Autism burnout is a state of incapacitation, exhaustion and distress in every area of life, as defined by a 2020 study to define autism burnout. It’s unique to the autistic experience and not similar to regular/non-autistic burnout.
It’s not a state of burnout, or feeling burnt out. Autism burnout is called autism burnout because the battery is dead. Non-autistic people know autism burnout by the neurotypical definition and terminology: autism fatigue or autism regression.
I thought my autism burnout began late 2021, but I think that was the climax of my autism burnout and that it started closer to early 2021. I’d just moved into my first apartment, I’d worked overtime three months prior in 2020, and I realized no one actually cared that I was autistic — just that I was no longer their burden to bear.
In December 2021, I went on a leave of absence. Fast forward to now, and I have not been able to return to work since without hitting complete overwhelm and exhaustion. Part of experiencing autism burnout is dropping the autistic mask. It no longer fits now, and I have no idea how to make it fit.
When I scroll TikTok, I see a lot of autistic people out there experiencing the same — a lot of late-diagnosed autistic adults, specifically.
I’m Jane, and here are eight things I did — and continue to do — to help me recover from autism burnout.
Edited to add: I lost my independence/fell homeless October 2022. as autistic burnout prevented me from returning to the workplace. I’ve also left toxic family and am finally on my way to regaining my independence as stress-free as possible. Society really needs a way for us autistic folk to be able to recover from autistic burnout — and exist without future generations developing burnout.
1. Decreasing & minimizing obligations
Doing all the things is me! I do lots of things very well, especially in times of stress! However, autism burnout prevented me from doing anything so I had to stop doing everything cold turkey.
It essentially looks like deconstructing your life and putting it back together piece by piece, in order of what doesn’t completely deplete your energy.
Instead of rebuilding your life puzzle, you’re building a new puzzle. Not every old piece will fit into your new life puzzle, but that’s a good thing — this new life puzzle allows you to embrace your autism, not force you to hide it.
Few autistic people have jobs where they can receive accommodations, sans challenges and retaliation, if they have jobs at all. Not every autistic person has the privilege of accessing resources to help them gain accommodations, either. The accommodation process requires doctors who support your accommodation needs via approval — autistic adults can seldom advocate for themselves, and the entire accommodation process removes autistic people’s autonomy and agency.
There is no accommodation for burnout, even if it’s related to neurodivergence. You’re expected to just…deal with it, and neurotypical people often think that anyone who can’t needs to be institutionalized.
“Exhaustion” doesn’t feel like the proper word for the exhaustion I felt when I couldn’t ignore autism burnout anymore.
Sitting up felt like trying to escape patient restraints. I can use this simile, because doctors would restrain me in childhood because my autistic stims and Tourette syndrome tics were “annoying”.
Default solutions to autism burnout include pushing the feelings of overwhelm away. This is what a lot of us were conditioned to do — to continue pushing on. American work culture views hospitalization for extreme exhaustion and fatigue something to be celebrated, because it means you’re working hard.
Autistic people seldom get away with doing anything less than a hundred percent, simply because they’re expected to mirror their non-autistic peers.
Even when I was tired and in a position to sleep, guilt and environmental sounds kept me awake. Sleep isn’t always possible, but rest is. It can look like laying in bed, but can also look like watching TV for entertainment because your brain can’t function well enough to read.
I’ve binged a lot of television and even recently started recapping shows because of it — thing is, I’m watching a lot of the same shows and movies on repeat, the same way I listen to music. During the first few months of my autism burnout recovery, I didn’t watch, read or listen to most anything. I couldn’t. I watched some autistic content creators on TikTok, but I spent most days in silence.
3. Socializing as little as possible
For the most part, I talked to no one. Or I spoke to them very little. Messages, emails and notifications went unanswered for long periods of time.
The most socialization I got some days was talking to my cat, her vet and vet techs.
I experienced an autistic shutdown for two weeks. Socializing expended my energy quicker than speed cleaning or driving.
Removing the autistic mask and learning to be myself, I’m realizing I’m mostly non-speaking.
Not forcing myself to speak
I remember some sessions in elementary school where myself and some classmates attended group sessions where we had to say difficult words and tongue twisters. The goal was to get us laughing and talking about it. Mostly, the goal was to get us speaking.
Speaking has never felt natural to me by default and has almost always felt like exercise. But if you didn’t speak in group long enough, you didn’t get cupcakes, candy or a pizza slice. At Happy Healthy Kids Camp, a week-long summer day camp, you didn’t get jelly cups if you didn’t sing the songs or do the camp cheers and chants.
It was always, Speak up! Use your words. I don’t have time for this if you’re not going to talk to me. Doesn’t feel too good when other people refuse to speak, does it?
I remember back in middle school that I wanted to be a mime for Halloween, because mimes don’t talk, and my mom said no — because mimes don’t talk, and she didn’t want to put up with that.
I remember when teachers would call on me and I’d struggle to form words. They presumed I wasn’t paying attention, when speaking just required a lot more effort than paying attention despite the loudness of the classroom — both visually and auditory.
Not relating to other people thinking out loud finally makes sense.
Communicating with Deaf people, even though I don’t know enough American Sign Language to communicate effectively, feels natural because I don’t have to form sounds with my mouth.
4. Freestyle stimming
You’ve heard of freestyle dancing. This is the stimming version of that.
I currently have the complete freedom to stim —
- as much as I want
- however I want
- whenever I want
The thing about returning to employment is that I have to give this up…I don’t feel that I can do that without negatively affecting my autistic burnout recovery.
5. Reducing stimuli
Contrary to what a lot of family thought I was doing during the early months of my non-working period, I did not watch any TV. I barely even listened to music. I could not deal with the auditory sensory input from most everything.
Galaxy, my cat, does this hum sound these days — likely because, for a month, that was the most I could do on days I didn’t have to take her to the vet. We’d go back and forth with hm and hmm. We still do that sometimes. She didn’t do that when I got her.
Aside from my cat, my apartment was as quiet as possible.
I ordered food a lot because I didn’t have energy to drive and wasn’t going to cook — but then I learned some places were literally right across the street?? So I started going to them on my own. I drank Carnation breakfast protein shakes — chocolate tastes best, which is saying a lot. The primary goal was to feed myself, however it happened.
These days, I’m eating at home a lot more, but still relying heavily on “struggle meals” and “executive dysfunction meals”. I guarantee you those are going to be the first 50 recipes I post on this blog, minimum, because I literally cannot with more complex recipes.
6. Spending 10-30 minutes outside with my cat
I almost lost Galaxy after I got her spayed. She got loose downstairs and ran, and she did attempt to return home, but doesn’t know how to do stairs. I only take her out my apartment door, and she does not want to go downstairs.
I’m literally a helicopter cat mom, okay. I’m terrified. She is my life. I love her like she’s my own child — and I know what that love feels like, so YES, I can say it.
I put on her harness and collar, when I’m feeling okay about taking her outside. We stay upstairs, with my door open.
I have to ensure the sensory aspect — mostly loud noises from vacuum seal bags containing blankets — is calm, even if the wind blows, or else she will spook and run away from the door.
Mid-morning is the best time because the temperature is just right, but there is currently construction happening outside.
We haven’t been outside lately like we used to because construction has been so noisy lately, and I’ve been terrified and anxious/nervous ever since the second day of her spay. Because I almost lost her, and she’s literally my lifeline.
7. Reconnecting with my faith after healing from religious trauma
I was baptized in 2008. My faith journey has been a long, winding path, but I’ve never stopped believing in my savior.
My struggles involved coming to terms with being both LGBTQ+ and a Christian instead of having to choose one or the other when my sexuality was never a choice for me — just something that happened to me, sans outside influences, before I even knew what any of it meant.
They involved struggling to fit into white, able-bodied, neurotypical congregations that acted ungodly outside of church.
A megachurch traumatized and turned me off of churches for over a decade.
I don’t believe the Church with a capital C is a place; it’s a people. However, something about going to church nourishes my soul. Knowing a congregation of people are also relishing in their faith comforts me beyond articulation.
The church I attend now? I’m surrounded by good people. I’ve considered becoming a member, but am not yet.
I pore over a random spread in my Bible most days before I start my freelance work.
In the morning and daytime, I open my blinds to welcome in God’s light. It saves a bit on electricity, but the occasional warm embrace feels like a hug. It reminds me,
This is what I get to feel every. single. day.
I received a glimpse of this feeling last year, on my days off work, and those were the best days of my life. I heard the birds chirp and the trees dance in the wind.
My life is better this way. My quality of life is greater with this. My stress is low, and my worries are rare.
I have the freedom to be myself and cater to my needs.
The last meltdown I had happened because a Motorola update rendered my phone useless for two hours despite me factory resetting it. My phone is my only method of contacting people, and I heavily rely on Google Maps to go places or else I will get lost.
I am currently free to be me, all the time, even if people don’t like it. At least God loves all of me.
8. Remaining as stress-free as possible
I’ve had a lot of meltdowns in the past six months.
Most of them happened between December and February, but then I had about three in April in the same week.
In the beginning, my meltdowns were caused by the “tiniest” of things — but really, those tiny things were just the Mentos in the Diet Coke:
- the package that was delivered to the wrong address, that Amazon said was sometimes marked “Delivered” even though it would be delivered the next day
- the frustration of building my steel platform queen bed all by myself, because myself was all I had
- the lock to my apartment door not locking properly from the outside because apparently I had to be rough with it
- the technology at work not working properly
- incl. Auror’s engineering team deciding to remove accessible keyboard functionality from their site because their design was “incompatible with natural keyboard shortcuts” (ummm, that’s called a design flaw) and they did “not create the software for [disabled people]”
- the loud noise of my blender
I’m doing well in the stress-free department. Outside forces — like phone updates, weather, safefoods not being in stock, etc. — stress me out to the point of meltdowns sometimes.
But other wise, I am doing well. I am mainly stress-free. The key is to not allow people to tell me whether they approve or to let them project their worries onto me that I need to be doing X.
I’ve realized that, actually, I’m doing exactly what I need to be doing. I’m listening to my body, letting it guide me. Some days, my energy levels are high enough that I can accomplish a lot. Other days, doing two loads of laundry and one load of dishes is all I can do.
I’m still in autism burnout. I’ve been freelancing full-time and considering returning to work part-time to supplement income. Thing is, full-time positions are oddly desired right now and open part-time positions pay extremely low.
More than that, I would have to relinquish everything I do to recovery from autistic burnout, as well as wear socially appropriate clothes. Socially appropriate clothes are not autism-friendly.
My family wants me to “go back to work”, even though I have been working. I wholeheartedly feel as though it is a mistake and an excuse, and will be detrimental to recovering from autism burnout the same way returning to work mid-2021 was. I only lasted six months before I was in utter distress.
Autism burnout is a lonely feeling when you’re surrounded by non-autistic people who don’t understand. My family is comprised of people who believe in just doing it, because it’s life! I am by no means inflicting judgment on them, but hoping to illustrate the problem:
Autistic people in autistic burnout literally cannot do the things they can’t do, even if they have to. You lose skills. You’re like a phone’s dead battery. There’s nothing left, or there is only ever half of what there used to be because you don’t have time to wait for the battery to charge before you have to unplug it again.
Forcing us to push past this leads to suicidal depression, which we are more susceptible to than our peers.
I created an employment opportunity for myself, but…I did not seize it. I honestly think the last time I worked — February 23rd, 2022 — is going to be the last time I’m an employee ever again.
My only focus currently is continued recovery, figuring out who I am without a neurodivergent mask, and figuring out this self-employment thing because I’m in it to win it this time — all without falling into toxic hustle/mindset culture…I’m starting to think people who do the hustle never had an IEP. (If you know, you know.)
If you liked this post and found it helpful, please buy me a pretzel. It’s a $4 metaphor and will help me continue doing this full-time.
If you loved this post, please share or buy me a pretzel:
Hi Jane, thank you for this post. I was diagnosed last year, at 33, and the more I’m reading of this, the more I’m recognising. I need time off, as sick leave, but I have people depending on me – it’s a stress cycle, only making things worse!
I’d love to go freelance but it’s not really a thing in the industry I’m in. Any tips?
If you are skilled enough in your industry, you could possibly establish yourself as a freelance writer with those topics. You also don’t have to work in the same industry if you go freelance. I was in retail before I became a freelance writer. There are other freelancing types as well — pretty much anything anyone can outsource.
autnotes 004: depression, linzer cookies, technical difficulties | Sometimes Izzy
[…] routine that worked well for me earlier this year — but it was cool then, and it was before Galaxy’s spay and my almost losing her outside. I’m terrified now, and I know it’s in part to her needing more harness and leash […]
Thanks for this. I’m a week into sick leave, and have reached the point where I need a note from my GP if I’m going to be off any longer. Which is more stressful, that one phonecall or going back to work? I was only diagnosed a year ago and so much has changed, and the return to on-site working has broken me. I can’t do it anymore, I’ve masked for 20 years and it has torn me apart.
I deeply feel this. I quit my job because I just…couldn’t put up with the neurotypical BS anymore. Every time I tried returning to “regular” work, I fell back into the mask trap, had constant meltdowns and anxiety, and felt so stifled that I would cry in the shower.
Unfortunately, research doesn’t make it into the medical field for 2-5 years, and even then it still takes another 2-10 years to actually be practiced. The research about how masking effects autistic people exists, it just takes too long to benefit the autistic adults experiencing it right now. And being an adult, we don’t have that time available to us to wait.
😤 I’ve been freelancing. I wish I started earlier this year, though my brain and did need rest, because I probably would have struggled less financially.
It seems that autistic adults are just figuring out how to navigate autistic burnout themselves.
In all of my research, I found autistic adults either started their own businesses during autism burnout (because of autism burnout) or started walking dogs via Rover. Ultimately, it seems the traditional work landscape is incompatible with autistic people long-term. 😵
I could never get a note from a doctor, because she didn’t understand autism. 😔 I was asked what I was taking for my autism, “to manage stimming” and other symptoms. 💩
I wish you the best. 🥺
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