The voices of young people with autism spectrum disorders in transition to post-secondary destinations, following the introduction of the new Special Educational Needs and Disability Code of Practice in England

Abstract

This mixed methods study explored the voices of 29 young people with Autism Spectrum Disorders (ASD) in the 15 to 19 age range concerning their views and experiences of transition to post-secondary destinations, in the context of the English Special Educational Needs and Disability (SEND) reform. Individual semi-structured interviews were conducted with the young people, followed by the collection and analysis of their respective Education Health and Care (EHC) plans, the new statutory documents for individuals with SEND. The requirement to include the voices of young people and their families in these documents suggests a complementary way of accessing their views, providing invaluable information about young people’s aspirations, needs, and the outcomes sought for them at this crucial time in their lives. The International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY) served as a tool to perform content analysis, supporting the categorisation of the content of both interviews and EHC plans in a systematic, standardised way, to explore the domains of functioning that made up the fabric of young people’s experiences, needs and outcomes. Additionally, these outcomes were assessed using the Goal Functionality Scale (GFS III) to explore their overall quality with a focus on participation, considering the aspirations, views and needs of this group.

This thesis unearthed first-hand aspirations of autonomy, experiences of anxiety and ambivalent feelings about the future for young people with ASD, and the importance of contextual factors, predominantly the support of immediate family members and relevant school staff for participation in day-to-day activities. These themes could be of significant value to steer the conversation around transition to post-secondary life for this particular group. A series of discrepancies emerged concerning the content of young people’s EHC plans regarding the actual involvement of young people in the development of these documents and the methods used to capture their views in the context of communication and interaction difficulties. The use of the ICF-CY taxonomy to analyse plans unearthed a predominant focus on activities and participation dimensions of functioning, followed by body functions and environmental factors, highlighting the relevance of involvement in life situations to describe their views and aspirations. Discrepancies in the organisation of content related to needs were found and overlaps in functioning content were identified in the categorisation of needs across education, health and social care, suggesting limitations to the proposed separation of needs in these terms and confusion about their implementation in the new SEND system. Finally, the analysis of outcomes sought for young people showed these were of overall poor quality and predominantly focused on academic dimensions at a time of life-skills aspirations for transition.

The findings from this study have implications for policy, schools, front-line practitioners and service-providers highlighting the need for further guidance for practitioners to enact the principles of the new SEND policy; to further collaboration with young people in realising their voices and aspirations in the development of their plans and in the provision put in place for an effective transition; describing their needs in a biopsychosocial way incorporating aspects of the environment to remove barriers to participation; and in the development of outcomes and provision that are responsive to the wishes and aspirations of young people in their transition to postsecondary destinations.

Date of Award	15 Nov 2019
Original language	English
Awarding Institution	University of Roehampton
Sponsors	University of Roehampton Vice-Chancellor’s Scholarship
Supervisor	Debbie Epstein (Director of Studies), Susana Castro-Kemp (Co-Supervisor) & Olympia Palikara (Co-Supervisor)