(In)visible Stimming in a pre-Asperger world
Content is broadly about identity, stimming, growing up undiagnosed, autistic thinking and behaviours, passing, and otherness.
Trigger warnings for ableism, ableist language, internalized ableism, abuse and bullying, self harm, mental health issues (depression, anxiety, PTSD), self esteem issues, shaming, and erasure.
I am in my early thirties. I'm from a multi-generational spectrum family. Half a dozen years ago, none of us had an autism diagnosis. Now, with only a couple of exceptions, most of us have an official or self-diagnosis of some flavour of spectrum.
Diagnosis for me wasn't a surprise, but rather, an affirmation of a difference about myself that I'd never been able to pin down, not with introvert, not with PTSD, not with dissociative identity/median. None of the labels fit, or fit for long. Autism did.
I grow up in an eccentric family. I grow up in schools where autism is unheard of, and ADD/ADHD and dyslexia are only starting to be known about by classroom teachers. I am never in those remedial lessons, those classes for kids who can't read. I start reading by my self when I am barely three, am coaxed into full literacy by four by my schoolteacher (undiagnosed Aspie) mother who has hundreds of hand cut, hand lettered phonics cards that hang in colourful bundles in rows from the back of our study door.
I can read, so I'm not special needs.
I can talk, so I'm not special needs.
I can hear, so I'm not special needs.
I just need to pay more attention.
I just needed to be more organised.
I just need to remember, because 'I forgot' might work a time or three when I'm seven, but when I'm thirteen, teachers just start calling me lazy to my face.
By the time I'm sixteen, I've developed a thick shell that doesn't protect me, but I'm cynical enough to not bother trying to do my homework at all, because my tangential thinking and poor working memory means that I can't keep on topic to save my life, and my essays meander like rivers from subject to subject, ending up miles from the intended target.
But I'm not special needs, because I'm at a gifted high school, and if I just tried, I'd get good marks.
By the time I'm eighteen, I've flunked out of high school. Bullying from my art teacher pushed me into a nervous breakdown, and I'm on medication.
At my high school, there's one boy, a grade or two below mine. He's autistic and everyone knows it. He has brilliant red hair, an affinity for mathematics, an incredible gift for mimicry, and at least one meltdown a day. He's nothing like me.
By the time I've grown and left high school behind, I can think of at least half a dozen more, like myself, who just didn't have a name for what they were. Back then, autism wasn't a word that belonged to people like me.
When I was young, I would spin until I was dizzy and fall back on the grass to watch the world whirl. When I was young, I would line up things in rainbow order, and line up books in size order, and collect shells and stones and feathers and line them up too.
I collect stones at lunch time from the playground at my infants' school. The pockets of my brown-and-white chequered school dress bulge and dangle and smack against my legs with the weight of my treasure.
My first grade teacher makes me throw them away, over the balcony, and I cry.
I chew on my collar, chew on my hair, and I mustn't, because that's disgusting, and it might give me a hairball in my stomach that grows and grows.
When I'm in high school, I bite at my hands to stop myself from screaming at the ball of emotions and trauma raging inside me. I leave deep grooves that take minutes and minutes and minutes to fade.
I scratch at the skin on the back of my left hand with safety pins, too. I still have the scars.
When I'm seven, I decide to start chewing my nails. I never stop.
It's only this year, at the age of thirty-two, despite having read dozens of biographies and autobiographies of autistic people that I realise that these are all self-harming stims.
It's only at the age of thirty-two, this year, that I realise I stim at all, because my stims have all been spanked or shamed into more socially acceptable forms, less autistic forms.
(A child who bites her nails isn't obviously autistic, she just has a bad habit.)
If she swings on her chair or taps her feet, she's restless, fidgetty.
(My teachers and peers shamed me out of swinging on my chair, out of tapping my leg. Now I curl and uncurl my toes in my shoes, where no one can see, where no one can tell.)
If she walks along rails, along kerbs, jumps over cracks, follows the patterns in tiles, she's just being silly.
(I rarely do this now, because people stare.)
In sixth grade, my teacher who I loved got so angry with me kneading and stretching a piece of Blu-Tak over and over and over that he shouted at me to sit on my hands and stay still. It scared me and I cried silently for the rest of the lesson and staying still and sitting on my hands and being good was one of the hardest, most painful things I've ever done.
When we broke for recess he apologised, but the shame and shock stuck with me, stayed with me, and I stimmed in class in obvious ways less and less from then on, from there out. No longer did I press on my closed eyelids until the colours appeared. No longer did I look sideways through my plastic ruler to see the world bend.
I still lined up my tin of Derwent pencils in order, all the writing right side up, all perfect, in rainbow order, but that wasn't autistic, that wasn't special needs, that was just fastidiousness.
As a teenager, I took a book with me wherever I went, so I could shut down, so I could avoid eye contact, so I could focus on something interesting in an awkward situation. People would get upset, get angry, think I wasn't listening, think I was being rude.
These days I knit, because even though I can knit without watching, people don't expect eye contact when you're knitting, and it's something they can fathom, something productive that a non-autistic person can see value in.
That's not why I do it. That's just a bonus.
I knit because the rhythm is repetitive, a familiar and predictable pattern that varies only in predictable ways. The textures of the yarn and the metal needles are pleasant, and when my hands are busy, I'm not gnawing on them, not hurting myself. When I'm knitting, I'm calm, I'm not bored, I'm not at a loss for what to do, where to look, what to say. I'm in a bubble of perpetual soothing and fulfilment, and the rest is background noise.
A well-known autistic blogger asked a few years ago for short videos of people stimming for a stim-positive project they were doing.
I messaged offering to take video of myself knitting or using my spinning wheel.
That's not what they're looking for, I'm told.
That's not real stimming, is what they imply.
It's all I've got to offer, so I never reply.
(I'm not autistic enough, because the world has moulded me to pass, and now even my most overtly autistic behaviours are too neurotypical in presentation to count.)
I used to vocally and verbally stim a lot, singing, humming to myself. I didn't know that's what it was.
I don't any more.
I don't like to think about why I don't, the shame is still fresh as wet paint.
I used to love spinning and swinging on chairs and on swings and on poles and just on my own.
A large group of boys from the grade above me in high school saw me spinning around a pole one day and bullied me about it for a whole year before another student intervened on my behalf and reported it. I was nearly suicidal by that point. When they asked me to identify my attackers, I couldn't, too face-blind and frozen and worn down from the misery of it all.
I spin rarely now, and when I do, it's with the sense that someone might be watching, someone might pounce with glee and make my life hell again.
No one ever ruined trampolines for me, but I've never owned one, so my bouncing always took place at other places. Friends' houses, cousins' houses, gymnastics class.
Had I the space in my yard, I'd buy a trampoline and jump every day. Lie on it to read, to knit, to watch the sky. Feel the static on my skin and the cradle of the trampoline under tension under my back, holding me suspended above the ground.
I'd bounce on it, and not give a damn about what the neighbours thought.
I don't stim, I think, for years, even once I have my diagnosis.
I line things up in rainbow order. My books are ordered by author and subject. I eat my food in the order that I like, in the way that I like.
I knit so I don't chew my nails, but that's not autistic.
(It's just a hobby, to avoid a bad habit. I know this, because an autistic person I respect implied it.)
I wiggle my toes, but I don't even notice I'm doing it.
I clench my fists, but that's not autistic, that's just a mannerism.
I sit on my hands when I'm somewhere where I can't knit, when there's a stern official face on the other side of a desk, when my hands should be still.
I buy myself sunglasses, earplugs and wrist cuffs when I realise my anxiety is worse when I am overloaded.
(I didn't know what I felt was overload. I just thought I tired easily, was bad at socialising, was uncomfortable in busy spaces.)
I save up to buy myself Irlen tints. It takes me several years.
I still don't think I stim, still don't think what I do counts.
(I bounce on my toes and clap and flap when I'm really excited, but if I'm in a group of fandom-y people, bouncing and flapping is standard. It's not autistic, it's just fandom squee and flail.)
I read Don't Mourn For Us, I read the history of ANI, I read Quiet Hands.
(When I read Quiet Hands I feel empathy, but I can't relate it to my own experience until I re-read and scroll down to a comment below where a person says they were told to sit on their hands, and then I'm back in my sixth grade classroom, watching the face of my teacher turn angry and shout even though I was paying attention, because of the stretching and kneading and twiddling the Blu-Tak.)
When I get on Tumblr, it confuses me at first. When I get on Tumblr, I follow ASAN.
I find fantasticfidgets and I find fuckyeahstimming, and the world opens wide.
I remember my Slinky, and the hours I spent tipping it hand to hand.
I remember my kaleidoscope, bought when I was eight on a birthday trip to Sydney, from the Australian Museum.
I remember toys that folded and twisted and tangled.
I remember leaves, torn and twisted and folded and flapped.
I remember pebbles and stones and gemstones touched and caressed and lined up and kept safe in a box or a tin.
I remember my Koosh ball and my tennis ball and the hours I spent tossing them in the air and catching them above my face.
I remember lining up my pencils and my Troll dolls in rainbow order and my stones and books and feathers by size and shape and texture.
I remember swinging and humming and bouncing and spinning and spinning and spinning and stimming.
I am autistic, and I stim, and I have been hurt because I stim and I have been shamed because I stim. My stims may let me pass and my stims may not look like your stims but they are mine and they are stims and they are valid and I am autistic.
I go on eBay and buy a Tangle Therapy and I carry it with me, everywhere. I let myself twist it and turn it and twiddle it in public, when I'm walking around and I can't knit..
I let myself twist it and flap it in the corner of my eye and grip it in my fist and shake it out to feel the links slip out from the curls I've twisted it into.
I show it to curious children and let them play with it and tell myself not to care when adults' eyes skate away from me.
I tell myself that I'm allowed to, that I don't have to conform to neuronormativity, that I am allowed to be happy to be free.
It's a work in progress.
Contributor Bio: IamShadow21 is a cis-gendered queer white woman in her thirties who is life-partnered with another disabled woman. They live together in a tiny gold rush town in Australia with their collection of special needs fur kids, and do a lot of fibre arts like knitting and spinning to pass the time. Right now, IamShadow21 is super excited about Avengers fandom, which she writes the occasional fan fiction for. You can find her at IamShadow21 on Tumblr and Archive of Our Own, and iamshadow on Dreamwidth.