 ...addressing the core deficits of learners. 8 -1.401 38 ...helping people on the autism spectrum become indistinguishable... 18 -1.401 39 ...radical change in society. 7 -1.401 40 ...teaching traditions and heritage. 13 -1.401 41 ...every moment being seen as an opportunity for reinforcing... 20 -1.868 42 ...a curriculum based upon developmental milestones. 42 -1.868 347 Appendix A17: Z-score correlations for factor 7 Table A17.1: Z scores for factor 7 Rank Statement No. Z-score 1 ...developing social skills. 10 1.88 2 ...taking account of differing learning styles. 4 1.721 3 ...building motivation and tools for successful social interaction. 2 1.639 4 ...promoting independence. 12 1.446 5 ...utilising the interests of learners. 33 1.398 6 ...examining the causes and consequences of behaviour. 14 1.282 7 ...being learner-led. 17 0.997 8 ...goals being dictated by the interests of the learner. 31 0.962 9 ...a tailored curriculum to meet individual need. 35 0.92 10 ...supporting transitions. 16 0.883 11 ...the building of secure and trusting relationships. 21 0.801 12 ...giving learners personal space, and/or quiet spaces to retreat to. 23 0.756 13 ...celebrating learners and not trying to ‘normalise’ them. 9 0.637 14 ...helping pupils refer to others and share emotions. 19 0.56 15 ...reducing the bullying of people on the autism spectrum by others. 5 0.523 16 ...helping pupils to take the perspective of others. 6 0.196 17 ...good communications between staff, pupils, and parents. 22 0.161 18 ...empowering learners to learn how to think for themselves. 37 0.161 19 ...smaller class sizes. 34 -0.039 20 ...employing calm and patient staff members. 15 -0.077 21 ...empowering students to be active and critical in their learning. 39 -0.082 22 ...radical change in society. 7 -0.109 23 ...the development of functional communication. 11 -0.157 24 ...a curriculum based upon developmental milestones. 42 -0.166 25 ...helping pupils to integrate sensory information. 28 -0.201 26 ...reducing inappropriate and disruptive behaviours before... 1 -0.277 27 ...the clarity of instructions given to learners. 24 -0.285 28 ...the provision of augmented communication devices. 30 -0.397 29 ...producing responsible individuals able to play a full part in society. 38 -0.399 30 ...addressing the core deficits of learners. 8 -0.602 31 ...being informed by evidence-based practice. 41 -0.682 32 ...pupils decide how to spend their time. 27 -0.759 33 ...providing structure, order and discipline. 36 -0.763 34 ...helping people on the autism spectrum become indistinguishable... 18 -0.881 35 ...to not accept values and morals, but to examine them in... 26 -0.918 36 ...training learners to take up roles in society. 3 -0.922 37 ...learning being controlled, directed or guided by teachers. 40 -0.922 38 ...long-range goals and well-established standards. 32 -1.16 39 ...every moment being seen as an opportunity for reinforcing... 20 -1.319 40 ...equality of status between staff and pupils. 29 -1.721 41 ...teaching traditions and heritage. 13 -2.041 42 ...teaching the three R’s: reading, writing and arithmetic. 25 -2.043 348 Appendix A18: Z-score correlations for factor 8 Table A18.1: Z scores for factor 8 Rank Statement No. Z-score 1 ...taking account of differing learning styles. 4 1.777 2 ...reducing the bullying of people on the autism spectrum by others. 5 1.777 3 ...the clarity of instructions given to learners. 24 1.654 4 ...giving learners personal space, and/or quiet spaces to retreat to. 23 1.562 5 ...a tailored curriculum to meet individual need. 35 1.256 6 ...providing structure, order and discipline. 36 1.256 7 ...utilising the interests of learners. 33 1.133 8 ...radical change in society. 7 1.011 9 ...developing social skills. 10 0.827 10 ...teaching the three R’s: reading, writing and arithmetic. 25 0.827 11 ...helping pupils to take the perspective of others. 6 0.827 12 ...smaller class sizes. 34 0.643 13 ...examining the causes and consequences of behaviour. 14 0.521 14 ...empowering learners to learn how to think for themselves. 37 0.521 15 ...building motivation and tools for successful social interaction. 2 0.429 16 ...addressing the core deficits of learners. 8 0.306 17 ...employing calm and patient staff members. 15 0.306 18 ...the development of functional communication. 11 0.306 19 ...reducing inappropriate and disruptive behaviours before... 1 0.123 20 ...helping pupils to integrate sensory information. 28 0.123 21 ...empowering students to be active and critical in their learning. 39 0.092 22 ...good communications between staff, pupils, and parents. 22 0 23 ...the building of secure and trusting relationships. 21 -0.184 24 ...to not accept values and morals, but to examine them in... 26 -0.214 25 ...the provision of augmented communication devices. 30 -0.214 26 ...helping pupils refer to others and share emotions. 19 -0.214 27 ...a curriculum based upon developmental milestones. 42 -0.429 28 ...every moment being seen as an opportunity for reinforcing... 20 -0.521 29 ...supporting transitions. 16 -0.613 30 ...teaching traditions and heritage. 13 -0.613 31 ...producing responsible individuals able to play a full part in society. 38 -0.735 32 ...training learners to take up roles in society. 3 -0.735 33 ...promoting independence. 12 -0.858 34 ...equality of status between staff and pupils. 29 -0.919 35 ...learning being controlled, directed or guided by teachers. 40 -0.919 36 ...long-range goals and well-established standards. 32 -0.95 37 ...being learner-led. 17 -1.042 38 ...goals being dictated by the interests of the learner. 31 -1.256 39 ...being informed by evidence-based practice. 41 -1.348 40 ...pupils decide how to spend their time. 27 -1.562 41 ...celebrating learners and not trying to ‘normalise’ them. 9 -1.869 42 ...helping people on the autism spectrum become indistinguishable... 18 -2.083 349 Appendix A19: Statement scores – all participants The following table shows the rankings that each statement acquired from the participants in total: the left hand column giving the randomly assigned number of the statement being ranked, and the right hand column showing the mean average ranking for each statement. Table A.19.1: Ranking of statements given by participants Statement No. -4 -3 -2 -1 0 1 2 3 4 Avg. 1 - 7 7 11 9 8 9 7 2 0.15 2 - 1 4 9 14 11 10 6 5 0.83 3 1 8 15 15 7 3 5 2 4 -0.63 4 - - 1 6 12 6 15 12 8 1.6 5 - - 1 3 11 16 10 9 9 1.57 6 1 2 6 20 17 10 4 - - -0.4 7 4 12 11 11 2 4 6 4 6 -0.55 8 4 12 9 7 13 6 5 2 2 -0.77 9 1 3 3 4 4 9 6 13 17 1.75 10 - 5 6 2 11 12 12 11 1 0.73 11 - - 2 10 18 9 7 8 5 0.88 12 1 1 - 2 16 9 10 16 6 1.53 13 12 19 19 7 2 - - - - -2.48 14 1 2 2 14 14 12 9 4 2 0.37 15 - - 1 8 14 13 10 12 2 1.12 16 - - 4 5 23 12 10 6 - 0.62 17 - 7 11 13 11 7 7 1 1 -0.47 18 32 13 11 2 1 - 1 - - -3.15 19 1 3 11 15 12 13 4 1 - -0.43 20 10 18 10 11 4 1 3 - 2 -1.83 21 - - 1 2 11 19 14 7 6 1.47 22 - - - 1 17 14 14 12 2 1.42 23 - - 2 4 13 16 10 13 2 1.25 24 - 1 1 3 28 11 13 1 2 0.67 25 7 14 6 10 7 6 4 6 - -1 26 - 9 17 17 7 5 2 3 1 -0.93 27 13 19 10 8 6 2 1 1 - -2.15 28 - 1 6 9 19 12 8 5 - 0.32 29 9 17 15 6 5 2 3 3 - -1.77 30 - 4 9 14 19 9 3 1 1 -0.37 31 2 8 7 7 14 13 3 4 2 -0.23 32 1 9 10 17 11 3 3 5 1 -0.88 33 - - 1 1 15 21 10 8 3 1.23 34 1 - 9 13 17 8 6 6 - 0.02 35 - 1 - 3 7 8 15 16 10 2 36 2 10 11 13 9 4 6 3 1 -0.73 37 - - - 2 8 18 12 14 7 1.83 38 - 3 14 15 11 5 4 7 3 -0.1 39 - 1 4 9 12 12 14 7 1 0.75 40 10 16 18 8 6 1 1 - - -2.15 41 1 2 9 10 17 6 7 4 3 0.1 350 42 6 12 12 13 6 5 4 1 - -1.35 Table A.18.2 indicates the average base ranking scores for each individual statement within the Q-set. Table A.19.2: Ranking list of statements and their a priori categories from highest rank to lowest Ranking Statement A priori category Average ranking score 1 35: A tailored curriculum to meet individual need. No category 2 2 37: Empowering learners to learn how to think for themselves. Progressive 1.83 3 9: Celebrating learners and not trying to ‘normalise them’. Progressive 1.75 4 4: Taking account of differing learning styles. Interactionist 1.6 5 5: Reducing the bullying of people on the autism spectrum by others. Enabling environments 1.57 6 12: Promoting independence. Liberal Humanist 1.53 7 21: The building of secure and trusting relationships. Interactionist 1.47 8 22: Good communications between staff, pupils, and parents. Building relationships 1.42 9 23: Giving learners personal space, and/or quiet spaces to retreat to. Enabling environments 1.25 10 33: Utilising the interests of learners. Interactionist 1.23 11 15: Employing calm and patient staff members. Building relationships 1.12 12 11: The development of functional communication. Functionalist 0.88 13 2: Building motivation and tools for successful social interaction. RDI 0.83 14 39: Empowering students to be active and critical in their learning. Radical 0.75 15 10: Developing social skills. Functionalist 0.73 16 24: The clarity of instructions given to learners. Building relationships 0.67 17 16: Supporting transitions. Enabling environments 0.62 18 14: Examining the causes and consequences of behaviour. Behaviourist 0.37 19 28: Helping pupils to integrate sensory information. RDI 0.32 20 1: Reducing inappropriate and disruptive behaviours. Behaviourist 0.15 21 41: Being informed by evidence-based practice. No category 0.1 22 34: Smaller class sizes. Enabling 0.02 351 environments 23 38: Producing responsible individuals able to play a full part in society. Liberal Humanist -0.1 24 31: Goals being dictated by the interests of the learner. Progressive -0.23 25 30: The provision of augmented communication devices. Building relationships -0.37 26 6: Helping pupils to take the perspective of others. RDI -0.4 27 19: Helping pupils refer to others and share emotions. RDI -0.43 28 17: Being learner-led. Interactionist -0.47 29 7: Radical change in society. Radical -0.55 30 3: Training learners to take up roles in society. Liberal Humanist -0.63 31 36: Providing structure, order and discipline. Liberal Humanist -0.73 32 8: Addressing the core deficits of learners. Functionalist -0.77 33 32: Long-range goals and well-established standards. Classical Humanist -0.88 34 26: To not accept values and morals, but to examine them. Progressive -0.93 35 25: Teaching the three R’s: reading, writing and arithmetic . Classical Humanist -1 36 42: A curriculum based upon developmental milestones. Functionalist -1.35 37 29: Equality of status between staff and pupils. Radical -1.77 38 20: Every moment being seen as an opportunity for reinforcing learning. Behaviourist -1.83 39 27: Pupils decide how to spend their time. Radical -2.15 40 40: Learning being controlled, directed or guided by teachers. Classical Humanist -2.15 41 13: Teaching traditions and heritage. Classical Humanist -2.48 42 18: Helping people on the autism spectrum become indistinguishable from their peers. Behaviourist -3.15 352 Appendix A20: Q-sort for participant P1 As a way of presenting my own positionality toward to the subject material of this thesis, I decided that at the outset of the study I would undertake the Q-sort activity myself in order to be able to analyse and compare my own educational ideology and priorities with those of the participants. Below is a full list of how I ranked the Q-set of statements: Ranked +4: The building of secure and trusting relationships Utilising the interests of learners Ranked +3: A tailored curriculum to meet individual need Taking account of differing learning styles Celebrating learners and not trying to ‘normalise’ them Empowering learners how to think for themselves and make decisions Ranked +2: Good communications between staff, pupils and parents Empowering students to be active and critical in their learning Goals being dictated by the interests of learner Smaller class sizes Reducing the bullying of people on the autism spectrum by others Ranked +1: Giving learners personal space and/or quiet spaces to retreat to The clarity of instructions given to learners To not accept values and morals, but to examine them in relation to present issues 353 Radical change in society Employing calm and patient staff members Being learner-led Ranked 0: Teaching the three R’s: reading, writing and arithmetic Pupils decide how to spend their time Helping students to integrate sensory information Being informed by evidence-based practice Promoting independence Equality of status between staff and pupils The provision of augmented communication devices Supporting transitions Ranked -1: Long-range goals and well-established standards The development of functional communication Helping pupils refer to others and share emotions Building motivation and tools for successful social interactions with others Providing structure, order and discipline Teaching traditions and heritage Ranked -2: Learning being controlled, directed and guided by teachers A curriculum based on developmental milestones Producing responsible individuals able to play a full part in society Training learners to take up roles in society 354 Helping pupils to take the perspective of others Ranked -3: Reducing inappropriate and disruptive behaviours before they become established Addressing the core deficits of learners Developing social skills Examining the causes and consequences of behaviour Ranked -4: Helping people on the autism spectrum become indistinguishable from their peers Every moment being seen as an opportunity for reinforcing learning 355 Appendix A21: Factor correlation scores by individual Q-sort Table A.20.1 shows the factor scores for each individual Q-sort. A score of 1 would mean a perfect correlation, whilst numbers lower than 0.5 show significant differences, and negative scores indicate an opposing pattern. Table A.21.1: Factor scores by individual Q-sort Q-sort F1 F2 F3 F4 F5 F6 F7 F8 1 0.0161 0.8024X 0.1066 -0.0007 0.12 0.4054 0.0516 0.0906 2 0.1756 0.5441 -0.1498 0.2255 0.1327 0.0825 0.4424 0.0835 3 0.7362X 0.0501 0.2314 0.1119 0.0199 0.3569 -0.0396 -0.119 4 0.4456 0.1714 0.2667 -0.0566 -0.0107 -0.0277 0.4397 0.4488 5 0.4507 0.4677 -0.1574 0.2817 0.4206 0.0767 0.1598 0.1504 6 0.5117 0.2358 0.085 0.4581 0.1297 0.1739 0.0722 0.3158 7 0.2781 0.4193 0.0831 0.3344 0.3455 -0.2765 0.3125 0.2889 8* 0.0926 0.7565X 0.1436 -0.1419 0.2011 -0.0093 0.1854 0.1115 9 0.1717 0.5729X 0.265 0.134 0.0923 0.0992 0.3473 0.2247 10 0.6111X 0.1673 0.025 0.2753 0.0346 0.4138 0.2878 0.0976 11* 0.1026 0.2973 0.6654X 0.1607 -0.0529 -0.01 0.2521 0.3867 12 0.4927 0.5018 0.2191 -0.0881 0.0784 0.1781 0.3206 -0.0802 13 0.7116X 0.2319 0.1456 0.0703 0.1348 0.166 0.2055 0.2397 14 0.4949 0.052 0.2779 -0.0287 0.4586 0.127 0.3437 0.0127 15 -0.051 0.3528 -0.0357 0.0365 0.6476X 0.0763 0.3124 0.1159 16 0.1933 0.3087 0.2272 0.3416 0.3705 -0.0144 0.5121 -0.1549 17 0.0172 0.7648X -0.108 -0.0213 -0.0228 0.2997 0.0122 0.0719 18 0.1811 0.4473 0.5571 0.24 0.3001 0.1629 0.1835 0.003 19 -0.0886 0.8051X 0.2495 0.0685 0.0577 0.0558 0.064 0.1836 20* 0.8298X -0.1689 0.0536 0.0658 0.1586 -0.1089 -0.022 0.255 21 0.7222X -0.063 0.0143 0.2877 -0.1134 -0.1014 0.1741 0.0534 22 0.3565 0.6454X 0.1082 0.2598 0.2772 0.1943 0.1293 0.09 23 0.2205 0.7345X -0.0282 0.0961 0.0183 -0.339 0.2196 0.0194 24 0.1205 0.5317 0.304 0.004 0.1647 -0.0741 0.2501 0.464 25 0.5018 0.3581 -0.0121 0.049 0.2996 0.2609 0.2283 -0.1057 26 0.018 0.432 0.2848 0.1361 0.1207 0.5064 0.1027 0.3524 27 0.4529 0.3011 -0.0446 0.2087 0.4307 0.2784 0.3259 0.1636 28 -0.0819 0.6191X 0.0988 0.0327 0.1623 0.1192 0.2901 0.1963 29 0.1992 0.4493 0.1652 0.2584 0.3405 0.0488 0.4203 0.1138 356 30 0.1825 0.2423 0.5196 -0.11 0.5166 0.2065 0.1865 -0.0367 31* 0.612X 0.1503 0 0.3943 0.0684 0.1091 0.1705 0.0384 32* 0.1508 0.158 0.1043 0.6793X 0.1118 0.0203 0.1193 -0.0529 33 0.425 -0.0885 0.0997 0.5948 0.134 0.1765 0.3091 0.2011 34 0.186 0.4391 -0.1353 0.1975 0.3165 -0.0762 0.0549 0.4485 35 0.0956 0.0415 0.204 0.0698 0.231 0.2025 0.0636 0.6987X 36 0.3985 0.0742 0.2358 0.533 0.3875 0.1751 -0.1006 0.2607 37 0.1245 0.5178 0.1282 0.3707 0.4142 0.3121 -0.165 0.1578 38 0.2025 0.0369 0.0302 0.068 0.2347 0.2547 0.7089X 0.1908 39 0.3083 0.3411 0.3772 0.2308 0.0631 -0.0395 0.6039 0.1178 40 0.1502 0.3874 0.0576 0.306 0.3765 0.3786 0.2286 0.2387 41 0.5301 0.2398 -0.2939 0.1482 0.1437 0.2562 0.469 0.0156 42 0.102 0.0792 0.0676 0.3243 0.7714X 0.0596 0.0091 0.1734 43 0.6438X 0.0946 -0.0822 -0.0074 0.1612 0.0635 0.3941 -0.1812 44 0.1518 0.7621X -0.0119 0.3905 0.0749 -0.102 -0.0306 -0.032 45 0.2995 0.1433 0.1908 0.0492 -0.0164 -0.0624 0.6576X 0.3195 46 0.4355 0.1155 0.2285 0.0687 0.16 0.5814 0.179 0.2964 47 -0.1953 0.8625X 0.0663 -0.0722 -0.0397 0.1897 0.0674 0.0047 48 0.1901 0.0569 0.3409 0.214 0.4862 0.0636 0.6009 -0.0046 49 0.1554 0.1606 -0.0232 0.1335 0.0005 0.1255 0.1169 0.7759X 50 0.6276X 0.1224 0.0086 0.433 -0.0382 0.2448 0.1094 0.0122 51 0.2857 0.105 -0.2571 0.2871 0.0854 0.431 0.2263 0.1617 52 0.1631 0.4122 0.0158 0.0317 0.0248 0.1687 0.7116X -0.0088 53 0.4833 0.4199 0.1288 0.0683 0.3355 0.098 0.3072 -0.0961 54 0.7669X -0.1303 0.0861 0.1868 0.0597 -0.1655 0.1007 0.3085 55 0.3963 0.3352 0.3417 0.3893 -0.0479 0.1953 0.3108 0.1821 56 0.6226 0.0851 0.5702 0.0124 0.2398 -0.0752 0.1348 0.2552 57 -0.0484 0.4452 0.1892 0.4018 0.116 0.5638 0.2296 -0.0349 58 0.2639 0.6375X 0.1212 -0.0233 0.1787 0.1399 0.1317 -0.3596 59 0.2086 -0.1069 -0.0963 0.7276X 0.1361 0.1771 0.0395 0.1592 60* 0.3529 0.344 -0.1266 0.2625 0.1522 0.6358X 0.0701 0.0382 %expl.var 15 17 5 7 7 6 9 6 Exemplars 9 11 1 2 2 1 3 2 *Indicates that these participants asked to take part in the further follow-up questions as part of the study. 357 Six participants asked to be included with follow-up questions to the initial study, all of which related to exemplifying Q-sorts (indicated by the * for those who completed the follow-up questions and an X next to their scores in the correlation matrix). 358 Appendix A22: Factor array by Q-sort distribution The following table shows the factor arrays for each of the eight factors, indicating how each of the statements would be ranked if depicted in an individual Q-sort distribution: Table A22.1: Factor array by Q-sort distribution No. Statement F1 F2 F3 F4 F5 F6 F7 F8 1 ...reducing inappropriate and disruptive behaviours before... 3 -2 3 1 -2 -1 -1 0 2 ...building motivation and tools for successful social interaction. 2 -1 -1 1 1 0 3 1 3 ...training learners to take up roles in society. 0 -2 -1 0 -1 4 -3 -2 4 ...taking account of differing learning styles. 1 2 0 0 1 4 4 4 5 ...reducing the bullying of people on the autism spectrum by others. 1 3 2 2 4 1 1 4 6 ...helping pupils to take the perspective of others. 0 -2 -1 0 -1 0 1 2 7 ...radical change in society. -3 4 2 -3 -3 -3 0 2 8 ...addressing the core deficits of learners. 2 -3 4 -1 -3 -3 -1 0 9 ...celebrating learners and not trying to ‘normalise’ them. -2 4 3 2 4 3 1 -4 10 ...developing social skills. 2 -2 0 3 0 0 4 2 11 ...the development of functional communication. 4 0 -2 0 1 2 0 0 12 ...promoting independence. 3 1 0 4 1 0 3 -2 13 ...teaching traditions and heritage. -3 -3 -3 -2 -2 -3 -4 -1 14 ...examining the causes and consequences of behaviour. 1 -1 4 0 -1 -2 3 1 15 ...employing calm and patient staff members. 0 1 3 2 3 0 0 0 16 ...supporting transitions. 0 0 2 -1 2 -1 2 -1 17 ...being learner-led. -3 1 0 -3 0 -1 2 -3 18 ...helping people on the autism spectrum become indistinguishable... -4 -4 -2 -1 -2 -3 -2 -4 19 ...helping pupils refer to others and share emotions. -1 -1 -1 1 -3 1 1 -1 20 ...every moment being seen as an opportunity for reinforcing... -2 -4 -4 -3 3 -4 -3 -1 21 ...the building of secure and trusting relationships. 1 2 1 4 2 2 2 0 22 ...good communications between staff, pupils, and parents. 2 1 1 2 0 2 0 0 23 ...giving learners personal space, and/or quiet spaces to retreat to. -1 2 2 -1 3 0 1 3 24 ...the clarity of instructions given to learners. 0 1 1 1 0 0 -1 3 25 ...teaching the three R’s: reading, writing and arithmetic. 0 -1 -1 3 2 3 -4 2 26 ...to not accept values and morals, but to examine them in... -2 0 -2 1 -1 -2 -2 -1 27 ...pupils decide how to spend their time. -4 0 -3 -4 -4 -2 -2 -3 28 ...helping pupils to integrate sensory information. -2 0 1 0 2 1 0 0 359 29 ...equality of status between staff and pupils. -3 2 -1 -2 -4 -2 -3 -2 30 ...the provision of augmented communication devices. -1 0 1 -1 -2 1 -1 -1 31 ...goals being dictated by the interests of the learner. -1 1 0 -3 -1 0 2 -3 32 ...long-range goals and well-established standards. 1 -1 -4 0 0 2 -3 -2 33 ...utilising the interests of learners. 1 2 3 -1 0 1 3 2 34 ...smaller class sizes. 0 0 2 -4 0 1 0 1 35 ...a tailored curriculum to meet individual need. 4 3 0 -2 0 3 2 3 36 ...providing structure, order and discipline. -2 -3 0 3 -1 -1 -2 3 37 ...empowering learners to learn how to think for themselves. 2 3 0 3 2 3 0 1 38 ...producing responsible individuals able to play a full part in society. 3 -1 -3 2 -1 -1 -1 -2 39 ...empowering students to be active and critical in their learning. 0 3 -2 1 1 2 0 0 40 ...learning being controlled, directed or guided by teachers. -1 -3 -3 -2 -4 -1 -3 -2 41 ...being informed by evidence-based practice. 3 0 1 -2 -2 -2 -1 -3 42 ...a curriculum based upon developmental milestones. -1 -2 -2 -2 3 -4 0 -1 360 Appendix A23: Transcripts of interview responses The following tables are structured to read from participants with the highest correlation with factor 1 and least correlation with factor 2, to the opposite. 1. How would you describe autism in general, for example, as a disability or difference? Participant Factor exemplified Answer P20 1 I am aware of the debate around this but I think I would say disability, given how hugely affected my son is at every single level of his functioning. However, I think it depends a great deal on where a child or adult sits on the spectrum as to whether it is a mild disability - and perhaps closer to just different - or whether it is an all-encompassing and pretty severely disabling condition. In my own family I have autism with SLD and autism with a high IQ. To me, nowadays, I would say the autism is less disabling to my son than are the Severe Learning Difficulties. Whereas my stepdaughter, shortly to study English Literature at a top university, I would not really call disabled any longer - though she remains autistic. So in summary, disability, but with these caveats. P31* 1 Autistic Spectrum Condition. This term identifies it a) as spectral and b) without setting a deficit model as the “norm” (e.g. disorder). Adhering to the social model of disability, it is indeed a disabling set of conditions, as society has not really learned how to deal with neurodiversity, difference being inherent in a neurodiverse world. The unconsidered language of deficit and convergence is problematic. For some on the spectrum the disability is not primarily the social model, as their medical condition is profoundly disabling. But I prefer ASC as an umbrella term, since we are lumping together some extraordinarily different people, to one which privileges a medical, pathologised discourse. P11 3 Recent research all points towards autism an overall neurobiological developmental dysfunction. Overall, the brain is wired up differently, which may or not have a disability as its outcome. Each person is different and 361 experiences a range of hyper and hypo sensitivities which interfere with sensory processing. P60 6 In general terms, I would describe autism as a difference and not a disability. But I think it is more complicated than that. Autism can be associated with difficulties in spoken communication, sensory issues and some motor difficulties, and these are areas that some people might need help or support with. However, most of us need help in some way or another, at different times of our lives. More significantly, the restrictions placed on autistic people can be highly disabling, and the difficulties I have referred to can be greatly exacerbated due to environmental and attitudinal barriers. Most importantly, I think that a society better adapted to include autistic people would benefit us all; of that I have no doubt. However, I find it very difficult to describe autism: perhaps it is a particular sensibility towards and perspective on the world. P32* 4 I think it is both a disability and a difference. The problem, as I see it, is that the autism spectrum covers a wide range of people. It includes people who are not capable of independent living as well as people who are socially regarded as highly successful like myself but nevertheless face some degree of difficulty in fitting in with the rest of society. Another issue is that disability is in many ways a social construct. The social difficulties I face are not as pronounced in cultures (such as the one I grew up with in Singapore) where social rules are explicit and everyone is expected to conform to them. Roles are ascribed rather than achieved (for example a person has a certain status and can expect people to act in a certain way towards him because he is the third uncle rather than youngest brother). It is far more difficult to operate in a social environment where one has to 'read' a shifting social landscape and adjust quickly to the environment. I think a good analogy would be how a blind person might operate. He or she cannot see the world, but can get around the house safely because he/she knows 362 where everything is in physical space. In the same way an autistic person is able to operate in the social environment if the key contours of this environment are fixed. P8* 2 I would describe autism as a distinctly different cognitive style to the PNT, including processing of sensory environments. While I do not regard autism as a disability, I do accept that in many cases it can be seriously disadvantageous being autistic – while, at other times, it can be an advantage. If not all autistic people are ‘disabled’ – which they are not – I do not see how autism in general can be regarded as a disability. 2. What do you consider to be the most essential educational priorities for children on the autism spectrum, and why? Participant Factor exemplified Answer P20 1 I think autistic children should have the same educational priority as any kid: to reach their full potential. Top priorities for me would be learning to communicate and learning to navigate the world happily and safely. Within that broad statement come loads of possible targets, depending on the child's starting point: e.g. basic reading, writing, counting etc. For a child with high-functioning autism, by which I mean with no IQ impairment, I would see them having the same educational priorities as an NT child, with some help in the social areas on top. P31* 1 Given all that I have said above, we need in my view to rethink education by reversing the polarity. Instead of starting with a 1-2 Year Old, let’s start with a 25 Year old and work backwards. 40 years of massive US investment has seen educational attainment from ASC people radically transformed. But employment over the same period hasn’t moved one jot. This is displacing the problem/challenge rather than solving it. So counter intuitively, the most essential education priority for autistic people is educating non-autistic decision-makers. The human capital locked away in keeping unemployed autistic people from eating 363 themselves to death through boredom over decades of containment, needs to be emancipated by a radical rethink of how society is constituted, what we mean by value and how meaning is generated in life. So a logo-therapeutic approach at core. Why invest heavily in children when as adults we let them fall of a cliff? It is sentimental and senseless. But the answer here is neither less investment nor eugenics; rather to educate autistic people to take their place in adult world where non-autistic people make the necessary adjustments to enable them to do so. P11 3 First priority is to pay attention to visual, auditory, proprioceptive and emotional distortions. P60 6 The most important priority is that autistic children should be given the same opportunities as any other child, and a bit of effort and imagination needs to be employed in order to make this happen. It is, after all, enshrined in international, European and national law that all children have this right. There are a lot of debates about educational priorities for children generally, but essentially, autistic children need to be given the chance to learn new skills, develop and extend their interests, gain confidence and self-belief in who they are as individuals. They need to be engaged and stimulated, just like any other child. However, I think there are problems with the current educational system and particularly school environments as far as autistic children are concerned. There's no point in trying to 'include' children in an environment which is completely wrong for them. Therefore we need a rethink schools and curricula if we're serious about inclusion. But having said that, it's often very small adjustments and flexibilities that can make a big difference educationally to autistic children. P32* 4 I think this depends on where they are on the autistic spectrum. What I think is most important are adaptive skills to cope with the environment. This might include: lessons on how to make small talk, how to identify 364 friendly banter and differentiate it from bullying, how to tell when people are not using words literally and when they are, and how to find space for respite (e.g. when facing sensory overload). Learning to cope in a social environment helps opens doors to other opportunity. While autistic people may not enjoy interacting with other people, I think this is a necessary skill. Autism is an invisible disability (at least for those at the higher functioning end of the spectrum) and it is helpful learn how not to make other people put up social barriers before they actually know the autistic person. P8* 2 Learning about two critical concepts - 1. Themselves, i.e. how autism impacts on them and, 2. The PNT - how and why the PNT behave in the way they do. The reason that I regard these two aspects of education so important is that I believe they are the two main areas that impact on the autistic self; understanding of self should lead to greater capacity for appropriate choice making, and understanding of those around them should help the individual understand better what their own problems might be, and how to overcome them. Overall, I believe that these two learning outcomes will lead to higher self-esteem and reduce risk of poor mental well-being. 3. What would you say has influenced your view concerning educational priorities for children on the autism spectrum, and why? Participant Factor exemplified Answer P20 1 The biggest influence on me was the utterly woeful low expectations I found in a state TEACCH and SALT-based school for my precious boy. They seemed to want to give up on his learning any skills at all, at age 3, and just babysit him till the inevitable institution beckoned, when I could no longer cope with him at home. This made me very angry and I found that ABA was a far more positive and enabling methodology, which taught him how to talk, how to stop expressing 365 himself through self-harm, how to use a toilet, how to eat a healthy diet etc etc. P31* 1 A presentation by the US State Department which showed the enormous advances made in educational outcomes for ASC people, juxtaposed with the one slide that showed employment flatlining. That coupled with the inability of the present government (though I doubt any other hue would be much different)to give me ANY answer when I asked them to put figures against their SEN policy and plans for its implementation. They don't know, because they are not actually geared to ever having to do the calculation. I mention this to demonstrate the profundity of sea-change needed to reverse polarities. But the same argument also holds for old people, and here we might get more traction – cos everyone can see themselves as getting old, while not everyone can see themselves as (getting) disabled. P11 3 Establishment of meaningful communication and emotional engagement. Use body language, gesture and mime to communicate with the non-verbal or those who are struggling with language – or shutting themselves into an inner world. P60 6 Giving birth to a bright, funny and generally wonderful autistic child, and realising that not only do most other people perceive him as some sort of a sub-human, but that unless we fight very hard (and perhaps even despite this), he will be offered nothing like the educational opportunities of other children. Working with families of autistic children, nearly all of whom have experienced some form of educational exclusion. P32* 4 I think my own biography, and the fact that I had to learn to cope and navigate through life before being diagnosed late in life – at which point I had already worked out a lot of what I needed to do myself. P8* 2 My own experiences in developing and understanding of self has been influential, as has all the work I have done with autistic individuals to support a similar process. In addition to that, my son's experiences alongside all the children and families I have worked 366 with, and much of the informal feedback I get via email from families, all seem to suggest that a lack of understanding of self and others plays a key role in the success (or otherwise) of the child. I should also suggest that of critical importance is that of educating the educators (teaching staff) and PNT peer groups, around the nature of autism. Understanding the behaviour of an autistic child and not responding to it from a PNT perspective would, I believe, have immense positive impact on children at school. 4. How do you think your educational priorities can be implemented in practice? Participant Factor exemplified Answer P20 1 More ABA techniques in autism schools and units, so the staff know how to motivate the child to learn rather than just singing him nursery rhymes for 15 years. P31* 1 Start getting nine year olds involved in policy making. I’m serious. A generation of young people are growing up with disabled young people in their midst and much more visible. Set them the challenge of coming up with a radically inclusive future which allows ASC people to have meaning in their adult lives alongside non-disabled people as a human right and they will come with a set of brilliant solutions. P11 3 Currently a big problem is that 'difficult to manage' behaviour is seen as needing to be 'coped with' rather than looking for underlying sensory triggers. In particular, proprioceptive problems are being overlooked. Self injury is poorly understood and still leads to restraining practices that do not address the pain and confusion that leads to them. P60 6 I think that autistic people have the right to take up a plethora of roles in society, if that's what they want. I consider 'dropping out' for example, to be a role. It's interesting that while we encourage so-called typically developing children to gradually specialise in an increasingly narrow range of subjects (often down to one single subject by the time they are 18), for example, autistic children are actively discouraged from this, and that if they have a single interest, it is dismissed as a 'fixation'. It might be the case, 367 therefore, that it would be beneficial to some children (including those who are autistic) to specialise at a younger age. I think educators still have a great deal to learn about autism - that really needs to be the starting point. Given the high numbers of autistic children in mainstream schools, training about autism should be an important part of teacher training. I don't think this training can only be done by autistic individuals, but certainly there should be a lot more autistic adults involved in training teachers, as well as taking up important roles such as on boards of governors, in local authorities and in school management. Trying to set educational priorities for autistic children without understanding autism (which unfortunately is the status quo in many schools), is a waste of time and possibly harmful. P32* 4 This depends on where the child is on the spectrum. Personally I found attending workshops on communication skills (e.g. transactional analysis) where there was a degree of role play very helpful. Other people seem like black boxes to me and if you put in the correct inputs, you would get the desired result. While you could not see what was happening in the box, you could often analyse how your inputs correlated with the outputs they produced. Developing a degree of self awareness would be important in this. P8* 2 (No comments given) 5. Is there anything else that you would like to add? Participant Factor exemplified Answer P20 1 I wish those who are anti could see the good that I see in ABA, and stop thinking that it is trying to normalise, when really it is helping many of our kids live happier lives. I wish somehow there would come a will for change and improvement in our lacklustre and outdated autism education system in the UK. P31* 1 I’ve skied well off piste here - but radical inclusion is 368 the only way forward. P11 3 Urgent training for teachers (and support staff) that encompasses recent advances in understanding of autism. P60 6 (No comments given). P32* 4 No. P8* 2 I would welcome further discussion should the need arise, and commend you on this extremely important research topic. 369 Appendix A24: Practice tool for exploring educational priorities The findings from this thesis indicate that there is a need for practical tools by which differing stakeholders can explore their views and priorities with one another in a respectful manner (see Chapter 5: Meta-analysis). The following is an initial draft of a practice tool adapted from the Q-sort ranking method utilised in this study, as an aide for parents, practitioners and autistic young people to potentially explore their priorities and be able to highlight any tensions in viewpoint. Exploring educational priorities This activity has been developed in order for those involved in the education of a child on the autism spectrum to help them discuss their respective views regarding educational priorities, before setting educational goals or objectives to be worked toward. These can then be used to frame objectives for individual education plans (IEP), and to reflect upon and review these in concordance with IEP reviews. Below is a list of statements regarding potential educational priorities for a child on the autism spectrum. You may wish to use these in the activity, or alternatively write your own statements. You will then be asked to rank them from those that you most agree with to those that you least agree with on the scale presented below the list of statements. This activity can be done by all those with primary responsibility for the education of a particular child, and by the child or young person themselves where appropriate. The resulting rankings of statements can then be used to discuss the various and potentially conflicting views of those involved. It should be noted that what may appear at first to be conflicting views may be due to differing interpretations of the statements used in the activity. 1. Supporting (name of child) transitioning from one activity to another. 2. Taking opportunities to reinforce learning through the use of rewards. 3. For teaching staff to work on building rapport with (name of child). 4. Reducing disruptive and inappropriate behaviours before they become established. 5. Developing social skills. 6. Goals being directed by the (name of child)’s interests. 7. Developing functional communication. 8. Promoting independence and daily living skills. 9. Giving clarity of instructions to (name of child). 10. Taking account of (name of child)’s learning style. 370 Ranking grid: Least agree Most agree Alternative grid: Least agree with Neither agree nor disagree Most agree with 371 Appendix B1: Overview of related publications During the course of completing this thesis, a number of related articles have been published. The following are available freely online (with those which are not freely available printed and attached to this thesis under Appendix B2: Printed copies of related articles): Milton, D. (2012b) So what exactly is autism? [resource linked to competency framework]. London: Autism Education Trust, [online]. http://www.aettraininghubs.org.uk/wp-content/uploads/2012/08/1_So-what-exactly-is-autism.pdf, [Accessed 11th August 2015]. This article was written as a resource for lead educational practitioners working in schools as part of the resources made available for the Autism Education Trust practitioner competency framework (Wittemeyer et al. 2012). The article originated through the work carried out as part of the literature review for this thesis and reviews the dominant psychological models of autism, as well as ‘monotropism’, as well as exploring ‘insider views’ and the double empathy problem (Milton, 2012a). Milton, D. (2013) ”Filling in the gaps”, a micro-sociological analysis of autism. Autonomy: the Journal of Critical Interdisciplinary Autism Studies. Vol. 1(2), [online]. http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/7/html, [Accessed 11th August 2015]. This article utilises micro-sociological theory such as Goffman (1963) and Garfinkel (1967) in order to explore autistic sociality and disposition, as well as living with the everyday stigma of being an autistic person. Milton, D. (2014b) So what exactly are autism interventions intervening with? Good Autism Practice, Vol. 15(2): 6-14. This article charts the range of intervention in the field of autism and the ideologies and paradigms that this encompasses. This work originated in the literature review for this thesis. Milton, D. (2014d) Embodied sociality and the conditioned relativism of dispositional diversity. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(3), [online]. http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR10/html, [Accessed 11th August 2015]. This article expands on Milton (2013) by giving a theoretical account of autistic disposition and diversity. 372 Milton, D. and Bracher, M. (2013) Autistics speak but are they heard? Medical Sociology Online. Vol. 7(2): 61-69, [online]. http://www.medicalsociologyonline.org/resources/Vol7Iss2/MSo_7.2_Autistics-speak-but-are-they-heard_Milton-and-Bracher.pdf, [Accessed August 11th 2015]. This joint piece with Dr. Mike Bracher originated in the work of the Theorising Autism Project (Greenstein, 2013) and the work carried out for the literature review of this thesis regarding participatory and emancipatory research. Milton, D. and Giannadou, K. (2012) Views of children and young people with autism on: What makes a good school for pupils with autism. London: Autism Education Trust, [online]. http://www.aettraininghubs.org.uk/wp-content/uploads/2012/05/2.3-33.2-Pupils-views-on-school.pdf, [Accessed 11th August 2015]. This article was produced as a resource for the Autism Education Trust National School Standards (Jones et al. 2012) and gives an overview of the findings of the consultation exercises undertaken with children and young people on the autism spectrum regarding their views of school. This data provided an important point of reflection for Chapter 6: Discussion – of this thesis. Milton, D. and Lyte (2012) The normalisation agenda and the psycho-emotional disablement of autistic people, Autonomy: the Journal of Critical Interdisciplinary Autism Studies. Vol. 1(1), [online]. http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/9, [Accessed 18th January 2013]. This article was produced in collaboration with another neurodivergent writer and outlined a critique of ABA-based theory and practice in the field of autism. This article attracted criticism from Keenan et al. (2014). 373 Appendix B2: Printed copies of related articles The following articles are not freely available online and so have been printed as appendices in support of this thesis: Milton, D. (2012a) On the Ontological Status of Autism: the ‘Double Empathy Problem’. Disability and Society. Vol. 27(6): 883-887. This article is where the theory of the ‘double empathy problem’ was first published. This theory helps to form the basis of discussions regarding the theoretical explanation for the ‘three-way dispositional problem’ found in this thesis. Milton, D. (2012c) Parenting, discipline, and educational preferences for children on the autism spectrum – a survey of parental attitudes, Curiosity-driven or improving policy and practice. What’s the point of university research in an age of austerity, University of Birmingham, 83-96. This article gives an overview of the survey pilot study carried out as part of this thesis. Milton, D. (2014a) Autistic expertise: a critical reflection on the production of knowledge in autism studies. Autism: The International Journal of Research and Practice (special edition ‘Autism and Society’), Onlinefirst, 17/03/14. In this article the issue of the double empathy problem is expanded by utilising the theoretical framework of the acquisition of knowledge and expertise developed by Collins and Evans (2007). In this article, the notion of ‘interactional expertise’ is explored in regard to autistic and non-autistic dispositions, as well as expanding on earlier work (Milton and Bracher, 2013) in regard to the participation of autistic people in research. Upon successful review to the journal the editors thanked me for this “original contribution to the field”. Milton, D. and Moon, L. (2012) “And that Damian is what I call life changing”: findings from an action research project involving autistic adults in an online sociology study group. Good Autism Practice. Vol. 13(2): 32-39. This article gives an overview of the action research project that was carried out as a pilot study as part of this thesis.

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