You likely know at least one autistic person. One in 36 children and approximately 5.4 million adults in the U.S. are on the autism spectrum.
It is far less likely that you know an autistic person at your workplace. The reason for this exclusion stems from a long history of shameful treatment of people with developmental disabilities in this nation.
Autistic people have differences from one another in their interests, behaviors and level of social interaction, and these can each serve as challenges and strengths. The term autism spectrum appropriately reflects the expansive range of abilities and differences in support needs across the rapidly growing population of individuals who have been diagnosed. We conservatively estimate that half of autistic individuals in the U.S., or about 2.7 million people, require some services to find and keep a job. Poverty rates are higher than average among families with autistic individuals, so many autistic people must rely on public employment services. Unfortunately, most of these individuals will never receive them.
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.
The deinstitutionalization revolution in the mid-1960s began to redress the needs of people with developmental disabilities in the U.S., including autistic people. Previously physicians often advised parents to institutionalize disabled children, perhaps not realizing the horrible conditions in which they would live. In subsequent years, the nation demanded better. Disabled people received newly mandated public education and reasonable accommodations to support working and residing in their community. In 1975 the government mandated that disabled people must have the option to receive public education, and in 1990 it required employers to provide reasonable accommodations. Today, though, this revolution remains unfinished. Just as the deinstitutionalization of psychiatric institutions has largely only shifted people with mental illness into jails, we have left many autistic adults to sit at home and not realize their full potential.
As autistic teens reach adulthood, support withers. Autism research, which is largely focused on early childhood identification, has not yielded an adult system of care to support autistic adults’ needs. There is an unstated and incorrect notion that, miraculously, the 70 percent of autistic youth who qualify for special education services during their school years suddenly won’t need services or supports once they leave high school.
Researchers and families of autistic individuals refer to this phenomenon as the services cliff or the disability cliff. Students receive formal special education services to aid their transition to employment, continued education and independent living. But once they graduate, they often get nothing.
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.
The U.S. has the highest net worth in the world yet uses a broken and unsupported system to serve people with lifelong service needs—many of whom have marketable skills and want to work.
Even if services for autistic people were mandated in adulthood, there wouldn’t be enough places to receive them or people to provide them, especially among autistic people from underresourced areas. Of the 2.7 million individuals estimated to need employment services, only 22,700 autistic adults received publicly funded employment services in 2016. Most only received short-term vocational rehabilitation services, even though autistic adults often need some type of ongoing job supports. This is unfortunate because vocational rehabilitation and Medicaid services are cost-effective, and programs such as Ticket to Work support people by allowing them to receive safety net benefits while trying out jobs.
Despite moving people out of institutions and spurring access to education and employment via federal legislation, such as the Americans with Disabilities Act and the Individuals with Disabilities Education Act, the nation still fails to recognize the potential contributions of autistic workers. Fewer than one in five autistic adults who receive public employment services have a paid job in their community. Some of them are underemployed or stuck in dead-end jobs that neither use their strengths and interests nor pay a living wage. “The disabled were dramatically underestimated and therefore criminally undercultivated,” wrote journalist Jennifer Senior in a recent article in the Atlantic about the history of dehumanization within institutional care. This statement remains true nearly 60 years after deinstitutionalization began.
States see a need to plug holes in mental health services to shore up workforces, while supports for autistic people and those with other disabilities—who could perform jobs that companies need to fill—remain underfunded by state legislatures. While the U.S. debates its mental health crisis, autistic people with co-occurring mental health issues are often left out. Access to mental health services to address anxiety and depression could help remove barriers to work for these individuals.
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.
The contradictions are astounding. Having a job is associated with health and wellness, largely because of the tie between health insurance and employment. Yet states are considering tethering Medicaid insurance to work requirements while simultaneously not providing the assistance autistic adults and others require to find and keep work. This leaves these individuals, some of whom would benefit from even a minimal level of support, entirely out in the cold, including for needed health and behavioral health care.
It is time to finish the revolution. Mandating developmental disability services in adulthood and investing in home- and community-based care are not optional. Accessing employment in adulthood is as necessary as accessing education in childhood—and arguably more valuable. Most of our lives are spent in adulthood, a time when we are, hopefully, thriving. Yet without public funding, only those wealthy enough to afford employment services have this chance—one that is denied to the most vulnerable.
This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.