I’ve had a lifelong relationship with stimming. And for so much of my life, I’ve tried to stop.
Why did I do that to myself?
I’m such a stimmy autistic. I’m more noticeably stimmy than many autistics I know – to the extent that other autistics comment on just how stimmy I am. I think now about how much I stim, and how obviously I stim, and I wonder at the fact I went undiagnosed for so long.
For quite literally as long as I can remember, I’ve used my teeth and jaws as a drum kit. At various points in my life, it would occur to me that this was something others didn’t do, and that, thus, it was not “normal”. But it was a discreet enough stim that did no harm to either myself or others, and so it continued.
As a preschooler, I had an old, ragged velvet curtain that lived on my bed, the hem of which was delicious, soothing, soft delight to rub against my upper lip.
As an older child, I enjoyed “crash-landing” at bedtime. I’d take a run-up, jump forward, and sharply twist round to land with a crash, on my back, on my bed. There was a glorious release in doing so. Rather than working me up into a frenzy, the combination of twirling, twisting vestibularity and proprioceptive sinking contact of body-with-bed seemed to relieve me, ground me and relax me, albeit only for a few minutes or so.
I’ve never truly been able to lie still in bed. I find it something close to torture to lie still. One of my favourite in-bed stims is to repeatedly flex one of my feet at the ankle, rubbing the foot against the sheet beneath me. Sometimes I have both feet going, and I concoct rhythmic combinations, one foot accompanying the other but each rubbing out its own distinct motif; at other times a simple back-and-forth motion will suffice.
My sensory sensitivity means that in moving my feet when they’re covered by bedlinen, I’m hyper-aware of sweat, snags, abrasions, contours and anomalies. They agitate and irritate and prevent me from powering down. I must always keep my toenails neatly trimmed. My feet must always be freshly washed before I slip under the covers.
Sometimes in bed, I rock or wiggle my hips, or contract and release my quadriceps, feeling my knee joints tense and relax as I do so. But mostly it’s the feet.
For so many years I thought something was wrong with me. I seemed unable to relax in bed without moving my feet. From so many sleep-overs, residential school trips, Girl Guide camps, and holidays with cousins, I’d observed that most other people didn’t need constantly to move their feet as they lay in bed at night. I had a strong sense that this wasn’t “normal”.
(There was also, of course, that whole thing of everyone else around me going to sleep way before I did. On some sleepovers, I literally lay awake all night. But that’s an aside.)
I tried to stop, but couldn’t.
I carried on moving my feet at night all through my teens and 20s. And I kept on trying to stop. Because it wasn’t “normal”. But trying not to move my feet in bed was torture.
It wasn’t just bedtime. I needed to stim every waking minute of the day. In classrooms, I’d swing my legs under the desk. I’d compulsively tap my foot or drum my fingers while waiting for a bus. Once I’d started learning to play the trumpet, I’d emulate the fingering in mid-air, tapping the middle three fingers of my right hand against my thumb in mimic of the notes played on the real instrument, evoking the tunes I could hear in my mind.
Around the age of 10, I discovered split ends in my hair. This ushered in two decades of calloused finger tips and tension headaches as I squinted at the hair in front of me, closely inspecting the ends, and then picking, peeling and snapping, thumbnail digging into index or middle finger as I pulled the ends of my hair to shreds.
Split-end-picking was one of my distinguishing traits as a teenager. Another bit of ammunition the other kids could use to taunt me. But focusing on the ends of my hair helped block out the rest of the world.
But it didn’t feel healthy. And neither did picking at the skin on my arms and legs, or clawing at my scalp. Neither did smacking myself in the head. And yet I did all these things.
I wanted to stop doing these things. But I just couldn’t.
Why was it that I felt such a desperate need to move all the time? Why did my body cry out, scream out, for this input?
During my teens and university years, I moshed at gigs, bounced around at indie discos, and gyrated at clubs. I flailed and jerked about on stage in bands. In my mid to late 20s, I exercised to extremes; hours and hours of running, spin classes and free weights every week. At these times, my body got the feedback it needed in vast quantities, and I didn’t feel quite so twitchy as I do now, and as I did as a child. I still stimmed, or course, but with less frenzy, fever or freneticism.
But at times when I was less able to be active, and times of anxiety, anger or sadness, the really damaging stims returned. And nothing could ever soothe my body or soul to my own satisfaction.
I picked my skin. Peeled the ends of my fingernails. Pulled at split ends. Scratched at my scalp. In meetings at work, I worried about what others thought of me as I did so. But I couldn’t stop.
In all those years, I never realised there was a name for what I’d been doing.
When my mum first suggested to my husband and me that our daughter was autistic, I started to read. At that time I was seeing things from the “parent-of-autistic-child” perspective. I started to learn about the need to self-soothe. I gradually learned about fidget toys. And gradually, as I began to discover the writings and videos of autistic adults, I realised that a lot of this applied not just to my daughter, but to me. I realised what it was that I had been doing all my life.
There was a name. And these things I’d been doing all my life, that had this name, were a recognised part of a culture. A culture that I increasingly found myself gravitating towards, associating with.
For a time, pre- and post-diagnosis, I kept my stims discreet. Tangles or worry stones in my pocket. Tactile jewellery subtly fiddled with. I realised there were things I could do, things I could use, which were far less damaging than split end picking or scalp clawing.
And when I was with my children, I could move as they did. I could dance, sway, and spin. I still do.
But there were – and still are – times when this wasn’t enough. As I walked to work, I yearned to windmill my arms, skip, hop and twirl. I wished that dancing could be my default method of commute. I longed to clap my hands, and sing at the top of my lungs. But I was a grownup. A professional. What if someone saw me?
But my body needs movement, and I’m so damned tired of not giving it what it needs.
I need to stim as much as I need to breathe.
It’s part of my neuroqueering to stim more obviously these days. I do make dance-like movements with my arms when I walk sometimes. I do sing, and whistle, and clap. I do clamber onto walls, balancing for a time before leaping off. I reserve most of these activities for quieter, less busy spaces – attracting attention to oneself is risky. But I’ll still let my hands be a little freer with their movements, even in public.
At work, I worry less now about what others are thinking as I wiggle my fingers next to my face as an aid to the thinking process. I sway, twirl and dance by the photocopier as I wait for my documents to print. I tap my hands on my legs as I walk along. I flap them as I wait for the kettle to boil. It’s not a flap of frustration, but a relieving movement that in that moment is necessary.
Of course there are times when I tone it down. We’re not in a world where autism is that well accepted that I can freely be myself at all times. And at times, I suffer for this. Any autistic who’s in employment would do.
But outside of meetings, teaching sessions and polite conversations, I let my guard down more often than I once did. I stim more obviously these days in part because I’m now better attuned to what stims really help me. But in another part because I actually want it to be noticed. I’m still a competent, capable human being; I just happen to be one who needs to stim.
I wish stimming were more normalised. After all, everyone does it. It’s part of emotional regulation – why else does an otherwise calm person pace a hospital corridor waiting for news of a sick loved one? Why else does a student click their pen or bite their nails as they agonise over a tricky maths problem or essay question? Why else does a parent drum their fingers on the table-top as they anxiously wait on hold to have a difficult phone conversation with the headteacher?
It’s just that many of us autistics do more of it. We do it bigger. We need to because of the ways we experience our environment, and our emotions.
I wish I’d understood that when I was younger, instead of torturing myself by trying to stop.
[Featured image: ‘Wave’, by Rob Witcher. Image description: black and white photograph of a hand waving in front of a stroboscope, against a black background.]