Autistic Burnout Is More Than Burnout

I am nearly out of spoons at the moment, so I’m going to turn a few twitter threads into a blog post because I think it is an important topic. I highly recommend you read the responses to this thread, which I am posting below along with another thread.

Note: When I say “neurotypical” in this post I am mostly referring to abled non-autistic people. Most disabled people experience burnout, but autistic burnout in particular is still different (even if you have other disabilities, like I do).

Why It’s Different

I think I just realized why autistic burnout is so bad.

It’s because when abled non-autistic people reach their limits, they can’t go on.

When autistic people reach their limits, they continue because they know they have to continue to be considered valuable.

I was told that if I get burnt out, I won’t be able to do anything, so I should rest.

What I didn’t say because I was still thinking it through, is that when I get burnt out, I go on for weeks or months more because that is expected of me and I Cannot Let People Down.
And so often autistic people are constantly pushed to their limits even at 4, 5, 8 years old. Constantly.

We are so often already at a level of stress from neurotypical expectations and our environment that neurotypical people don’t even comprehend it.

Most autistic people operate on a higher level of stress at a constant rate. Neurotypical people will have lows, mediums, and highs. Sometimes they’ll stay at a high for a long time and burn out. But autistic people are never allowed low stress if we want to be seen as human. I don’t know if abled non-autistic people realize how long I can run on fumes for. Because I’m so used to that being expected of me. And I do think dissociating plays a role in being able to do this.

I don’t just “burn out” when I run out of energy, I go until the gas tank has negative space.

Here’s the difference for autistics:
I don’t realize in the moment that I’m running on empty. I think I still have plenty of fuel left to get me going somewhere. Only to later realize, weeks or months later, that I have smoke coming out of the engine. That’s when I realize I should stop the car.
I don’t even have a “gas is empty” indicator on my dashboard, I just know if I don’t go 60 miles per hour people are going to be upset.

If I reflect on my current energy levels and stress, I’m probably in burn out right now. But all I’m thinking is “Well I just need to get to this part and then I’ll rest..” or “I just need to finish these next 3 weeks out and then I’ll rest..” At this point I don’t even know if 1-2 days of rest would help because I’m already so far gone in terms of stress and energy levels (I’ve been trying to work at least one day every weekend).

I think I would need a week off, and I can’t afford a week off right now. So I work. Maybe this is why non-autistic people don’t often understand when we can do something but when we shouldn’t?
When we say we can’t and then they tell us to do it anyway?
So we continue to go along because we know there’s no other option and fighting is too much energy.

Neurotypical people might have to rest after high stress situations, but all I can think about right now, all I know is that I’m going to pay for this. When I keep going this next week, and the next, and the next, I’m going to pay for this.

I’m going to pay for this in being able to physically speak, in being able to think coherently, in being able to plan, in being able to eat.

I just know I’m going to pay for this but there is no other option.

So often, there is not another option for us.

Using the word “tired” doesn’t do what I’m feeling justice. I have a sleep disorder, I know what tired, sleepy, exhausted means. It’s more like completely worn down, especially mentally. But my brain still thinks “I have 5% energy left so it’s fine” I am hungry and instead of eating the breakfast I have sitting here I wrote this entire thread. My stomach’s been growling for the last 3 hours and I’ve just.. completely ignored it. Because I’m not hungry.

It just can’t be compared to non-autistic stress. It’s not the same. It’s like everything is being held together by a piece of tape, and so everything “looks” like it’s working for quite a while, and then the piece of tape falls off and all the pieces just go everywhere. And the actual worst thing I can do to myself right now is try to convince myself that I’m fine, which is what my brain is currently trying to do.

“It’s not a big deal, you’re fine! Look you’re eating now”

Actually just gaslighting myself cause that’s what I’ve had to do before. 

We use the words “autistic burnout” but I’m realizing that it’s not just burnout like neurotypical people define it,

It’s burnout past burnout. It’s working while in burnout already.

That’s why it’s so difference and so detrimental. We’re not stopping at burnout at all. 

Why Do We Burn Ourselves Out?

A thread from a few days later:

Last night was the first night in a week (or maybe 2 weeks?) that I didn’t wake up between 4-6am. I finally feel mediocrely rested (“rested” for me, someone with a sleep disorder), and my first thought upon waking up was “Oh I have enough energy, I should work today.”

Then I remembered the last few days, the thread I wrote. And I think if I go back to work mode right now, I’m not going to sustain myself for the rest of the week. The sooner I start, the sooner I’m going to crash. So I’ve decided to maybe not immediately do that.

I think autistic people often play the role of “useful” to create relationships, to obtain any ounce of support or understanding. It’s natural for us to want to go back to being as useful as possible because that’s the only way the world ever wants to interact with us.

Our world doesn’t support “needy” autistic people, burnt out autistic people, non-special-skills autistic people. People only care if you show your usefulness. We’re so used to operating this way, we don’t even think twice about it.

It’s the default for most disabled people, but I think for autistic people, usefulness means connections with others (usually non-autistic people). Usefulness means we won’t be isolated. It means having friends, having external approval from parents, bosses, mentors.

I think there is a fear that if we cease being useful, no one will love us or support us or even just care about us. We have constantly changed ourselves so that other people don’t react negatively, don’t find us rude or mean or argumentative or know-it-alls or uptight.

To cease being useful is to face that fear and know that some of our relationships may crumble because of it. That people might see us as selfish, that they won’t care when we don’t have something to offer anymore, when we don’t play therapist or go the extra mile at work.

To Autistic People:

I will still care about your well-being even if you can’t work.
I will still care about you even if you can’t do what you have defined your identity around.
I will still care about you even if you don’t feel useful.
I will still care about you even if you have nothing to contribute.
I will still care about you even if you can’t do advocacy or can’t “stand up for yourself” like so many people may tell you to do.

I will still care.
I hope that others will still care too.

You are not useless.
Human beings who have limitations are not useless.
Human beings who cannot “produce” or cannot “work” are not useless.
Everyone deserves to be supported and cared for.

Even you.

21 Replies to “Autistic Burnout Is More Than Burnout”

  1. I’m not autistic but I’m a disabled wheelchair user and this is completely relatable. Convincing the world my life is worth living is exhausting all on its own without the fact that we cannot have bad days otherwise our value is diminished and then my life must be miserable because I’m disabled. I feel this even as a neurotypical.

    Liked by 3 people

  2. The most eye-opening and honest article i’ve read in a long time!!!
    We just instinctively do it to.ourselves, without even thinking about it, and from a very young age😢
    Thank you so much!!

    Liked by 1 person

  3. I retired from one career in January (I still kept my part-time community college instructor job because it’s online), and I went through all of this. I’d been working at over 100% capacity for…. well, since grade school, and I told myself it was 98-100%, so I could do more. The first few months of retirement, I just felt lost because of the loss of usefulness. I felt I had no place, no value. I’m getting past that. Teaching is easy since it’s online, so it fills me. But the tasks of taking care of a house and household are sometimes too much for me, and I sometimes feel burnout or the tremors of a meltdown just from having to unpack an Amazon order, for example. So many noises (the fridge!), so much input to process, way too much I feel responsible for. It’s hard. Maybe I’m still in burnout.

    Liked by 2 people

  4. This was a great read. For once I didnt feel alone in my struggle. It was articulated so well that I sent it to my partner. So they could better understand me because I myself could never put that into words but I resonated with it all.

    Liked by 2 people

  5. At first I felt called out; then I realised that this is the reason why my last career as a mechanic flopped due to sleep issues. I was always trying to make shit work, keep people happy; fix everything. I would simultaneously get awards for discovering obscure issues while getting written up and disciplined for ‘giving attitude’ when my ability to “play neurotypical” failed because I had no more energy to give.

    Well hell…

    Liked by 1 person

  6. I don’t know how to thank you for this text. Perhaps you can imagine how grateful I am to you when I describe what happened: I read the text yesterday, shared it on my Facebook page and started thinking. Something in my head *clicked*, I thought to myself ‘that’s exactly it’, slept quite badly last night, the dreams were very revealing, went to work, made an appointment with my doctor and went on sick leave.

    I’m 56, late diagnosed autistic, very conditioned, retired for a few years but took a temp job that suits my SI: medicine = I work in a corona testing centre = constant contact with complete strangers, very close contact, lots of explaining, lots of talking = too many of far too many.

    Here in Germany it is difficult to be recognised with burnout, it is even more difficult to have autistic burnout recognised, because this form is not known here, or of course it is known among autistic people, but the medical profession does not recognise it.

    I would like to translate the text and publish it on my blog. Would you allow me to do that? I respect your copyrights and would clearly highlight your text as the source.

    Liked by 1 person

  7. Neurotypical people think they have a lot on the table. Imagine having to hear all stimulus and not being able to determine which stimulus is most important. I see my adult son still struggling with that. I talk with him for length of time he can stand ( always trying to over stimulate him).
    I read about problems facing autistic people when he was a child. Helping him feel good about himself is my goal . Always !!!
    Always tried to remember to give him info he needed in small bites to avoid losing him. My husband had to remind me to do this.at times. I have ADD which makes me too chatty for my son. He has ADD too. My son. So takes Adderall like me. Adderall helps him and I slow down and listen better. Helps him to remember more. Risperdal is a mood stabilizer(often given to autistic people) . Tried various dosages and found one that works best.
    He has gone to community College but not decided on major. He still needs to finish for his AA. And has worked almost 2 years at Home Depot. Doing socialization typically done in high school. Covid shutdown began after he found job. Socially speaking it gave him chance to experience people. Was usually in his room gaming. Which killed me.. it soothed him. Autistic people are more prone to gaming cause it is peaceful to them. Autistic people can be late bloomers.

    Liked by 1 person

  8. Yes! Every word of this! I also find that since the things which trigger us into meltdown don’t trigger NTs into meltdown, we aren’t believed when we say we are at our breaking point, and that contributes to us having to continue on long past when we should have stopped, making burn out even more severe. Excellent post, thank you for shining light on this!

    Liked by 2 people

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