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 80% 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.
But, I do get it.
It saddens me to admit that I’ve, at times, found it difficult to be around other unmasked1 Autistic people. According to the book, Unmasking Autism,* that’s just because I’ve spent my entire life masking. I worked hard to be accepted by my neurotypical peers—to blend in—and when other people allow themselves or don’t have the ability to blend in, it’s upsetting to me. I found I project my insecurity over being authentically me—an Autistic woman—in public difficult. Therefore, when I see others who can do it, the feeling I think is anger is really jealousy. I wish I could be that secure or that unmasked in public. That feeling in me isn’t on them, it’s on me.
For example: If another 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, it over-stimulates me, on top of surfacing that jealousy which I read as annoyance.
But, I’m happy to know myself well enough now to acknowledge and accept this about myself. It feels wrong to admit it “out loud,” but it’s a reality many of us heavily masked Autistic adults experience.
I can be selfish and a relentless pain in the ass. I misread (ADHD2 and Autism) and misunderstand (Autism3) and mishear (Auditory Processing Disorder4) people all the time. Even though I do give people far more credit and grace in hindsight than I do during an interaction, if I don’t get the chance to clarify with people, that lady (me) they just interacted with is an absolute jerk.
Not all Autistic people are “selfish.” We may seem more 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 in 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 wee 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)5 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 swallowing…)
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 and long stretches of selective mutism6
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 the 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 in me, and I appreciate that my therapist gets that. In a Psychology Today article, a clinician wrote: “People engage in self-harm to avoid or manage their feelings, [and] feel pain when they are emotionally numb.”7
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 was 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 damaging youth experience—one many Autistic people claim to go through, as our experiences of and in the world are heightened due to our higher vulnerability, heightened sensory experience, often the environments we’re born into, and more.8
The permanent consequences of my youth still haunt 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—even when my plans rarely pan out due to disorganization, motivation issues, and more.9
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 and below, and 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”—in some cases, it’s a sort of “luck of the draw” situation based on unit availability within the timeframe you need to move, although higher floors do tend to cost more.
Anyhow, we had to evacuate frequently in our one-year spent below the 19th floor—even if it was a system 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 more so 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 legitimate 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-Coasty 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 experience 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?
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
P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.
What I share is not a substitute for medical advice.
Self-identification of Autism and ADHD (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.
Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.
Comment with any questions, and I’ll respond as soon as I can.
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The Effects of ADHD on Communication, ADD Resource Center
Auditory Processing Disorder in Adults: Causes and Treatment, Very Well Health
Selective Mutism & Autism, Embrace Autism
Four Reasons Why Individuals Engage in Self-Harm, Psychology Today
Autism, Adverse Events, and Trauma, Autism Spectrum Disorders, NCBI