Rocky Road: The Career Paths of People with Autism and their Parents
A version of this article first appeared in iancommunity.org.
Amy Hornbeck was a graduate student working for an educational research agency when her daughter was diagnosed with autism. She approached the diagnosis like the researcher she was, but when she began investigating autism programs, her heart sank. “I ended up being appalled and scared at the care and education my daughter might end up receiving in many of the programs I observed,” she recalls.
So she took a detour. She switched from full-time to part-time work, quit graduate school and focused her attention on autism and her daughter, now 11. While her daughter was young, she developed an intensive therapy and educational program for her. She studied for a certificate in applied behavior analysis — a therapy commonly used for autism — and she now helps school districts create play skills programs for students with autism. “Her diagnosis definitely shaped my career choices. I just feel incredibly lucky that I had a choice at all,” she says.
Hornbeck is not alone in changing a career path or reducing work hours when autism became part of her life. According to research, parents of children with autism earn less — and work fewer hours — than those whose children have other health problems, or no problems at all.1 Mothers are most affected.1, 2 They earn 35 percent less than mothers of children with other health problems, and 56 percent less than mothers of typically developing children.1
Young adults with autism face their own job struggles, according to the 2015 National Autism Indicators Report. They are less likely to be employed than their peers with other disabilities after leaving high school. Those who do work tend to have part-time, low-wage jobs. The adults with lower conversational skills, in lower-income families, and who are minorities, fare the worst.3
Some parents in the Simons Simplex Collection (SSC), an autism research project similar to SPARK, and adults with autism shared their work experiences for this article. Several said they have encountered barriers to full employment, from a lack of good child care, respite and time off for parents, to inadequate job training and accommodations — and outright prejudice — for adults with ASD.
STAYING HOME AFTER AN AUTISM DIAGNOSIS
Kathleen left a high-powered job in finance in Manhattan when her son was born, but she always expected to go back. When he was 1, she returned to work part-time as a banking analyst. She placed her as-yet-undiagnosed son in a day care that told her it could handle any child, no matter how rambunctious. “After two weeks they asked me not to bring him back,” she said. “Then he got diagnosed at 2, and that was the end of any career for me for a while. I did get offers, but it just seemed too overwhelming.”
Raising any child is demanding, but one with autism often requires more time — time that can affect the parent’s ability to work outside the home. Someone must shuttle the child to doctors and therapies (speech, occupational, behavioral or play, to name a few). There’s time spent at special education meetings and handling problems at school. Parents often learn and implement therapies at home. And as Kathleen discovered, day-care providers may not be able to manage the challenging behaviors common to autism spectrum disorder (ASD). Kathleen is not alone; 55 percent of her fellow SSC parents have had to reduce their work hours or quit working.7
When her son was 4, Kathleen interviewed for another job in finance. At first the interviewer was excited that someone with her work and educational history — a Master of Business Administration degree from New York University — was interested in the job. But when he realized she had been out of the workforce, his tone changed. “He said, ‘You haven’t worked in three years? Do you even know how to use the computer?’” she recalls.
She didn’t take that job and is still home with her son, now a teenager, managing schedules and keeping on top of issues at school. “Silver lining: My son is on the Principal’s List, requires few supports [at school], excels in band and found the Robotics Club (a godsend) this year,” says Kathleen, an SSC participant.
She knows that some of her former co-workers — those who did not take 15 years off to raise children — are at the top of their careers. She will likely be at a very different place when she eventually returns to work.
SSC families’ experiences are not unique. Mothers of children with disabilities often travel different career paths than other women. Some researchers examined the work histories of a group of American women from 1957 to 1992. Compared with mothers of typically developing children, the mothers of children with developmental disabilities were slower to re-enter the workforce full time as their children got older. They had lower earnings at age 36. They also were nearly as likely to be working part-time as full-time when their child with a disability was a teenager.4
According to an article in the journal Pediatrics, finding good, affordable child care and appropriate services are monumental tasks for parents of children with disabilities. “Therefore, many parents endure forced unemployment or reduce their work hours to care for their children, reducing their annual income.”1,5 Families of children with autism have it worse, the article concludes, as those “parents are called on to serve as their child’s caregiver, case manager, and advocate” as they search for services and care.1
One group of researchers compared parents of children with autism with parents whose children had different developmental disabilities or had mental health conditions such as attention deficit hyperactivity disorder. Parents of children with ASD reported more problems getting services and care for their children than the other parent groups. They also were the most likely to stop working.6
THE JOB-SEEKER WITH AUTISM
Young adults with autism face the biggest challenges to full-time participation in the world of work, despite special education and transition programs that are supposed to prepare them for life after high school.
In the first two years after leaving high school, young adults with autism were twice as likely to be “disconnected” — that is, they weren’t in college or working — as their peers with intellectual disability. They face low rates of employment, college enrollment and independent living. Less than half of young adults with autism received vocational or life skills services during their early 20s.3
Elizabeth Cuff, 21, is a computer whiz who enjoys cooking, gaming, art and creating fantasy fiction. But she has struggled to get and keep a job, despite her successful participation in Project SEARCH, a school-to-work program for youth with disabilities.
Cuff, who has Asperger syndrome, endured bullying throughout her school years in northern Idaho, and now struggles to find acceptance in the workplace.
Like many people her age, she once worked the counter at a fast-food restaurant, taking customer orders and assembling meals. She felt nervous at first, having to be friendly with strangers. “I told them I wanted to be put somewhere else,” she says. “They put a social recluse in a social butterfly position.” She lost that job because, her boss said, “I wasn’t learning fast enough. This is kind of my disability in a nutshell.”
Cuff said she didn’t tell her boss that she has autism spectrum disorder. “I didn’t really care to tell anyone because I was afraid of being treated differently — which is pretty much what happened anyway.”
“Had I told [my boss] I had a disability, he would have kept me on longer, but then I’m also worried that he wouldn’t have hired me in the first place, and his excuse would have been he found someone else for the position,” says Cuff, an SSC participant.
She took another job, this one in a kitchen, where she hoped to cook. Her supervisor only wanted her to clean, and he didn’t want her working on the same side of the room as he did. She got the message: He didn’t really want to work with her, and she left.
She said people seem to notice that she walks on her toes, sometimes stutters when she’s nervous and acts a little differently. “There are those people who treat a person as a person no matter what, and then there are those who immediately know something’s different about you. They don’t want anything to do with you. They put you in a corner, and it’s like you’re not worth anything,” she says.
She draws on a metaphor from the insect world to describe her view. “I see most businesses as an ant colony: If one of their workers is wounded, they pretty much work around him and ignore him. That’s how people treat autism or any disability.”
She has a message for employers: “Give us a chance. It may take us longer to learn something, but you won’t find a more dedicated person as long as we’re put in the right position and made to feel wanted and needed.”
AUTISM AS A CAREER
For some people, autism can have a positive effect on careers — or can lead one down a new job path.
Clinical psychologist Gillian Graham-Bevan had just started her first job evaluating children with suspected autism and other developmental concerns at a children’s treatment center when her son was diagnosed with ASD. Her husband, Robert Bevan, was working evenings and weekends in a group home for adults with developmental disabilities. After the diagnosis, he looked for a job with daytime hours and became a teacher’s aide in a class of children with autism and other disabilities.
What happens when a professional interest in autism becomes personal? “It gave me a completely new layer of compassion and understanding, not just for the children but for the parents of the children I was supporting,” Bevan says. His wife assessed and treated children with ASD — with an insider’s view. “In many ways, having a son with autism makes it easier to relate to and help clients with autism and their families,” Graham-Bevan says. “I’m very aware of the system. I know what it’s like to live with a child with a developmental disability.”
The Bevans know firsthand the challenges families face in obtaining autism services. Despite their experience and knowledge of the system, they (like many others) spent thousands of dollars on private autism therapy for their son, now 11, due to long waiting lists for publicly funded treatment in Ontario, Canada, where they live.
AUTISM AS A CAREER ASSET
Personal experience of autism can be helpful in other jobs. For Kris Guin, 25, having autism is an asset, especially for someone who works for a disability rights organization, as Guin now does.
But it wasn’t always that way. Guin had several jobs during and after college before becoming technical assistance coordinator of the Autistic Self Advocacy Network (ASAN). “Being autistic has, at times, made it difficult for me to get a job due to employers presuming incompetence with me because I think and behave differently from them. However, when I have been able to get a job that supports and accommodates me, I have thrived, and my autism has been an asset.”
For example, the ability a person with autism may have to focus intensely on a special interest — in Guin’s case, analyzing the internal infrastructure of organizations — is helpful in the right workplace.
But symptoms of autism can be misunderstood. At a previous restaurant job, co-workers laughed at Guin’s tendency to startle when cooks banged pots and pans, a sensory sensitivity not uncommon in autism. An interview at an Alabama zoo hit a snag when Guin requested advance notice if the job placement would change from day to day. “Because I’m autistic, I need as much consistency as possible to minimize my anxiety. I ended up not getting the job. I think that if I was hired and had a consistent job placement, I would have been a productive employee.”
At ASAN, Guin requested and received accommodations, such as freedom to communicate by email and text as much as possible, and also to receive detailed, written directions of assignments.
FINDING YOUR CALLING IN AUTISM
Similarly, parent Amy Hornbeck found her calling when she switched to a job in education after her daughter’s autism diagnosis. She began working for a nonprofit, Tools of the Mind, that creates programs to help students improve thinking skills through play. After getting a graduate certificate in behavioral analysis, she began working with schools to develop play skills programs for students with autism. “It’s kind of become my pet passion,” she says.
This career detour — working part-time for several years and abandoning her doctoral degree program — has meant a smaller paycheck. “But overall it’s been positive because it has helped me find more meaningful work,” she says. Oh, and by the way, “I am happy to say my own daughter’s social and play skills are amazing compared to where we began.”
- Cidav, Z., Marcus, S.C., et al. (April 2012). Implications of childhood autism for parental employment and earnings. Pediatrics 129(4). View abstract.
- Baker, D. L., and Drapela, L. A. (2010). Mostly the mother: Concentration of adverse employment effects on mothers of children with autism. The Social Science Journal 47(3), 578-592. View abstract.
- Roux, A.M., Shattuck, P.T., et al. (2015). National Autism Indicators Report: Transition into young adulthood. Philadephia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. View article.
- Parish, S.L., Seltzer, M.M., et al. (2004). Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental Retardation 42(6), 413-426. View abstract.
- Parish, S.L. and Cloud, J.M. (2006 July) Financial well-being of young children with disabilities and their families. Social Work 51(3): 223-32. View abstract.
- Vohra, R., Madhavan, S., Sambamoorthi, U., et al. (2014). Access to services, quality of care, and family impact for children with autism and other developmental disabilities, and other mental health conditions. Autism 18(7), 815-826. View abstract.
- Kinnear, S.H., Link, B.G., et al. (2015). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders, doi:10.1007/s10803-015-2637-9 [doi]. View abstract.