Stimming, Stigma and Stereotypes

Official diagnostic criteria for autism in both the ICD-10 and DSM-5 refer to “restricted, repetitive patterns of behaviour, interests or activities”, a catch-all phrase which sometimes seems to be used to mean anything an autistic person does. Indeed, the sub-categories listed under this criterion range from special interests to (in the DSM-5) sensory sensitivities as well as “stereotyped and repetitive motor mannerisms” which form part of what the autistic community now calls stimming. “Stimming” – or as clinicians might be more likely to call it, “self-stimulatory behaviour” – essentially refers to any repetitive behaviour that stimulates one or more of the senses, and autistic people can have a whole range of stims for a whole range of reasons.

A couple of weeks ago, I saw this great video introduction to stimming by autistic comedy writer Sara Gibbs, who describes stimming as “a series of self-soothing movements that a lot of autistic people do in order to cope with things like sensory overload or being emotionally overwhelmed.”

This got me thinking about my own stims, how they do and don’t fit various stereotypes, and some of the misconceptions people have about stimming…

Myth 1: Stimming is always meaningless and aimless

Something that really stuck with me in Gibbs’ video is the explanation of stimming as part of an autistic person’s body language. If you get to know an autistic person well, you’ll probably pick up what a few of their stims mean. Given that autistic people might also struggle with verbalising their thoughts and feelings, this can be hugely important for all parties. Sadly, though, the way autistic people move is framed as “weird aimless behaviour” to such an extent that others often don’t look for a meaning beyond “that’s weird, stop it”. Considering we’re supposed to be the ones deficient in interpreting non-verbal cues, it’s amazing how often neurotypical people fail to pick up very obvious distress signs from us!

Equally, I have a lot of stims that I don’t even consciously realise I’m doing, never mind trying to communicate with – tiptoeing, pacing the room when I’m on my own, making chewing movements in my mouth… These stims might not have any specific purpose, but that doesn’t mean they’re a bad thing – lots of non-autistic people also fidget when they’re concentrating! While personally I’m not sure about the view that everybody stims – I think it takes on another significance for autistic people, much like special interests aren’t the same as hobbies – there’s certainly a lot of hypocrisy about who is and isn’t shamed for the way they move. As a teenager who had fairly frequent meltdowns, followed rules to the letter and generally did too many embarrassing things to count, it baffles me to this day that everyone was so obsessed with the harmless tiptoeing!

Myth 2: It’s all rocking, flapping and fidget spinners

There are as many different stims as there are senses, movements, people.

A lot of my own sensory issues are around sound, and the same is true for my stims (and always has been – somewhere back home, there exists a VHS of my toddler-self spinning in circles to whatever it was my parents were playing). Music can be both a burst of positivity and a giant comfort blanket that can get me from “something’s exploding” to “completely fine” ridiculously quickly, and my MP3 player is how I do the Tube… and the office… and busy streets… and any and all emotions… Basically, it gets more things done than I do!

Every so often I come across conversations online where an autistic person is just realising that repeating the same songs over and over is a stim, and that’s something I do too. (Actually, that’s the other reason I can do the Tube – I happened to click on Jay Foreman’s Every Tube Station Song once and then clicked on it over and over again until I knew the entire thing inside out. Worth it!) I’m also a big fan of repeated phrases and in particular the Doctor Who catchphrase supercuts that crop up online, like this eight-minute compilation of every “what are you doing here?” from 1963 to 2008 (yes, really):

Some autistic people are frustrated by their capacity to make everything an earworm. Thankfully, I love it!

It should be said that while stimming isn’t all about the rocking and flapping, there’s nothing wrong with rocking or flapping at all, nor with other stereotypical stims like children playing with toys “wrong” by – shock horror – lining them up or focusing on details their non-autistic peers don’t care about. If it’s not harming anyone, then it’s not harming anyone and it shouldn’t be stigmatised. Using subtler stims as a stick to beat the less subtle stims with, or vice versa, creates a false binary – most autistic people will use a combination of everything! (Otherwise I’d have had to come up with a different username…)

Myth 3: Stims are distractions

Okay, sometimes stims are distracting. Maybe I’d have finished writing this by now if I hadn’t watched the entire Tube song and “what are you doing here? supercut again when I went to get the links, or if I didn’t keep thinking of other things and finding myself having wandered to the other side of the room. On the other hand, stimming also often helps with concentration through blocking out other distractions (and for a group of people that have sensory overload to contend with, there are many of those!) and providing one safe, predictable, “constant” input to focus on.

If anything, the bigger distraction is often not stimming – suppressing movements that come naturally to you because other people judge you for them, or doing nothing to regulate the building overload because your quick fixes will be mocked, takes a lot of thought and a lot of energy away from the task at hand.

Myth 4: Stimming only happens involuntarily when in distress

Given that stimming is so stigmatised, many autistic people will feel forced into masking it or suppressing it when they can, at huge cost to themselves (again, not stimming is a huge distraction!). During meltdowns or at other crisis points, the energy for that suppression just isn’t there anymore, and that leads to the unfortunate misconception that only distressed, involuntary stimming is “true” stimming.

In reality, those crisis points can sometimes (though not always) be prevented in the first place through pre-emptive, deliberate stimming as self-regulation. Why wait to do something simple and harmless that makes you feel better until you’re in such distress that it’s impossible not to? Why are our movements so shameful that they’re only accepted if we literally have no other option? It’s not all about distress and regulation, either – non-autistic people express delight and excitement through movement, and so do we! This is part of the reason why fidget spinners, Tangles and similar exist – objects designed to be moved, deliberately, whenever the user wants, with no damage done.

Of course, some stims do cause damage, not only to property but to the person. It’s a real shame that this gets used so often as a “checkmate” by people who mostly just want to tear down people who find joy and pride in their stimming and their autism, because it’s an important issue and one that’s often overlooked. I scratch at my neck or my hands when I’m really anxious or overwhelmed, though thankfully not enough to cause more than temporary redness – for some autistic people, the injuries are much worse than that. But even the stims we’d rather not have (and I have a few!) aren’t going to suddenly disappear through shame and mockery and “stop that!”. Different things will work for different people – perhaps redirecting towards a less damaging stim with a similar sensation (which again, isn’t possible for everyone), taking steps to self-regulate before reaching that stage (which is likely to mean, you guessed it, more stimming), or – my personal favourite – actually addressing the problems that are causing such distress in the first place!

For most autistic people, stimming is all of the above and so much more. Autistic people often seem to find ourselves divided into binaries – “high-functioning” and “low-functioning”, “mild” and “severe”, too often “really autistic” and “not autistic enough” – when really we’re all everything in between. Many autistic people don’t plaster their lowest moments all over their social media for the world to see – I mean, do you?! – and are then deemed to never have experienced those moments at all. Similarly, stims go far beyond one-dimensional judgements and categorisations.

They’re positive, negative, impulsive, purposeful, frustrating, joyous – and that’s okay.

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One thought on “Stimming, Stigma and Stereotypes

  1. When I was learning about autism, and wasn’t sure if I was autistic (or rather was told I’m not autistic enough), I didn’t think I stimmed. It took me a long time to realise there are various things I do that are stimming (stroking my face, lightly trapping my fingers in drawers, spinning round on office chairs, wringing my hands in an eleventh Doctorish way). I never thought of pacing as stimming, though, but I do that a LOT. Particularly when deep in thought or stressed.

    I do listen to the same songs over and over, but I get annoyed with having songs I don’t like in my head (today I had a song I hadn’t heard in years stuck for some reason). I never thought of that as stimming either. I really don’t like catchphrases and repeated phrases.

    Liked by 1 person

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