The interplay of supports and barriers during the transition to adulthood for youth on the autism spectrum

Abstract

Purpose Transition to adulthood is a complex process that involves important life domains such as education, work, independent living, community, health, and social relationships. Autistic youth face the transition with greater challenges than their peers, and there continues to have significant gaps in the services as they approach young adulthood. The study was conducted to understand the complex interplay between supports and barriers to participation in the transition process. Method Data was collected through six focus groups with 24 participants (7 parents, 11 practitioners, 6 autistic youth), digitally audio-recorded, transcribed, and analyzed using thematic analysis. Results Four themes were reported: Inadequacy of Services, Ambivalence about Formal Services and Support, Understanding Good Partnership, and Evolving Parental Involvement. While parents and practitioners see the fragmented services and lack of comprehensive support as the most prominent challenge, autistic youth feel ambivalent about the type of services they need. Practitioners address the importance of establishing an appropriate level of engagement with parents in the transition process. Autistic youth expect their parents to set a boundary that affirms their independence. Conclusions Our study highlights the need to elicit input across different stakeholders to make transition services centralized, easily accessible, and individualized. Implications for Rehabilitation It is important to have a systematic road map, early preparation of families and autistic youth about the array of adult transition services, and a centralized hub of information to be disseminated. Disability service agencies should develop and implement plans for enhancing outreach and services to transition youth on the autism spectrum and their families. Practitioners need to identify locally available resources and channels for outreach and make available service more visible by producing transition-related materials with examples of current legislative information, problem solving, and best practices. Practitioners should consider how autistic youth identify their needs and wants may be different than how service providers and parents conceptualize them. It is critical to capitalize appropriate levels of caregivers/family support and engagement by provision of education about policies and guidelines for communication and collaboration.