Huntley, ZM; (2013) Aspirations and outcomes for people with autism spectrum disorders in emerging adulthood. Doctoral thesis , UCL (University College London).

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Abstract

This thesis focuses on subjectively valued outcomes and aspirations for young adults with autism spectrum disorders (ASD). Part 1 reviews research literature examining adulthood outcomes for people with ASD. The review highlights the on-going needs of adults with ASD, who are commonly reported to have low levels of independence, high rates of unemployment and high levels of social isolation. None of the reviewed studies considered the young adults’ own perspectives on their current circumstances or future in a meaningful way. Part 2 reports a qualitative study using framework analysis to explore the outcomes and aspirations of young adults with ASD and their parents. Semi-structured interviews highlighted families’ varied outcomes and aspirations, beyond the stereotyped outcomes often represented in the literature. A framework for understanding and assessing outcomes is proposed, which may be developed into a tool for clinicians and other professionals working to support adults with ASD to meet their own personally valued goals. Part 3 discusses some of the challenges of using qualitative methodology with people with ASD, and considers the implications of the findings for service provision. Similarities between working with typically developing young adults and young adults with ASD are considered, and the barriers in achieving personally valued outcomes for adults with ASD are highlighted. These include assumptions made by others based on a limited, stereotyped understanding of ASD which may lead to young adults’ own valued goals being overlooked, and idiosyncratic preferences that may place people with ASD at risk of being coerced into inappropriate or uncomfortable activities. The importance of focusing on individuals’ own valued outcomes is emphasised.

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