Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity (Unmasking Autism Series)

by Devon Price

We hyperfixate on activities that we enjoy and can get so engrossed in them that we forget to eat or take a break to stretch our legs.

Most of us have to figure out ways to conceal our stimming and special interests. We might maintain a secret blog about our interests, for example, or find socially acceptable ways to get our energy out,

Since we can’t openly stim or engage in other repetitive behaviors, some masked Autistic people reach for flawed coping strategies to help manage stress. We’re at an elevated risk of eating disorders,32 alcoholism and drug addiction,33 and insecure attachments to others.34 We tend to maintain shallow relationships, out of fear that people would hate getting to know our “real selves.” We may withdraw from other people, leading to negative emotional and psychological outcomes. And the more isolated we are, the less practice we get socializing, leading to a feedback loop of social disempowerment and shame.

highly correlated with physical symptoms such as gastrointestinal issues,

co-occurs with other disabilities such as Attention Deficit Hyperactive Disorder (ADHD)

Many Autistic people have trauma histories and post-traumatic stress symptoms, and as I’ve already mentioned, a lifetime of masking puts us at a high risk of conditions like depression and anxiety.

What unites us, generally speaking, is a bottom-up processing style that impacts every aspect of our lives and how we move through the world, and the myriad practical and social challenges that come with being different.

If you struggle in your close relationships because of attachment trauma or an inescapable fear of rejection, you’re neurodivergent too (you might also get stuck with a particularly stigmatizing label, such as Borderline Personality Disorder).

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 over-excitability of Autistic people’s neurons and the inconsistent way that we filter stimuli

Their sensory pain and social overwhelm is near-constant, and they can’t hide how profoundly they’re suffering. Their parents have trouble managing their meltdowns and sensory overloads, seeing these responses as “behavioral issues,” or “noncompliance.”

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

“Getting smaller and asking for nothing was how I kept people from calling me too sensitive so often,” she says. “That and assuming that if I was bad at something, it’s because I was never, ever gonna be good at it. Better to not ask.”

Because so many of us mask through inhibition and withdrawal, we might not stand out as socially awkward, at least not in a way anyone can pinpoint.

We may eschew relationships, drop out of grueling academic programs, avoid working in fields that require networking and socializing, or completely disengage from activities that involve using our bodies, because we feel so detached and uncoordinated in them. 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.

Family members who have told you that you’re whiny and lazy may finally get off your case when they realize you have a developmental disorder.

Unfortunately, a diagnosis is not a guarantee you will receive any of these benefits.

And as much as I’d like to promise that being recognized formally as an Autistic will get judgmental friends and family off your back, I’ve heard too many counter-examples to claim that’s really the case. Your family members may find your disability even more threatening once it’s validated by a doctor, or they might use your diagnosis to undermine your judgment or infantilize you.

no evidence-based treatments for Autism in adults.

Some are assumed to be too “high functioning” to need accommodations, but actually suffer deeply from a lack of accessibility and support. Others are pretty clearly debilitated by disability but were misdiagnosed as Borderline or Narcissistic instead of Autistic.

Comedian Chris Rock recently came out about being on the Autism spectrum; specifically, he was diagnosed with Nonverbal Learning Disorder. In an interview with The Hollywood Reporter, he describes how clear-cut indicators (such as an inability to pick up on social cues and a tendency to take all statements hyperliterally) were ignored until his mid-fifties.

“Many people with autism can also appear obstinate or are slow to react in new situations,”

many Black code switchers described it as a state of hypervigilance, and that they needed to constantly police their actions and speech in order to minimize white discomfort or hostility.

We have to keep other people at arm’s length, because letting them see our hyperfixations, meltdowns, obsessions, and outbursts could mean losing their respect. But locking ourselves away means we can’t ever be fully loved.

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.

In their essay “Autistic People Party, Too,” the writer Jesse Meadows describes how a drinking, drugging party-girl persona helped them fit in with other people and find a modicum of sensory comfort.67 Eventually, though, that lifestyle proved unsustainable, and they had to learn to seek novelty and stimulation in healthier ways.

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.

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.

Often, a person exists somewhere on a spectrum between multiple disorders, or has a unique combination of traits from multiple conditions.

“I assume everybody is talking about me and is a hair’s breadth from blowing up and calling me a horrible person,” he says. “And is this Autism and not having a good theory of other people’s thinking? Or is it that my mother would hurl invectives at me if I so much as put the sponge on the wrong side of the sink? There is no answer.”

Clinical studies show Daan’s experiences are far from abnormal. 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.

In some cases, marginalized Autistic people get stuck with mental health diagnoses that are even more reviled and misunderstood than Autism is. It’s quite common for adult Autistic women to be incorrectly labeled with Borderline Personality Disorder, for instance.75 This is a really disastrous diagnosis. Borderline Personality Disorder is many therapists’ least favorite condition to work with.76 As a group, they’re commonly viewed as overly dramatic, needy, attention seeking, unreliable, and even abusive.

She had all the traits that tend to overlap: insecure self-esteem, fear of being abandoned that would prompt emotional meltdowns, and an unstable sense of who she was. “I used to pretend

Both Autistics and ADHDers are easily distracted by stimuli, yet also prone to hyperfixating on activities we find enjoyable, getting engrossed for hours without remembering to pee or eat. Generally speaking, Autistics tend to perceive themselves as having more control over what they hyperfocus on than ADHDers do. ADHDers are more likely to describe boredom and understimulation as painful, where as some Autistics really enjoy stillness and quiet. Both neurotypes are underdiagnosed in women and people of color, and those who aren’t diagnosed at a young age typically wind up masking for decades before figuring their identity out.83

one prominent experience among ADHDers is rejection-sensitive dysphoria, feeling intense panic and distress when receiving negative (or even neutral) social feedback from other people.

Autistics may have trouble guessing what other people are feeling or understanding unspoken social norms, but ADHDers may also be accused of being “oblivious” too, talking at length without picking up on others’ boredom, or getting so lost in a video game or favorite hobby that they miss their roommate frustratedly doing all the cleaning.

While ADHDers don’t appear to process information in as bottom-up a fashion as Autistics do, the high energy and anxiety associated with the neurotype can look incredibly similar to how Autistics react to overwhelming sensory information.

some differences between ADHDers and Autistics worth noting. First, an ADHD diagnosis is easier to receive as an adult, though it comes with the very stigmatizing assumptions that patients’ brains are “broken” and require stimulant drug treatment.85 Second, the accommodations many people with ADHD require can be incompatible with what Autistic people need. As an Autistic person without ADHD, I need a quiet, private, clean space in order to feel calm and focused. I also need silence and darkness in order to sleep. Many people with ADHD, in contrast, require stimulation, novelty, and sensory input. They may need the television blaring while studying, for example, or may be unable to sleep without music on. Clutter and mess overwhelms many Autistic people; for many ADHDers “visual noise” is easy to ignore, so much so that messes can “disappear” from their field of view. ADHDer friends often enlist my help looking for their phones and keys because they can’t scan through their piles of stuff to find it. To them it’s all just a morass of white noise, but I can instantly locate specific objects at a glance.

Writers and creatives who have ADHD tend to work in big bursts of late-night passion, and put their work together in an associative, big-picture way. I work on a consistent schedule, analyzing sources and putting them together piece by tiny piece. But I also have an impulsive and chaotic streak,

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

When neurotypical people equate “functioning” with being less disabled, they fail to recognize the immense, hidden labor that goes into appearing normal.

A person who can speak, socialize, and hold down a job may strike outside observers as very “high functioning”; in private, that same person may need help getting dressed, or may require people to remind them when to eat. Boo’s husband, for example, has created an easy-to-read chart listing all the snacks they have available at home, to help Boo process what to do when she is feeling hungry and rundown. He also helps motivate her to do things like brushing or washing her hair, activities that are both necessary and painful for her.

Generally speaking, if an Autistic person was verbal from a young age and could fake some social niceties, they were likely to either be considered “high functioning” as kids, or they weren’t identified as Autistic at all. This is a bit ironic, because learning to speak at an early age was an early indicator of Asperger’s Disorder.

For me, and for countless “high functioning” Autistics, communication and intelligence become an essential part of our masks. I never could fit in with other kids, but I could impress teachers with my grasp of big words and my sophisticated-sounding opinions. Though my language was highly developed, my social and emotional life was not. I annoyed other kids by talking too much about subjects that didn’t interest them. I clung to adults who found me “impressive” and equated being well-behaved with being mature and worthy of their respect. I also absorbed the idea, common to many “gifted” children, that a person’s intellectual potential belongs to society, not to themselves, and they owe the world greatness to justify their oddness.

Until I was in my mid twenties and realized I was Autistic, I was basically a perpetual adolescent, performing intelligence for praise but mismanaging my personal life and not connecting with anyone in a deeper way.

“I was a fantastic saleswoman when my life was at its most dysfunctional,” she tells me. “I could charm anyone if they didn’t get to know me, really know me, and see how much I was drinking and lying to prop that life up.”

The very concept of “functioning status” is predicated on the logic of capitalism and the legacy of the Protestant work ethic, which both have trained us to believe that a person’s productivity determines their worth.

For too long we have hidden what makes us unique, fearing we’re broken or unlovable.

a well-behaved, sweet kid, and a total teacher’s pet. Yet behind her smiling, agreeable façade, she was coping with constant social confusion and loneliness. In classes where instructions weren’t always clear, like science and math, she floundered. At school, she socialized with other girls, but she rarely got invited to sleepovers or outings to the mall or skating rink. She kept her head down around other people, and at home complained of frequent stomachaches and threw “tantrums” out of stress. By middle school, it was impossible for her to ignore how difficult she found regular life.

Crystal could sit reading a book for hours without interruption, but in middle school classes switched so often that by the time she adjusted to a new room and settled into paying attention, it was time to move again. Middle school was also socially overstimulating: she went from sharing a classroom with fifteen children she’d known all her life to suddenly having to learn dozens of new names, faces, and interlocking social dynamics.

If you take a long time to figure something out, they assume you’re dragging your feet out of adolescent apathy rather than executive functioning differences. If you have problems making friends, it’s because you’re a moody teen, not because neurotypical conversation rules are inscrutable to you. For Crystal, and for a lot of masked Autistic people, middle school is when a lot of struggles really come to the fore.