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Let's Talk About (Autistic) burnout, baby


Row of matches with one burned out match in the middle to signify autistic burnout

The first time I hit burnout I didn’t know what it was.


I was seventeen, and at the end of my senior year in high school. I was burning the candle at 27 ends, with school, working a part time job every afternoon, applying to colleges (mailing in a paper copy of the FAFSA, people, this was the OLDEN days). I had a semblance of a social life, which was new for me. I was working tech for the drama department and doing rehearsals for the shows.


Things were pretty good, and I was enjoying myself.


And then…


The week before graduation I got increasingly sick, woozy, non-functional until my mom took me to urgent care, and they figured out what was wrong. Initially they had thought it was hepatitis due to my liver’s increased size, but it turned out to be mono. I got a gamma-globulin shot and was told to just “rest”.


I had no choice about the rest. I had zero energy, and for a period of about three days I was so out of it I don’t remember most of what happened.


I ended up missing my graduation, missing the senior trip (Mazatlán, anyone?), and just missing out on the whole closure of my high school years.


I was down for six weeks before I tentatively went back to work part time. And spent most of the summer couch-bound before I finally had any energy at all.


At the time, I didn’t realize this was burnout. I also had no idea I was autistic.


By fall, I was “better”, and started college, etc. New Adult Life had begun.



 


The second time I hit burnout, I was in my late thirties.


I had a lot on my plate and was going non-stop with work and kids and changes in my relationships. I was still burning the candle at 27 ends, but it looked different because there were so many more people and situations pulling at my time and energy.


This time it was a much slower degeneration.


Like that story about a frog who is put into a pot of water that’s then slowly turned up, so that it doesn’t realize it’s boiling until it’s too late, I didn’t realize what was going on until I crashed and burned.


First, my physical health got increasingly worse.


A job change was good mentally, but I took a financial hit that added increased stress.


My relationship was not great, but I didn’t have the mental bandwidth to make a change.


It took a job change into a highly toxic job with outrageous hours for me to finally hit burnout to the point where I was struggling with basic activities.


I can still vividly remember sitting on the couch for two hours trying to get the energy up to get into a shower.


Waking up exhausted no matter how much sleep I got.


Everything seemed to take 100 times the energy it used to, and I had 100% less energy available.


A lot of balls got dropped.


This time, I knew it was burnout. I still didn’t know I was autistic.


This time, the road back to feeling human took a lot longer and was a lot harder.


I finally fired the doctor that had been telling me my labs were “normal” (as they slowly got higher and more out of whack over a period of five years), and I found and worked with a couple of good doctors.


I got on appropriate medication and slowed my life ALL the way down for a while. I quit the toxic job, eventually working temporary jobs that were simple and low-demand.


And I started learning to listen to my body.


This time it took a full year before I had some energy, and two years before I felt something close to normal. I wasn’t where I had been before, but I was functional.


After this experience I recognized that I could not just “do whatever” and expect not to have some negative consequences. My decisions had impact.


I became extra careful about noticing how I was feeling, checking in with my body and energy levels regularly, and adjusting as needed long before it got to my personal “point of no return”.


I felt more in tune with my body than ever, and I remember feeling “I got this”.



 


The third time I hit burnout, I saw it coming.


Strangely that both helped and didn’t prevent it from happening. I could see what was going on and could do my regular shifts and changes in the moment, but because a lot of the stressors were external, and completely outside of my ability to control, it did not prevent me hitting burnout.


I was working at a group practice and starting my private practice at the same time, working 6 days a week, and driving 16-18 hours a week to my practice locations.


I knew this was a LOT.


But I had a plan.


I was only going to be doing that for about a year before transitioning completely into my own practice, which had been a goal I’d been working on for almost 10 years. Then I could structure my days to fit better with my needs.


And then…


Pandemic.


Forest Fire and month-long evacuation into a hotel.


Home renovation.


Windstorms that damaged trees and property.


Broken arm (not mine).


Increased medical appointments that required long drives, and took over my days off.


It was a LOT.


But honestly, the past three years have been a lot for everyone.


As a therapist, every one of my clients was struggling with increased anxiety and stressors. Everyone was trying to navigate this completely surreal situation, with mostly inadequate support.


During this same time, I had been doing more work exploring newer research in autism, specifically how autism can present in women and femme presenting people, and how masking which is often used as a coping strategy can contribute to autistic burnout.


I was realizing that how I experience and interpret events in my life as well as how I have approached life in general that seemed so differently than those around me, actually was different.


I was learning that the things I had learned to do to “fit in”, had been adding daily stress to my life that was not as noticeable (to me) in the short term, but over time led to increased stress, decreased ability to deal with life, and leading meltdowns and burnout.


I was learning how much of my life my main coping skill had been dissociation. And books.


It has also explained better why some things have been so difficult, when I didn’t think (or had been told by others) that they “should be easy”.


It was such a lightning bolt moment to not only understand myself better, understand why my difficulties had been difficult, but also to connect with many other autistic people in my age group who UNDERSTOOD me.


It was wild.


And validating.


So…


Now I had more information about how I worked best, and what things might have higher impact on my overall well-being… but also had less control over what was going on around me.


The external impact had reached the edge of my ability to handle it.


I did change some things that I could. And that did help a little.


But this was going to be a bigger process than just making a few changes.


I had much less bandwidth to work with this time.


I had to get serious about shifting things on a foundational level.


What I had thought my entire life was “just burnout”, turned out to be “autistic burnout”, and that was going to require a different approach.


So, what’s the difference between autistic burnout and more typical forms of burnout?


The answer is a bit vague, as the research is still catching up to the nuance and experiences of autistic adults.


The ICD-10 (The International Classification of Diseases), which is the standard for diagnostics in medical health, defines burnout as an “occupational phenomenon”. It is defined as “chronic workplace stress”, that results in:


  • feelings of energy depletion or exhaustion;

  • increased mental distance from one’s job, or feelings of negativism or cynicism related to one's job; and

  • reduced professional efficacy.

  • In a qualitative study conducted by the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), defines autistic burnout as:


“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterised by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.” (Raymaker et al. 2020)


As summarized in the same paper,


“Autistic burnout is a state of physical and mental fatigue, heightened stress, and diminished capacity to manage life skills, sensory input, and/or social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs.”


Let me repeat that last bit... "...severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs."


For me, this meant that the tools I was using to survive in the world, were slowly wearing me down to the point of “I can’t”. And each time I’d “recover”, through rest and lowering my expectations and demands, I’d feel better. Then I’d go right back into the same situations and using the same tools and behaviors until it happened again.


A never-ending cycle of masking and suppression of needs that was not sustainable.


If this is sounding overwhelming familiar to you, you might be feeling a combination of "Yes, that's it! Followed quickly by, “So, now what?”


First, understanding and VALIDATING your experience is very important. You may have spent a lot of time being invalidated by others, or by yourself, with thoughts of “I should be able to do this.”


Unsurprisingly, this doesn’t work.


Understanding what is going on with you, and validating that your experience is a very real, very human reaction to living in the world (such as it is), sets you up for being able to look into next steps.


I’ll discuss these next steps, in Part 2, Autistic Burnout Recovery.


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