In The Politics of Autism, I write:
Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.
Studies show that autism services can be complicated, creating difficulties for autistic people and their families.
By our estimates, among autistic adults who likely needed job supports, only 1.1 percent received public employment services in 2016 through Medicaid or state vocational rehabilitation programs. These systems are among the only public employment support options for autistic individuals. They are a central focus of Employment First initiatives to bolster disability employment policy in U.S. states. Given deep cracks in the system that provides services for those with developmental disabilities, we suspect that 99 percent of autistic people who need these services are still without them in 2023.
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The federal government invests $15 billion annually in special education to supplement state and local funding, with the express goal of facilitating employment for people with disabilities. This investment is somehow expected to mature on its own; there is no mandated funding for services after high school. It can be difficult for autistic youth to qualify for adult employment services through vocational rehabilitation or Medicaid-funded home- and community-based services. Families must navigate a confusing array of service systems with no roadmap and no guarantees. Autistic youth with average intelligence are less likely to qualify for services, while those with greater needs may be deemed unemployable. It is no surprise, then, that 42 percent of autistic youth don’t have jobs during early adulthood.
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Policymakers have attempted to address these gaps. The Build Back Better Act included funds for ending deplorable wait lists for Medicaid home- and community-based services and increasing access to mental and behavioral health care. Reimbursement rates for services temporarily increased during the COVID pandemic. Ultimately, however, these remedies failed to pass or were discontinued.
