If your kids are anything like my kid, the stresses and oddities of doing everything from home these past four months have created new anxious habits and increased the severity of old ones. I’ll skip over the habits for now (my 10-year-old son, O, is now a chewer, and has annihilated a dozen shirt collars, several cool chewie necklaces, and seems to be inspiring his siblings toward similar behaviors) to talk about stimming.

A handmade patch made of black fabric has the word "quiet" embroidered and then crossed out, with "loud" embroidered beneath it, and "hands" beneath that.
A handmade patch made of black fabric has the word "quiet" embroidered and then crossed out, with "loud" embroidered beneath it, and "hands" beneath that.

Stimming started for O 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 O 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 to us as rhythmic, repetitive, purposeless behaviors. If O 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 more or less his favorite activity.

As a term, “stimming” has been reclaimed by people in the autistic community to describe self-stimulatory behaviors (sometimes also called “autistic stereotypy”). Stimming can take many forms, from hand-flapping to squealing to finger-flicking to head-banging, and while it can be a distinguishing feature of autism, typically developing children or children with other disabilities may also stim. 

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 primarily focused on stereotypies occurring in typical children. (“Primary motor stereotypies” is the term used for typical children who stim; “secondary motor stereotypies” describes my son, whose primary diagnosis is cerebral palsy.) 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 O’s stereotypies through the one-way mirror in his early intervention classroom at UCLA — watching this tiny guy being told to press his hands flat on the tiny 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, O chooses stimming over pretty much any other activity (with the exception of screen time, of course). 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 telling himself, usually accompanied by sounds of gunfire and explosions at top volume (Boom! Boom! Boom!). As it always has, his stimming puts me in a 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 anxieties and fed-up-ness, going to spiral through the stratosphere.

O’s 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, and I add it to my list of suspicions about stimming being driven in part by a neurochemical imbalance (O’s 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 any other aspect of O’s disability. While this can’t be true — it is, after all, ridiculous to say that stimming is more of a challenge for him than spasticity or speech apraxia, both of which continue to pose meaningful, physical, social/emotional challenges — it illustrates how absolutely and frustratingly overwhelming it can be to share a 1,000-square-foot bungalow with three children and a dog while one of them is screaming Boom! Boom! Boom! and ignoring everyone's 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.” I share it 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 often remind O that I don’t like his stimming because it takes him away from me, and I like spending time with him. He doesn’t realize how loud and awful-seeming his stimming is, and even if he did, I don’t think he’d care. One of the benefits of O’s particular neurology is that he’s never given five figs about what other people think of him — at least, not yet. And the fact is, my asking him not to stim so loudly also reeks of ableism. From O’s perspective, he is spending time with me while he’s stimming, he’s just doing it in his own way. He does, after all, insist on stimming on the couch, right in the thick of things, and not in his bedroom like we’d prefer.

But maybe it doesn’t have to be a binary — maybe somewhere in there is a happy middle. I could funnel my frustration into helping the world make room for the kind of kid that O is: unique and funny and yes, loud. And in the meantime, maybe buy some earplugs? I’m open to suggestions.

 

Jennifer Alise Drew

Head of Editorial, Undivided

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