Until recently, I had no idea what stimming was. Even though I regularly engage in stimming behaviors—even though I have done so for as long as I can remember and probably before—I had never heard the word.
I suppose that makes sense because my diagnosis and my claiming of neurodivergence as a crucial part of my identity is itself a relatively recent development, but my repetitive methods of self-soothing are definitely not new. Stimming—short for “self-stimulation”—is often an indicator of autism spectrum condition.
Hand flapping, rocking back and forth, echolalia (repeating of words and phrases), etc. are classic stims. Me? When I was a little kid, I would suck my left—always the left—thumb and rub the silky tag attached to the backside of my stuffed Big Bird, and I did it so much that my mom had to sew new tags onto poor Big Bird’s butt every time I wore one out.
Echolalia is a thing (now known affectionately as ‘Asperger’s-ing’ in my family’s home), and I pick my lips, chew the insides of my cheeks, and bite the cuticles of my fingernails. Granted, the oral stimming introduces germs and leaves me with more canker sores than the average person probably gets, but for the most part, no harm, no foul. Right?
It took me until I was nearly twenty years old to discover, if you will, what is easily my most problematic stim: hair pulling. One night, I noticed a single curly strand in my otherwise perfectly straight head of soft, shiny hair, so what did I do? I plucked it, of course.
But I never imagined the devastation that would be wrought by that innocent little pluck. I never dreamed that it was the beginning of the end for the hair that had more than once been compared to the hair of a Pantene model. One pull. That’s all it took. One pull, and I was hooked on a behavior that haunts me to this day.
This newfound “compulsion” of mine seriously freaked me out. I did some googling and learned that hair pulling has a name: trichotillomania. It even sounds slightly insane. I must be crazy, I thought, because no one in their right mind would willingly, voluntarily pull their own hair out.
Yet, there I was.
I tried to reassure myself that it wasn’t that bad: it wasn’t like I was stripping myself bald or something, even if I did have a few small patchy spots.
When the hair would start to grow back, I couldn’t stand the stubbly regrowth, so I would pull it out all over again.
It’s not that bad? I would sit for hours on the bathroom vanity, pulling, just one strand at a time. I was fixated on the slimy little hair roots, and I would keep pulling until I got a root, which I then proceeded to drag across the back of my hand just to feel its slippery wetness. Then I would stick the hair, root and all, to the full-length mirror in front of me until my reflection was spattered with long brown hairs topped off with the silvery, bulbous roots.
When I finished, and there was always a point when I knew I was finished, I made sure to spritz the mirror with Windex and wipe away the evidence of my pull-fest. It was bad. I knew it, and while I felt deeply ashamed of what I was doing, I just… couldn’t stop.
Of all the quirky things I did—and in many instances still do—this one felt the most out of control. Each pull was like an orgasm in miniature, and I just couldn’t stop.
When I finally fessed up to my therapist, I was told to chart my urges and count the number of hairs I’d pull in each episode. I scoffed at this because it sounded so absurd, and I still think it was absurd. Maybe it works for some “trichsters,” but it didn’t do a thing for me, and I became very discouraged very quickly.
I tried all the tricks (pun intended): wearing a ponytail, applying hand lotion, squeezing a stress ball, playing with a Rubik’s cube, knitting, etc. I even rubbed Elmer’s glue all over my hands. I was prescribed a grand total of seven different medications, but aside from a brief placebo effect, they didn’t touch my hair-pulling urges.
Cognitive and dialectical behavioral therapy didn’t help. My once-beautiful hair grew thinner by the day, and I found myself wearing a bandana all the time to conceal the damage I was causing. I was at my wit’s end, and by the time I reached my late twenties—my ASD still undiagnosed—I knew it was time to do something drastic.
I shaved my head.
Perched in front of the mirror one more time, with trembling hands, I took the scissors to my waist-length ponytail. Then I dug out the clippers and sheared my scalp. The actual shaving was the easy part. The aftermath, in the form of a pile of hair on the ground at my feet, was somewhere between terrifying and exhilarating.
Only my immediate family knew my dirty little secret—most people assumed that I wore the bandana as a fashion statement. That word, I decided, would be my explanation.
I so desperately wanted to stop pulling my hair out, and yet, even rocking a bald head didn’t put an end to it. Instead of grasping long hairs between my thumb and forefinger, I began plucking the stubble with tweezers to get my stimming fix, but I still didn’t understand that my compulsion to pull is related to the fact that I am on the autism spectrum. I didn’t even know I was on the autism spectrum!
After two years of relative baldness, I grew my hair out—and continued to pull it out. My therapist urged me to try Prozac, but I was reluctant to change my meds because their combination kept my severe depression at bay. Then one day, I had an especially bad pulling episode, which left me with an extremely painful, nearly quarter-sized bald spot on the back of my head. Finally, I’d had it: I called my therapist and begged for that Prozac prescription.
That was five years ago. The Prozac helps like nothing else ever has, but the urges to pull have never gone away, and in extremely stressful moments, I find myself rooting through my hair in search of that perfect strand. It calms me down. It feels good. Stimming generally does, which is why people do it. ￼
My hair pulling is a harmful form of stimming, and I do my best to stim in less self-injurious ways, but in that, I admit I am not always successful. I have been left with lasting damage, too—my hair is soft and straight in some places, and curly and coarse in others, and in my favorite pulling spots, it has grown in white. I am deeply self-conscious of my “scars,” but I have resolved to own this particular battle.
For me, knowledge truly has been power. My autism diagnosis has given me a new perspective, and it explains so much about why I am the way that I am—everything makes sense now, including trichotillomania.
It is an uphill climb, and some days are better than others, but I am slowly learning to wear my hair as a badge of honor. After all, having been a woman with a buzz cut taught me to look staring strangers in the eye, and really, why shouldn’t I?
It takes guts to let one’s proverbial freak flag fly.
- Trichotillomania: When Stimming Turns Self-Injurious - February 18, 2020
- The Coveted Driver’s License. On Driving (or not) While Autistic - January 24, 2020