Adult Autism: How I Learned To Stop Emoting & Love the Burnout9 min read

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Like most autistic chil­dren, I was a highly emo­tional kid.

As a tod­dler, I cried so hard I would run out of air and pass out. I also passed out when I expe­ri­enced sudden pain. I was tested for epilepsy.

Every cold I got was a Death Cold, and I was not silent in my misery. Every pain was The Worst Pain Ever Experienced by Humanity.

And dis­ap­point­ment? Well, I did not handle it well.

Let’s not even get started talking about my phobia of death and dead bodies, my over­ac­tive imag­i­na­tion, and my grand pas­sions for ani­mals.

I gen­uinely believed I felt more deeply than other kids. Perhaps I did. Perhaps I was just totally lacking cog­ni­tive empathy and prag­matic lan­guage skills.

Why not both? Let’s say both.

When our family dog died I suf­fered an agony of grief over his loss that I hope I will never expe­ri­ence again.

My emo­tions were over­whelming.

In adult­hood, this began to cause me prob­lems.  One job had me sob­bing in the x‑ray room, rocking and trying to sur­vive my migraine.  Another job drove me to mental break­down. I was diag­nosed with depres­sion and gen­er­al­ized anx­iety dis­order and med­icated accord­ingly.

Another, much more kind and accepting work­place was sur­prised when I burst into tears one day because I was hungry and tired.  That wouldn’t happen to me now, because finally, FINALLY, I have learned to con­trol my emo­tions.

When my beloved father died I put down the phone, gently gave my young son the news, sent him off to play, and sat down at the kitchen table.  My friend, whom I was vis­iting, said, “…cheese­cake?”

“Yes please,” I said, and I ate it.

A month later, when my beau­tiful fourteen-year-old sheltie — my pride and joy — had to be put down, I sobbed for a few min­utes over his body, then straight­ened up and said, “Okay.  Let’s go home.”

How did I achieve this miracle?

All I had to do was fully accept and under­stand that my feel­ings don’t matter.

It started when my hus­band got sick.

My partner was, in many ways, my care­taker.  He cooked, he cleaned, he did the taxes, he planned the vaca­tions, he man­aged the money.  I did small jobs like vac­u­uming the floor and cleaning the bath­room on Saturdays so I could feel like I was con­tributing, but really, he did most of the work.

He assured me that he didn’t mind, that he liked caring for people. But for the last six years he has not been able to be that person.  A series of debil­i­tating con­di­tions have left him bedridden and fragile. My days now revolve around causing him as little stress as pos­sible.

No matter how much he insists that my feel­ings and needs are impor­tant, I dis­agree. I can’t over­look the fact that if too much is asked of me, I could melt­down or shut­down… even break­down… but if too much is asked of him, he could lit­er­ally die.

So tell me… whose needs are higher pri­ority?

And then there are the two kids. They need to be fed, taken to school, soothed when they are hurt, read to before bed. It doesn’t matter whether I feel up to doing those things or not.  They are my chil­dren and they need love and care.

Ultimately, everyone in the house­hold, with the pos­sible excep­tion of the cat, comes before me.  Not because they are selfish or because I am worth­less, but just because in-danger-of-dying and unable-to-feed-oneself comes before gets-tired-and-upset-really-easily.  Over the years, I’ve become the ulti­mate master of sucking it up.

Like most autistic people I fear and loathe change. In the last year, I have lost my father, my dog, my father in law, and I am about to lose my child­hood home as my mother sells it to join me out West.

And I still haven’t ended up in a mental hos­pital. That demands KUDOS, man.

I’m living the autism dream– I’m in the place where shitty things happen, and I shrug and deal with it and move on.

Disclaimer: there are some side effects.

Everyone knows about autism melt­downs, but there are two other kinds of autistic ways of han­dling stress: the shut­down and its chronic cousin, autistic burnout.

If shut­downs occurred on 3 con­sec­u­tive days, the child seemed prone to them for up to 3 weeks.

Shutdowns and Stress in Autism
by Ingrid M. Loos Miller and Hendricus G. Loos

As mytho­log­ical and mighty as my emo­tional sup­pres­sion capacity has become, it does come with side effects.

When autistic people are overly stressed, we suffer shut­downs. Our ability to interact with others goes down to zero, we become extremely sleepy, and we basi­cally shut out the world until we can reboot.

Every moment that some­thing isn’t being actively asked of me, I am in shut­down.

I combat the chronic sleepi­ness by drinking litres of Diet Pepsi– a same­food of mine– and passing out at night some­times without even reading to settle down, which I have needed to do all my life in order to sleep.

Turns out the cure to insomnia is shut­down!

When I can’t sleep, which is most of the time because the kids are around and need me between 6 am and 9 pm, I dis­ap­pear into the land of words. It’s like recharging and pow­ering down at the same time– reading social media, reading a book, or writing.

I power down when my kids are out of the room, when they are finally asleep at 9 o’clock at night, and when they are in school and I don’t have to go to work for another half hour.

My poor partner misses me doing things like, you know, speaking to him without first being spoken to. But it’s not per­sonal. I just can’t interact with the out­side world unless an actual force like my child or my work cal­endar tells me to get off my butt and suck it up again.

Autistic burnout is a phe­nom­enon well rec­og­nized among autistic people but not yet for­mally named or inves­ti­gated by researchers.

There are lots of studies on care­giver burnout for those looking after us (no doubt it is part of my part­ner’s health prob­lems, too) but not so much on our burnout from trying to meet the demands of a neu­rotyp­ical world.

There has been pre­lim­i­nary research sug­gesting that autistic people who “cam­ou­flage” (i.e., suck it up and act normal) are more prone to depres­sion, anx­iety, and sui­cide.  But it’s okay, there are pills for that. I’m on them, and they’re working.  I’m not depressed. Effexor doesn’t let me be.

Autistic Burnout, though, also comes with loss of skills. The famous “regres­sion” that autism is so known for is believed, by autistic people, to be caused by burnout.

I’ve never been good at keeping orga­nized, cleaning, cooking, and such. I found such things chal­lenging and onerous, and I was happy to let my hus­band do much of it for me.

But I could do it.

Throughout uni­ver­sity, I pre­pared my own meals, washed my dishes. Not rou­tinely or reli­ably, but I could and did often enough that I was mostly able to care for myself.

Yeah. Um. Not any­more.

The last few times I have tried cooking I have burned either myself or the food.  Loading and unloading the dish­washer is some­times too much.

Don’t even talk to me about things like vac­u­uming or cleaning the bath­room. They just don’t happen any­more. We get a maid ser­vice in once a month or so and that man­ages to pre­vent our house from taking on a life of its own and walking away.

I used to shower every morning. Now I’m happy if I can manage twice in a week.

I don’t bother to feed myself break­fast or even lunch a lot of the time. Yes, I’m hungry but you see, I don’t pay atten­tion to such triv­i­al­i­ties as feel­ings any­more.

On an exec­u­tive func­tion rating scale that my psy­chol­o­gist gave me, I rated worse than 99% of people on exec­u­tive func­tion.  Small rodents are sig­nif­i­cantly more func­tional than I am.

“How can this be,” you wonder, “if your chil­dren need to be fed and cared for?”

Well, let me tell you — it’s chal­lenging.  Breakfast is doable. Pour cereal, heat oat­meal, toast waf­fles. For them. Not myself.

Lunch is harder. Luckily, I can still manage Kraft Dinner or a basic sand­wich some days, and my hus­band’s best time of the day is late morning/early after­noon, so some­times he can put some­thing together.

My son’s school lunches are often left­overs or a bunch of snacks like cheese strings and gra­nola bars dumped into a bag.

Dinner… well, some­times we order pizza or some­times my hus­band is having a good day and can throw together some spaghetti. But most nights, I go to my friend’s house and make her cook for me and my two chil­dren along with her own family.  Dinners are a multi-family affair of three adults and four kids.

I supply gro­cery money, or pick up some chicken, or empty the dish­washer so I can feel helpful, then stand by use­lessly watching my friend cook for me and my chil­dren.

She and her hus­band are my care­givers now.  I hope I don’t burn them out.

Sometimes I miss being able to clean the bath­room on a Saturday, or reor­ga­nize a room, or cook a meal without injuring myself or dam­aging our cook­ware. 

Sometimes I wish I could do some­thing about all that laundry on the floor.

Sometimes I wish that I could do more for my kids than stare at my com­puter or phone only to rouse myself when they ask me for some­thing.

Sometimes I wonder if I’m just building a wall of unfelt grief and panic that will some day come crashing down and wash the rest of my life away.  But that hasn’t hap­pened yet, and in the mean­time, my new muted emo­tions can be a blessed relief.

It’s what I need right now. It’s how things are.

7 Comments

  1. I know you prob­ably don’t want to hear this, but as someone who did the camouflage/masking thing for decades before finally burning out in a hor­rific case of burnout that was only ever growing worse I just want to say: your needs are still real. Your emo­tions are giving you sig­nals about what your mind and body need in order to func­tion. The longer you go without meeting those needs the more (per­ma­nent?) damage you are doing to your­self.

    Your husband’s con­di­tion does not sud­denly mean your needs aren’t important- that’s that binary thinking we do often fall into when stressed, right?

    I’m really glad you have the resources to hire a maid and that you have the com­mu­nity for com­munal meals — but those things are just keeping your heart beating. They do nothing to assuage the spir­i­tual and emo­tional needs that you are crushing as a coping mech­a­nism, and when the crash comes for you it will be cat­a­strophic.

    At best I see this as a tem­po­rary emer­gency mea­sure — you have turned off life sup­port on your space ship because you need to divert more power to the shields, sure. But this is not a viable way to go through life, you know? That life sup­port is nec­es­sary.

    Anyway, I really hope you are able to find a better bal­ance, but I also under­stand that healthy bal­ance is a priv­i­lege that many of us can only aspire to. (I’m nowhere near there myself, but I’ve been working on it for years and finally making progress.)

    Hang in there, and please try to remember that you matter too — because if you pre­tend that you don’t for long enough you will lose your­self. 💚💚

    1. Author

      Thank you. I’m absolutely aware of the damage it’s doing to me- my com­plete loss of exec­u­tive func­tion shows it — but there’s no way around it, you know? Kids gotta be fed. Money gotta be earned…

  2. Thank you so much. I believe I am autistic. This is so honest thanks

  3. I’ve been doing the exact same things for a few years now, thank you for putting it in words for me to read and rec­og­nize!! I often feel that this is “safe mode”, like for PCs. Only main func­tions can be per­formed like working to make ends meet, caring for the kids.…etc.
    Everything else just has to wait for more power, that may or may not ever come back! Talk about the “Walking Dead”!

  4. This was my 2017–18. I’m still slog­ging through the taking care of 3 kids and working, but being sep­a­rated gives me three nights a week to feel my feel­ings. Thank you so much for writing this, I’m so excited to read your other work.


  5. My teenager was just diag­nosed, and when I blogged about that, someone sug­gested I read as many first person accounts of adult autism as I can find. Your post has, um, given me a lot to think about. The mood of the first part was so upbeat I kept thinking, well, this doesn’t seem so bad. Well, then it sort of crashed, and I got a taste of what people get when they read the stuff I write. Ultimately though, I found it encour­aging that you’ve been able to step-up when nec­es­sary. My son is going into stepping-up boot camp, because now we know this isn’t just a bunch of stuff he’s going to out grow.

    I hope you’ve carved out a small amount of self care since you wrote this.

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