AMY LEE LILLARD
The Masked Woman
A mask is a noun. A physical object, inert, yet one that strains to hold symbols and anger and fear and humanity in its stitches. A piece of fabric, worn to protect the face from illness. Unless you’re in Iowa, where I live now, where I lived in the pandemic. At Costco, in March 2020. A man standing in line in front of me, jubilation and rage vibrating off his frame. His mask in his hands and not on his face. His eyes, meeting mine. Daring us, any of us, all of us in the line and behind the register partition, to say something.
A mask is a noun. But it is also a verb. Action. A singular move made, or an ongoing state. It’s a nebulous thing, how a physical object, one which already bears the weight of symbol and meaning, now becomes an action, drawing infinitely more judgment.
To mask, for that man in Costco in the early days of the pandemic, for all the men who protested “I can’t breathe” without any hint of irony, for the men who threatened to kidnap a governor over masks, for the men who scaled the walls of the Capitol to support their unmasked despot, is to lie. It’s to conceal things, to hide truth. It’s inhuman, unamerican. It’s socialist and fascist and gay, all things not to be borne.
There’s another element to masking. Both noun and verb. For all the controversy over masks and masking, all the inchoate and inconsistent rules across genders, all the fantasy around masks and justice/violence/drag, all those masks can be removed. They are fabric, or polymer, or paint. External to the human body.
What happens when your mask can’t be removed? When you don’t even know you’re wearing a mask?
A + Mask
A moment. A long weekend over the Thanksgiving holiday in 2020. On my couch, alone, blissful in that aloneness, chafing at the role of girlfriend to a man that wants me to be around always, wants me to act as stepmom to his kids, wants me to be happy when he calls unexpectedly, be eager to leave my house and see him, be content to sit next to him and lie next to him and fuck him and not watch the clock for the time I can clock out. For reasons I can’t explain, reasons I’ve always known and never been able to explain, I can never relax around partners, around friends, around anyone. The only safe and truly comfortable space is alone. And I know it shouldn’t be, and that makes me ashamed.
Alone. On the couch. Reading Bust Magazine, as I’ve done since college in the late 1990s. Always thrilled and piqued by their unique brand of feminism and sex-positivity and stories you don’t read anywhere else. Like here, this article, this story about a woman who was thirty-something and discovered she was autistic. And how about that, women can be autistic? Older women can be autistic? How interesting. How crazy. How relatable. How odd, that the list of aspects she describes, they echo in my head and my chest, reverberate and beat a rhythm that sounds like another heartbeat. How strange, that the ways I’ve always considered myself weird, different, shameful, they’re listed here, they’re named, a name that starts with the same letter of the name I was given at birth, a name that might have been there, inside, on my tongue, waiting to be spoken, for forty-three years.
All that to say: I read this article about a woman who discovers she’s autistic later in life, and I, in my midlife, recognize myself.
A mask is fabric worn to conceal an identity. Batman. Daredevil. The Watchmen. Hooded vigilantes, men, wearing masks to hide their billionaire trust funds, or their super abilities, or their dirty deeds done dirt cheap. The mask is for their protection, as they claim to protect others.
Yet, to mask, for male movie vigilantes, is acceptable. It’s necessary, a first step in becoming the person that city or borough or nation needs, someone braver, stronger, harder, crueler. With this necessity, though, comes existential crisis. Batman is always worried about who’s the man and who’s the mask. Because they are different. Because a mask is a lie.
A + Mask
That first day, I pull out my phone with a numbness that hurts, and I pull up an internet diagnostic quiz. I answer questions about social behavior, relationship behavior, sensory sensitivity, the ways I think and feel and act. And with those answers, the internet adds and subtracts and multiplies and divides, and my result is “severe autism.”
I take another quiz. Another. Another. Another. Another. Each time, wanting the answer to be both things—that I’m wrong, and that I’m right. Each time, getting an answer that says severe, strong likelihood, get help.
I get up, walk upstairs to the bathroom, walk downstairs to the kitchen and eat something without tasting it, open Instagram, close Instagram, play with my cats, sit at the dining room table and stare into space.
Then I’m on my computer, and I’m reading everything about autism, and particularly autism in girls and women, and especially late-diagnosed autism in women. Within hours, I know. I know this is it. This is the word for who I am, who I’ve been, who I never knew I was but also knew intimately, deeply, at my core. The word for who I really am—and that means the person I think I am, the person I show to the world, the person I have created, is a mask.
A Quick Mask Primer
Here’s what I learn in that fugue state of relentless discovery. Autism is:
- A developmental disability, something passed down through the random stone-throwing lottery of genetics.
- A condition affecting how people think, feel, act, communicate, perceive, and even move.
- A spectrum, meaning behaviors will manifest differently among individuals, and across cultures and genders.
- An example of deep medical bias; all the diagnostic criteria was developed using boys, meaning (white) boys are the majority of diagnoses.
- A thing many people and parents want to cure, because the behaviors don’t fit nicely into a capitalist, production-driven society, and because our society doesn’t like difference.
- A condition that is certainly, fully, maddeningly different than what you think it is.
As I read, that day and for many days after, I understand some key things.
I was born in 1977; in the eighties and nineties, autism was not something known widely or discussed beyond that guy in Rainman. And in that time, and since, as autism has become a lightning rod topic tied to vaccines and cures, the assumption is autism is a young white boy, not a grown-ass woman.
Which means, we grown-ass women with autism become hiders. We become hidden. We were taught to be girls, which means to be pleasing and self-effacing and normal, and then we were taught to be women, which means all those things to exponential values, and we were and are taught that if you feel bad, physically or mentally, you hide it, because no one will believe you anyway, and we were and are taught that if we’re teased, or bullied, or raped, we deserved it due to suspect behavior, and we needed to work harder to be who the world wants.
The things we associate with autism—tantrums and outbursts and monotones and behaviors that are otherwise abrasive and unpleasant and domineering—are the behaviors of a gender that’s prized first, that’s allowed to act out, that’s forgiven with boys will be boys. Those behaviors, that kind of autism, they’re beat out of us girls at a very early age. So our autism looks completely different. Our autism is covered with a mask.
A mask is a beauty tool, a cosmetic cream or paste a woman slathers on her face, with the goal of a before/after reveal. Me, swiping a black clay across my cheeks and nose, or arranging a thin wet paper to match my eyeholes and mouth hole, or back in the day, applying Biore strips across my nose and chin. Peeling each item off, slowly, feeling soft hairs and bits of skin go with it. Searching for that more beautiful face, the one that will make me happy, or pleasing to others, and really, aren’t they supposed to be the same?
To mask, for women, is a necessity. Beauty is everything. A pleasing face is all things. We must mask to remove all the shit from our face, and then we must put a whole bunch more shit on our face, in order to be acknowledged. In order for men to find us valuable. But at the same time, men will accuse us of being liars, bait-and-switchers, when they find out how much shit is on our face.
A + Mask
I read and mark this quote:
“Women with autism are a lot more ‘autistic’ than they look…the majority of these women are getting through each day with an often sophisticated set of compensatory behaviors, personas and clever strategies for avoiding certain situations without anyone knowing. Their ability to do this is testament to an extraordinary resilience and sometimes stubborn determination not to ‘fail’ or be ‘outed’ as a ‘weirdo.’ Unfortunately, these efforts can come at a price: exhaustion, breakdown and other mental health issues are commonly mentioned by these women… Life with autism can break a person.” Sarah Hendrickx, Women and Girls With Autism Spectrum Disorder
We girls and women and non-men bend ourselves backwards and sideways to hide our oddness, our unpleasantness; we study others to see what normal looks like; we work very hard, knowingly and unknowingly, to create a new self, one that we show to the world to be able to live in it.
That’s the mask, noun and verb, for autistic women. It’s survival.
After my deep dive on that first day, I did two things. I scheduled an appointment with a therapist for assessment and confirmation. Then I told two people via text. The first was a close friend, one I expected would be as shocked and intrigued as me. And I was right; our conversation was warm, and friendly, and encouraging, and empowering.
The other text was to the man I was dating. He was a man that I had an instinct about from the start, one that I understood was seeing who he wanted to see: a sexually free girlfriend who didn’t want to get married, a woman that was passably intelligent, a human presence he could tell all the mundane details of his day, a person who could share the load with his kids. He ignored the true things about me: that I didn’t want kids or stepkids, that I didn’t want to be a girlfriend, that I chafed at the patterns he was setting up for us. He talked at length, every week, about his success sticking to his budget; I got a book deal two months into dating, and he said how nice it was to have a hobby.
But I stayed with him, because everyone around me was saying he seemed so nice, so perfect for me. I stayed, even as I grew increasingly anxious around him, popping Lorezapam before our dates, psyching myself up for sex, holding my face still as he debated pros and cons of an iPad purchase or recounted his daily diet regimen.
I didn’t yet understand he was a prime example of how autism played a role in my relationships. I didn’t yet see how much I wore a mask around most people. I didn’t yet know how much I needed others’ voices to tell me how to be. I didn’t yet know that I’d hidden so well I didn’t know I was hiding.
But I did know I was feeling guilty for not spending more time with him over the long holiday, for starting to pull away from him. So I texted him this new discovery, this fascinating idea that I may have found my true identity. I did it as a bit of intimacy. Look, my subtext said. Look, I’m sharing myself with you, as you’ve asked. I’m being honest and open. I’m trusting you. Look. I’ve found the real me.
He sent a few words back. “That’s interesting.” Or maybe, “huh, that’s strange.” Or maybe, “that’s something.” The truth is lost to text deletion, a purge after I’d finally cut him loose months later. But the sentiment, and the length, are there.
It was the first time, and not the last, that I understood how well I had masked. How realistic I’d made my mask. How thoroughly it fit. How much it appealed. It was the first time, and not the last, that I’d see how some people believed my mask, and not me. How some people would not, and will not, see me.
A Mask Primer
Masks can be nouns, and verbs. They can also, as a subgroup of both, be names and labels.
When I conducted my frenzy of initial online testing, results often gave me a label, like “severe” autism. Later in my research, I would find more labels, like “high functioning.” Later still, months later, when I went public with my discovery I would hear more words people used to describe my identity and the act of sharing it: brave, bold, special, pure, surprising. Or, I heard the most resounding and resolute of silences.
All that language and its lack to say: my mask was a good mask. It was a pleasing mask. One that denied its existence as a mask. One that said this woman, this one right here, this one admitting she’s disabled; she doesn’t need anything, doesn’t demand we change anything. She has contorted herself to fit in with us, the normal and righteous members of this world. And thus, we deem her acceptable. While we will also remember this information, and change our tones, and understand her to be less than, and this will be reflected in our language that indicates she is now a pitiable, infantilized other.
“At some point in their lives, often when adult responsibilities become too much, the amount of energy required to continue pretending, or passing, simply becomes too much. Depression, burnout, fatigue, and anxiety frequently surface. Women are often unaware that such pretending and mimicking are even happening. But as they need more mental energy in more and more areas of life… it becomes clear that there has been a long-standing disconnect between their actual inclinations and the ways in which they have acted out of social obligation.” Jenara Nerenberg, Divergent Mind
And really, what else can we expect? When it’s been clear what the world demands of us women? If we were born two hundred years ago, we’d be called hysterical. If we were born three hundred years ago, we’d be called a witch. If we were outside the US and UK and Europe, in the past or today, we’d be shunted to the side without any passive aggression or corporate speak to shield it.
So. Labels are a code that say: you, you are high-functioning, hiding your severe autism so well, demonstrating how cute and quirky you are to admit it, when you know we’ll pity you for it.
You, you woman, you daughter, you relative, you friend, telling a story about being disabled to get attention, lying about your inner life. You. You don’t deserve to be acknowledged. This does not deserve discussion or recognition. You. Who do you think you are?
A + Mask
Is it any wonder, with this reception, that my new name came with grief? With rage? With a descent into a deeper depression than I’d ever known, one where suicide became a viable option?
I knew I wore a mask. But I didn’t know where its edges were. I didn’t know how to take it off. I didn’t know what I would find underneath.
Masking for undiagnosed autistic women is survival. It’s a daily, minute-by-minute act. And when I learned that I was masking so hard and so well I didn’t know how to stop, and that few people believed that truth, survival became an element of doubt.
I isolated. I withdrew. I dragged myself through the bare minimum of actions to retain a salary. I made checklists to guide me through a day, with things like “feed cats,” “take shower,” “eat.” My body felt skinless, raw and exposed. My house became a fortress, with me hidden in its keep.
And at the same time, I was promoting my first book, conducting interviews where I slipped on that mask of sanity and levity. I cracked jokes and smiled and agreed that this was so exciting, so wonderful, this thing I’d worked my whole life towards. I was pleasant and thoughtful and reciprocal. And then, when I got home, or when I closed the Zoom, I slumped down and shut down, for hours or days or weeks.
Time passed. As it does. And the worst of the weight receded. That abyss turned into a path, and I found my way out.
And lest you think this is one of those stories, saccharine and self-congratulatory, I still feel that weight, and know that I will collapse under it again. But not today.
To mask is an act, and actions incur judgment. It’s lying, or it’s corrupting, or it’s faking. It’s associated with the action women must take to be in the world, and therefore it’s suspect.
A mask is a noun. It’s fabric, or plastic, or clay. It’s only acceptable on designated holidays, or in rough-and-tumble sports, or in the never-ending quest to be prettier for men.
When I think about masks as objects, though, I return often to the idea of masks in pop culture. Men wear a mask to protect themselves while taking justice into their hands. But the women in these worlds, like Wonder Woman, wear no mask. They are expected to show themselves fully, to allow us to see our rescuer, to watch their hair blow and their tits jiggle, to see and judge as they do their work.
That shows who decides the value of masks.
Which means: masks are not the enemy. Tangible masks, or the act of masking, are not inherently bad. People who believe the masks are not bad.
Yet the impetus remains: to consider my own mask an enemy. To want to assign blame for making me mask. To want to cast that injustice at the feet of my parents, or corporate capitalists, or the patriarchy, or ableism. That may all be true.
Consider this. My mask has also enabled me to live in the world. And my mask is a work of art. It is something I worked since birth to create. It is a composite of every experience, every confusing social interaction, every painful and mystifying end to friendships, every chaotic sexual relationship, every hidden obsession and fantasy and idiosyncrasy. It is borne of intense, masterful observation and analysis of people around me. It is bred from hurt and from secret joy.
And under it is the creator, the entity that survives. That lives on. It’s me. She exists.