Rethinking Stimming: Perspective

Stimming is shorthand for repetitive, self-stimulatory behaviors. While stimming is commonly associated with autism, it can also occur in typically developing kids, kids with ADHD, and kids with many other co-occurring diagnoses. Stimming can take many forms, from hand-flapping to squealing to finger-flicking to head-banging. As a term, “stimming” has been reclaimed by people in the autistic community to describe self-stimulatory behaviors (sometimes also called “autistic stereotypy”).

For my son, who has cerebral palsy, the stimming started when he was about three. It happened in the car, in the grocery cart, at the dinner table: flapping his hands, kicking his legs, eyes rolled toward the ceiling, mouth moving like he wanted to say something. It was, in many ways, the beginning of our experience of other people’s reactions to disability. People stared at him in a new, alarmed way. The behaviors alarmed us, too, and we sought out specialists who ordered tests to rule out things I’ve now mostly blacked from memory.

As he grew, the movements grew with him: his face contorted more, his body rocked and kicked harder, and around the time he was four or five, the vocalizations began — something between little shrieks and grunts. Eventually, these movements were diagnosed as stereotypies: described as rhythmic, repetitive, purposeless behaviors. If my son is interrupted by something that holds his interest, he can stop them. This differentiates stereotypies from tics, which are not so easily controlled. But much of the time, he doesn’t want to. What we now call stimming has become one of his favorite activities.

Purposeless or purposeful?

One of the experts my husband and I sought out early on is Dr. Harvey Singer, a neurologist at Johns Hopkins who heads the only department I know of that studies stereotypies. Singer’s department is focused on stereotypies occurring in typical children. (“Primary motor stereotypies” is the term used for typical children who stim; “secondary motor stereotypies” describes children like my son, whose primary diagnosis is something else.) Despite Singer’s study that found that children with stereotypies have lower levels of GABA in certain parts of their brain than their typical peers, his team believes the only way to treat stereotypies is through behavior modification. They have developed their own protocol of habit reversal therapy: basically, it involves teaching a child a competing behavior or response to replace the stereotypies.

This approach is not too different from the one historically taken by ABA therapists, who for years have taught autistic children to have “quiet hands” to help them regulate and/or cease self-stimulatory behaviors. I remember watching the teacher’s response to my son’s stereotypies through the one-way mirror in his early intervention pre-preschool classroom at UCLA — watching this tiny guy being told to press his hands flat on the tabletop to stop them waving. Self-stimulatory behaviors are still largely seen by the medical community as purposeless and mostly harmless — though for some behaviors, like head-banging, they can be damaging as well. But even head-banging gets at a need to manage a feeling or experience that isn’t otherwise being managed. In other words, stimming is not, to the person stimming, purposeless at all.

So why do people stim?

Last year, a research fellow at the University of Exeter undertook a study to find out — the first time anyone has asked this question of people in the autistic community — and what he discovered is that stimming is actually incredibly useful.

Steven Kapp interviewed 31 autistic adults for his study. Most of them told him they stim in an effort to help them process an emotion or cope with overwhelming stimuli. None of them reported disliking their stimming, though they did dislike other people’s responses to it. As Kapp writes, “Autistic people can be overwhelmed by sensations, new information and their own thoughts. Study participants told us that stimming soothes these intense feelings, helping them regain a sense of control.”

Think about why you do certain things, like bounce your knee while you’re talking or chew your lip as you read. As Kapp points out, we all have some sort of stim; in some of us, it’s just more noticeable — or, of course, less socially acceptable.

“Loud hands”

These days, my son often purposefully chooses stimming over other activities (with the exception of screen time, of course, and listening to audiobooks). His body is lean and muscular from crawling and using his manual wheelchair, and now his kicks and waves and body slams inch the couch along the wall. A new stim that involves pushing/pulling on one corner of his glasses has left them permanently crooked, and the vocalizations now involve whatever story he’s writing in his head, often accompanied by sounds of stealth attacks and explosions (boom! boom! boom!). As it always has, his stimming puts me in a mild panic — against all logic, since I know that he is fine and that this is his way of self-regulating. But it doesn’t feel fine. It feels as though we are both on the verge of the opposite of collapse: that we are both, with our private thoughts and anxieties, going to spiral through the stratosphere.

His stimming is worse on some days and weeks than others, and my husband and I have mostly given up trying to find a pattern. It’s cyclical, we say, like his insomnia used to be, and I add it to my list of suspicions about stimming being driven in part by a neurochemical imbalance (his blood work consistently shows low creatinine, which corresponds with muscle wasting typical of movement disorders, but all that for another time). On bad days, the stimming feels more challenging to us than other aspects of his disability. While this can’t be true — it is, after all, ridiculous to say that stimming is more of a challenge than symptoms of cerebral palsy or speech apraxia, both of which pose meaningful, physical, social/emotional barriers — it illustrates how absolutely overwhelming it can be to share a small space with three children and a dog while one of them is yelling boom! boom! boom! and ignoring your attempts at connection.

Last year, I discovered an essay that gnawed me to the core by autistic writer Julia Bascom, who details the repeated ways in which she was kept down as a child by being told to have “quiet hands.” More recently, I came across a post by a neurotypical young woman with stereotypies examining both why she enjoys stimming, and how not talking about it (and then becoming fearful about what it could mean for her) was a huge part of her childhood.

I share these with you because it reminds me of the value of being put, as a parent, in our place — which is to say, as a neurotypical parent whose view of things can only ever really be arms’-length. I sometimes remind my son that I dislike his stimming because it feels to me as though it takes him away from me, and I like spending time with him. He doesn’t appreciate how loud his stimming is to other people, and really, why should he? The fact is, my putting a time limit on the amount he’s allowed to stim, or asking him to stim more quietly, reeks of ableism. From his perspective, he is spending time with me, he’s just doing it in his own way. He does, after all, like to stim on the couch, right in the thick of things.

But maybe it doesn’t have to be a binary — maybe somewhere in there is a happy middle. Maybe we could all make a bit more room for the kind of kid that he is: unique and funny and perennially insightful and yes, loud. And in the meantime, maybe buy some earplugs? I’m open to suggestions.

Jennifer Alise Drew

Senior Editor, Undivided