Perceptions of quality of life in people with mild and borderline learning disability and the autism diagnostic process

This study used mixed methods to gather multidimensional quality of life perceptions from a small group of adults (n = 20) who have mild or borderline learning disabilities and have been referred to a local diagnostic process. The methods were developed through a contextual literature search and a focus group. Quantitative methods involved the administration of quantitative tools that were the Comprehensive Quality of Life Scale- Intellectual/Cognitive Disability (COMQOL-I5) (Cummins and Lau 1996) and the Personal Wellbeing Index- Intellectual Disability (PWI-ID) (Cummins and Lau 2005) as well as a visual ranking exercise of dimension importance. An in-depth qualitative interview, using some adapted ethnographic approaches was carried out with a purposively selected group of 8 of the participants. Quantitative analysis was carried out using selected statistical analysis and qualitative data analysed using thematic analysis (Braun and Clarke 2013)The findings indicated that the study group had a generally low level of objective quality of life with the exception of the dimensions of health and emotional wellbeing. The study group had a lower level of subjective quality of life than was expected, with the exceptions of the dimensions of social interaction and safety. Themes were identified in the data. These included: people are difficult, people have value, life is not fair, emotions are a problem, communication is key, control is key, I want to feel worthwhile and it all boils down to the moneywise.This study identified some differences in quantitative indicators of subjective and objective quality of life for this participant group from studies of people with learning disability and the ordinary population. It raises issues in relation to the specific impact of autism characteristics on quality of life perceptions, particularly in the areas of social interaction, health and material wellbeing. It highlights the importance of combining clinical and research roles and demonstrates that this participant group’s quality of life perceptions can be accessed directly with skilled support