By Katie Oswald, Executive Director, Full Spectrum Agency for Autistic Adults
Overcoming Autistic Burnout
If you knew me when I was younger, you would be really surprised to see me today. My autism went undiagnosed until I was in my 30s, so no one understood my struggles, including me. The world was so overwhelming when I was a kid that all I wanted to do was stay inside reading books and watching television with my mom. I loved learning, but I hated school. I resented it, really, because it tore me away from my solitude and tossed me out into a noisy and chaotic world that was too much for my brain to process.
Challenges Throughout Elementary School
In preschool, the teachers thought I was “slow” because I stood in the corner watching everyone and not interacting. They wanted to put me in special education. But my parents said that wasn’t where I needed to be, and my kindergarten teacher recognized me as bright. In first grade, I was placed in the program for the academically talented (PAT).
In the 80s, these classes were still segregated from the general population of students. For better or worse, I was grateful to have the safety net of the same group of kids from one grade to the next, to hang out with on the playground and avoid bullies. I had friends. Looking back now, after hearing so many autistic stories of isolation, I’m eternally grateful for that.
Like many adolescents, autistic and neurotypical alike, my struggles began in middle school and increased throughout high school. I was constantly overwhelmed, struggling with depression and anxiety, and going full throttle toward autistic burnout. I went to a variety of therapists who all diagnosed me with something different – depression, generalized anxiety disorder, obsessive compulsive disorder – and prescribed many different medications, but there was no mention of autism from any of them.
By my junior year, I was barely functioning. I was cutting myself, having frequent meltdowns, and just trying to get through the day. I had my driver license, and some days I could handle going to school, but other days I just drove around because I couldn’t talk myself into walking into such a chaotic and loud environment. No one seemed to notice that I wasn’t there. Since I was not diagnosed, the teachers thought I was just strange. My panic attacks and meltdowns could be frightening, and they may have been relieved to not have me there. I don’t know. But no one ever called my parents, and at the time, I was grateful.
I was struggling so much to get through each day that the school board allowed me to go to school for half days my senior year. This was a perfect amount for me. I never skipped school my senior year and I was able to finish my studies and graduate with the rest of my classmates. I often think about how much better my school experience could have been if I had this accommodation all along.
Finding the Right Path
After high school, I tried going to community college, but I was not ready for going to college full-time. After trying a few different majors, I dropped out and took a job at a fast food chain. The job worked for me for five years, but eventually I wanted to do something different. I decided to go back to community college and take one class at a time until I figured out what I wanted to do. I really enjoyed math classes and after three years, I was able to improve my GPA enough to transfer to Michigan State University as a sophomore in Statistics.
I want to highlight something really important here. Oftentimes society pressures people into doing things a certain way. We are expected to go to high school, go right to a four-year degree program, and go to work. On top of this, many of us are expected to get married and have children. Everyone is different and that formula doesn’t work well for everyone.
It’s fine to go right to a four-year institution after high school if that works for you. It is also fine to take a year or two off to figure out what you want, go to a trade school, go part time, or whatever you think will work for you. It’s important to decide for yourself, and not let societal pressures influence your decision.
Developing Life Skills
Although it took me longer than I expected to get to where I am, I’m certainly proud of all of my accomplishments. I earned my BS in Statistics with an Actuarial Specialization and a second major in Russian Language. I completed three study abroad programs; two in Russia and one in Antarctica. After finishing college, I struggled to find a job. I applied to a Peace Corps program at Clemson University that combined my graduate studies with Peace Corps service. I earned my MS in Applied Economics and Statistics and served as an Economic Development Volunteer for two years in Uganda. In all, I traveled to 17 countries on all seven continents.
College and world travel helped me develop life skills like confidence, independence, decision-making, and problem-solving. I learned to be an independent thinker and live a self-determined life. I had a career for almost three years before I accepted that it was too much for me to handle. I was constantly overwhelmed and teetering on the edge of burnout once again. I was barely functioning and rarely talked to anyone outside of work. When I got home, I had comfort food and curled up on my couch to unwind. I could just barely hang on until the weekend, which I spent in complete isolation recovering from the week and preparing to do it all over again the next week. My life was purely about survival and it’s difficult to find value in that.
Getting a Diagnosis
Although I was seeing a therapist for my autism at this time, I didn’t understand that a diagnosis would allow me to ask for accommodations under the Americans with Disabilities Act (ADA). Autism diagnosis is typically not covered by insurance and can cost as much as $4,000. With an unemployment or underemployment rate of 80-90% in the autism community, many autistic adults remain undiagnosed. I was lucky enough to have had a good paying job that allowed me to save up some money and I was able to find a place that did the diagnostic process for $1,000. Many are not this lucky.
Finding My Peers
I started learning everything I could about autism, and quickly realized that I could learn a lot more from other autistic people than I could from professionals. My peers have a lived experience that paralleled my own in a way that was almost uncanny. When I interacted with them, we spoke the same language and easily understood each other, where many neurotypical people were not able to understand.
Most of my interactions with other autistics were on the internet, so I looked around for a group in my area for autistic adults. Finding nothing, I decided to start one myself. I started Ann Arbor Autistic Adults meetup group in 2018 and we have grown to over 500 members over the last three years. I’ll share more about our group, and the importance of peer groups in the autism community, in my next article.
Katie Oswald is a nonprofit founder, facilitator, and autistic self-advocate. She founded Full Spectrum Agency for Autistic Adults in 2018. Through Full Spectrum Agency, she facilitates peer support groups, discussion groups, and many other programs for over 500 autistic group members. Katie partners with organizations in Michigan to teach sexuality education, social and communication skills for relationships, and self-determination. She also advocates for autistic adults through corporate workshops, conferences, and community presentations. An avid traveler, Katie learned the majority of her self-advocacy and leadership skills through world travel. She has visited 17 countries on all seven continents, including two years in Uganda with the U.S. Peace Corps. For more about Full Spectrum Agency for Autistic Adults: www.FullSpectrumASD.org and https://www.meetup.com/Ann-Arbor-Autistic-Adults/