Let Autistic People Stim!

I don’t always see eye-to-eye with my mother, the parent of an autistic young adult woman (hello), but one thing we will be prepared to firmly agree on and publicly declare is that vaccines did not cause my condition, and in all likelihood have not caused anyone to develop autism which was not already present. A purely anecdotal but kind of strangely wholesome reason for our agreed belief is that I have always stimmed, way before vaccines. Even as a baby, when everyone thought the flappy hands were just a cute expression of excitement. Even before I was born, while in utero, though at the time it was just presumed I moved around a lot.

We should probably clarify the definition of “stimming.” The term has been increasingly used, particularly within autism communities, as an informal alternative to “self-stimulatory behaviors,” which often include: rocking, hand flapping, tapping/slapping joints, pacing around a space, and/or repeating sounds/phrases (also called “echolalia”). It can essentially include any physical behavior an autistic person uses to help them cope with the intensity of emotions or physical stimuli and processing information.

For example, I often use echolalia to take in information someone tells me verbally, by repeating the end of a sentence. This is because my brain is slower to register information I hear rather than see, and repetition helps speed up my cognitive process. Sometimes NT (neurotypical) people also have their own form of stimming such as bouncing their leg, twirling their hair, biting their nails, etc. However, these behaviors often aren’t as noticeable compared to those displayed by some autistic people, and tend to be considered more culturally and socially acceptable.

Autism is often described as an “invisible” condition because there are no physical markings or mobility devices that would immediately give away that our brains are different. However, my stimming has often been the first sign that I could be a bit “different” in how I experience the world. I’ll often pace around a certain space, whether it’s a train platform, a bus stop, a supermarket aisle or my own kitchen. I like doing this. It makes me feel free. I’ll also often flap my hands, tap my joints, and be quite twitchy simply while sitting and talking to someone, in a way I can’t really demonstrate unless you catch me doing it in the moment. If I do this around you, it’s a positive thing because it means I feel relaxed during the conversation.

The main issues from stimming arose as I got older, because people stopped seeing the small kid expressing herself as “cute” and progressively started seeing a taller, bigger person with increasingly adult features expressing the exact same behaviors as “distracting,” “unnerving” and “freakish.” My family started asking me to “tone it down” in restaurants. It’s accurate to assume it made me a target of bullying at school. Unfortunately, I dated a guy who would hiss in my ear that I was embarrassing him whenever a passerby clocked me mid-stim and gave a sad smile which indicated they thought I must be “special” i.e. not self-aware.

Sometimes I can use “social masking” as an attempt to hide my stims, which means I have to be constantly on guard, aware of every single movement I make, always focused. This is the mode I am more likely to be in while I’m concentrating intensely on a task or on shift at a work placement, or on stage when I’m an actor playing a role. Now I love being an actor, reading scripts, and building the list of wild characters I have taken on for the sake of entertaining and emotionally moving others. What I don’t love is being forced to be an actor of sorts even when I’m supposed to be representing myself. You can probably imagine it leaves very little space for establishing my own identity, and the older I get, the less time and energy I have to push that sense of self aside.

So I stim happily in public and choose to laugh at incidents like the old lady who accused me of being high on drugs at midday in a Costa cafe. Sometimes strangers do come up to me to ask if I’m all right and whether they should be concerned. I’m always happy to be open with them and explain what I’m doing and why it’s nothing to worry about. We might still have some way to go, but the responses are definitely getting more accepting as awareness of autism and other neurological differences increases.

My hope for autistic people who are reading this and can relate at all is that you minimize any priorities for those who won’t let you be yourself. Surround yourself with people who value acceptance, are willing to listen, and find the most authentic version of you to be the most likeable. Please embrace the stims that make you happy.