In my last post, I talked a little about how important self-stimulative behaviour or “stimming” is to autistic people. As I mentioned, I am not allowed to stim at my desk at work. One thing I’ve learned: my hands are not made to be idle. I am a natural fidget, always typing, or knitting, or scribbling out notes. I am not inclined to sit still. When I was younger, this came out in flicking through books as the teacher talked, or typing at least partially for the sensation of impact on my hungry fingertips. At university, I channelled this into knitting, baffling my indulgent lecturers with my ability to produce notes while knitting. One of my favourite stims is my spinning wheel, which combines the visual, mechanical aspects of stim videos with a constant, repetitive, rhythmic movement of my hands and feet. The sense of contentment it gives me is difficult to describe, the relief of stretching out sore muscles combined with the hypnotic, out-of-time sense of being totally absorbed in a good book, a moment when my dyspraxic, uncoordinated body is in sync with my brain. My ideal working environment would be one where my constant need for motion went unnoticed. On a good day, the effort of staying still takes up an unnecessary amount of my brainpower, but is otherwise harmless. I do not like to talk about what happens on Bad Days, but following my previous post on accessibility in the workplace, I feel that talking about bad days when I can’t stim is a necessity.
(Content warning: discussions of self-harm, harmful stimming, and internalised ableism below)
Getting to a place where I can sit for 9 hours without visibly stimming has been a very rough process, and not one I would ever recommend to anyone else. One of the reasons it became very hard to post for a while, and why I wrote my last blog post on autism and employment, is because in an ideal world, stimming at work would be considered a necessary and simple accommodation for employers to make, and I wanted to increase the visibility of this as an issue autistic people face on entering the workplace. Stimming isn’t just an awkward habit or tic, as it may appear to neurotypical individuals. It fulfils a very physical need, and trying to stop it can be incredibly harmful to our wellbeing.
I was ‘requested’ to stop visibly stimming at work in my previous role last August. Less than a week later, I began to develop uncontrollable ‘tics’ in my now-stilled hands – I would find myself slamming them into walls or onto hot surfaces, scratching my arms and wrists, and picking at any healing injuries on my skin. I became afraid to handle knives or cook using hot surfaces because I could not trust my brain or my hands, and I was frequently dizzy, nauseous, and overwhelmed by the combined stress of work and these behaviours I had no control over. In a word, I felt possessed, living out a very literal version of “idle hands do the Devil’s work”. I was wrong. My brain was setting off all its alarms to get me to pay attention to its needs.
While I was aware that self-injurious stimming was an issue a lot of people in the community had dealt with, I never thought of it as something relevant to me. It was a symptom usually displayed by children or non-verbal adults, a form of expression for people with no other means of communicating “this is too much” or “I need other input.” This thought process was the result of internalised ableism, drawing a line between “them” and me, when I should have paid more attention to our similarities than our differences. We all stim for the same reasons: because it brings us joy, allows us to self-regulate overwhelming sensory or emotional input, and helps us self-soothe when stressed. The medical professionals I spoke to had no idea what to make of my symptoms or how to help me, and it took me a long time to connect the dots on my own. Even after I realised what was causing these symptoms, it took months for the more physical symptoms to subside, and I am still living with much more physical anxiety and stress surrounding work than I know would be possible in an ideal world.
This is not a success story. I do not want anyone who is autistic or spends time around autistic people to read this and think “Stimming can be stopped with enough willpower!”. That is the line of thought behind ABA therapy, and which led Ivar Lovaas to come up with the “aversive stimuli” that inspired it: loud noises over 100 decibels and rooms with electrified floors (discussed in Steve Silberman’s Neurotribes, pp. 308-309). Electric shocks or “electroconvulsive therapy” is still used to control self-stimulative behaviours in schools for autistic students across the US, and is still touted as “saving some children with autism”. I am not a scientist or a doctor, and I am aware that the same treatment is occasionally used for severe or life-threatening depression, but I am deeply uncomfortable with its use on individuals whose ability to articulate their suffering is more limited. The answer should never be “less stimming”. The answer should be “harm-free” stimming: self-injurious stimming can be redirected to less destructive methods that provide the same kind of input, as Kristen Lindsmith describes in the article I linked to above.
I don’t mean to condemn my previous manager. As I mentioned, there aren’t many resources on managing autistic people out there, and still less official guidance on stimming in the workplace. At one point, I watched her type “knitting at work rights” into Google, so it’s not that she didn’t try. The problem is that the only people I’ve come across with a brain quite like mine, for whom knitting is a useful and necessary part of concentrating, are my girlfriend, and Terri Ash of Geek Calligraphy, an artist I recently encountered on the podcast Productivity Alchemy. In the episode I’ve linked, she says:
“I have that kind of need to keep the hands busy to concentrate, and fidget-spinners don’t work, fidget cubes don’t work, knitting works.”
The point I am trying to make is that every person on or adjacent to the spectrum will have stims that are unique and necessary to them and their working process, and ideally every employer or loved would happily adjust to working with the stims rather than against them. We should not have to go through electro-convulsive therapy, ABA, or months of feeling afraid of our own hands, because our behaviour looks unprofessional, distracting, or otherwise makes allistic people feel uncomfortable. If we want to create a society where more autistic people are able to acquire and hold down jobs, it is crucial that the workplace adapt to what “productive” looks like for us, whether that is fidget-spinners, hand-flapping, or knitting. We need a workplace where the concept of “professional behaviour” stretches to match the diversity of our brains.