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03-07-2018 | Original Paper | Uitgave 11/2018

Journal of Autism and Developmental Disorders 11/2018

Young Adults on the Autism Spectrum: The Struggle for Appropriate Services

Journal of Autism and Developmental Disorders > Uitgave 11/2018
Connie Anderson, Catherine Butt
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They’re all coming. You can hear the rumbling of the ground. They’re going to come, and where are they going to go? —the mother of a 30-year-old with autism


In the United States, young adults with an autism spectrum disorder (ASD) lose federally mandated supports upon leaving high school. To arrange adult services, families must prove their young adult’s eligibility and find competent service providers. National-level statistics regarding receipt of appropriate adult services are discouraging, but little is known about families’ lived experience with regard to services. Therefore, qualitative interviews focused on the search for and satisfaction with adult services were conducted with parents of young adults with ASD, then analyzed using the constant comparative method. Emergent themes included Bureaucracy and Fighting for Access, Staffing Issues, Program Suitability, and “Doing It Yourself.” The need to improve service access and delivery is discussed, as are issues facing specific ASD subgroups.

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