#030 Living Life Close to the Bone

What I’ve Been Doing, Lately: Autistic Burnout

Breathing hurts. My glands are swollen. I have a fever. My stomach hurts. My bones hurt. My brain feels inflamed and soft; non-functional. My coordination is poor. I’m worried I can’t get my cup of tea upstairs without falling or spilling it. Choosing and making food is an overwhelming nightmare of too many tasks and decisions. Nothing seems real.

Another covid-test: Negative. I must just have a bad cold, but how? I’ve barely left my house in weeks, and when I have, I haven’t had any meaningful contact with anyone.

I’m so itchy at night, I can’t sleep. I try to ignore it, but then the itching turns into needle-like stabbing pains. The internet says it could be dry skin, so I drink lots of water and moisturize every day. It could be hives, so I shower with cold water and take anti-histamines. I itch all over in random places and one non-random place: the outer edge of my nostrils itch every night just before I fall asleep.

Even if I manage a good night of sleep, I wake up with the kind of cottony foggy-headedness most people treat with caffeine, but I don’t. It makes my heart race, and it doesn’t help me think any clearer. I’ll still make the same mistakes. I’ll just make them faster.

Plus, I can’t risk getting into another bad cycle of insomnia. I already feel like I’m running underwater with 20 pound weights strapped to all my limbs. I’m Sisyphus, but my boulder has quadrupled in size, flattened me, and rolled off into the distance. How will I ever get it back? How will I start again? Why is everyone else so happy with their boulder?

photo by Stormseeker

The symptoms disappear. They don’t taper off like a cold. They just evaporate, as if they were never there. I could see another doctor, but they always say the same thing: “There doesn’t seem to anything physically wrong with you.”

In a few days, I could be hiking or lifting weights. I could be writing or coding. I’ll be low energy, but I won’t be sick. I’ll remember having been sick, though, and worried about what that means for my life. I have to be so careful with commitments.

What would I ask a doctor now, anyway? “Can you do a post-mortem on my mysterious illness that’s now gone?” That’s humiliating. I can’t take another patronizing response where I’m left wondering if I somehow exaggerated it in my mind or even made it all up. The space it occupies in my memory is a shadowy dark square. I can’t make out the details.

At the grocery store, the cashier asks if that’s a rutabaga I just put on the conveyor belt, and I answer so oddly and nervously that it sounds like it’s actually a rutabaga-disguised bomb. I walk out reprimanding myself. “I should’ve anticipated that question and rehearsed a smooth response in my head.” That’s part of my Sisyphean boulder: anticipating and rehearsing, so I seem like a normal human to all the other normal humans. I didn’t do it. That’s something I used to do so easily and automatically. Not doing it feels a little like I forgot to put on pants before I left the house. My cognitive abilities, which used to be so reliably powerful are now weak and overwhelmed. That’s a warning. The illness is nearby—just outside of my peripheral vision.

This is how I’ve spent a lot of the past year and a half, but especially this past spring and summer: hovering on the edge of autistic burnout. Sometimes, I’m just outside of it. Other times, I’m right in it, but in varying degrees.

Autistic burnout is caused and relieved by the same circumstances that cause and relieve regular burnout. However, autistics experience it differently. We’re more likely to get physically ill, and we lose the ability to do the same cognitive tasks we could before. I’ve read that, sometimes, that skill loss is permanent.

And, autistics, especially high-masking autistics, are much more susceptible to burnout than the general population.

I’m a high-masking autistic, which is what most neurotypical people would call “not autistic.” Why? For many decades, autism was seen through a purely behavioral lens. As long as a person wasn’t “acting autistic” then they weren’t autistic. It’s only after a lot of online autistic self-advocacy has the medical community made a small, very begrudging, concession that maybe not “acting autistic” doesn’t mean we aren’t experiencing autism, especially adults. Some of us are just capable of hiding it. We learned to stop being ourselves after we got rejected enough times for being ourselves. I started hiding it so long ago that I don’t remember a time when I wasn’t trying to hide it.

High-masking autistics are more prone to burnout because we know we’re capable of blending in, everyone around us knows we’re capable of blending in, and there’s little sympathy for the person who appears to be able to conform but refuses. So, a big chunk of my cognitive power has always gone towards hiding my autistic traits and creating the illusion that I have neurotypical ones.

I have sensory processing differences. Many sensory experiences that are either innocuous or merely annoying to most people are intolerable to me. Some of my responses are measurable, like fever or flu-like symptoms, some of them less so, like headaches and nausea. Smells, especially secondhand smoke and vape, give me instant headaches and nausea. If it’s marijuana, on top of the headaches and nausea, I also get dizziness, depression, and insomnia. Even when I’m perfectly healthy, a tiny whiff of weed can leave me dysfunctional for days. I live in constant fear of encountering it alone outdoors and not being able to get home.

My body responds to sharp sounds and surprises like it’s perpetually stuck on a haunted tour. My nervous system doesn’t regulate as quickly or easily as that of a non-autistic. A stressful sound can stay with me for the rest of the day, so another stressful sound hours later is not a separate incident. They compound.

I even struggle in places that are intended to be neutral, like offices. I can’t tolerate fluorescent lights, artificial fragrances, or persistent noise. I’m aware of every person there. I hear their whispered conversations. I listen to their phone calls. I put details together to form explanations for what’s happening and why. Understanding the “why” of things is one of my coping mechanisms.

My sensory experiences are an all-the-time thing, but when I’m in burnout, it’s like someone has turned up the volume all the way up. The smallest sensation feels like a bomb has gone off.

In any social situation, ten high priority things are always happening at once. The person looking me straight in the face and talking right to me doesn’t automatically become my focus. It takes extra brain power to give their words the appropriate amount of attention, while also remembering to look at them in an un-creepy way without getting distracted by their eyebrows, hairstyle, clothes, make-up, or blink rate, and not doing anything too bizarre myself. I’m still listening to all of the other conversations taking place within earshot.

I need extra processing time to communicate in an honest and meaningful way. Otherwise, I’m stuck with preset phrases that I’ve learned from listening to other people’s conversations or responses that I’ve pre-planned and memorized. First of all, these things run out pretty fast. Secondly, they’re really superficial and boring. (Maybe this is why autistics stereotypically hate small talk. I’m lucky, one of my special interests is the weather.)

If I’m going to have a real conversation, I need to do a lot of pausing and staring off into space in a quiet, comfortable place. If I don’t feel comfortable, I get really self-conscious, like there’s a giant ticking clock above my head, and that deletes everything that was in my brain. Most of the time, it doesn’t matter. The conversation usually moves on without me, even when I’m only talking to one other person.

Phone calls are stressful. Auditory language very easily devolves into abstract noise to my ears and digitized sound is already slightly distorted. If I add that to the expectation to respond immediately, a simple call suddenly becomes a high pressure situation, especially if there’s background noise or anything else going on. Most autistics struggle with the phone, but, ironically, we’re required to make calls to access disability/health services. For some reason, I always find it easier when I can see the speaker. I’ve physically travelled to places to talk to people to avoid a phone call.

I got a second autism assessment, recently, to satisfy bureaucracy, not because there was anything wrong with my previous diagnosis. I already knew something was off when the doctor (and yes, he was a psychiatric doctor) kept referring to me as “someone with Asperger’s.” (Aspergers was removed from the DSM in 2013.) He told me that my only problem is that I’m smarter than everyone else, and therefore, I’m bored and annoyed by most people, and this is the cause of all my social issues.

Let me assure you: This is NOT what’s going on in my head. Also, it’s pretty insulting to everyone I know that he thinks I went this long without seeking out other smart people. I’ll summarize his advice like this: You’re smart enough to game the system, so game it. My problem: I tried that, and it didn’t work.

He suggested that I start by reading How to Win Friends and Influence People. I read parts of that book when I was 18, after my boss told me he’d fire me if I didn’t implement it’s suggestions. I never got past the first chapter. I saved my job by smiling more and pretending to be happy when people interrupted me.

A few weeks ago, I was at the dentist. She needed to take an impression of my teeth and put a metal tray in my mouth. She told me to bite down, and when I did, the ill-fitting tray cut into my gums. I couldn’t bite down fully, but she told me to keep trying. I didn’t feel like I could stop and tell her the problem, so I bit down harder and left a big gash in my mouth.

I sat there for five minutes with my mouth filling with blood wondering how I keep ending up in these kinds of situations. I don’t have an intuitive sense of when it’s ok to draw a boundary or complain. Because I process so slowly, by the time I figure it out, it’s too late to do anything about it.

None of this leads to boredom or annoyance with others. It leads to shame and hypervigilance. When I have a social issue, I don’t automatically assume the other person is the problem. Conflict, or even just the smallest hint that I might be in conflict, completely emotionally dysregulates me. So, I’ve learned to watch and wait and hold my breath. I stay on my toes, like a goalie in a soccer match, always ready to make a big catch, or when I think I can, do something risky and impose myself on the game. I almost never do.

Even after a succession of successful social events, I do a lot of combing through past events and fearing/preparing for future ones. Growing up, I’d been blindsided too many times and ostracized too often for me to not feel like a major misstep is always possible. If I have to choose between potentially getting a social situation wrong and not socializing at all, I often choose not at all.

Even when I get everything technically correct, I struggle to feel connected to others because my successful interactions were the result of calculation, not relaxing into myself. Without joy and connection to counterbalance the stress, burnout gets closer.

Despite years believing that I’d one day control them, I have meltdowns, panic attacks, and shutdowns, and the other various other categories of “a person has reached her breaking point.” The stress of my sensory issues plus other distresses, like grief, conflict, or undesirable changes convert into an energy inside of my body. At some point, that energy needs to come out. It can come out in a small steady stream, like fidgeting, or in big controlled ways, like intense exercise.

The stress of conversation means I prefer to talk while hiking or walking, but unfortunately, my intense need for motion often means I’m too far ahead to have a conversation, anyway. I don’t feel safe letting this energy out in socially unacceptable ways, so I keep every aspect of myself as locked down as possible when I’m around others.

Keeping this energy in is sort of like holding in a really big sneeze, except the sensation never goes away. If I don’t find ways to get it out, I will reach my breaking point, and then some serious shit is about to go down.

It’s better for everyone if I just get enough time alone, but even that’s no guarantee. If a single event is distressful enough, it can throw me straight into meltdown. A bad meltdown usually means I won’t get any sleep, and burnout loves an insomniac.

I need a lot of flexibility in my schedule (like, almost an infinite amount). Monotropism (one theory of autism) is the need to focus on one thing at a time. If I’m working on a project, that project is all I want to do until it’s done (or I reach burnout, whichever comes first). I’ll sleep little because I keep thinking and rethinking the same project-related thoughts over and over again until I can actually do something with them (write them down or implement them). This can last for hours or days. All interruptions, even necessary ones, wear on my nervous system. An ill-timed interruption can trigger a meltdown.

I need a lot of recovery time after I do just about anything, but feeling guilty about my scheduling needs causes me to be very sparing about how much rest I allow myself, even if I’ve accomplished more than a neurotypical would’ve if we added all our work and rest times together.

Masking means pretending none of the above is happening, ever, and that I’m engaging with the world in the exact same way as everyone else.

I can manage these things with enough energy and concentration. I can tamp down the anxiety that naturally comes with having been caught too often with the wrong response or no response at all. I’ve taught myself hold still after being asked WTF I’m doing with my hands enough times. I can do it, but wears me down.

I went through a period of years, when I was younger and hardier, where I masked successfully without too much trouble or I thought that’s what was happening. I didn’t think about how I had pretty painful TMJ and bruxism or how I often over-exercised to complete exhaustion, got very little sleep, and still had the energy to be anxious all day. I regularly went several days in total isolation (weeks, if I got the time off work) and looked forward to those times. All of my closest friends were online.

Because I didn’t know I was autistic, I’d adopted the view that my needs weren’t really needs, and I spent my highest masked years self-administering a form of autism conversion therapy. I was clinging to hope that I was “normal,” just not well-trained. And yes, I habitually distinguished myself from “normal” people before I knew I was autistic. I knew I was different. I just didn’t know how or why. The higher masking I got, the more often I used affirmations that contained the words “normal” and “fine.” Like, “I’m a totally normal person,” and, “I’m doing fine.”

I thought everyone had to “game the system,” and I spent an inordinate amount of time keeping track of how well I met the culturally accepted view of success and being weirded out when other people didn’t follow the rules.

I thought that the culturally accepted view of success of a person determined how they were liked, or maybe even how much a person deserved to be liked, like a stacked bar chart, the higher it went, the more people liked you. The only positive was that I thought it was working. My “culturally accepted view of success” stacked bar chart was really high.

I just wanted to belong, and it seemed to be working. Well, it was working until I burned out and couldn’t do it, anymore. I often blame myself for allowing the burnout to happen. Maybe it would’ve worked if I hadn’t felt like I needed to not just game the system, but to master it. Maybe it would’ve worked if I’d somehow held my boundaries better. Maybe I’d have made different decisions if I’d known what a delicate house of cards I was in.

I usually dismiss the explanation I consistently find online: every high-masking autistic burns out eventually. I found it impossible to hold my boundaries when neurotypical society demanded I didn’t. The world is designed by a majority class, and I’m not part of that class. Self-blame and too much responsibility is a big part of high-masking autism. We take on the job of smoothing out all of the rough edges between us and the rest of the world.

My first really big burnout started in late 2008. I didn’t know what was wrong with me, but I crawled along with it until 2012, when I finally made lifestyle changes that would actually allow me to heal. Unfortunately, that meant quitting my job. I had another big burnout starting in 2016 and ended up quitting my job, again, a year and a half later.

I typically try to ignore my burnouts as long as humanly possible, so when it finally takes hold, I can’t get out of it. The really bad flu-like parts usually only last a few days because it forces me to rest, but in 2008, when I didn’t know what was wrong with me, I was getting sick like that once every couple of weeks.

There are no drugs and/or treatments for it. The only effective change is a lifestyle change, and like most people, I can’t control every aspect of my lifestyle because the business of survival often gets in the way. Which means, for those of us who need a particular lifestyle to be healthy, it’s really more of a social issue.

I’m aware that this is long and contains a lot of painful details, but there’s no really no other way to explain what’s been going on with me. I want other autistics to know they aren’t alone and unseen. I want non-autistics to see and understand.

I don’t think autistics experience anything that others wouldn’t experience when put under enough pressure for enough time. I think autistics live life closer to the bone, so we need to make a lot more room for both our humanness and humanity.

Given this, you might have the impression that I hate being autistic, but I don’t. Hating autism would be akin to hating myself, and, while I think that it’s normal for people (especially late-diagnosed autistics) to have self-worth issues, that’s not the same as hating ones own thoughts and perspectives. I think, as a species, we have a biological imperative to love our own thoughts and perspectives. It’s about staying alive.

My extra sensitivity means that I often appreciate things that many other people barely even notice. My cataloging of details means that I see patterns other people don’t. My extra focus means I’m never bored. There are times when I find just breathing, and doing nothing else, fun. When there are no obstacles to me just being, I get so much pleasure out of just being alive. Because, when I notice everything, I see that it’s all pretty amazing.

Want to understand a little more about masking? Here’s a youtube short (about 1 min).

Want to laugh? Here’s an autistic comedian doing a set (about 6 min).

Want to be part of the solution? Here’s a video explaining why many autistics distrust autism research and how the current narrative around autism hurts us (about 16 min).