Ask an Autistic #3 - What is Autistic Burnout?

[Intro music: “I want to write a song, to shine a light. Be the change we want, set things right. We’ve been waiting in the dark, for so long.”] Today I’m going to be talking about something that I feel like isn’t really addressed by the community of autism experts and professionals, and that is autistic burnout. I’ve heard of this from other autistic advocates and adults, and I’ve read writings from autistic people on the topic, and actually recently in the past year I’ve been going through autistic burnout myself, but I’ve never read anything by neurotypical researchers or doctors on the topic, so I’m really happy to be able to bring this information to you.

It’s kind of tricky to define because it’s different for everyone. But how you get to the point of autistic burnout is by spending a lot of energy over a long period of time. Your mind and your body are both under— under a lot of stress, and you may have a lot of demands going on in your life, and you just— you might— you just have too much going on, and then you reach the point of autistic burnout. And it’s kind of like your brain is just exhausted and cannot go any further. And some people who experience autistic burnout, they kind of panic, because suddenly they feel like they’re getting more autistic.

So I see a lot of questions from autistic adults and teenagers and they’re very worried, they think, you know, "I’ve been doing great, I’ve been doing school, or a job, and I’ve been passing as neurotypical, and then all of a sudden, burnout happens and I feel like I’ve regressed, like I’m more autistic." And I get questions like, "Is it possible to become more autistic?" and to that I say, well, you’ve been the same level of autistic your whole life, it’s just you were able to function at a different level before. You had more energy to expend, your brain was under less stress, you had less anxiety, and now you have reached burnout stage. In children, the warning sign that a burnout is coming is an increase in the level of meltdowns. Now, for children who have autism, meltdowns happen when they have a physiological flight or fight response. Their body and mind gets to the point where they can’t handle any more sensory stimulation, or stress, and so they have a meltdown. And they can’t help it, they can’t stop it, meltdowns are awful, they feel terrible— meltdowns suck. And the best thing to do is try to avoid them. But when a child is approaching autistic burnout, there’s an increase in meltdowns, and this is a warning sign.

Chances are they have too much going on in their life, or there’s been a big change recently. And this could be anything from starting school or preschool, to any kind of new therapy, new adults in their life… Basically any kind of change, even good change, is hard for autistic people, and in children it can add this extra level of stress to their brain, and it can send them into burnout. Now, I’ve had parents describe to me the symptoms of burnout in their children, and they don’t know what it is or what it’s called, and so they refer to it as regression, and they believe that for whatever reason the autistic child has regressed in their abilities. I feel that this isn’t 100% accurate, because, I mean, while you could call it regression, what it is is that the child still has the skills inside them. They still have the ability to speak, or use sign language, or self care skills, or, you know, write with a pencil or whatever. It’s just that their mind and body are so tired and so exhausted, they’re at a point where they no longer have the energy to expend to call up those skills and maintain them and use them.

In adults this can look like, um, what they would describe as maybe a lack of motivation— suddenly school and work, it just— it doesn’t seem that important, it doesn’t even seem like you can get up to do it when you can barely take care of yourself. You don’t have the energy to get up and shower, or the ability to remember where the rooms in your house are, you know, how important is school or work to you at that point? And so burnout can be very confusing and devastating in that way, because you have this life going on and all of a sudden, it comes screeching to a stop. And in adults, I feel like autistic burnout is even more understood because, you know, neurotypical people, they go through periods of time where they’re burnt out. And, uh, and so they— they take a little rest, or maybe go on a vacation, or they lighten their workload and then they go on. But for autistic people, autistic burnout—it permeates every area of your life, and so things like remembering to eat... When I was first going through autistic burnout, I would go into the kitchen, and first it’s "find the food", you know, "where’s the fridge?” and then, if you manage to locate the fridge, it’s “open the fridge” and then all of a sudden, all this food in front of you, and— and a lot of it is in containers and you can’t see what’s inside the containers, and there’s just so much of it— my brain couldn’t process. I know it happens to a lot of teenagers and adults at that time of transition between high school and college. Because you had this great routine going, and you had just got down high school, you know, you just got the hang of it, and and all of a sudden you’re kind of thrown out in to the real world, and you have more demands on you, you might need to get a job, and— and also, at the same time, you’re expected to pass, due to society’s ableist notions of what people should look like.

And I think that burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to, you know, be as non-autistic as possible. When it comes down to it, being something that neurologically you are not, is exhausting. For autistic adults who thus far have been very self-reliant, like, living independently, they might feel even ashamed or embarrassed about what’s going on, and not want to tell people.

But this is really bad, because, you know, when you’re going through burnout, you really do need all the help you can get. Because the only way to get through burnout is to give your brain a break. Really the only thing that can— that can heal an autistic brain that’s gone through burnout is— is time. You might need to consider that for every hour of socialization or grocery shopping that your autistic child does, they can need four or six or 24 hours of downtime to recover. So if time is the most important aspect of recovery from autistic burnout, I feel like stimming and sensory diet is the second most important. Stimming, you know, on its own is very important for the general health and well-being of all autistic people at all times, going through burnout or not. And I talk about this a lot because I’m a huge advocate of stimming and I believe you, you know, you shouldn’t prevent stimming just for the sake of having your autistic child look more normal. Because stimming really is the most important and best tool that autistic people have to self-regulate, to cope with negative sensory input, to interpret and take in the world around them and to process it, and also just to express ourselves.

So if you are going through autistic burnout, or if you have a child who’s going through autistic burnout, it’s important to keep in mind how vital stimming is to the health and mental well being of autistic people. And so if you are autistic and going through burnout... Even if you might not be able to feel what’s going on inside of you, or you’re not sure if you need it or not, you should be taking time out of your day to— to stim. When I was going through the first stages of burnout, which were really hard, my husband had to help me remember to stim.

You know, we would go to the doctor's office and then come home. He’d say, "You know, there was some social interaction there, and it was pretty loud in the waiting room, maybe you should stim a little bit." And he would give me that space and he would help me remember. We— we bought a rocking chair off of Craigslist because, um, rocking is really great for me. And it’s just a great way to self-regulate.

And so if you’re autistic you should try to, you know, maybe make a little note, on your calendar or on your fridge. How are you feeling? Do you need to stim? And if you have an autistic child of course you probably know some of the ways they like to stim. And so note, you know, the ways that they stim when they’re agitated or anxious, and if they start doing that stim then you know, you know maybe you need to leave this situation now. And if you know that there’s a particular stim that they do that soothes them, like for me as a young child, I had a orange and yellow Big Bird blanket, and there was a satiny edge around the blanket, and I would rub that satiny edge against my face and I would rock a little bit, and it would help me fall asleep. It was very soothing. So, after a stressful situation you might want to provide your child with whatever object they like to stim with, or you might want to gently encourage them, you know, do you want— do you want to rock in your rocking chair? or do you want to go in your dark den? You know, those are ways that you can as a parent help your autistic child to self-regulate, and again, give their brain the— the space and the care that it needs to recover from burnout.

I’ll be linking to some resources in the comment section on the topic of autistic burnout, and these are resources that I found very helpful when I was first going though burnout, and so maybe someone else will find them helpful too. And if you have a question that you would like answered via video, feel free to post your question in the comment section, and I might just answer it in the next “Ask an Autistic”. Thank you for watching my videos, this has been “Ask an Autistic”.

[closing music: “I want to write a song, to shine a light. Be the change we want, set things right. We’ve been waiting in the dark, for so long."].