Service Needs of Adults with Autism

Background: Autism is a pervasive developmental disorder that persists into adulthood, yet there is little research available on the trajectory of autism over the life course. Behavior and symptoms change as children with autism mature into adults, resulting in new challenges and needs for this population. Little is known about the unique service requirements of adults with autism, underscoring a significant need for data to help guide the development of relevant and useful services that may improve quality of life. 

Objectives: The primary aim of this study was to learn more about the needs of adults with autism by identifying the drivers of fulfillment and success in employment, leisure, and spirituality. A secondary objective was to determine whether the needs and success drivers reported by adults with autism are the same or different from the needs and success drivers reported by parents of adults with autism.   

Methods: The Autism Science Foundation (ASF), UJA-Federation of New York (UJA), and the Interactive Autism Network (IAN) collaborated to develop an online questionnaire to survey the needs of this population. The survey included 68 open and closed ended items, focusing on a range of topics including education, employment, and leisure activities. Contingency items were used to further explore responses where applicable. A hyperlink directing respondents to the survey was disseminated via email, social media platforms, and mailing lists. A convenience sampling method was used: ASF and UJA informed prospective participants and organizations of the survey’s impending release and interested individuals registered to receive or distribute the survey once IRB approval had been received. Respondents who did not pre-register but were made aware of the survey through word-of-mouth, email, networks, or social media were still eligible to participate. Participants fell into one of three categories with an enrollment goal of 100 per group: independent adults with ASD not under legal guardianship and between the ages of 18 and 35; parents of an independent adult with ASD aged 18-35; and legally authorized representatives (legal guardians) of a dependent adult with ASD aged 18-35. The survey was open for responses for a two-month period.  

Results: Data are expected to be reported in December, 2012.  

Conclusions: To our knowledge, this is the first large-scale investigation that has systematically examined the vocational, social, and spiritual needs and experiences of autistic adults, and incorporated the perspective of parents and legal guardians. The results from this study will provide a more nuanced understanding of the challenges autistic adults and their parents face, and what success means to them. Moreover, this study has the potential to yield much-needed, actionable information on how best to serve and support this population. Ultimately, we envision that the results will help clinicians, advocates, and stakeholders make data-driven decisions with regard to programs and therapies for autistic adults.