Obstacles in Employment for Young Adults With Autism
John W. Harrington, MD
Director, Division of General Academic Pediatrics, Children’s Hospital of The King’s Daughters, Norfolk, VA
Harrington JW. Obstacles in employment for young adults with autism. Consultant360. Published online July 13, 2021.
Considering that the current rate of autism in the United States is 1% to 2% of all children,1,2 we will have a large influx of adolescents becoming young adults with autism over the next few years. Transitioning from high school to adulthood for those with autism has many hurdles and questions for both parents and physicians that require vigilance and understanding of the complex overlapping rules encompassing public schools, bureaucratic government, and private payer systems. Typical concerns for parents/guardians and adolescents/young adults with autism surrounding this transition generally include:
- Should young adults with autism be able to drive independently?
- Should parents or guardians petition in court for full guardianship or limited guardianship?
- Should the student with autism graduate from high school at age 18 years or stay until he or she is age 22 years?
- Should the young adult with autism learn job skills and seek employment? Or should he or she earn a high school diploma and go to a college that provides resources and services for students with autism?
I would like to focus my article on the final question about employment but will provide some background information concerning my own personal situation with my adult son with autism. Sean is now 25 years old and can physically do anything a neurotypical young adult can do; this makes understanding the consequences of his social interactions and navigating his intellectual difficulties very challenging. That is mostly why my wife and I decided to provide guardianship and initially decided against allowing Sean to drive a 1350-kg vehicle. We really were not concerned about his decision-making or his driving skills, but we were worried about others taking advantage of his emotional immaturity. If he were involved in an accident, it would be difficult for him to explain what had happened. In addition, we were under the impression, like many others, that driverless cars were just around the corner.
Most individuals with a disability can stay in high school until they are age 22 years, whereas local, state, and most federal programs consider them adults. Therefore, many people with autism must choose when they want to finish high school, where support services may be more plentiful compared with what is available in the adult world. Sean wanted to graduate with his senior class, but he also decided to stay in school so that he could participate in the job training that his school offered. In that additional year, the school had partnered with a new program for which he had qualified and was subsequently enrolled in Project SEARCH.3,4
Project SEARCH is a well-known employment program for students with disabilities aged between 18 and 21 years who may have participated in a modified diploma program with their high school. Project SEARCH usually partners with local school systems and host businesses to provide unpaid 9- to 10-month internships, generally in 3-month blocks.4 The program uses a combination of classroom instruction and hands-on experience along with an on-site job coach.4 Sean started the Project SEARCH program through his high school, and the organization partnered with the local regional medical center. During his first 3 months, he was in the sterile processing department, where he learned how to sterilize surgical instruments. He then rotated to the material management department, where he was responsible for preparing the packages, or packs, that are required for each specific surgery to be performed the next day in the operating room. This was essentially a scavenger hunt with a checklist for surgical supplies needed for specific surgeries. Sean was very good at this because he has a strong memory for details.
He excelled at his job and was putting together more packs in 4 hours than most employees did in a whole day. Serendipitously, one of the workers in the materials management department was retiring, and a job opening became available for Sean during his 3-month training. Sean jumped at the chance to have a job, so his job training with Project SEARCH ended after only 6 months. He was hired for a part-time position at $12 per hour for 20 hours a week. The only downside, not fully explained at the outset, was that he could no longer stay enrolled in high school, so he was shifted into the adult world for all of his future services and developmental needs, which tended to be less robust than what the high school offered.
Initially, Sean had had a job coach for the first few weeks, but after realizing that Sean could do the job faster and more efficiently than his counterparts, the coach faded his mentorship pretty quickly. Sean was soon on his own, and his case for employment services was closed shortly thereafter. Because of Sean’s hard work, however, his coworkers took advantage, and Sean started doing more and more packs, while the other employees would linger at their computer stations. Sean did not have the verbal or social skills to know how to report this concern, and he was the new employee, so he just kept his head down and completed the extra work. My wife and I were not allowed to observe him at work, but we started to notice that Sean seemed more stressed about going to work, which was odd because he previously was very excited. Finally, the stress must have built up, and something sparked him to yell at a coworker. Apparently, someone from another department had accidentally took the cart he usually used to collect his packs for the operating room, and he had cursed at this person for taking his cart. The manager was called, human resources was notified, and Sean was reprimanded for his behavior. Fortunately, this also allowed my wife and I to ask more specific questions about what was happening at work. We were able to discern that Sean was putting together up to 20 packs per day, whereas his coworkers were doing single digits of packs per day. The manager was unaware of this. He noticed that we always took Sean to work early because he was afraid of being late. Sean clocked in early but was told he could not work overtime. So instead, he worked for 30 minutes and got a head start on all his extra packs before clocking in.
What was really eye opening was that none of his coworkers knew that he had autism. They only knew that he had a disability, but the supervisors were told that they could not divulge to the coworkers which disability.
Once all this was clarified, things went well. Sean worked his 4 hours per day and 20 hours per week and was always available to do extra work if someone was sick or on vacation. He started to become well-known in the hospital because he liked to learn people’s names and birthdays and say “hello” to everyone. Prior to COVID-19, he had been giving plenty of high-fives and fist bumps throughout the hospital. Occasionally, some of the younger woman nurses thought he was cute, and they would allow a hug every once in a while.
At this point, Sean was older than age 20 years. He had trouble understanding when a hug was spontaneous and how it should be initiated. Unfortunately, these innocent gestures had become routine for him, and regrettably, they could be misconstrued. Sure enough, he was in the cafeteria and a nurse he knew well was with her supervisor. Sean apparently seemed to stalk their table until the nurse and her supervisor stood up. He initiated a hug with the nurse. The supervisor decided this was sexual harassment, and the young nurse did not defend the action Sean had taken, feigning surprise. Social misperception was turned into a sexual harassment indictment.
The supervising nurse demanded the security officers play back the video of Sean’s movements around the hospital. The security guards knew Sean well and realized the supervising nurse was blowing this escapade out of proportion. When human resources was brought in, the security guards defended that Sean had been led to believe he could hug someone and that he was not harassing anyone. Unfortunately for Sean, the guidelines about harassment are related to how the action makes a person feel. He was reprimanded again but allowed to maintain his job. Soon after, the COVID-19 pandemic began, and the rules for social distancing prohibited the opportunity for high-fives and hugging, so that was no longer a problem.
I would be lying if I said every day at work is now perfect for Sean, and there are no longer any incidents. Sean would someday like to be a full-time employee, but for now, he is happy making more than $14 per hour, and he has his afternoons free to exercise and ride his bicycle. Lessons learned about oversight of work-related stress and monitoring social behaviors on a daily basis have been invaluable. Employment is empowering for everyone, including adults with autism. Employers providing support services that can help explain difficult social situations, which even neurotypical people endure, will be the next step in helping to solidify employment for young adults with autism. Otherwise, it is possible that without this vigilance, most young adults with autism will likely fail multiple times, be misunderstood, remain unemployed, or be unemployable because of prior events that they had difficulty navigating because of their autism.
- Christensen DL, Maenner MJ, Bilder D, et al. Prevalence and characteristics of autism spectrum disorder among children aged 4 years - early autism and developmental disabilities monitoring network, seven sites, United States, 2010, 2012, and 2014. MMWR Surveill Summ. 2019;68(2):1-19. https://doi.org/10.15585/mmwr.ss6802a1
- Baio J, Wiggins L, Christensen DL, et al. Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveill Summ. 2018;67(6):1-23. https://doi.org/10.15585/mmwr.ss6706a1
- Schall C, Wehman P, Avellone L, Taylor JP. Competitive integrated employment for youth and adults with autism: findings from a scoping review. Psychiatr Clin North Am. 2020;43(4):701-722. https://doi.org/10.1016/j.psc.2020.08.007
- Whittenburg HN, Schall CM, Wehman P, McDonough J, DuBois T. Helping high school-aged military dependents with autism gain employment through Project SEARCH + ASD Supports. Mil Med. 2020;185(Suppl 1):663-668. https://doi.org/10.1093/milmed/usz224