“Searching for an answer to make it all better”. A grounded theory study exploring parental drive for diagnosis; is it really autism, or a misinterpretation of behaviour?

The number of children being referred for an autism assessment is increasing significantly (Ballaro & Griswold, 2019). However, many children referred for assessment are not receiving a diagnosis (Monteiro et al. 2015). This is creating an extra burden on services which are already pressured, leading to increased waiting times for all. In light of scarce research into the reasons why parents think that their child’s behaviour is attributable to autism, this explanatory and exploratory study answers the research question: “What are Educational Psychologists’ views on the contexts and mechanisms that lead to parents thinking their child has autism, in cases when their child does not receive a diagnosis based on results of the ADOS?” Using qualitative methodology and a semi-structured interview design, data from interviews with six Educational Psychologists (EPs) working in a local authority was analysed, utilising critical realist grounded theory (Corbin and Strauss, 2008). The grounded theory developed from the data suggests that parents think their child’s behaviour is symptomatic of autism due to an unconscious psychological response against ideas, that they may in some way be responsible for their child’s challenging behaviour. This unconscious psychological response is sustained through confirmation bias, enabling the parent to regard their child’s difficulties as attributable to organic rather than contextual factors. Challenges which go beyond what parents feel able to cope with combined with parental anxiety; can result in thoughts about alternative explanations to autism being intolerable and therefore avoided. This grounded theory suggests a number of environmental contextual factors which contribute to these unconscious mechanisms taking place, including: the impact of technology, effects on parenting within societal change, adverse Childhood Experiences (ACEs), and socio-economic factors. Implications for EPs are explored in the discussion