Only 1.1% of autistic adults who needed employment services received them in 2016, according to the Policy Impact Project in the A.J. Drexel Autism Institute’s Policy and Analytics Center.

Between 2008 and 2016, a new study from Drexel University’s A.J. Drexel Autism Institute found that an estimated 1.98 million autistic adults, representing 99% of those who likely needed employment services, did not receive support through Medicaid or the Vocational Rehabilitation Administration.

The study, recently published in The Milbank Quarterly, examined data from the Centers for Medicare & Medicaid Services as well as the Department of Education’s Rehabilitation Services Administration. The researchers analyzed the distribution of employment services among individuals with autism and those with intellectual disabilities.

“Employment is a crucial factor affecting the health and well-being of the approximately 5.4 million autistic adults in the United States, just as it is for individuals without disabilities,” stated Anne Roux, a research scientist and director at the Policy Impact Project in the Autism Institute’s Policy and Analytics Center (PAC), who is the lead author of the study.

In both Vocational Rehabilitation and Medicaid programs, the research team found that only 1.1% of working-age autistic adults who potentially need employment services are getting them. In 2016, around 4,200 autistic people were receiving services through Medicaid waivers, while nearly 18,000 were receiving Vocational Rehabilitation services.

Two employment services, Medicaid and Vocational Rehabilitation, offer different types of support for autistic adults. Medicaid provides long-term employment services, while Vocational Rehabilitation offers short-term services. However, between 2008 and 2016, Vocational Rehabilitation served eight times as many autistic individuals as Medicaid did. The difference in the number of people with intellectual disabilities receiving services from Vocational Rehabilitation compared to Medicaid was smaller, with three times as many individuals served by Vocational Rehabilitation.

Medicaid funded employment services for fewer autistic individuals, but its spending on employment services for autistic adults was more than double that of Vocational Rehabilitation.

However, total spending on employment services for autistic adults decreased by almost 30% among Medicaid enrollees but increased by nearly 400% among Vocational Rehabilitation service users over the same period.

“Public spending as a whole is going toward short-term employment services, even though many autistic individuals are likely to need some level of flexible, longer-term support throughout their working years,” said Roux.

The research team was  surprised by the gaps in the capacity to provide public employment services.

“It is difficult for me to wrap my brain around exactly how few people are receiving public employment services,” said Roux.

Roux pointed out that autistic individuals do not have guaranteed access to support services for functioning and wellbeing after they finish high school. When special education services end, there is a “services cliff” – a gap in service eligibility – because there is no federal law that allows autistic adults to continue receiving the services and support they may need throughout their lives. The “services cliff” is worsened by very limited access to employment services. Even when services are available, the process of accessing them is often very challenging, preventing individuals from reaching their potential and trapping them in a life of poverty and increased healthcare costs.

The research team aimed to explore how employment services for autistic adults are funded in the U.S. However, they found that there is no publicly available data that tracks employment services for autistic individuals within the Medicaid and Vocational Rehabilitation systems.

“Therefore, the significant gaps in our ability to provide these public services are often only recognized through the stories of individuals who continually report that they cannot access the assistance they require, or by individuals seeking to improve the delivery of these services,” stated Lindsay Shea, DrPH, leader of PAC and the principal investigator for this research. “These findings validate those experiences and underscore the importance of funding for these services.”

As a result, the research team suggests that there is an urgent need for policy changes to enhance the employment services systems in the U.S.

Why Autistic People Can’t Work

With graduation season around the corner, many autistic high school and college seniors may feel a unique tension between their hopes (what is possible) and their expectations (what is probable) regarding their future careers. Autistic youth face so many barriers to employment that one-third of young adults on the autism spectrum are not employed in their twenties. Those who do find employment will likely be in unskilled jobs with low wages, even if they attended college. 

A study reveals common themes among participants’ responses, including the constraints of ableist perspectives among employers, the challenges of “finding the sweet spot” when planning for a future career and the disconnect between autistic youth’s needs and available resources, among others. In light of these findings, the authors advocate for interventions that offer individualized support, embrace neurodiverse identities and facilitate collaborative decision-making. 

“The youth in our study were very practical — trying their best to balance their interests, wanting to make a difference and anticipating difficulties with work-life balance,” said Curtiss, who specializes in special education within UD’s College of Education and Human Development. “There are sometimes erroneous assumptions that autistic youth lack the skills to work, but our study sheds light on the barriers they face.”

Tensions between hopes and expectations 

In their study, Curtiss and her co-authors held focus groups with participants in the Midwestern United States, including autistic young adults between the ages of 16 and 24, caregivers and practitioners. The research team asked participants about their hopes for the youth’s future careers, expectations for their career prospects, roles in their career development, and sources of support and challenges. 

One of the common themes in the participants’ responses was the influence of either disability acceptance or ableism—discrimination against individuals with disabilities—on their hopes and expectations. In recent years, awareness and acceptance of neurodiversity—how some individuals’ brains process information differently—have increased. However, employers are still hesitant to offer meaningful jobs to autistic people. 

“I think that it’s really difficult to find employers that are willing to give neurodiverse adults a chance,” said a parent participant. “If they struggle in some of the social and communication realms, it’s really difficult to get them convinced that this person can do a higher-level job.”

“For this reason and others, some parents in our study struggled with the idea that their hopes for their children’s futures were too high, while others held hopes and expectations that were too low,” Curtiss said. “For example, one parent affirmed their high school senior’s interests in screenwriting but doubted whether a career in television or film was possible.”

Many participants also felt a disconnect between the autistic youth’s needs and available resources. For example, one autistic participant worried about their future as a teacher. 

“I think the main concern I have is being an autistic teacher because there’s so many things about being autistic that make it very difficult to function on a daily basis … there aren’t that many resources out there about any autistic teachers,” the participant said.

Similarly, one parent emphasized that the state vocational rehabilitation (VR) services — which help people with disabilities prepare for, obtain or maintain employment — failed to address the specific needs of their autistic child. 

“It took [the VR program] weeks to find a [support provider],” said one parent participant. “She called out a lot. So, [my son] couldn’t go to work, which — try to explain [that] to a kiddo that has a schedule and a routine. And now all of a sudden, you’re changing it, wait a minute. I was supposed to go to work. So that would set off [distressing] behaviors.”

Despite the parent’s interest in communication and collaboration, the service provider failed to recognize the youth’s needs for routine and schedule. Rather than adopting an individualized approach, the system favored a standardized service approach, undermining positive developmental and vocational outcomes.

Resolving tensions

Curtiss and her co-authors emphasize that resolving these tensions in vocational planning requires a comprehensive and collaborative effort among autistic youth, their parents, practitioners and policymakers. Tailored support for each autistic individual, an acceptance of neurodiverse identities and transparent, collaborative decision-making is crucial. 

“One interesting thing we identified was how important labor markets were to individual opportunities and decision-making,” Curtiss said. “For example, one of the practitioners in our study noted that low unemployment rates tend to help employers be more open to hiring people that they haven’t considered in the past. The importance of these macro-level forces highlights the need for autism advocates at the table when drafting labor policy.”

Antonella Barbieri was the young mother of a 2 ½-year-old boy when she received the shocking and life-altering news: Your son has autism. “I cried,” she said. “I cried a lot.” In this candid and moving episode of Diversity Dialogues, Antonella, a senior management analyst in the Division of E-Filing, takes us behind the curtain to view the real-life experiences of an autistic boy and his mother. She discusses those first moments and days, the daily struggles of the parent of an autistic child. And you’ll hear how she wouldn’t change a thing and believes the experience has made her a better and more patient manager.

Did you know that only 15% of autistic people are employed? That is a scary number, and I have been on both sides. In today’s video, I wanted to talk about some struggles I have faced and shed light on what it is like trying to find and hold down a job as an autistic person.