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.
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. 💚💚
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…
Thank you so much. I believe I am autistic. This is so honest thanks
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”!
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.
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.