Relatively little is known about the experience of transition from adolescence to adulthood among young persons with autism spectrum disorder (ASD). The literature suggests that the passage into adulthood, which involves leaving school and the cessation of many community and financial supports, often results in fewer, less coordinated and a more poorly defined range of services. Families, individuals and communities are frequently unclear about the trajectory of development into adulthood compared to the typically developing population, and unprepared for the developmental changes that take place in the teenage years (e.g., relationships and sexuality, emergence of mental health disorders, desire for increased autonomy and independence). Additionally, obtaining support services in the adult system (medical care, housing options, guardianship and trusteeship) is also significantly more challenging.
Objectives:
To identify service gaps and key issues related to transition in ASD; to implement and evaluate an evidence-informed intervention fostering an effective process of transition.
Methods:
Key transitional junctures, needs and gaps in adult services were examined in the literature, through case-based experiences and focus groups with clinicians and community service agencies. Further, ten semi-structured interviews were conducted with parents of adolescents (aged 12-19; 3 females, 7 males) with ASD. To ascertain developmental and transitional needs, the Diagnostic Interview for Social and Communication Disorders (DISCO) was implemented for each participant. The DISCO is designed to elicit a comprehensive picture of the whole child or adult by addressing developmental and behavioural history from infancy onwards
Following application of the DISCO, participants were offered an innovative 6 week curriculum (12 hours total) delivered as modular learning by key professionals addressing a number of identified need areas: Transition to Adulthood and Life Planning, Guardianship, Funding and System Issues, Healthy Relationships and Sexuality, Housing Options, Life Skills and Increasing Independence, Coping with Stress and Mental Health Disorders, Housing, and Vocational and Social Programs. The content of the modules reflected a review of evidence related to the transitional needs of youth and young adults. During and after the intervention, a process evaluation was completed.
Results:
The DISCO served in facilitating an understanding of the skills and impairments experienced by participants with ASD, and for highlighting areas where further support needs or interventions may be required to ensure successful transition to adulthood.
Participants identified the subsequent intervention as effective in addressing key informational needs pertaining to transition. They also described the benefit of connecting with others experiencing similar transitional challenges. They recommended ongoing peer mentoring strategies and the need for more programs and resources in pre-vocational and vocational training programs, housing supports and options for shared and supported living, employment opportunities in the community with specific ASD training for potential employers, and more opportunities for social and recreational experiences.
Conclusions:
Transitional support was found to be lacking. Based on outcomes, this intervention provided benefits to families and family feedback has important implications for clinical practice. Future work will examine the therapeutic value of the DISCO interview process for families and it utility in preparation for the transition to adulthood.
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See more of: Prevalence, Risk factors & Intervention