The price of Autistic masking, or Let there be stims!

I used to know what my sensory needs were, or at least well enough for your average child. I knew, for example, that labels in clothing were very bad and horrible. My mother, to her credit, attempted to order clothing without labels and diligently cut the labels out (and then redid it again when the first pass with the scissors still left something distinctly wrong at the back of my neck). I was less inhibited about stimming, not that anyone called it that. It has taken me years to get that knowledge back.

There was a fad in my fourth grade classroom of pouring glue into the pencil holder inside your desk and letting it partly dry, then playing with it like it was putty until a teacher noticed. I was usually a very rules-oriented child, but there was something so soothing about having something in my hands while the teacher talked (at least until I got in trouble for playing with glue). Yet as my peer group started to outgrow childhood toys, I had to learn more stealthy ways of stimming. Gel pens became my go-to for years; I just needed something kinesthetic to do with my hands so I could process all the auditory information during classroom lectures.

I also became more adept at masking as neurotypical, not that I had those words. I skipped a grade, not that it was something I intended to do. It’s just that the coursework part of classes was so mind-numbingly easy, and the boredom was like torture. I was one of those annoying “gifted” kids for whom the answer was just there. I am actually a terrible student because for the most part I never actually developed study skills. I just understood how to solve or answer a problem by looking, mostly. For math classes, I didn’t quite know how I knew the answers and frequently got in trouble for not showing my work, at least until I learned to double check my answers by “showing my work” the way that everyone else solved the problem. I buried myself in novels and learned a sense of what words meant, but on the rare occasions people asked me to define a word with other words I would flounder. It’s like the words routed back to concepts; not pictures exactly but the context I’d read them in.

I didn’t know how to handle the social aspects of knowing the answers, though, nor did I know how to handle the social fallout from skipping a grade. So when I began high school, you could say I assigned myself an additional assignment: blend in as much as possible, so I stopped accidentally alienating my peer group through things like “answering rhetorical questions” and “raising my hand every time I knew the answer to a question” and “dressing not quite like a girl” (because, spoilers, I’m not actually a girl, I’m non-binary and genderfluid).

I became very adept at camouflage, at mimicking the girls around me, their mannerisms and interests. As part of my camouflage, I learned how to wear uncomfortable clothes. I scoured the stores for girly shoes that didn’t make my feet hurt too much. (My hypermobile joints still regret these decisions.) Occasionally I wore make-up, but never quite felt comfortable in it. I always felt like it would be revealed that I was secretly a fraud. I didn’t realize that wearing masks has a price; you can lose yourself if you spend too long pretending to be someone else.

Now I’m older and it feels like I’ve spent so long trying to find my way back to the self I was before I gave it all up for the illusion of belonging. I’m comfortable enough with myself now that I actually do belong as myself, among people who will actually accept me for myself. I’m okay telling the people who dislike me that it’s their problem.

Yet that camouflaging took a toll. To mask as neurotypical, I had to learn how to suppress all the signals from my body that were screaming “labels are wrong!” and “you hate this texture!” and all these other important messages about my sensory needs. I don’t know if what I did was just to bury it deep inside of me, or train my brain to ignore it, or just teach myself to constantly dissociate ever-so-slightly from my body. But whatever it was I did to give myself the illusion of “normalcy” and being neurotypical, it wasn’t worth the price.

I feel like I made a very bad bargain with a sea witch, my voice and incredible pain in exchange for a set of legs. Except I don’t actually remember signing any bargain, and also the sea witch was myself. I would like to return this terribly ill-fitting neurotypical mask in exchange for an awareness of what my bodymind actually needs. It would be nice to keep select skills, like the ability to make polite small talk with strangers or make phone calls in a pinch. There must be a less toxic way of doing them, a way that doesn’t leave me feeling ill in the pit of my stomach and slightly disconnected from my body.

Copenhagen_-_the_little_mermaid_statue_-_2013.jpg

[Public Domain Image of the Little Mermaid statue in the Copenhagen harbor]

Or the days when I misjudge how many phone calls I can actually handle, and then find myself sobbing in a ball on the floor or huddled under a pile of blankets. Those phone calls were not worth it.

I feel like perhaps I am managing to shed the old neurotypical mask, like a snake sloughing its old skin. It’s a rough process with some scary bits in the middle. I’m delicate underneath that mask; I overestimate how much I can handle.

Yet there’s such a joy when I get it right. When I connect with that piece of myself that I thought I’d lost but really has always been there, buried, forgotten, screaming, waiting. I thought that self was lost, that I would have to go searching forever and calling to find them again. But they were always there, hidden, waiting for me to look. I think a bit of that scene in the Disney animated Peter Pan (apologies that my brain has picked a deeply problematic movie to mine for images), when Tinker Bell is injured and Wendy has to say “I do believe in fairies” to bring her back. That magic piece of me was there, and perhaps it was faded and shrinking and small. I just needed to believe in that self to bring them back. It took time to build up enough belief that yes, I am allowed to be myself and people will still like me, but they’re back.

When I allow myself to pick clothes by texture and I’m wearing the good ones, I hum with pleasure putting them on. There’s an extra little bounce of confidence in my step, even if I’m wearing clothes that are “wrong” by weird neurotypical fashion rules like don’t wear navy blue and black together. Trust me: I have made it work and actually rocked it.

Recently I found out that actually, being a passenger on the highway is a little too much vestibular input for me; it’s ever so slightly on the edge of too much to handle. My girlfriend understands that if the car is moving fast, I might need to stop talking and stim. It keeps me from needing to melt. How could I have spent so long and not known this? No wonder car rides so often make me grouchy.

Cats on my lap, purring: the best.

Yarn in just the right texture on lacquered wooden knitting needles in a simple pattern with my favorite audiobook as a companion: it’s so good it’s like it’s taking the bits of my brain that have scattered and hidden throughout the day and coaxing them back into order.

Tea in a hand thrown mug, my hands wrapped around it, just inhaling: it feels like family.

The smell of a rainstorm, on the rare days the pressure change hasn’t already flattened me: it makes me want to dance with joy.

[TW for mention of self injury in the following paragraph only]

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It feels like I’m making up some new version of “These are a few of my favorite things” from The Sound of Music, but honestly stimming is that good. I wish when I was a depressed teenager struggling with self injury, instead of asking me a bunch of questions about why I wanted to hurt myself someone had just handed me stim toys. Because in all of the psychiatric offices I went to, I kept explaining how yes I felt very ashamed and bad about self injury but it just helped me relax. And I got a lot of advice about using red markers and ice and rubber bands to stop the behavior I was doing, and eventually I managed. But what I was doing, in retrospect, was filling the void that was left when I stopped stimming because I was ashamed of stimming and ashamed of being Autistic and different. If someone had just realized and handed me a stim toy or several, or given me permission to stim like I needed to in a healthy way, it might not have taken me so long to figure it out on my own.

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[end TW]

Why don’t we allow ourselves these joys? These pleasures that are just so good for my mental health. Why do we forbid stimming, stigmatize it, shame people for doing it and having delightfully flappy loud hands?

Unlike Autistic people who were diagnosed young, I never had a therapist or a teacher or a parent specifically try to teach me how to be more like neurotypical people. I just knew I didn’t quite fit, and kept being ostracized, and so I molded myself into a mirror of neurotypical-ness in the hopes that I could somehow find a sense of belonging. And it cost me to do so, although I didn’t realize it at the time.

I am sad for my younger self, that I would give up so much of who I am in order to fit in and belong. I was doing it even as I was proclaiming loudly and proudly about being queer, which was its own struggle with self-acceptance and societal stigma. Neurodivergence was something I didn’t have words for, and hoped would go away. I don’t want to encourage straight neurodivergent people to appropriate the closet metaphor, but for me? It was just another closet, and just as bad.

Yet I also understand, because the only reason I’m really able to come to terms with who I am now as an adult is because I have people who accept and love me for my Autistic enby queer disabled self. I don’t have to hide from them. I don’t have to have words all the time. I don’t have to make eye contact. I’m allowed to stim. I’m allowed belonging, and those things.

When Autistic adults tell parents that they need to accept their children for who they are; when we say that ABA is harmful: this is what we mean. We mean that no one should be forced to choose between a sense of belonging and who they are. No one should have to make a choice between having love from other people and loving oneself.

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3 thoughts on “The price of Autistic masking, or Let there be stims!”

  1. RE: self-injury
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    Every so often when I’m stressed I have visions of cutting myself. They’re coming more often lately, and your post makes me wonder if it means I need more ways to stim to control all the input I’m dealing with. Thanks for sharing. 💖

    Like

  2. This is beautiful. Thank you so much for sharing. I only recently discovered autism and I’m 28 years old. I’ve spent my whole life hiding deep parts of myself and feeling like somewhat of an Alien wandering around on this planet. Pieces of the mask I built have started to chip and break since I have been reading about autism and finally discovered what “planet” I’m actually from. My official evaluation is tomorrow, but I’m already sure of the answer.

    Upon finding all of this, all I have wanted to do is glue that mask back together and continue to be this construct that I have created for myself over the years. I looked up “why is masking bad for autism” in google and stumbled across your article. Thank you so much for writing it. Your article has reminded me that if I am truly to love myself then I have to actually be myself even if I’ve been hiding so long that I have to find that person first. And as a bisexual female, I actually appreciate the closet reference. I came out of that closet when I was 13 much to the dismay of my parents and I do see an feel the similarities and struggles that mirror each other between both sexuality and Neurodivergence. In both cases society wants you to fit into a box in which you don’t belong and breaking out of that box requires immense strength.

    Thank you so much for the eloquence and honesty with which you wrote this. It resonates so deeply, and you may have just saved me from continuing to stay hidden. ❤

    Like

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