How Society Forces Autistics to Become Inhibited & Passive

A “deleted scene” from my book Unmasking Autism: Discovering the New Faces of Neurodiversity

Photo by Baptista Ime James on Unsplash

This piece was originally published to Medium on July 27, 2022. Why I’m moving my Medium archive to Substack.

Eric, a Black queer parent in his forties had to spend years looking for a psychiatrist who would even entertain assessing him as Autistic.

He knew he wanted the potential legal protections that a diagnosis could afford him, particularly the option to take qualifying exams for graduate school in a quiet, private setting. He’d found test-taking environments to be completely destabilizing and distracting his entire life — so much so that he’d barely even gotten into his graduate program. Yet for all the exclusions he had repeatedly faced, Eric’s neurodiversity was something that white-dominated institutions around him always refused to see.

He tells me, “A former therapist said to me,trust me, if you were Autistic, you’d know by now. And I was telling him that Ididknow, Ihadknown for a while, but I needed it recognized officially!You learn to get by because you have no support, then you are denied support because you’ve found a white-knuckled way to get by.”

When Eric looks back on his life, he sees the experiences of a marginalized and unheard Autistic everywhere. He has always been obsessed with horses, collects plastic horse toys, reads all about horse breeding, and goes to sleep each night by watching “stable tour” videos on YouTube. He was nearly kicked out of private school in his preteen years for refusing to wear his itchy, restrictive uniform and for having curly, voluminous Black hair that he fidgeted with, but which his white teachers saw as a “distraction.” He was open about his queerness in a matter-of-fact way his classmates found absolutely baffling to witness in the early 1990’s.

Teachers and peers did not know what to make of Eric, and so they kept their distance. Despite all this, no one flagged Eric as disabled and in need of accommodations and support.

“You’re one of the only Black kids at all-white Catholic high school and everything about you that’s out of place is just general weirdness or a sign you’re a nerd who yes, deserves to be there, but will never belong,” he explains. “I was exhausted trying to get them to understand, so aside from a few strongly-worded letters left in my principal’s mailbox, I didn’t speak about it.”

Eric’s experience points to a really common way that Autistics become inhibited maskers — by being regarded by others as impossible to see or to comprehend for years or even decades. Initially, being invisible was not a strategy Eric deliberately adopted. He was downright candid, in fact, about what he required, and who he was.

Eric’s strongly worded letters to the principal called out some of the school’s most explicitly racist teachers, and demanded he be given the option to wear a looser, thinner version of his uniform. He pierced his own ears in the bathroom during one lunch period, drove a pink triangle-shaped bead through one of the ring posts, then marched out proudly into the lunchroom, adorned in what felt at the time like a loud and undeniable articulation of his queerness. For the most part, though, these overtures were either silenced by authorities, or very coolly and purposefully ignored.

“Was I told sometimes to settle down and get used to how the world is?” Eric says. “Absolutely, I was. But more often, I would deliver an impassioned speech about my political beliefs or ask if I could wear my sunglasses indoors, and I’d just get this blank stare. Like I had not said anything.”

Throughout our childhoods and teen years, Autistic people are quite frequently ‘corrected’ for saying things that are unusual, or socially taboo. I remember that once, when I was in fifth grade, I quoted a line I’d heard in a Looney Tunes episode to my favorite hallway monitor, only to ruin my relationship with her forever. The hall monitor had mentioned that the building felt warmer and muggier than usual. “You ain’t just blowing smoke, brother,” I said to her in affirmation, echoing something I’d once heard Bugs Bunny say.

Her eyes narrowed. “You aren’t blowing smoke either, sister,” she sneered back, palpably angry at my poor grammar, and the fact I’d referred to her with a male term.

It’s incredibly common for Autistic people to use quotes from film and television to convey our emotions, or as a stand in for a far more boring social pleasantry. Autistic people basically invented the reaction gif decades before the internet existed. But my fifth grade hall monitor didn’t understand that’s what I was doing. My odd little Looney Tunes quote didn’t just confuse her, it made her downright mad. And so she admonished me, as many adults and classmates would continue to admonish me, until I finally learned that attempting to inject levity into a routine exchange only made me seem like an unlikable try-hard.

Being reprimanded for harmless awkwardness really stays with you. I’ve never forgotten the fury that Looney Tunes quote had earned me. But I also remember the far more intense and debilitating experience of being completely frozen out. When neuro-conforming people absolutely cannot stand what you have to say, their faces go vacant and they don’t even respond. It’s even more chilling than being told you’re saying something bad. And sadly, Eric knows the effects of it all too well.

Eric says, “With my gay earrings and my stimming and my outspoken political views I was trying to say see me, see who I am, and everyone would just look past.”

People at school treated Eric as if he were not there. They didn’t remark on his style of dress, and didn’t acknowledge his accessibility requests. His principal never returned any of his impassioned letters. Kids never picked him for teams or group work. Once he had been rendered a social non-entity, wearing that cloak of invisibility was Eric’s only choice. Today, it comes to him reflexively.

“I don’t speak up at meetings,” he tells me. “When I have to write an email I ask my more neurotypical sister to read it first and dig for ways it might cause offense. I don’t interrupt anyone, ever. There are rules I have to live by, to micromanage how people react.”

Like numerous masked Autistics that I spoke to for my book, Eric learned to survive through a mix of self-sufficiency and self-erasure. Inside him, though, there was turmoil. His relationships were superficial, motivated only by his partners’ sexual desires. His hobbies were limited by his need for complete privacy: he’d assemble and paint models in his room late at night, for instance, but always packed everything up before anyone else woke up. He worked thankless, underpaying jobs and lacked the confidence to apply to college for many years.

All this invisible suffering, and the emotional invalidation that comes with it is almost a definitional experience of being a masked Autistic. We are relentlessly pushed and pressured to make ourselves silent and small. Yet it is only by refusing to be so ‘well behaved’ that we develop the capacity to advocate for ourselves at all.

…

Growing up, Maya and her little brother Zach were inseparable. Zach’s Autism was supposedly “typical”: he had loud, fist-throwing meltdowns whenever furniture was moved or his daycare changed. He hummed all day long to self-soothe. Speaking a few words took a lot of energy out of him.

Maya was the only person who could calm him down. Even when he unable to talk or look at anyone else, Zach would acknowledge Maya, and listen to her. So like many older sisters of all neurotypes, Maya found herself slipping into a quasi-parental role.

“When it was my job to look after Zach, I knew how to act and how to be,” she says. “Protecting him was my goal. Nobody ever asked about me.”

Their parents never suspected Maya might be Autistic, too. Compared to her more visibly disabled brother, she got along just fine. Babysitters loved that she was clean, quiet, and responsible. At school she ran cross-country, and was president of the yearbook committee. And throughout her teenage years and early twenties, she also was constantly on the precipice of hospitalization for her eating disorder.

“It was a way of conforming to standards,” she explains. “I had to be perfect. Thin girls were perfect. And I didn’t like most food flavors, and heaven forbid I be difficult and ask for something else to eat. I didn’t realize back then it was all an Autistic thing.”

Maya began to suspect she was Autistic after graduating from college, following several attempts at eating disorder recovery. One evening at the inpatient treatment facility where she was staying, she got trapped in an explosive, self-harming meltdown. She’d never been unable to stop herself from freaking out in front of other people before. She’d always found a place to retreat — even if it was simply inside her own mind. But as nursing staff came running to restrain her and other patients gathered to gawk, Maya was reminded of Zach’s punching and screaming, and the terrible ways that strangers always reacted. In that moment, she sorted out who she really was.

“Of course I’m Autistic,” she says. “Of course. If a kid has rules like I can’t eat anything hot and gets pissed if a family trip gets in the way of her two hours of exercise… how do you not realize something is wrong?”

Maya resents her family for not picking up on her disability. Though she recognizes she has abilities her brother might lack, she says the expectation she always be perfect and uncomplaining was traumatic in its own right.

Growing up, many Autistic girls are described by psychiatrists as more socially engaged and emotionally expressive than Autistic boys,[i] but they are still at an increased risk of bullying, loneliness, and depression. Autistic girls also experience greater social anxiety and lower self-esteem than their male Autistic peers. They’re forced to feign “normal” social behavior to a higher degree, and that takes a severe psychological toll.[ii]

As they grow older, Autistic girls run the risk of being abused by romantic partners, or of not knowing how to maintain healthy boundaries in any relationships, because their supposedly higher “social skills” are often just an elaborate system of appeasement and agreeableness.

“When I was hurting myself at the inpatient clinic,” Maya says, “I apologized for the mess it was making. As I was hurting myself. My brain was just… ruined by my belief I had to be a good girl first.”

Black Autistics children who are not sufficiently “well behaved” typically receive diagnoses such as Oppositional Defiant Disorder or Conduct Disorder instead of being assessed for neurodiversity.[iii] These disorders are commonly viewed by both teachers and therapists as precursors to much more serious problems, such as Antisocial Personality Disorder or criminal behavior — and so Black Autistic kids are even more intensely forced to stifle themselves, or risk being set on the school-to-prison pipeline very young.

It’s rare that identifying someone as a “behavior problem” leads to them getting beneficial help. Because their needs are downplayed and any sign of “inappropriate” behavior is so harshly punished, many Black Autistics go the route that Eric did, and withdraw from others. Yet even that withdrawal gets punished.

Educator and social equity consultant CrisTiana ObeySumner writes that as a Black Autistic woman, she’s been punished for introversion.

“[Colleagues] expect me to be loud and boisterous, sassy and social to such an intensity that my small, carefully spoken, and dissociated voice fills them with anger and suspicion.”[iv]

CrisTiana is truly trapped in an unwinnable spot: being visibly Autistic would open her up to ableism, so has to tamp down her stimming and her desire to hide under her desk at work when she’s stressed. But by inhibiting herself, she fails to perform the “sassy” personality so many white people expect of Black women. And so instead, they view her as emotionally withholding in an untrustworthy way. There is no social performance that grants her acceptance and understanding, or even safety. It’s a complete trap that denies her all selfhood.

…

I know dozens of masked Autistic people who adopted a “teacher’s pet” or “best little boy in the world” personality from a young age, and who are still paying the price of having done so to this day. You can’t have a balanced or healthy relationship with someone else if your primary motivation is convincing them at all times that you’re worthy and good.

Growing up, I was deeply invested in adults praising me for being “mature” and “wise.” It was the perfect counter to the shameful childishness I believed I possessed. English teachers in particular adored me because I had a massive vocabulary and could express myself well. I couldn’t actually converse with my peers, of course, but I could write a hell of an essay, or deliver speeches that won awards.

Part of me is still chasing the approval of all the world’s English teachers. Getting compliments on my writing makes me feel like my life matters. And I still struggle to ask for love and affection when a real, flesh and blood human is looking me in the face. It’s difficult for me to believe someone might care for me as an equal, and like things about me other than my intellect. I frequently have to remind myself I’m no longer a child, and don’t need approval of the “adults” anymore.

Maya’s family associated Autism with being helpless and a hindrance. Though they loved Zach, they’d learned from organizations such as Autism Speaks that Autism was a problem their family had been cursed with. Maya had to become the exact opposite of that image of disability as complicated, time-consuming life-ruiner. Today, she is still working to break out of the “well-behaved” role that’s confined her.

“I’m learning to take up space, with the size of my body, and taking up time by explaining what I can and cannot eat,” she tells me.

She’s also working on getting in touch with her anger.

“I was never allowed to be a difficult child. A normal child. My parents made everything about how having an Autistic son was so hard for them,” she says. “They can’t hear how much that hurt Zach and me.”

Maya doesn’t speak to her family anymore — other than Zach, whom she visits regularly. He lives independently in a small apartment, and once a week she comes by to drop off groceries and sit on the patio with him. Sometimes Maya speaks with Zach about all the horrible things she remembers their parents saying and doing, while he listens and hums in agreement. Other times, the two of them just sit and take in the view of the neighborhood silently.

Maya and Zach have spent the last few Easters and Christmases together, both their phones set to Do Not Disturb mode. When Maya does receive a message from her estranged parents, she sends them a frenzied, angry response. She knows it won’t change how they act, but that doesn’t matter. She’s done with self-censoring.

…

I find it easy to like certain Autistic traits in myself, but only the ones that present zero challenge to others. Being analytical really helped when I was doing research in graduate school. Having a sensitive auditory system makes it easy for me to get engrossed in good music. Even quoting media to convey my feelings has slowly developed into a skill that I can deploy at the correct moments, to amuse and entertain.

But I’ve always loathed that I’m emotionally very sensitive. My mask has always been about presenting a strong, uncomplaining face to the world. Crying was the only thing that ever gave me away.

Looking back, though, I can remembers dozens of times that crying actually saved me from a situation I didn’t want to be in. Because of masking, I instinctively tried to hide discomfort, confusion, and anger, and I reflexively would say yes to people when they wanted my attention or time. But when tears burst out of me, everyone (including me) finally had to face my discomfort.

Last spring, I was trying to watch a comedy show with my then-partner. At some point a really transphobic character appeared on the screen. A cisgender female actress wore fake facial hair and a padded masculine body, and swanned around acting like a hypermasculine, sexist pig. It’s so funny this cute woman made herself into a disgusting man, the show seemed to say.

But that didn’t seem funny to me. It too closely resembled how cisgender people tend to see me and what I’ve “done” to my body by transitioning. The fact my partner was no longer attracted to me because of my transition sure didn’t help. Sitting there next to him, watching a terrible pantomime of my real life experience of transformation and rejection, I could tell I was on the verge of a breakdown.

My partner could tell I wasn’t happy. My arms were folded and my breathing had become tight and short.

“Do you want me to turn this off?” he asked. He sounded exasperated.

He and I had been together for about ten years, and at some point he’d gotten completely tired of my sensitivities and strong opinions. Whenever I took issue with a piece of media or complained about anything, really, his eyes went dark and rolled halfway up to the ceiling. He’d physically pull away from me and turn flat and nonresponsive, as if he were profoundly disappointed in me for having needs.

“I’ll be fine,” I told him. He stared me down for a moment. I faked a smile.

Pointing out the transphobia in the show would just make him even more contemptuous and cold. He’d view me as ruining his one nightly moment of peace. I willed my screwed-up face to relax, though that didn’t help much. I pressed my tense arms to my sides. My partner didn’t care that I was upset — he was inconvenienced by me having broadcasted it too clearly. So I tried to make my sadness more subtle.

But as I continued to watch the cis woman in the fake mustache and pillowed belly dash across the screen, I began to sob, then I began to shake. I couldn’t believe I was living this way. I was trapped living with someone who didn’t want the genuine, masculine me, and couldn’t even stand that such fact made me unhappy. My crying got messy and loud. He groaned and shut off the program.

Because of masking and internalized transphobia, I deeply feared seeming “difficult” or “sensitive” or causing any kind of scene. But seeing that transphobic character in that context profoundly hurt. And there was nothing wrong with letting that hurt show. I didn’t have the will to advocate for myself during that moment on the couch — but my body did it for me. I’m so thankful that it did. And I’m so grateful that experience revealed to me just how little that my partner cared about my interior experience. I ended our decade-long relationship a few months later.

…

When I was first interviewing Eric for my book, he was still in search of an Autism diagnosis and the academic accommodations that he hoped they would unlock. Almost two years later, a lot has changed.

Eric did eventually find someone willing to assess and diagnosis him, and with that he did receive private & extended test-taking time. But by then, the pandemic had hit the United States, and Eric had realized that attending classes from home was a new life requirement. The small Christian university he was attending refused to provide this option. And so Eric got vocal— and began organizing a digital campaign alongside other disabled graduate students.

“We fought and ultimately I was told, in so many terms, that I was not going to move forward in the program if my attitude did not change. I demanded they support me in transferring out to another institution instead.”

Eric’s current university is very far from perfect — but it’s larger, and more diverse, with a disabled student coalition that has successfully lobbied for remote events and gotten wheelchair ramps installed in historic, ADA-exempt buildings. And because of the demands that graduate school has placed on his schedule, Eric has learned to stand up for himself more and draw better boundaries at work. He’ll speak up during meetings to move them along, and even ask that unnecessary ones be replaced with email or Slack. During one especially enraging class session, Eric even allowed his old, outspoken queer self to come to the fore again.

“I cut off a professor mid-lecture for sharing untrue information about lesbian separatism,” he says. “My instructor hated me, but it made me some new friends in class. Working and taking classes at home makes being direct easier. I’m in my own domain where I can be myself.”

Eric, Maya, and I are each working on unlearning our intense self-censorship, which began instinctual for all three of us after a lifetime of erasure and abuse. It’s difficult for masked Autistic people to be in touch with our real emotions, or to know how we truly wish to live, because our every social interaction is so carefully monitored and filtered. But we are learning, moment by moment, to open up the gates to our sadness, our righteous rejection of injustice, and even our anger — unleashing these feelings may inconvenience neurotypical society, but it’s absolutely essential to setting ourselves free.

This essay is a “deleted scene” from my book Unmasking Autism: Discovering the New Faces of Neurodiversity. You can find the book anywhere books are sold.

References:

[i] https://thisisforyoucarrie.wordpress.com/2020/07/22/cringe-culture-is-neurotypicalist/

[i] Stewart, T. (2012). Adultism: Discrimination by another name. The 21st Century Black Librarian in America: Issues and Challenges, 75–78.

[ii] https://www.cnbc.com/2020/07/16/parents-say-school-reopening-plans-leave-them-without-any-good-options.html

[iii] Zablotsky, B., Bramlett, M., & Blumberg, S. J. (2015). Factors associated with parental ratings of condition severity for children with autism spectrum disorder. Disability and health journal, 8(4), 626–634. https://doi.org/10.1016/j.dhjo.2015.03.006

[i] Head AM, McGillivray JA, Stokes MA. Gender differences in emotionality and sociability in children with autism spectrum disorders. Mol Autism. 2014;5:19. doi: 10.1186/2040–2392–5–19

[ii] Sharpley, C., & Bitsika, V. (2020). The Association between Self-Rated Social Anxiety, Social Functioning, and Eating Disturbances in Girls with Autism Spectrum Disorder. International Journal of Disability, Development and Education, 1–15.

[iii] Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of autism and developmental disorders, 37(9), 1795–1802. https://doi.org/10.1007/s10803-006-0314-8

[iv] https://southseattleemerald.com/2018/12/05/intersectionality-what-it-means-to-be-autistic-femme-and-black/