autistic burnout, explained

Autistic people are experts on what is good for them personally. What’s needed, however, isn’t necessarily what non-autistics would expect. Often, neurotypical people think they’re being kind and solicitous, but they’re actually making things worse. And trying to explain it to them is nearly impossible — especially when you’re already in distress.

Case in point (with certain details changed): I [used to] do a weekly luncheon with what has grown into a large and noisy group of women. A few of us take on certain responsibilities for a few months at a time, like getting a rough count that morning and calling ahead to the restaurant, or maintaining a phone list, or what had been my task, collecting the money from everyone (usually via app) and paying the bill.

You probably know where this is going. You may be thinking, an autistic woman has no business getting involved in something like this. Well, you’d be right. In my defense, when I first started going to this luncheon, it was a pretty small and cozy — and quiet — group. It has since grown into a monolith that includes 20 women or more. As such, I have been going less and less often, because in my spoon-deprived state, I don’t have anywhere near enough juice to shield myself from the cacophony, the requisite hugs, the smells of the women and the food, and the difficulty in properly directing my focus among a group of a couple dozen chatty women.

I let everyone know last month that I needed to turn over the check duties because of my autistic challenges, giving the group time to find a volunteer to take over for me. There were a few logistical details I needed to pass on, so after a four-week hiatus, I went back to do the handoff to the new volunteer.

As soon as I walked into the restaurant, I knew it was a huge mistake. I knew it was going to be very, very, very bad. And it was.

The women descended upon me like the butterfly gauntlet of yore, and each one wanted a long hug and a conversation about how I was “really” doing. I lost count after being subject to this by seven or eight women. It was all I could do not to run out of there screaming.

Worse, the woman who was taking over check duties for me couldn’t make it and I had to stay to pay the check one last time. I was forced to sit there, picking at a pastry I didn’t want and sipping coffee I didn’t need until everyone was done eating and talking. I parked at the furthest end of the table, put ear plugs in, and pretended to be watching videos on my phone until it was finally time to pay the check. Then I had to go around and make sure of the totals and tip and such. Once I paid the bill, I bolted before anyone could say good-bye.

The pain and anguish I suffered during this experience exceeds description. It was like having thousands of tiny shards of glass bouncing around inside my body. I felt like a too tightly coiled spring in a too small box, pressing painfully against the inside walls. I couldn’t talk. I could barely even look at anyone. I found myself counting minutes and even seconds through this torture until I was finally released.

But how do you tell someone who genuinely likes you, is worried about you and wants to comfort you that the best thing they can do is not touch you, speak to you, or even look at you? I can’t imagine having that conversation with most of these women. (Thankfully, there were two women that knew better, recognized my distress, and just leaned in for a whisper of encouragement before withdrawing.) Even an entry point to a conversation like that completely eludes me.

Yes, yes, I should just approach each one and explain that as a depleted autistic woman, I am too easily overwhelmed by touch and conversation, even hugs and expressions of concern, and that I need to be left to my own devices in this situation. And I would have to say it as kindly and sincerely as possible, so I would have to mask the whole time I was doing it, performing my elaborate performance of posture, facial expression, gestures, tone of voice, and ambiguous words that neurotypicals need to not get their feelings hurt. All of which would be so taxing as to completely negate the point of the exercise.

In short, when I do not have enough spoons to deal with another human, I am far past the point of having enough to explain why. At the exact moment my burnout is debilitating, I’m robbed of the tools to ask for what I need. For instance, a public meltdown, which I only narrowly avoided, is not useful.

At the luncheon, it was all I could do not to cringe when the women hugged me, to whisper “okay” when they asked how I was doing, not to push away their scrutinizing faces as they scanned mine for how I was actually feeling. I wanted to collapse into myself like a black hole and vanish.

I shouldn’t have gone; I knew I was in a bad space before I went, but I just wanted my commitment to be over and done with so I could stop going and quite possibly never return. And now that it’s over I’m so relieved I could cry, and did, in fact, cry in my car after I left. I didn’t realize how hard it had been on me until I was free of it.

All the things that people say you should do to improve your quality of life, spending time with friends, exercising, even meditating, they all involve spoons. Spoons that an autistic in burnout simply doesn’t have. It’s only recently that I’ve been able to accept that, for me, self-care is total solitude and sensory deprivation. Some days, even texting is more than I can manage.

It’s hard to allow myself these things. And I want to extend to every other autistic experiencing burnout that being alone doing nothing isn’t laziness. It’s medicine. It’s life-changing, necessary medicine.

If only I could explain it to the butterflies.