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.