A little over a year ago a colleague of mine slipped a piece of paper across the table with a note scribbled on it, it read “you should write a book about autistic burnout”. I smiled and laughed to myself. I thought, me? Write a book? Yeah, right. Having been surrounded by people who seem to write and publish new books every year, I was a bit intimidated to think that anyone that I admired thought that I might be anywhere near ready to take on such a huge challenge — but the thought lingered. Could I actually write a book?
The meeting ended and I tucked the note away in my filing cabinet and went about my day. I found myself daydreaming as the weeks went on I got a little braver. I started to remember childhood journals filled with stories, essays that made teachers cry, long form blog posts, and extra long twitter threads. Maybe writing was a thing I wasn’t so bad at after all? I floated the idea past my husband and a few close friends. No one really knew what autistic burnout was, hell, I couldn’t even really articulate a full academically-sound definition, but everyone was excited about the prospect of me trying to write a book, even if it was on something they’d never really heard of before. Tentatively encouraged by their support, I felt that familiar spark of hyper focus start to ignite, so I began where I felt most at home, research.
I scoured the internet trying to look for every source I could trying to unpack and better define autistic burnout. Because burnout is such a unique and underrepresented topic, I broadened my scope to include perspectives shared by those with similar neurodivergences as well as those from disabled people who may or may not be neurodivergent themselves. I wanted to hear and read as much as I could about the topic from everyone, everywhere. I taped a note card outline to my office wall. I started to write. Things started out great. I wrote a few chapters. Suddenly nothing felt good enough. I was an imposter.
Maybe it’s from having years and years of formal education drilled into my head but I felt the desperate need for data. I had years and years of personal experience (and anecdotes from others as well) but a loud voice inside kept telling me this couldn’t be just another memoir…no one wants to read my memoir! So as I combed Google for hours, hoping things had improved since my initial encounters with the topic a few years earlier, it was shocking to learn that there weren’t that many more resources available today than there had been when I was in university. While not the first to discuss the topic, blog posts from Musings of an Aspie and Judy Endow were starting to become more widely shared. I also found a YouTube series called Ask an Autistic, created by Amythest Schaber, which discussed burnout and many other topics related to disability and autism in a very approachable way.
Despite these invaluable resources circulating with personal accounts of individuals experiences, there was an astounding lack of awareness or even discussion dedicated to the experiences and impact of burnout in academic and non-autistic/disabled professional circles. When information is (or perceived to be) discussed in primarily in small, online pockets, access and resource sharability is a huge issue. Most of my queries resulted in supports almost entirely related to work-life balance and coping with the abstractly-defined concept of “stress”, with very little connection to disabled life.
Recently, Autism Womem’s Network shared this wonderful infographic summarizing some of the more commonly shared characteristics of autistic burnout on their social media platforms.
After talking with a few of my friends and colleagues, I quickly realized that I had to make a choice. I could write book directed at academia and non-autistic/disabled professionals (not that disabled academics/professionals don’t also exist of course!) or I could create space and perhaps eventually write a book by and for autistic and disabled people about burnout. I chose the latter, put the book on hold, and decided to take a different approach. I wanted to create a space for the community and discussion I felt was so desperately lacking around the topic. So I did a bit of research, revamped my website, and started hosting a weekly twitter chat called #AutBurnout, with topics based in part on the outline I already had written for the book, and partly on whatever I happened to be interested in at the time. The chat grew steadily, with regular participants and new folks stopping by every week. I was so happy it was gaining traction and conversations and about autistic burnout were starting to be shared.
But, looking back now I realize I was avoiding some pretty big red flags and ignoring many of the earliest warning signs my own impending burnout. My sleep schedule, which has never bern great, became completely unmanageable and functioning on three hours or less became the norm. I spent most hours outside of work laying on my couch, avoiding text messages, and refreshing my Twitter feed without really processing any updates. Slowly the amount of food and clothing that I could tolerate became limited to the same two or three outfits and meals in quick rotation (mostly prepared foods, ice cream, and crushed ice). *My friendly neighborhood Taco Bell staff now know my custom order by heart. The list goes on…
Having experienced several longer periods of autistic burnout previously, you’d think that I would have become adept at prevention, however in the moment it’s easier said than done. As the weeks turned into months, life offline began to get more complicated, personally and professionally. I began to strain against supports that no longer seemed to fit. I needed space and time to create something new, knowing getting out of an established routine was going to be really difficult. As a disabled person with chronic health issues, hosting a weekly anything can be a challenge, so I made a concerted effort to be as upfront as possible when my situation changed, including when the chat moved from it’s regularly scheduled time to it’s current hiatus.
Discontinuing the chat was not an easy decision, in fact the routine and getting to talk with everyone was one of the most positive parts of my week, but my support needs offline had to become my top priority. However, I feel better knowing that for now the hashtag still lives on in the Twittersphere even without a hosted chat, and that people are still using it to share comments and resources related to autistic burnout. While I do plan on returning to the chat or creating a similar community space around the topic in the future, #AutBurnout will also exist for the foreseeable future.
As for me, I am slowly working through things offline, recovering from autistic burnout, adding a few more pages to the book along the way.