[TW: Sexual violence; eating disorder; mental health; self-harm. Some of the relevant passages have been highlighted, but proceed with caution nonetheless]
A year or two ago, Mary and I were going through one of the autism subreddits. Mary asked me “What is toe walking?”. I explained how some autistic people will walk on their tippy toes. They asked, “Did you ever do that?”. I said no.
It took a few days, maybe a week. One day I was walking home from a lecture when it hit me. A muscle memory. A faint glimmer of regret in my legs. I rose on my toes and they remembered the movement exactly. I did use to toe walk, I did it all the time. It wasn’t just being on my tippy toes either, it was a specific bouncy motion, it was where I looked as I walked, it was the way the ground felt below me. I used to do it, on and off, whenever I went anywhere. Walking home from primary school, I kept my eyes closed almost the whole way as I bounced up and down on my toes. It helped me truly enjoy the ground. I don’t remember ever being told to stop, but I think it happened. I do remember being told I walk weird again and again. Not only did I stop toe walking, I forgot I ever did it.
As I realised this, I was hit with a crushing wave of sadness. I felt like I had lost something precious. I felt something was stolen from me. I wasn’t sure if I could ever truly get it back.
One of my favourite things is seeing videos of myself as a little child. I see a beautiful autistic baby. I’m fascinated by her movements. It’s a child who runs back and forth and swings and digs her hands into the ground. A child who avoids bothersome adults and doesn’t give eye contact unless she wants to. Staring at a book and flapping her hands. Fingers twirling. Moving from leg to leg. Singing songs in gibberish, non-stop. Telling stories to herself that don’t make much sense. It’s a child I feel fond of. A child who I see as recognisably, irrefutably me.
I was a bright, happy child. A child who struggled, who had needs that weren’t recognised or addressed. I child who was fiercely autonomous and unapologetically strange. A shy, nervous, anxious child. A child who persistently did things her own way, who pursued her own interests. A child who had friends, but was never quite like them, and preferred to be alone most of the time. A child who was sensitive, who had emotions that were too big and confusing. A difficult child.
I was a bright, happy child. Until one day I wasn’t.
I have been very lucky in many, many regards. I had a generally happy and calm upbringing. Remarkably absent of violence. I had warm and loving parents. Ones who didn’t always know what they were doing, but who certainly tried their best and who have never harmed me on purpose. I was considered healthy and misjudged as neurotypical and so this shielded me from abusive “therapies”. There was never any structured effort to correct me. I got along decently with other children. The mocking and insults were never consistent or vicious enough to constitute bullying. And controlling my body is an option I have the vast majority of the time. Given the horrors so many of my peers have faced, this is an unusually fortunate autistic childhood.
It’s more a million tiny papercuts, you see. Tiny little pains, the echoes of which I feel in my bones to this day. It was the frustration of having hands and feet that didn’t remember the actions which my mind did. The frustration of being given the same tasks day after day despite having a body seemingly not designed to do them. It was the shame of my flappy “reading” and being told to sit nicely, say hello, use your words. “What are you doing with your hands?”. The look of resignation in the face of every PE teacher about 2 weeks after they first met me. Being terrified of PE. The sight of fast-moving objects hurts me. It was standing on the volleyball court and telling myself “I won’t run away this time, I won’t run away this time”. My body took itself away from the ball every single time. The children from other classes would laugh and scream at me. My friends just sighed and rolled their eyes.
It was knowing that if I get excited, if I get anxious, everyone will see that I don’t move right. Just knowing I’m a particular and concerning type of messy/clumsy. That people will laugh if I try to run or dance. I was a child who just didn’t move as a person ought to move. My hands went on long journeys, exploring the world without my approval or my awareness. Teachers commenting on the ink and grime and me trying consciously to keep my hands clean today. I would never succeed.
It was the pain of a child hearing from a beloved, trusted adult “Just stop acting like a freak”.
I need to move like a person.
I was a bright and happy child. Until one day I wasn’t.
It’s a common enough story. I hear it especially often from other autistic women. Puberty is very, very bad. A strange, but ultimately healthy, child turns into something else. Sudden and unexplained mental illness. Did well in school and then she stopped going. Drop in functioning. Et cetera, et cetera.
I was a bright, happy child who became a miserable teenager. Emotionally unstable; hysterical; anxiety disorder; self-harm (both the conventional and the weird kinds); disordered eating; self-neglect; strong irrational fears; school avoidance; dysfunctional relationships; impulsive behaviour; erratic; manic; suicidal ideation; suicidal behaviour; attention-seeking; abuse.
Sometimes I have nightmares where I am 14/15 years old again.
Something happened. Something inexplicable happened when I was 12 to 13. It pained and confused my parents terribly.
Reading through my diagnostic assessments I spotted a pattern. I am not implying causation, but (emphasis added):
“Natasha has definite finger mannerisms (…) As a young child during primary school Natasha appeared oblivious to the fact that other people did not engage in similar behaviour. (…) When she transferred to secondary school, she made more effort to restrict her mannerisms to the privacy of her bedroom.”
“she occasionally used her own unique language which others would not be able to understand. She would do this from infancy up until the end of primary school”
[TW: This section contains descriptions of self-harm]
It’s a funny thing, masking. Nobody ever told me to do it, nobody ever told me how. You don’t have to think about it after a while. I didn’t use to have any awareness of it. It’s a background process. Day after day after day. The gruelling work of suppression, without the vaguest notion of what it is that you’re suppressing. Pushing and pulling and twisting all day long just to stay composed. But you don’t understand the composed people or what exactly it is that they do.
I have never done a good job of fitting in. A teenager that was confused for non-autistic but never confused for normal. And I don’t think I really wanted to be normal at any point. I never tried to act as a normal person. I tried to act as what I though a person was.
The background process always running, taking up space, heating up. Day after day after day. How much energy and discomfort goes into not moving/talking like a freak. It adds up, the masking machine always on. There’s never a moment of rest, it can never turn off. So the heat rises and rises and rises, and one day it explodes.
A minor inconvenience smashes into me, and I’m sitting outside the classroom, my fingernails digging through my skin. I don’t know what is happening and why. But my hands seek to destroy, and they systematically eradicate layer after layer of skin. I’ve scratched myself raw over many hours, my fingers sticky with blood and various other fluids. And I’m still scratching and I can’t stop (can I? Could I?)
Day after day, exploding constantly. My arms, legs, breasts, neck, shoulders. All covered in burn marks from my fingernails on fire. I tried to hide them at first, but I soon gave up. It’s difficult to miss a child with open wounds all over their body. Large patches of skin missing, I was always oozing from somewhere. You can only hold your hands still for so long. And when they will move, they will move to kill. My hands opened me up, they wrapped around my neck multiple times a day. I would rock back and forth in my room, and I couldn’t stop. I would cry and scream because I thought this meant I was going insane.
I thought masking was meant to make you inconspicuous.
[TW: This section contains descriptions of an eating disorder]
The body must be controlled. It has no voice and it must listen. I have learned that I must not trust what my body tells me. Loud noises are not painful. Flapping is not a need.
No, wearing clothes does not hurt. Crowds do not hurt. Hunger does not hurt.
The body must be restricted. We do not move our hands this way. We do not walk on our toes. I decide when and if we need to eat. And I can decide we eat once a week and once I succeed that’s the proof. The proof I can control it after all.
I’ve twisted and pulled my body parts, frustrated they would never listen to me. My stomach rebelled and refused to do what I asked it to. It was a many-year struggle to mould my body into something acceptable, something predicable, something controllable.
Your body’s reactions don’t matter. How well you control yourself matters. Others’ reactions matter. Whether it’s “stop acting like a freak” or “you look nice, have you lost weight?”.
Comfort is not something that should or can be pursued. Discomfort is normal and good. Discomfort is what happens when you move and talk and act like other people. Like real people. This is what they feel as well, isn’t it? You’re not comfortable, but discomfort is how you become real. Discomfort is what it means to move like a person ought to.
I laid on the floor with the sensation that my stomach was finally caving in. I wondered if I was possibly dying. I did not move, because we don’t do that. Physiology means things we must control. When your body tells you fibres burn your skin, that’s a lie. When your body says it’s hungry, that’s a lie.
[TW: This section deals with sexual assault]
OK, so this is the part that gets really uncomfortable. It’s not nice to think about, it makes my brain unsettled. But I think it’s relevant to the story of my autistic body. And it’s relevant to many other autistic bodies, I’ve seen the statistics after all.
As a teenager, I was sexually assaulted at least twice. I’ve been processing the Incidents TM through writing and poetry. None of that has felt adequate at any point, but I’m curious about my word choices. Words like “rubber”; “plastic”; “mannequin”; “objects”. I’ve spoken of having my limbs manipulated and arranged, the sense of being carried and dragged from one place to another. I no longer think my body became inorganic because of the rape(s). I think it was this way for a long time before.
The body must be controlled. If I can’t do it, others will.
My discomfort doesn’t matter. I’ve been taught my discomfort doesn’t matter. It doesn’t comply with reality. My body over-reacts. The noises aren’t bad. The eye contact isn’t bad. This isn’t bad. The body is lying.
Your reactions are wrong. It’s the others’ reactions that matter. If they’re laughing, it must be funny. If they’re smiling, that means nothing is wrong. The body must be compliant. It moves how it’s told to move. Body fatalism. Your body has no voice. Things just happen to it.
When a real, normal, person tells you to stop walking funny, you do it. When they tell you to lie back down or undress, you do it. People are touching me. I suppose this is what must happen now. This is what is happening and there’s nothing we could do to stop it. The body is silent and still. I whimper at one point and I slur out that I’m cold, what is happening. My “friends” laugh at me. My mind is not working well and what my body says doesn’t matter. I’ve been told not to trust my body. You’re not in pain, you’re over-reacting. You don’t actually feel this way, you’re just making excuses.
I couldn’t trust my body, so I trusted the laughter. If they’re laughing, then it must be fine. This is fine, I’m fine. Other people are always right. Me and my body are always wrong. Discomfort is normal, so this must be normal too. We don’t say “no” to other people. We can’t escape uncomfortable situations.
The body must be controlled. The body does not belong to me.
When I was diagnosed, they watched and assessed and scored my movements. Of course.
I received an ASD diagnosis. Along with it I received a list of recommendations. The experts recommended that any therapy should target “normalising physiological motor symptoms”.
Normalising. At this point all they could really pin on me was “complex finger mannerisms” and “exaggerated gesturing”. That was all that was visible at this point. I’ve rubbed off and torn and let others’ pickpocket pieces of me. I’ve pushed past the need to feel comfortable, to feel authentic, to listen to my body, for many many years at this point. All that was left was “exaggerated gestures”. And they felt the need to normalise that as well.
Thankfully, the NHS is chronically underfunded (and that is the only time I have ever said that). I never received therapy to “normalise physiological motor symptoms”. But I remember how I felt the first time I saw those words.
I had never heard the terms “stimming” or “masking” or “neurodiversity” at this point. I knew very little about autism, except for the fact that I apparently had it now. But I knew immediately. They wanted to normalise my movement and that was wrong. They wanted to normalise my movements and I felt horribly sad and scared and violated thinking about it. It just didn’t feel right. I didn’t want to be normalised.
I was confused when I started stimming more after my diagnosis. Why are my hands flapping all the time? Why am I rocking and repeating things? This is not the kind of autism I have. What if people see me and think I’m much more disabled than I actually am?
Moving away from home, I started realising how tired I was all the time. I could feel so clearly all the energy it took to act normal all day long. Yes, I do still feel compelled to act “presentable” or “professional” in many situations (and those words mean neurotypical for some reason). I’m certainly lucky to have the ability to perform this. I am not lucky to have to.
Honestly, the last few years I got tired. I feel what I call “happy-angry”. I do care what the neurotypicals think, but I don’t particularly want to care anymore. I can’t always afford to care either.
Fuck you. I’ll move how I want to. I’ll vocalise how I want to. I have the right to feel comfortable. I have the right to exist publicly as an autistic person. I am exactly as autistic and as disabled as I am, as I’ve always been. If you assume I have a learning disability because of the way I move, that’s on you. Whether or not I have a learning disability is none of your goddamn business (Also, please stop speaking this way to people you assume to be learning disabled. They’re neither toddlers nor puppies).
My hands do whatever they want. I let them. Sometimes they decide to slap or hit me. They have their reasons. And they are open to compromise, most of the time. If I can’t stop my hands from hurting me, I know my body is telling me something important.
I flap, and I twist, and I twitch. My hands play invisible pianos. My body will rock when it wants to and it will bump into things. My hands are free to explore. My skin recoils from sticky substances. It despises certain fibres. It will cling to things soft and smooth. My mouth rubs on things it finds pleasant.
My eyes have a direct connection to my feet. When my eyes see something exciting, my legs shift onto my toes. Soap bubbles and pigeons make my body shake, lift, drop, with violent excitement. I squeak and I squeal. I grunt and I point. I stick my tongue out when I’m confused. I repeat words and non-words.
I wonder what the people who diagnosed me would think of me now. I wonder if they’d be horrified how far into the opposite of “normalising” I moved. I wonder if they’d know that I am finally comfortable. My body is finally my own, finally its’ own. I hope they would care about that, although sadly I’m not so certain that they would.
This is me:
This is also me:
Everything in between was a lie and a tragedy.