Unmasking Autism: Discovering the New Faces of Neurodiversity

by Devon Price

In fact, Autistic traits can manifest in downright paradoxical ways. At times, I can be so intensely focused on a task (such as reading or writing) that the rest of the world entirely drops away. When I’m hyperfixating, I fail to notice things like someone speaking to me or smoke filling the room because I forgot to turn the oven off. At other times, I’m an anxious and distractible wreck, unable to make my way through a single sentence of a book because my pet chinchilla is hopping around in his cage and making the bars rattle.

These two very disparate responses have the same root cause: the overexcitability of Autistic people’s neurons and the inconsistent way that we filter stimuli (at least compared to allistics). We tend to be both easily disturbed by sound in our environment, and unable to tell when a noise actually merits our attention, at the same time.[44] I often brute-force my way into paying attention to something by shutting the rest of the world out. I think it’s also likely that lifelong masking has rendered me hypervigilant, almost as a trauma response. My sensory system is used to scanning the environment, to determine whether I’m alone and thus “safe” enough to be myself. Trauma survivors often become hypervigilant,

An Autistic shutdown happens when an Autistic person gets so overstimulated and stressed, they can no longer process their surroundings.[51] It’s the quieter, more interior counterpart to an Autistic meltdown, which tends to involve more crying, self-harm, or outward aggression. Shutdowns are essentially a way of dissociating from one’s surroundings. It can look like falling asleep very suddenly, becoming unresponsive, or just kind of zoning out (which is how it presented in Crystal’s case). Crystal suspects that had she been an Autistic boy, her shutdowns would have been viewed

The idea that Autism is a “boy’s” disorder goes all the way back to when the condition was first described at the turn of the twentieth century. Hans Asperger and other early Autism researchers did study girls on the spectrum, but generally left them out of their published research reports.[55] Asperger in particular avoided writing about Autistic girls because he wanted to present certain intelligent, “high-functioning” Autistic people as “valuable” to the Nazis who had taken over Austria and were beginning to exterminate disabled people en masse. As Steve Silberman describes in his excellent book NeuroTribes, Hans Asperger wanted to spare the “high functioning” Autistic boys he’d encountered from being sent to Nazi death camps. Silberman described this fact somewhat sympathetically; Asperger was a scientist who had no choice but to collude with the fascist regime and save what few children he could. However, more recently unearthed documents make it clear that Asperger was far more complicit in Nazi exterminations of disabled children than had been previously believed.[56] Though Asperger held intelligent, “little professor” type Autistics close to his heart, he knowingly sent more visibly debilitated Autistics to extermination centers.

In fact, the developer of the first therapeutic “treatment” for Autism, Applied Behavioral Analysis therapy, was Ole Ivar Lovaas, who also invented anti-gay conversion therapy.[58] That legacy still haunts the lives of many LGBTQ Autistics, who often feel out of place both in mainstream queer spaces and in Autism groups.[59]

Most of us are haunted by the sense there’s something “wrong” or “missing” in our lives—that we’re sacrificing far more of ourselves than other people in order to get by and receiving far less in return.

If you’re reading this book, you probably suspect that you or someone you know is a masked Autistic, or otherwise neurodiverse. I have been writing about my own journey of Autistic self-discovery for many years now, and every single time I post online about it, I’m inundated with messages from people who are questioning whether they’re on the spectrum, and want my advice on how to find out. Usually, their first question is how to get tested for Autism Spectrum Disorder. My initial response to that is to present them with three questions: Do you have health insurance that covers Autism assessments? Can you find an Autism assessment specialist in your area who has a proven track record of working successfully with Autistic adults? What do you hope to get out of a formal diagnosis?

The first and second questions can prove quite dispiriting to answer. In the United States, many health insurance plans do not cover Autism assessment in adults.[69] A limited number of specialists are qualified to assess and diagnose Autism (your average psychologist can’t do it), and the diagnostic process typically involves multiple tests, screening surveys, and even interviews with the Autistic person’s family and friends. Without insurance coverage, this process can cost anywhere from $1,200[70] to $5,000.[71]

Some people whom I interviewed for this book reported being turned away by multiple assessors, for things as simple as being a woman, dressing well, or having voices that weren’t completely monotonous. Sometimes assessors decide to give adults labels they view as less stigmatizing, such as nonverbal learning disorder, rather than identifying them as Autistic explicitly.

Additionally, an Autism diagnosis does not grant you access to any particular therapy or medication, because there are no evidence-based treatments for Autism in adults.

For all the reasons outlined above, I firmly support Autistic self-determination.

I prefer the terms self-determination or self-realization to self-diagnosis, because I believe it’s more sensible to view Autistic identity through a social lens than a strictly medical one.[75] Diagnosis is a gatekeeping process,

and it slams its heavy bars in the face of anyone who is too poor, too busy, too Black, too feminine, too queer, an...

others. The Autistics who lack access to fair diagnoses need solidarity and justice the most desperately out of all of us...

The parents I know who have had a positive experience with assessment entered the diagnostic process recognizing they would need to fight many battles to have their child’s agency and humanity respected. This is true of the adults who have successfully pursued formal diagnosis for themselves as well. Unfortunately, Autistic people are frequently put in the position of having to educate our own health care providers. Autistic children in particular need strong advocates in their corner, fighting to make sure their boundaries are respected and that any treatment they are given is actually in their best interest. If you wish to get diagnosed, or wish for your child to be, you should go into the process with accurate expectations, armed with as much information as possible, and ready to fight or switch providers multiple times if needed. If you don’t wish to brave the long, arduous, and often expensive process of being assessed, you do not have to. Medical documentation does not make your experience any more real. Self-realized Autistics are not lesser members of the community. In most Autistic self-advocacy spaces I frequent, I have no idea who is diagnosed and who is not, because it truly does not matter.

In a similar vein, I almost always will use “Autistic” and not “person with Autism.” Many non-disabled parents of Autistic kids prefer what’s called “person first” language rather than “disability first” or “identity first” language.

Autistics are a diverse group, though, and we don’t all have to agree on which terms we like and dislike having used for ourselves. If you are Autistic, you get to decide what language works best for you. Some people prefer to say they are “on the spectrum,” for example, rather than strictly Autistic. Others identify as having Asperger’s, though that disorder label no longer exists, and was rooted in Hans Asperger’s eugenicist research.[79] I recognize that people who had that term forced on them in the past may feel an attachment to it, or a desire to reclaim it. The word bisexual was once a mental illness label,[80] but we don’t tell bisexual

people they can’t use it because of its offensive history.

Angel says he is low functioning, and says that he has severe Autism; though some in our community find that offensive, I stand by his right to name his own experience.

When Autistic girls engage in self-stimulatory behavior, it tends to be less physically damaging: less arm biting, more hair twirling or opening and closing a book quietly many times.[4] When Autistic girls are shy and withdrawn, people are less concerned by it than they would be if a boy exhibited the same reticence. On the flip side, when Autistic girls have meltdowns, it tends to get written off as an emotional outburst. When they do act out or behave aggressively, they’re more likely to be punished severely for not being ladylike, resulting in them learning to censor their aggression at an earlier age than most boys do.[5]

Much of the play that girls stereotypically engage in (and are encouraged to engage in) involves mimicking adult social interactions, such as playing house or pretending to run a store.[7] As a result many Autistic girls learn how to fake their way through routine conversations at a younger age than boys do.

There is no objective definition of what makes someone moody or a social chameleon, either. It’s easier to socially camouflage if you’re the kind of person society doesn’t view with much suspicion in the first place.

didactic

I played Legend of Zelda: Ocarina of Time and recognized myself for the first time in the game’s wordless, androgynous protagonist Link. He didn’t speak, and didn’t belong in the community of childlike elves he’d been raised in. His difference was what marked him as special and destined to save the world. Link was brave, strong, and softly pretty, all at the same time. He was clueless and ineffectual in most social situations, but that didn’t keep him from doing important things or from being met with gratitude and affection everywhere he went. I loved absolutely everything about Link, and modeled my own style after him for many years. I wore tunic-style dresses and kept my hair long and blond, which read as “feminine” enough to other people that they rewarded me for correctly playing the role of an attractive girl. But in actuality, it was a sneaky way to cosplay as my favorite male video game character every day without consequence. On family camping trips that were uncomfortably bug-ridden, hot, and socially overwhelming, I wandered the woods, pretending I was Link on an adventure across Hyrule. I desperately needed a model of how to be comfortable in

my own skin, and Link was there when nothing else was available.

When Harry Potter author J. K. Rowling published the piece “TERF (trans exclusionary radical feminist) Wars” on her blog in the summer of 2020, she specifically mentioned her fear that many transgender

men are actually Autistic girls who weren’t conventionally feminine, and have been influenced by transactivists on the internet into identifying out of womanhood.[21]

It can also make it difficult for an Autistic person to have their need for alone time or other social boundaries respected.

But because I know Bethy well, I realize none of that is true. While they found it easy to make surface-level friends at the bar where they use to work, they say that bonding with someone in a deeper way proved very difficult. They second-guess themselves, and are constantly running an algorithm in the back of their mind about how their actions and words will be received by others. They think a lot about how they’re perceived and rarely feel at home in any community. Their immaculate style is also an effort to have their personhood and individuality recognized by other people. They’ve always been misunderstood, and every day is a fight to communicate who they really are. Bethy is masking, and putting extensive energy into doing so—just like inhibited, quiet me.

I have known Autistics who are DJs, salespeople, team managers, nonprofit fund-raisers, and aerialists. The more outgoing and sensory seeking among us love anime conventions, house parties, political campaigning, and competitive sports. It’s often very difficult, though, for these kinds of Autistic people to get their disability taken seriously, because they can be so outspoken and charming.

When they do have trouble socializing or they fall behind at work, their loved ones accuse them of “faking” that they’re having a hard time, because they found it effortless to go out and party at a burlesque show the evening before. It’s an all-too-common experience for disabled people, being told that your skills in one area are proof that you’re “not trying hard enough” in another.

Very few people would guess these outspoken, high-energy folks are Autistic, particularly...

childhoods. If anything about them seemed unusual, ADHD was probably what people guessed. Incidentally, Autism and ADHD co-occur at very high rates, and are diagnostically quite difficult to untangle.[69] Psychologists often call them “sister conditions” because both of them impact things like distractibility, sensory seeking, and being deeply pained by social rejection. This brings me to...

For all these reasons, it’s not always possible (or helpful) to try to untangle which of a person’s traits are Autistic and which are caused by the trauma of being neurodiverse in a neurotypical world.

Therapy that is focused on battling “irrational beliefs,” such as cognitive behavioral therapy (CBT), doesn’t work as well on Autistic people as it does on neurotypicals.[72] One

reason for that is many of the fears and inhibitions of Autistic people are often entirely reasonable, and rooted in a lifetime of painful experiences. We tend to be pretty rational people, and many of us are already inclined to analyze our thoughts and feelings very closely (sometimes excessively so).

Autistic burnout presents very much like a major depressive episode. All too often, these negative mental health consequences of masking are what a therapist recognizes, rather than the untreated disability that’s caused it.

Some undiagnosed Autistic people (particularly women) identify as “highly sensitive persons.”[73] Highly sensitive persons are generally described as intuitive, emotionally astute, and easily overwhelmed.

however, Autism is often stereotyped to be the “order” to ADHD’s “chaos.”

Within the Autistic self-advocacy community, people with ADHD are usually treated as honorary members by default.

And the more we learn about the two neurotypes, the less they seem like distinct categories. They are, in every sense, sibling disabilities, two highly similar groups who belong in community with one another.[86]

the subreddit r/AutismTranslated,

#ActuallyAutistic

#AdultAutistic

weighted blankets or fidget toys sold by sites like Stimtastic might help soothe your anxiety. Or the social skills toolkits offered on blogs like RealSocialSkills.org may help you develop greater confidence in interacting with people, disabled and neurotypical alike.

researchers found was that parents did not accurately perceive the level of their kids’ suffering. Instead, parents based their ratings of Autism “severity” on how much their kids’ behavior bothered them and required a lot of their time and attention. Many children described by parents as “high functioning” were quietly coping with debilitating sensory pain, or were falling behind academically or socially in significant ways. This carries over to how Autistic adults are perceived, and the expectations that neurotypical institutions place on us to appear “normal.”

My body craved the pressure of sitting in a curled up, “gargoyle” posture (many Autistic people enjoy sitting this way),

Propping Up the Mask: Problematic Coping Strategies and Why Masked Autistics Use Them Problem Drinking or Substance Use • Dulls sensory sensitivities

• Provides “liquid courage” for intimidating social situations • Relaxes inhibitions and filters • Provides energy to get through an overly demanding world • Stimulates the senses • Entertains an anxious or preoccupied mind • Silences the inner critic Eating-Disordered Behavior • Grounds life in daily goals and rituals • Provides physical stimulation via hunger, exercise, purging, etc. • Distracts from social struggles by focusing on the body • Defines “goodness” and “worthiness” in terms of behavior or appearance • Gives the Autistic person a sense of self-control or discipline • Explains away feelings of gender dysphoria or physical dissociation

Detachment and Dissociation • Prevents rejection by disengaging first • Blunts painful emotions such as grief, sorrow, and regret • Allows the Autistic person to focus only on what they’re naturally “good” at • Removes the pressure to learn challenging emotional or social skills • Silences needs and emotions others find bothersome • Preserves limited energy Adherence to Rigid Rules and Belief Systems • Makes a confusing reality feel more understandable and concrete • Translates vague social norms into specific expectations • Creates an in-group to which the Autistic person can belong