Full circle
Full circle
In recognition of Autism Awareness Month: Self-acceptance, stimming, control, and personal growth.
Content Warning: This post contains mentions of self-mutilation. No detailing, but if this will trigger you, I recommend skipping this week's post. Thank you.
I fidget and “stim” in public now.
I’m 36. My hair is 100% salt and peppered. My vision gets worse each year. My brain is a finicky bitch. And my body is a powerhouse, but it and all of its systems are assholes at the same time. I reserve the right to make other people feel uncomfortable, or allow their base instincts to judge the questionably aged lady fiddling with a tiny gaming-remote-looking-thingy. Or swaying back and forth in a motion that calms me, but apparently makes some people feel anxious.
Sorry, but not sorry—to borrow an overused phrase.
I get it.
It saddens me to admit that I’ve, at times, found it difficult to be around other unmasked
autistic people. If the other autistic person shows several self-stimulatory behaviors (especially movement-based ones). Or if an autistic person is chatting with you, but only wants to discuss their extremely niche, limited interests. Or if they can’t stop interrupting a group chat to go on and on about their niche, limited interest, I get it—at this point in my life, I can’t handle a Zoom call full of autistic people right now.We can be “a lot” to handle. And unless I’m in a good place, I can’t handle others like me.
I’m happy I know myself well enough now to acknowledge and accept this about myself. But it feels wrong admitting it “out loud.”
I’m selfish and a pain in the ass. I misread (ADHD
) and misunderstand (Autism) and mishear (Auditory Processing Disorder) people all the time. Even though I give people far more credit and grace in hindsight than I do during an interaction.Not all autistic people are selfish, to be clear. My “selfishness” seems to be the product of (externally) part Autism, and part having parents more interested in their own contentment than that of their children’s. (Okay, yes, they both are/were probably autistic, too. But stating that kinda takes away from my point: Not all autistic people are “selfish.” We may seem a bit self-involved because we’re navigating and interacting with a world absolutely not built with us in mind. That can be difficult to not occupy a good deal of space in one’s brain.)
I remember a time when my dad told me to “sit still” in public. I was squirming on a bleacher seat in the middle of a wet and humid summer day, at a loud drag racing event in Daytona, FL. I was maybe 10 years old, and extremely uncomfortable. It was the first time I wore a particular fabric (I think lycra) which made it feel like the skin on the back of my thighs waffled between the fabric weave. And the whole area became irritated and itchy—like a million gnats squirming across and biting up my flesh repeatedly.
I was more afraid of being socially exiled, so I complied. Tears welled, and I chewed a line of lesions into the inside of my cheek. But I suffered in silence for the comfort of others. I earned the title of the “good kid” my dad always said we were as young ones. And I was going to get recognized for it, dammit. (Well, we were only acknowledged as good kids in public, to be precise. Kids who were only seen and not heard -type of situation.)
His repeated “stop that”'s merged with other criticisms from family and teachers and peers. And my childhood “stims” (short for self-stimulatory behavior: repetition of physical movements, sounds, words, moving objects, or other repetitive behaviors)
went from swaying, rocking, hair-twirling, toe-walking and more—most being noticeable actions that embarrassed my family—transitioned into self-contained, but more damaging stims:nail-biting
sides-of-finger chewing (and eating…)
inside-of-cheeks chewing
digging my fingernails into my palms
locking myself in my room for 24+ hours without food or water (for sensory deprivation)
hurting myself (scratching, punching, etc.)
to, later, self-mutilation
Telling me to stop, over time, ceased the safe-to-me stims and simply made me less annoying to others. It also added another layer of self-consciousness and anxiety, chipping away at my self-esteem, and driving me to hurt myself as a form of controlling the inner pain and chaos from the outside. I do take responsibility for my actions, mind you. But I still acknowledge how fear of societal rejection and anxiety pushed me toward more damaging, dangerous stims.
I don’t “blame” my family for my self-mutilation. But I wasn’t allowed the space to communicate with figures of authority in my life, nor “allowed” to ask for help. (When you’re constantly rejected and/or shamed for asking, you assume asking isn’t allowed.)
During that time, I dealt with a lot of external, emotional, and even internal pain that wouldn’t start getting diagnosed and begin treatments for another 18+ years.
Self-mutilation was a bandage to take my brain off the factors outside my control. And to briefly alleviate emotional pain.
It was one thing I could control in a life I had zero control over.
I don’t encourage self-harm. But it was how I got through my teen years. It wasn’t a sign of suicidality, and I appreciate that my therapist gets that. Psychology Today wrote: “People engage in self-harm to avoid or manage their feelings, (and) feel pain when they are emotionally numb.”
And now my body is covered in scars. A couple of times when I’ve needed hospitalization for something (else), and a nurse noticed my hidden-to-the-world but noticeable-in-a-hospital-gown/situationally noticeable scars, I’m then put on mandatory suicide watch with an assigned nurse, and (one time) with a security guard posted at my bedside at all times.
There was no amount of explaining the misconception that got those people to leave me be. I understand, in retrospect. In the moment, however, it’s a bleak reminder that I’ll forever get judged for a detrimental youth.
And it still haunts me in adulthood, literally and figuratively.
Returning to healthier stims now: Swaying and using (quiet) fidgets in public is a giant feat for me.
I no longer get angry with myself for repeating words, phrases, and even song lyrics in my head, either. It's not bothering anyone else, and my brain will eventually tire of it and move on.
Still, if you don’t know me in person or if you haven’t noticed, I have a terrible relationship with control. I’m obsessed with it. I plan everything out to a “T” whenever I can. And when I can’t, I still try to.
Every day—even if I know I’m not going out—I put on makeup, do my hair, get completely dressed, make my bed, etc., etc., etc.
This wasn’t always the case. External factors incited these actions, and I just kept them as a way to control any potential chaos that might arise.
Getting fully dressed was because, when we first moved into our building on a below-the-19th-floor level, the fire alarm went off constantly. (Our building splits its alarm system based on whether there’s an issue on floor 18 or below, or above the 19th floor. For some reason, the alarm goes off below the 19th often. There’s no intentional-that-I-can-tell hierarchy in the building. Higher floors don’t mean “better tenants” or even wealthier tenants (all the time)—it’s a sort of “luck of the draw” situation based on unit availability within the timeframe you need to move.
Anyhow, we had to evacuate frequently in our one-year spent below the 19th floor—even if it was a malfunction. And after feeling extremely uncomfortable while stuck outside in my “housework clothes,” I fully dress myself every day now.
I’m only 5’4”, but I’m a big woman who's built like a curvy linebacker. My oldest noted that my physique is intimidating, and maybe I “just scare people.” Heck, literally just a moment ago, Brian teasingly grabbed my lax upper arm and said, “My god! Your arm is like my calf!” (His legs are solid muscle.)
It’s genetic.
The housework clothes only made me look like I may randomly tackle someone out of the blue. (Probably because it had exposed shoulders. On the daily, I wear black bolero crops with three-quarter sleeves which significantly reduce how broad I appear. So, I assume it also makes me seem less physically threatening.)
Learning that my sturdy build is terrifying didn’t help my complex, though….
One day, we were out of our apartment for hours due to a legit alarm (some idiot on our floor, actually, threw a kindling cigarette down the garbage chute in a non-smoking building), and I was dressed in the housework clothes. I was incredibly uncomfortable. I haven’t felt self-conscious like that since high school, but it felt like everyone from our building was staring at me. Judging me in their passive-aggressive, West-Coast way.
I refused to ever be in that position of unnecessary vulnerability again, if I could help it. So, I ready myself and dress like I’ll get stuck outside my house every day now.
It’s a catch-22 of sorts. I’m fine to let myself utilize healthy stims in public now, but won’t be caught dead without my daily “uniform” on.
Where one unhealthy complex dissolved, another sprouted, firm in it’s place.
But it’s all truly about control, isn’t it? I can somewhat control my mood and ability to remain in social environments by allowing myself to stim in public. And I control how I feel even before leaving the house by fully readying each day.
It makes me think of a saying (which I’ll butcher) that my dad used to say shortly after my younger brother got his driver license. He said, “Never get caught in a car accident with dirty underwear.” I assume it meant that if you died, you wouldn’t somehow have afterlife embarrassment about filthy drawers(?).
Although that’s not applicable to me (Haha—sorry), my version of clean nether garments is a fresh, light-makeup’d face, styled and hair-sprayed hair that I keep super-short for sensory and control reasons, and by wearing my everyday clothes, every day.
Whatever equals contentment and comfort, right?
But I’m here. This setup works for me. It keeps me out in the world and off local society’s radar.
I’ll fidget, I’ll stim, and I’ll control what I can that helps me enjoy the things I want to do. And that’s what matters to me.
Do you have a stim or ritual you need or perform to “get by” each day? How about fallback actions that support your comfort and ability to complete a day of work at the office, or simply to feel comfortable in your own skin?
Share it in the Comments, or respond to this email with your story.
My best,
Sara
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The Effects of ADHD on Communication, ADD Resource Center
Auditory Processing Disorder in Adults: Causes and Treatment, Very Well Health
Four Reasons Why Individuals Engage in Self-Harm, Psychology Today