What Hiding My Autism Costs Me
It’s painful and exhausting to ‘mask’ Autism — but I have no other choice
This Is Us
It’s painful and exhausting to ‘mask’ Autism — but I have no other choice
Recently, I’ve become obsessed with the Instagram account MyAutisticPartner, which follows the lives of an allistic (that is, non-Autistic) man and his wife Boo, an Autistic nurse. It gives me a glimpse into a world I wish I could inhabit: a life where hiding my Autism isn’t necessary, because I am wholly understood, accepted, and loved, no matter how strange I am or how much support I require.
Boo’s husband runs the account for the most part, though Boo provides input on much of the content, consents to all the posts, and is more comfortable sharing photos of herself on the account than her husband is. The husband writes lovingly about Boo’s very Autistic habits, such as collecting toys and spending hours lining them up on the floor. He talks lightheartedly about how Boo finds certain hygiene requirements, like washing her hair, to be a sensory nightmare.
The couple attends therapy together, and Boo’s husband helps her study social cues and practice holding conversations. They work together to balance Boo’s need for stimulation and noise with her husband’s desire for a quiet, calm house. By all accounts, this husband is a top-tier Autism ally, someone who has educated himself a great deal and treats his wife’s needs with respect. Even when she adopts an annoying self-stimulatory behavior, like repeating the word “wow” in an Owen Wilson voice hundreds of times a day, he appreciates Boo just as she is.
Boo’s needs are honored at her job, too. Boo has had a special interest in medicine for a long time, and the staff at her hospital recognize what an invaluable asset someone with her deep, almost obsessive knowledge base is. Boo prefers working with kids, and connects with them easily, so her bosses usually assign her shifts in the pediatric ward. When Boo goes nonverbal and temporarily loses the ability to speak, her workplace accommodates her, allowing her to use sign language with both coworkers and patients.
Seeing an out, proud Autistic person receiving the support they need is very healing.
As a person who has tried to hide my Autism all my life, seeing an out, proud, very obviously Autistic woman receive all this support makes me teary. I’ve never been out at any job. I waited for years before coming out to any loved ones or friends. I try to seem “normal” around people even if they know I’m Autistic, to put them at ease and reassure them that us neuroatypical people aren’t that “bad.” I’ve spent so many years trying to rein in my Autism that I couldn’t let it all loose even if I wanted to.
In the Autistic community, we refer to hiding our symptoms as “masking.” When I suppress my desire to sway in place so I don’t distract anyone at a work meeting, I’m masking. When I leave the house and plaster a big, placid, nonthreatening smile on my face so that no one asks if I’m angry or tired, I’m masking too. Sometimes masking involves falling silent in large groups because it’s unclear when the appropriate time to speak would be. Other times, it means skipping a social event entirely because it might make me panic and cry and hit myself in the head.
Masking is often a necessary evil
In order to succeed in the neurotypical world, most of us have no choice but to mask. If we took the filter off and dropped the smiling, professional facade, we might not be allowed to participate in public life anymore. Openly Autistic people sometimes lose friends and jobs because of a moment of awkwardness, all without ever being told what they’ve done “wrong.” They can wind up profoundly isolated, without any resources. They can even lose their legal rights and autonomy if they start seeming too profoundly disabled.
While masking is often necessary, it comes at a high price. Research shows that Autistic people who mask experience severe psychological side effects, such as depression and social anxiety. Long-term masking is exhausting, and can cause breakdowns and burnout. It wears us down on an existential level, leaving us detached from any true sense of who we are. The trauma of masking for years might be why many Autistic people experience declines in functioning as we get older.
When I was a child, I was far too bizarre, and I paid the social price for it. In order to survive, I started piecing together a more socially acceptable persona. As the years wore on, my mask shifted as the situation required it. I went from a sarcastic joker to a high-achieving go-getter; then I became a passive, forgettable face. I hid away every demand and desire, became someone who could slip under the radar and survive.
Now at 32, I have been a variety of people, and I don’t always know who the real me is. My mask has fused itself to me, leaving me inhibited and confused, uncertain of how to break loose, left wondering if being authentic is even possible anymore.
I have no choice but to don the mask. I wear it reflexively every day. Here is what that costs me.
I’m ashamed of seeming childish
Last weekend, a tweet criticizing “picky eaters” went viral. I’m sure most people saw it as totally benign, but as an Autistic person, it was an acute reminder of just how loathed neuroatypical people like me truly are:
I’m sure that when Ashley Reese wrote this, she believed she was just mocking “lazy” people who choose not to eat vegetables because they don’t care about their health. But what makes someone a picky eater? What keeps someone from succumbing to the massive social pressure to eat a more varied diet for 28 years? Often, it’s a texture or taste aversion caused by Autism or sensory processing disorder. Or it’s the compulsion to eat only familiar, “safe” foods, which is often caused by Autism or an eating disorder.
The vast majority of people who remain “picky” eaters well into adulthood have a logical, often disability-driven reason for it. But since being “picky” is associated with being childish, it is derided as unattractive and embarrassing. All kinds of disabled traits get mocked in this way: collecting toys, loving cartoons, relying on one’s parents for financial support, even having a “neckbeard” are all rejected as “childish” traits. The adults most likely to engage in these behaviors are ones with disabilities.
Our society has a lot of contempt for children, because they are not productive and they need help in order to live. Their passions aren’t “serious” and their emotions are an annoyance to adults who have supposedly more important things to do. This disrespect of children bleeds into how we talk about disabled adults, who also have high support needs and hobbies that don’t make anyone any money.
As an adult Autistic, I’ve internalized it all. I feel a simmering, low-grade shame about every habit that could look “immature” to other people. When I cry, I fear it makes me look like a bawling infant, and I hate myself for it. I love cute animals and stuffed toys, but I worry this might make other people cringe. Even being too earnest and happy seems like a threat to maintaining my professional “mask.” Having to mask my Autism has made me hate some of the purest and most tender parts of myself. It’s a constant struggle to get back in touch with my innocence.
I’m constantly self-conscious
Autistic people have a lot of habits allistic folks find annoying. We flap our hands, bounce on the balls of our feet, yell, and repeat phrases or words that feel good in our mouths. These actions, which feel very natural and pleasurable to us, draw a lot of stares. As kids, we’re often reproached for being distracting, annoying, and strange.
Growing up Autistic means learning to constantly filter yourself. The twitches and chirps that soothe us make everyone else upset. Finding comfort by sitting upside down is somehow unacceptable. When we get excited about a topic, we want to talk about it endlessly, yet most people hate our info-dumping and find it tiresome and boring. I even lost some close friends as a child because parents disliked my “weird” mannerisms.
Though masking often involves creating a fake, outgoing personality, an even larger part of it is inhibiting our natural impulses. Autistic people aren’t always good at guessing what other people want to hear or see, after all. Often, all we can tell is that what feels right to us is wrong in everyone else’s eyes. So we stop doing anything. Or saying anything. At all. We become quiet, restrained, inoffensive, void.
When I’m in public, I am painfully aware of how I am standing, what I’m doing with my hands, how I’m positioning my face. I’m terrified to cross one of society’s invisible lines, so I make myself as small as possible. I wait until the conversation hits a lull before speaking up. I fold my arms in tight. I try not to fidget, try not to even breathe too loudly.
I don’t know what normal is, but I know I sure as hell am not it, so I try to be as unlike myself as possible. Even when I want to open up to people, it’s a real struggle. Controlling my every word and movement is so instinctive that I can’t let it go.
I hate having needs
I’ve always felt an implicit pressure to hide the parts of me that are “needy.” I don’t know how to ask for attention, or tell someone that I need cheering up. It feels perverse to do something like that, nearly as invasive as masturbating in front of somebody.
Just as I hate seeming childish to other people, I hate seeming weak or overly dependent. I have erected massive walls around myself, and only let socially acceptable traits pass through. I connect with others by helping them and listening to them. I have no idea how to ask for help, or what asking for help would even look like. I’ve done things on my own as long as I can remember. I’m not sure where other people would even figure in.
Many Autistic people struggle to name their emotions. It’s taken me years of practice and therapy to develop even halfway decent emotional awareness. In the heat of the moment, I still struggle to know whether I am angry, sad, regretful, or embarrassed, and where those feelings might have come from. My partner finds it frustrating that I don’t tell him what’s bothering me until it has reached a blow-up point, but it’s difficult for me to voice concerns before that. When I do have the awareness to speak up and ask for help with something, I’m ashamed of my “neediness” for hours afterward.
When I see neurotypical people effortlessly bearing their souls and connecting over shared trauma or loss, I can’t help but mourn all the chances at bonding I’ve squandered by being so icy and withdrawn. I’m good at being candid, but only in a factual way. I don’t know how to really be emotionally present with someone else and reveal my inner experiences. I’m often far too fixated on managing the expectations and needs of those around me.
I’m easy to manipulate and abuse
Like many Autistic people, I’m pretty easy to exploit and abuse. I take people literally and believe they mean what they say. I hate making people angry or sad and usually want to downplay conflict. I’ve spent so long modifying myself for the sake of other people that I sometimes do it instinctively, and co-dependently, failing to realize until long afterward that I’ve been taken advantage of.
Research shows that Autistic people are at an increased risk of domestic abuse, because we tend to be a bit gullible, and are quick to alter ourselves to placate other people. Our disability makes us vulnerable; we’re acutely aware that we live on the fringes of social acceptance. This makes us more likely to tolerate mistreatment from allistic people. We think we have to accept whatever relationships we can get.
By the time an Autistic person is an adult, they’ve been told to stop acting “weird” hundreds of times, starting when they were very young. They’ve lost friends, romantic prospects, and maybe even jobs tons of times, often for violating nonsensical social rules that no one ever bothered to tell them about. This isn’t intentional gaslighting, but it does amount to a decades-long campaign to make us doubt our every impulse and perception. We learn our sense of reality can’t be trusted, and that authenticity will get us punished. This makes it very easy for us to fall under an abuser’s thrall.
Growing up, my dad was emotionally abusive. My instinct was always to manage his emotions for him. For years I served as his proto-therapist, absorbing his every negative feeling and thought. My mom was much more well-intentioned, but she didn’t know how to handle it when I became depressed as a teenager. I decided it was best for me to hide my pain from her, to try and be a fount of humor and entertainment.
Autism is not the problem here. The pressure to hide my Autism is.
I carried these strategies over to every other relationship I had. I was always playing the role of either the unofficial therapist or the distracting, uplifting clown. By the time I was 21, I was trapped in a physically, emotionally, and sexually abusive relationship with a man who was all too happy to exploit my people-pleasing instincts.
Though I escaped that abuse over a decade ago, I’m still inclined to manage other people’s emotions. I get too invested in situations that don’t involve me; I jump into action the second someone is upset or in need. In some activist spaces, I’ve been guilted and manipulated into taking on responsibilities I could not handle; at some jobs, I’ve doubled my workload to avoid ever being criticized. I never want to fulfill the stereotype of Autistic people being inconsiderate or unintentionally cruel, so I bend over backward trying to be giving, compassionate, and overly accommodating.
Despite how negative this essay might seem, I’m actually very happy to be Autistic. Autism has given me an analytical and creative brain. It allows me to hyper-focus on the topics and activities that inspire me. I’ve become a better person thanks to my involvement in the Autism self-advocacy community, and forged lifelong friendships with people who help me feel normal and okay. The Autism is not the problem here. The pressure to hide my Autism is.
I hope that someday I can be like Boo, openly Autistic and lovable and odd. I want to be out at work, the same way I’m out among family and friends. I want to be able to stim in public, to let my face take on strange, awkward shapes, to ask for the professional and personal accommodations I deserve. I want to be unabashedly strange, to cry without shame, to share my weaknesses readily and to realize that such vulnerability makes me easier to love, not harder.
I am very far away from attaining all that. The mask is so hard to take off. I’ve worn it forever. It’s become an integral part of who I am. But I want to learn how to let go of it. Masking has helped me survive in a world that is deeply ableist and cruel. But I don’t want to survive by hiding anymore. I want to be genuine and messy. I want to be me. I want to thrive.