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Autism and the Workplace: How Well Are We Doing?

Marina Sarris
Interactive Autism Network at Kennedy Krieger Institute
Date Published: 
August 24, 2017

Work is "an anchor for one's identity," one that affects a person's quality of life and independence, according to autism researcher Paul T. Shattuck. So, he asks, how well do we do in helping those with autism prepare for, find, and keep a job?1

It's a question that American teenagers and adults with autism also ask. Both groups often look for help from vocational rehabilitation programs, VR for short. Funded by state and federal dollars, VR programs are tasked with helping people with disabilities find work, a cornerstone of adult life.

Connecting people to jobs is an important task. Only 14 percent of adults with autism who receive developmental disability services have a paid job in their communities.2 That number does not include people who don't receive disability services.

VR services vary from state to state, but generally include job training, counseling, and placement, according to the National Autism Indicators Report: Vocational Rehabilitation 2016, which Dr. Shattuck co-authored.1 A half million teens and adults use VR services every year, and roughly 3 percent have autism. Three out of five people with autism left VR services with a job. Most worked part-time for roughly $160 per week, below the federal poverty line, according to the report.1

People on the spectrum may face problems getting and keeping jobs, as well as navigating the VR programs that aim to help them. Many have problems with communication and social skills, both important on the job. At the same time, they often have attributes that make them valuable workers.

The Dedicated Worker with Autism

Kyle, an employee with autism, retrieving shopping carts on the jobKyle Hammond, a 24-year-old with autism spectrum disorder (ASD), is in many ways a dream employee. He doesn't goof off while working as a grocery store bagger in Ohio. When he's sent out to collect shopping carts in the parking lot, he does exactly that. He doesn't chat on his cell phone or play games, like some employees do when they're sent to round up carts.

But his mother, Cheryl, still worries that his misunderstanding of social rules – a symptom of autism – could get him fired. When the manager puts out doughnuts for the employees, she said, Kyle doesn't realize that he is only supposed to take one or two. Also, he may make comments to shoppers that they find puzzling. One time he told a shopper that her car was a Decepticon, a villainous robot from the Transformers science fiction series. Fortunately, she was not upset by the unusual remark. She said she bought the car because she liked its color.

Like several people interviewed by IAN, Mr. Hammond's path to employment was bumpy. He enrolled in a VR program while still in high school; nationwide, almost half of VR service users are high school students.1 But the job agency wanted him to miss school in order to work, which his family opposed. "They closed his case and dropped him like a hotcake," said his mother, a participant in the Simons Simplex Collection autism research project.

Leaving VR without a job, as Mr. Hammond did in high school, is not rare. Nationwide, about 40 percent of clients with autism left VR without a reported job. Almost half of those were said to have Refused Services or No Further Services, a category that VR employees can select when closing a case.1 It is unknown if Kyle was counted among the "refused services" category.

Researchers don't know what it really means when that box is checked on a VR form, said Anne Roux, MPH, research scientist at the AJ Drexel Autism Institute and lead author of National Autism Indicators Report: Vocational Rehabilitation, which analyzed VR data from 2014. There could be many reasons someone leaves VR that do not involve a "refusal" to receive help. "We don't have any way to know," she said.

After Mr. Hammond finished high school, his developmental disabilities service coordinator – a different agency than VR – stepped in and helped him find a job at a grocery. He works 25 to 27 hours a week, slightly more than the average VR "graduate" with ASD. A job coach visits him regularly to troubleshoot problems that may arise. He also mows the grass at Bittersweet Farms, an 80-acre farm near Toledo, Ohio. The non-profit farm offers day and vocational services, recreational activities, and housing to adults with autism.

Employment Outcomes Vary from State to State

Use this LIST to find the Vocational Rehabilitation agency in your community.

Just as state VR agencies differ, so do their success rates, if you consider success to be the percentage of people with autism who leave VR with a job. Those rates range from 79 percent in Alabama to 29 percent in New Mexico in the 2014 budget year. However, those statistics don't tell the whole story.

For example, states may not have money to serve everyone who is eligible for VR. They put applicants into categories based on need – no significant disability, significant disability, and most significant disability – and serve the neediest first.1 Maryland, for example, has 4,000 people with a "significant disability" on its waiting list, some who applied back in 2014.3

The percentage of eligible VR applicants with autism who actually received services ranged from 88 percent in Pennsylvania, down to 39 percent in North Dakota.1 Maryland VR served 68 percent of eligible applicants – the national average.

Those numbers do not include people with autism who are eligible for help, but never apply. For example, what happens to the student who is told by a school transition specialist that his autism is not severe enough to qualify for VR services? "We don’t know about people who are turned away at the door before they get services," Ms. Roux said. "What happens if someone is discouraged from applying?"

Struggling to Find Work, from West Coast to East

iStock illustration of a man working in an office cubicleDavid M. Leon, who has autism spectrum disorder, has enrolled in VR services in several states where he has lived. While in Oregon, he completed an administrative assistant certificate program at a community college, using VR services. When he later moved to Vermont, he again sought help finding a job through its VR agency. But despite applying for dozens of jobs, and having computer skills, the only steady work he found was eight hours a week at a grocery. On his own, he later found a job working 20 hours a week at Goodwill Industries, a nonprofit that provides services to people with disabilities, among other goals.

Mr. Leon's mother, Linda Marina, said job training is only part of the solution. Employers need to be more welcoming to, and understanding of, applicants with autism, she said. "Why aren't [VR] agency personnel speaking to employers about autism and the benefits of hiring an often conscientious, reliable, detail-oriented individual?" she asked.

In Maryland, Lee Armstrong, supervisor of autism services for the state VR agency, tries to do just that. "We are expanding our outreach to employers and companies about what autism is, that it's not contagious, and that it's important to focus on the individual's strengths, rather than looking at behaviors," said Mr. Armstrong, of the Maryland Division of Rehabilitation Services. Some people with autism have repetitive behaviors, such as hand flapping. Mr. Armstrong asks employers to look beyond those behaviors because the worker may have no problem performing the job. "We talk to different employers, companies, and colleges about autism, how to work with someone who has it, and what advantages someone on the spectrum could provide to their company."

Making a Good Employer-Employee Match

florist shop worker preparing a bouquetSeeing what types of jobs businesses need to fill is part of the equation when matching clients with ASD to companies. "Equally important is working with the business to see what the business' needs are, and to see how we can work together to make that match a happy one," said Suzanne Page, Assistant State Superintendent of the Maryland Department of Education, which oversees VR.

VR officials also work with job seekers to reduce barriers to employment. Being interviewed by a stranger for a job, and starting work in a new environment with more strangers, can be stressful for anyone. Those situations can be especially difficult for people with autism, as an "insistence on sameness" is a symptom of autism.4

Mr. Armstrong said some of his clients with autism feel anxious about traveling to the state job training center for services. "One student took three tries to make it into the building. He's a great worker with strengths, and when he's ready for employment, he may need more accommodations to get him acclimated to the job," Mr. Armstrong said.

Many potential workers with autism, whether seeking a job or taking college classes, may struggle with advocating for themselves, asking questions, and managing anxiety and sensory issues, he said. He works with employees and employers alike to address those issues.

Finding Autism Acceptance in the Workplace

There's not much tolerance of hidden disabilities in the workplace.

photo of welcome sign in a shopUnfortunately, some workplaces around the country do not seem welcoming to people on the spectrum, according to several adults with ASD.

Kiran Puri, of Missouri, has struggled to find VR services that help, and a workplace that accepts her. "There's not much tolerance of hidden disabilities in the workplace," said Ms. Puri, who has Asperger's Syndrome and a college degree. Currently unemployed, she has worked on the sales floor of a large store. But her employer didn't understand why she found working the cash register and handling customers to be challenging, and why she preferred different tasks, she said. "The work just got much harder and more stressful due to drastically increased expectations on the team members," she said. "The praise got less and the criticism became more harsh."

Jobs that require employees to perform multiple tasks at once – and do so rapidly – can be stressful and affect self-esteem, she said. Like some others with ASD, she said, she prefers to focus on one task and work accurately and logically. "We need to create more jobs that are lower on the level of stress and judge people more on accuracy instead of speed."

"I tried to get a new part-time job but the agencies under Vocational Rehab were not much help," she said. "Many times I dealt with people in these job placing agencies who were trying to 'fix me' instead of helping me to develop any natural talents I might have. They wasted too much time trying to correct my social skills and not enough time in helping me utilize my ability."

What VR Provides Job Seekers with Autism

Ideally, VR agencies could pinpoint someone's talents and find jobs that match, as Ms. Puri said. The most frequent service they provide to clients with ASD is an assessment of their vocational skills and needs, which can include the person's interests, personality, interpersonal skills, work experience, and aptitudes. From that, the agency develops an Individualized Plan for Employment (IPE) that outlines goals and services.1

Other potential services including job counseling, job readiness training, help crafting resumes, and help searching for, and finding, a job. Some states help clients learn to use public transportation or drive a car. Clients with the greatest needs may get "supported employment" services, which includes having a job coach work with the client to learn job tasks and workplace rules.

photo of landscaping employee mowing grassAccording to Drexel researchers, two thirds of clients with autism received assessment services.1 A little more than one third got job search assistance and job placement services. Only 20 to 23 percent got on-the-job supports, such as job coaches. VR services usually end once a person has held a job for 90 days, although they can be restarted later. Some who use supported employment may stay in VR services longer.

Nationally, VR agencies spent almost $4,800 per client with autism, about 20 percent more than on clients with intellectual disability, in 2014. But researchers could not determine why, because both groups used similar services and had similar employment rates, Ms. Roux said. People with autism were less likely to have supported employment than people with intellectual disability.

People with autism, on average, did not earn enough to place themselves above federal poverty guidelines, according to the Drexel researchers. The same is true for VR clients with other disabilities.1

Despite an in-depth analysis, Dr. Shattuck noted, there were some questions the Drexel researchers did not have the data to answer yet. Those questions include: "How well do VR services work for those on the spectrum? Are people fully employed or under-employed? Are the jobs sustainable and stable?"1

"We are continuing to study VR services with an eye toward identifying what is different across states that contributes to variations in how people with autism fare across states," Ms. Roux said.

Linda Marina believes communities could do more to make workplaces – and other aspects of adult life – more rewarding and inclusive for those on the spectrum. "It's not just about finding a job. It's about finding a way of creating community," she said. "It's about people caring about each other. That's what is missing in our culture: people working to include people with autism in the workplace, in the religious community, and in everyday life," said Ms. Marina, adding that her rabbi and his wife are welcoming to those with disabilities.

"Communities are where the real change needs to be happening."

The Interactive Autism Network (IAN) thanks the participants in the Simons Simplex Collection and IAN Research who shared their experiences for this article.

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Photo credits: 1) iStock, 2) Cheryl Hammond, 3) iStock, 4) rawpixel.com-Unsplash, 5) Cathal Mac an Bheatha-Unsplash, 6) iStock.

References: 
  1. Roux, A. M., Rast, J. E., Anderson, K. A., & Shattuck, P. T. (2016). National autism indicators report: Vocational rehabilitation. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. View report
  2. Roux, A. M., Shattuck, P. T., Rast, J. E., & Anderson, K. A. (2017). National autism indicators report: Developmental disability services and outcomes in adulthood. Philadelphia: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.
  3. Maryland Division of Rehabilitation Services. (Unknown). The waiting list. Retrieved from http://dors.maryland.gov/consumers/Pages/waiting.aspx
  4. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Association.