A Body in Perpetual Motion

When I first began to consider the possibility that I might be autistic, several arguments against it immediately sprang to mind.

One of these was: but I don’t stim! Or rather — I do, because everybody self-stimulates once in a while, but I don’t stim the way autistic people do, repetitively and constantly. I don’t flap my hands, or rock, or hit my head — in fact, I can’t ever recall flapping my hands or hitting my head, even when I was an abused kid and had all the reason in the world to do so.

But once I started listening to adult women on the spectrum, most of whom were diagnosed in adulthood, all of whom were adept at masking (camouflaging their autistic traits), my concept of ‘stimming’ expanded dramatically.

I felt a wrench in my stomach as I recalled how as a child I used to rub the flat side of my right thumbnail in an ellipse around my lips. Over and over again, incessantly.

“Get your hands away from your face,” my mother would snap, “or I’ll make you suck your thumb.” This was not an idle threat; she had already forced me (as a child of perhaps nine or ten) to suck my thumb in public. Mortified, I would jerk my hand down.

But it would always creep back up again. Forty years later, although I had shied away from thinking about it, I knew I still sometimes made that same little repetitive motion with my thumb over my lips. Never in front of other people — so somewhere along the way I must have internalized that social prohibition. But it also never went away entirely. Once my questions about autism caused me to focus on it, I felt the old, deep shame resurface.

Over the next couple of weeks, I made a point to pay constant, careful attention to everything I was doing with my body … and so amassed a lengthy list of highly repetitive fidgeting. Turns out I’m doing this shit all the freaking time and I had no idea.

I touched my face, and in particular rubbed my lips, in many more ways and a lot more often than I had previously realized — but only in private, or occasionally around my husband when he wasn’t paying particular attention to me. It strongly correlated with both reading and intensive thinking — things that required strong focus.

I never made a conscious decision to substitute my lip-rubbing with more socially acceptable stims while around other people, but they seem to have busted forth anyway. Over those two weeks I catalogued the following less visible, but still highly repetitive ‘public’ stims:

• I used the side of my right index finger to trace a circle around the outside of my right thumbnail.
• I used the tip of my right ring finger to trace a circle around the outside of my little fingernail.
• I curled my hand in, rubbed my right thumb down the last two nails, and then finished a circle by rubbing all four fingertips across my right thumbnail. (Sometimes I did that cycle with both hands at the same time.)
• Alternatively, I curled my right hand into a circle, then flicked each finger out from behind my thumb, starting with the little finger and moving to the index, so that the sound makes a repeating ‘gallop’ pattern. (And again, sometimes I did that with both hands. But never just the left — I am strongly right-hand dominant.)
• Sometimes I did the gallop finger-flicking but interspersed flicking my thumbnail from behind my forefinger, so the pattern is four sixteenths and then a quarter note, repeating.
• I counted very fast from one to ten on my right hand in ASL, while counting in English in my head. (This is the only one I consciously adopted, and it dates back to college. I do this while I’m walking somewhere in public; it gives me something to focus on so I’m not distracted and made anxious by my hyperawareness of every nearby person.)
• I stiffened my hands, interlaced the straight fingers, and circled my middle knuckles around each other. (This one also seems to be for mental focus, as I only did it when I’m engaged in conversation.)
• I interlaced my curled fingers and gripped hard while rubbing my right thumbnail with the flat of my left thumb. (This one cropped up under acute stress or sensory bombardment.)
• When both hands are busy, I switched to rubbing my front teeth together, back and forth. (I’m doing it right this second as I type.)
• Or I bit down and/or chewed on the inside of my cheeks at the corners of my mouth.
• I lifted the toes of one foot while pressing down the toes of the other foot, then rapidly reversed.
• I folded my arms in front of me and petted one arm above the elbow with the opposing hand, or sometimes both arms with the opposite thumbs.
• I sat with my knees folded up and pet the soft hairs on one knee.

Clearly I have a strong need for constant tactile stimulation. I’m always doing at least one of these things, and sometimes two — I might be alternating toe presses while also rubbing my lips, for example.

The strangest thing about all of these behaviors is that they feel ‘right’ in the moment, after I’ve unconsciously begun them … but if I pick one at random to replicate, it feels awkward and uncomfortable. I don’t know why that is.

I also have other frequent fidgets which are less obviously and immediately repetitive but which probably still count as stimming:

• I tie my hair up in a knot, take it down, tie it up again.
• If I have a ponytail or a braid I’ll fiddle with the ends of the hair — petting it, twisting it around my fingers, and so on.
• If I’m really distressed, I may grab at the flesh of my thigh or upper arm and squeeze really hard, hard enough that it hurts.

Oh, and I do rock back and forth when I’m upset enough to be crying, but I didn’t actually count that, because … doesn’t everyone rock when they’re crying? (Wait, have I actually seen anyone else rock while crying? … No. Huh.)

All this, from someone who didn’t think she stimmed. Looking at this list, and realizing that there is literally never a waking moment when I’m not doing one of these things, was astonishing to me. I pride myself on being highly self-aware, so I feel abashed for having missed this entire category of my own behavior. I didn’t even think I was an unusually fidgety person!

Recognizing my stimming behaviors was one key part of recognizing that I am, beyond the shadow of a doubt, actually autistic — and that has been a source of great freedom and relief.

Now that I know, I can start to make conscious decisions about stimming for the first time in my life. A looming question for me is: what would my stimming behaviors be if I were free to do whatever feels best?

Our culture has a lot of frankly quite arbitrary unspoken ‘rules’ for what sort of stimming is acceptable. Hand-flapping is considered alarming, but nail-biting is not such a big deal. Girls can play with their hair, but boys must not. And so on.

A lot of autistic people believe that any stim that isn’t injurious is a good stim. And while the advantages of appearing socially acceptable are obvious, I was surprised (and somewhat distressed) to learn about the negative repercussions that suppressing natural stims can have for autistics.

For one thing, suppressing or rechanneling stims uses executive function resources which may already be in short supply; allowing oneself to stim may free up one’s brain to handle other processing or control tasks. Could I be more functional if I stimmed more or differently? That would sure be nice …

Second, stimming is a way of coping with emotional or sensory overload — two things I struggle with very frequently. It can help us focus on a task, by giving us a sensory input that is stronger than the other environmental inputs. Obviously I must already be using stims for those purposes, but in a very suppressed and often relatively subtle way. Would I be better able to focus, or to regulate my emotions and sensory responses, if I stimmed more naturally and obviously? That could also be really useful.

The first thing I’m working on is freeing myself as much as possible from the shame and self-disgust of touching my face and lips. I’ve done similar work on myself before (my childhood was basically soaked in shame) and although it’s not easy or fast, I know it’s emotionally vital.

I’m also starting to explore the world of stim toys — gadgets designed specifically for (and often by) autistic people to help us stim better and without self-harm. I don’t know if any of them will work for me, but frankly just the fact that this sort of thing exists makes me cheerful.

Will I change my public stimming behaviors? That’s a question which will take me some time to navigate, because there’s a lot to unpack there. I may write about it again when I’ve worked it out further.

1 November 2019

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