Young Adults on the Autism Spectrum: Lost in the Services Maze

Background: National surveys suggest many young adults with autism spectrum disorder (ASD) are left without adequate services once they leave high school. However, little is known about what actually transpires as families try to access services for their adult children with ASD.

Objectives: To explore experiences of young adults with ASD and their families related to availability, quality, and appropriateness of services post high school.

Methods: Qualitative interviews addressing post high school experiences were conducted with 35 parents and 14 young adults with ASD. Interviews were transcribed; material relating to publicly funded services was segregated, then coded using a grounded theory approach.

Results: Three major themes emerged from families’ narratives: Information and Access, Program and Staff Issues, and Young Adult Characteristics and Fit. Information and Access: Families were often bewildered by the overwhelming array of adult services. High schools did not always guide families through this labyrinth. Young adults had first to qualify for services and then be accepted by a service-providing agency. Those who had severe behaviors (e.g. aggression, elopement) had trouble finding a willing provider, while those who were more cognitively able rarely qualified. Youth who graduated from high school with typical peers faced a major gap. A young man with ASD: “I was at home for like three years because we couldn’t find anywhere for me to go…. I graduated at 17..., and a lot of the agencies nowadays -- you have to be 21.” Program and Staff Issues: Programs, which varied greatly in quality, had seldom been designed with ASD in mind. They were generally underfunded; low pay, high turnover, and a lack of ASD-related knowledge among staff were common. Formal goals frequently went unmet, and there was little accountability. A mother: “I called a meeting and I was like… ‘You are supposedly getting money to provide services for my son…. I come and find he is standing in the rain for 20 minutes because you have him on some inappropriate assignment, no support, and nothing that is really helping him to get a job.’” Young Adult Characteristics and Fit: Young people with ASD and their parents struggled to characterize where they were on the spectrum and what this meant with regard to needed services. Parents of those with intellectual disability feared little thought was being given to future potential, while parents of the cognitively able were distressed that little help was offered to address ASD-specific challenges. Co-occurring medical or mental health concerns complicated matters for individuals across the spectrum. The mother of a daughter with a high IQ and psychiatric issues: “I reach out to the Developmental Disabilities Administration, to these people, to those people… she doesn’t fit the box. She’s not mentally ill enough, she’s not disabled enough.”

Conclusions: Young adults with ASD and their families bear a substantial burden as a result of lacking or inappropriate services. A better understanding of gaps and issues confronting families, and how these differ according to young adult characteristics, may inform efforts to improve policies and practices.