A Mask For The World
There’s a term I’ve used a few times in my columns, “The Mask.” It’s something central to the autistic identity, something understood in the LGBTQ movement, commonly known as ‘The Closet,’ and a part of black culture in America, often described as ‘Acting White,’ but not discussed enough in the world of autism. People need to understand autism as an Identity, inseparable from someone’s personhood, and understanding the mask is one of several keys to understanding autistic people, the autistic struggle, and the self advocacy movement. In short, the mask is what it means to be autistic. What is “The Autistic Mask,” how does it form, and why is it wrong?
On Archer street, off the Orange line, there is an artist’s loft that hosts events regularly. About a year ago, I went there to a showing of the cult classic, Alejandro Jodorowsky’s “The Holy Mountain.” Before the show starts, I’m sitting around with other people, drinking crap beer and chatting about nothing. I’m sitting at a cheap table covered in sharpie drawings with two people I barely know. The one I know best, a friend of a friend, a painter named Zeke, says to the girl I’ve just met,“I can’t stand autistic kids. I don’t get why we give them a pass for being jerks. I get it with the low-functioning ones, you know, their lives are hard. But the high-functioning ones can be so mean, and they act weird, and sometimes they smell.”
I say nothing.
The girl nods her head, “Yeah, I know what you mean, like you can’t just get away with stuff and say ‘it’s okay because I have Asperger’s’.”
I should note that Zeke is a friend of mine now, we’ve hung out, and he’s actually very sweet. I’ve forgiven him for saying these things about me, in front of me, without knowing he was talking about me. He’s right that autistic people can be rude sometimes without knowing it, and sometimes we know better but still act inappropriately. A diagnosis shouldn’t be used as an excuse for bad behavior. But often, these ‘jerks’ are simply making mistakes, and don’t know any better. Part of autism acceptance should be making it more okay to politely correct people for social faux pas, because that’s how people learn.
All of my childhood I felt excluded, not because I was mean and I didn’t care, but because I had a history of being weird. By the time I hit junior year of high school, I had gotten pretty good at acting like everyone else. I didn’t feel normal, but I knew when to smile and nod, when someone else needed eye contact as confirmation, when to be expressive. I know I had made a turning point, because one of the country bros in my gym class turned to me in the locker room, both of us naked, and said, in a southern drawl that had magically appeared around middle school, “Y’know Quinn, you used to be pretty weird, but these days, yer not that bad, yer alright.”
When Zeke, now a friend, said he couldn’t stand autistic people for being weird, he was discriminating, plain and simple, and when the girl nodded her head, she was telling him it was okay to dislike them for their difference. These moments are why I decided to try to keep my autism a secret from all but my closest friends when I left my little hometown. I didn’t want my childhood weirdness to follow me the rest of my life.
I’m at a dinner party. A lot of friends are there, a few of them I’ve told I’m autistic at some point. I don’t know about half of them. I’m with a girl I had been seeing for a few weeks, Sarah. This is her first time meeting my friends.
A couple days before over a game of truth or dare, I finally told her I’m autistic. It was hard. I could feel myself resisting the whole time. I made sure to make eye contact when I told her, I could immediately see her perception of me change in her eyes, and I looked back to the floor. “I’m sorry you feel stigmatized,” she said, and she put her hand on my knee. I felt she didn’t get what I meant by “stigmatized” or the weight behind the three words “I am autistic,” but I said nothing. I felt like she was sorry for more than the stigma.
At the party a charming tall blonde guy from my college puts on some fuzzy earmuffs that were lying around, and Sarah compliments them.
“Thanks, they help with my Asperger’s,” he says, the joking tone is thick. When I was younger I trained my ear to hear it, so I knew when people were making fun of me. He sticks out his tongue a bit and flaps his hands and some chuckles ripple through the room. My date and I make eye contact. We don’t laugh. We don’t say anything either.
That blonde boy at the party never said anything explicitly harmful about autism. But he made a joke of it. By putting on the earmuffs, and making that comment, he made my struggles into a joke. It wasn’t a clever observational joke, like we might see on a television show. When people laugh at those shows, it comes from a mutual understanding, and it normalizes issues. Those laughs mean “I understand, this is part of life.” When he did it, he made Asperger’s into something to be looked down upon. ‘Look at goofy me with my goofy disorder and my goofy lack of understanding on the basic aspects of human interaction.’ He made himself into a parody, and in doing so he made me into a jester. I’ve thought about this moment plenty, tried to normalize it, tried to make it feel okay, and there are two clear points that prove his actions are an example of autistic discrimination.
1: If the joke had been about being gay, people would have been offended.
2: If I had spoken up about my diagnosis, people would have felt bad for laughing.
Afterward, I wished I had said something. It burned a hole in me long after.
About a week after, Sarah introduces me to her best friend. He’s skinny with a sharp jawline and the girl he’s dating looks a lot like her. She thinks he and I look weirdly similar too. I don’t think my jaw is that sharp. We get dinner together and her friend and his date talk about all the cute things they do together, and I eat silently and try not to feel bad for not being as cute a couple. We smile and we laugh about the bad music we liked when we were younger. On the way back, her friend and I want to go out to some bars, but Sarah lost her ID, and his date forgot hers, so we buy some Straw-ber-ritas and play a drinking version of Settlers of Catan at her place. I’m horrible at it. I overlook the intricacies and realize them a little too late to make a correction. Sarah and her best friend start talking about his band mates, and start railing on this one guy they are both annoyed with.
“What’s up with him?” I say.
“I don’t know, I’m sure you know the type, he’s just weird… Like, we say stuff and he just doesn’t get it,” He looks at my date, “You’re gonna hate me for saying this,” he says with a laugh, “but he’s just, he’s kinda autistic.”
She glares at him, I continue to live in silence. When he leaves the room, she apologizes for him. Later that night, he drunkenly calls his girlfriend Sarah. Then, after they leave, Sarah breaks up with me. As I cry in her lap, I ask her why, I tell her I want to learn, to not make the same mistakes. She tells me I’m better off not knowing.
It’s not that he thought that this guy was autistic. It’s not that he called him weird, though that word carries it’s own flaws. It’s that as they sat around the board game, drinks in hand, they laughed about him. Neither of them accepted him for his flaws, they used my label to make it okay for them to not like him. By extension, does that mean they don’t like me?
In dark corners of the internet, people replace the term “retarded” with “autistic” and I still can’t speak up, I’ll either be mocked for standing proudly under my label, or for defending another person’s cause, some Social Justice Warrior (or, for short, SJW). But you can’t win on the internet.
Not everyone gets to build a mask, but I did. I decided I wanted a somewhat normal life, I figured out how to look normal, and it helps me, but I’m still autistic. I still get terribly lonely, I still struggle to read people, I still make things weird sometimes. I’m still faking it. The main difference is that since I’m more accepted, since people don’t know my label, they feel they can speak freely about it around me. This sort of stuff started happening sophomore year of college, and with the newfound acceptance and the freedom to wander the social landscape of my school, I couldn’t say anything. Still today, I often feel that I can’t, even though I came out to my peers. When neurotypical people judge autistic people, they do it silently in front of them, and then loudly when alone. Today, when I try to let down my guard, I can’t. I still do neurotypical things to make sure people like me more. Sometimes, I’m not sure what actions are my authentic self, and what are just me, hiding.
Earlier this year I was hanging out with my pal Max. Lately, I’d been encountering a lot of this sort of discrimination I described earlier. It drives me mad. I tell Max I want to come out as autistic to everyone, to show them how wrong they are about people like me, but I’m afraid. I know there is no going back. I can’t shake the feeling Sarah broke up with me because she doesn’t want to bear the weight of my disorder. I’m mad but I can’t blame her. Max is great, he lets me rant about it while we walk around the neighborhood, running errands. I tell him all these stories, and more. I tell him what it was like in high school, having everyone know. About having my parents come by the classroom when I was in grade school to explain to my class why I am different. If I come out, and somehow I become a successful artist, or writer, then maybe I can make a difference. In the late 20th century, gay artists came out and made art about their identity, and because of this, artists in my generation can make art and be gay, but not be gay artists. If I’m successful, I can be the autistic artist that paves the way for artists that are also autistic. But I don’t want to be the autistic artist. I just want to be me.
Max is one of those lovable goofs. Lots of people want to hang out with him. Because of this, he has an open door policy. He leaves his apartment unlocked, and people come by whenever. Once, because of this, his camera was stolen, and he was devastated, but he still does it.
When we get back, Zeke is there waiting for us with an unknown girl.
“This is my sister. She’s visiting!” Zeke says.
We greet her warmly, Max and I sit down and start chowing down on the subs we got from Potbelly’s.
“So what are you guys talking about?” Zeke asks.
“Autistic rights!” Max tells him, his mouth full of sandwich.
His sister perks up, “I work with autistic children!” she says.
It feels serendipitous, I’m suddenly excited. On this day that I am particularly bothered, I found one person who might get it. We start to talk about it, and things become clear very quickly. She hasn’t heard of identity first language. She loves Autism Speaks. I correct her at one point, and tell her a lot of autistic kids are very smart, just misunderstood.
“Oh, yes, they are! This one kid I work with, he’s so smart, he knows if he is a good boy at the end of the day he gets his treat, a blow pop!”
My heart sinks. I pull out my phone, and under the table, I text Max, “She’s talking about them like they are dogs.”
Max texts back “That’s what you are here for, bro.”
That night, I still said nothing. I regret this one the most. A few weeks later, I came out as autistic on Facebook, and began to speak openly about it on campus. I still act neurotypical, but I try not to hate myself for the mistakes I make socially. I don’t know how to not fake it anymore.
We use all sorts of language to talk about this discrimination, but for some reason, with autism we always put the problem on ourselves. In the documentary Autism in Love, Lindsey Nebeker admits “The first impressions I received when I was learning about autism were quite negative, and as a result, I felt incredibly ashamed of being autistic.” And I can’t count the amount of times I’ve heard and said that “Autism isn’t a good or bad thing, it’s just a difference.” Which is to say, the challenge we are trying to overcome is not just autism, it’s that autism is a bad thing to be. This stigma, these negative beliefs around autism, make us feel lesser, and in our language we blame ourselves for that feeling, when in reality we should be looking at the people perpetuating that idea. By discussing autism as an Identity, we’re able to challenge these notions and move forward with autistic rights, and call these issues what they are: discrimination.
It doesn’t just take place in the workplace. It doesn’t just take place in medical papers. It doesn’t just take place in the media. It’s an everyday occurrence that rears its ugly face in the day to day life of one out of every 68 Americans. It’s why the unemployment rate for autistic people is so high. It’s why the depression rates among people on the spectrum are so high. It’s why the media portrayals and autistic characters often seem unfair, and it’s why so many autistic people feel ashamed of their diagnosis. Ashamed enough to hide it.
It doesn’t matter if a kid is high or low functioning, they are a person, a conscious person who simply operates on different rules than you. It’s not their fault you don’t get it. High-functioning people are sometimes lucky enough to learn how to hide it. That’s the mask. The fact that we have to hide, that we ever felt we wouldn’t be accepted for who we are, is a tragedy. Sometimes more than their disorder, this sort of treatment makes it hard for high-functioning people to lead normal lives, This sort of treatment makes it harder for autistic people to learn and grow. This sort of treatment is why I feel the need to hide, and why people feel okay saying such hurtful things in front of me. This mask I made in high school, which I can’t seem to take off, is made of self doubt and self loathing, issues I didn’t always have, but I’m working on. Sometimes, it’s our job to learn how the world works. Other times, it’s your job to learn how we work.
Image: “She Wears A Mask For The World” by Stefanie Sacks
Actual names were not used in this essay.