Employment Journeys

About the Author

Brenda Dater, MSW, MPH, is the executive director at AANE and the author of “Parenting Without Panic.” Brenda is a mom of three, and her eldest is an Autistic transgender woman. Brenda has facilitated parent support groups for over 20 years and thoroughly enjoys creating an environment where parents can find the support, information, and the community they need.

I remember feeling nervous about applying for my first job at age 13. I rode my bike to the purse store two miles from my house and filled out an application. After a short conversation with the owner, where I turned bright red as she stared at me and asked questions, I was offered the job and worked about 10 hours a week through high school. By the time I was 30, I’d held six jobs. I didn’t get every job I applied for and had periods where I needed multiple jobs to cover my rent and food. But I’d also found work that interested me, and I learned so much from coworkers and mentors along the way.

In contrast, my Autistic daughter, Rachel, has had a very different type of employment journey so far. In spite of some anxiety about juggling school, therapy, and executive functioning tutoring, Rachel was excited her high school placed her in an internship at a local public access television station because she loved her television production class. One day, however, her boss gave her more work to do than she could finish. Rachel didn’t communicate her need to leave at her regular time even though she hadn’t finished all the work assigned. When she realized Rachel had left before finishing the work, her boss called to tell me this was unacceptable, and she wouldn’t be able to give Rachel a positive reference as a result. Rachel felt shocked and discouraged that one mistake meant she lost a reference for future jobs.

In college, Rachel held one more year-long research assistant job, but this was a completely different experience. Her history professor came to our home to talk to Rachel about the position and to learn more about what type of support she would need to be successful. Rachel had a very positive experience working with this professor, and he became a trusted mentor as Rachel considered graduate school.

That was the last job Rachel ever held, and now she is 28. When she graduated from college, she tried to find work, but only got one interview, which didn’t result in a job offer.

Rachel’s job history is not unique. Up to 85% of Autistic individuals with college degrees are unemployed or underemployed. Trying to navigate the neurotypical work-world can feel impossible, and movement in making employment more accommodating and equitable for all is agonizingly slow. But Rachel and I wanted to share a few things we have learned about employment through her experience that have helped shift our perspective in a more realistic and patient direction.  

Throw away the yard stick. Like many other Autistic adults, Rachel was often hard on herself as she was close to graduating from college. She thought she needed to be fully independent, work full time, live away from home, have a significant other, and be able to manage all the responsibilities that growing into adulthood brings immediately. One of the most helpful things Rachel and I have done is to reconsider and extend the timeline for employment and independence. This has helped Rachel and our family be supportive and realistic about the right pace that encourages growth without causing so much stress and anxiety that leads to overwhelm. Focusing on your own growth over time is more helpful than comparing yourself to others.

Employment progression is often not linear. In December of her senior year of college, Rachel experienced a major depressive episode and had to take a break from school. This delayed her graduation by a few months and instead of jumping into job searching, she needed to focus on addressing her mental health issues for the first couple of years after college. 

Once those were mostly stable, she was able to begin with smaller demands to build up her capacity, like finding activities that were not as stressful as a full time job. She went back to graduate school and began volunteering at a local food pantry. 

The right supervisor can create opportunities for success. Having a supervisor who is open to exploring accommodations and supporting Rachel’s needs is crucial. Her successful work and volunteer experiences included supervisors or mentors who were able to communicate job expectations clearly and provide needed accommodations, like letting Rachel wear earbuds while she worked, or having a quiet space to focus. 

Employment flexibility opens up tremendous possibilities. I think one of the most challenging aspects of employment for Rachel, and for many Autistic adults I know, is how the amount of energy and effort available for tasks varies. For Rachel, if she has a bad night’s sleep or she gets bad news and is worried about a friend, she will not be able to compartmentalize that and go forward with her work. She truly has less capacity in those moments. And yet at other times, she can be very focused and productive. Of course, we all go through shifts in our energy, but for Rachel, she is acutely aware of her limits and has learned to protect her wellbeing. That does mean the workplace and her job responsibilities need to be able to withstand these shifts when they occur. It’s certainly healthier for all involved and minimizes Autistic burnout. 

Rachel is expected to finish her graduate degree by next May. She has said that she’d like to wait to start thinking about work until after she graduates. We’ve talked about some beginning steps she might start with ahead of time, like getting back in touch with her job counselor at MassAbility and talking with her professors about what type of work might be available to her. Rachel says she could not have done both these things at the same time six years ago. Time, volunteering, better health, and more resilience have helped her see she can do these types of initial steps concurrently while finishing school. 

Looking for a job that’s the right fit can take a long time. Many Autistic adults don’t have a financial safety net or family support if they lose employment or can’t find sufficient work to cover their expenses. We all need to advocate to ensure government disability supports and benefits are available when needed in addition to supporting improved working accommodations to help Autistic individuals succeed in their work environments and have the financial security they need during periods of unemployment.

Please be patient with yourself and with your loved ones who may be experiencing an uneven employment journey. It can take time to find the right employment that will help them use their talents, and provide an environment that will offer the accommodations for what they need and value them for who they are.