Coming Out With Autism
Ms. Hoang is a romance novelist whose works include “The Kiss Quotient” and “The Bride Test.”
“What is this word?” my mom asked me unexpectedly one day, motioning me toward her bed, where she was reading an article on her iPad. I didn’t think much of it at first, but that day, it just so happened that the particular article she was reading was about me, and the word she wasn’t familiar with was “autism.”
About a year earlier, at 34, I’d learned I had “high functioning” autism spectrum disorder, also known as Asperger’s syndrome. And I hadn’t told her. I hadn’t really known how to tell her. More than that, I’d feared her reaction, so I’d simply avoided the topic around her altogether.
Now, I was forced to say it out loud for her. “Autism.”
“What is it?” she asked.
“You know how Dad is crazy?” I know “crazy” is a poor word choice, but for better or worse, this was how my Vietnamese immigrant family described my dad’s baffling-to-them behavior. While I was growing up, he was unpredictable, often frightening, prone to dramatic public outbursts, and an alcoholic. Other times, however, he was brilliant, fun, charismatic and loving. He plays a prominent role in my worst childhood memories, and the very best ones as well. Years after my parents separated, he learned he had Asperger’s syndrome. “I’m just like him. But I hide it. I’m autistic.”
I tried to explain masking, the process whereby autistic people (usually women) hide or mask their autistic traits to better fit in with society. I’m very good at masking. I learned to do this when I was little because I could see how people reacted to my dad, but underneath an easygoing, smiley facade, I’ve always struggled with issues like difficulty socializing, a need for routine, interests so consuming that they negatively impact my life, repetitive habits that I can’t stop, and mental breakdowns.
After coming out with autism to my mom, I was terrified she’d begin walking on eggshells around me or be ashamed, but she continued to love and treat me the same as before, just like all my siblings did. They insisted that it didn’t matter if I was autistic, that I was still the same person to them. I was incredibly moved and grateful. That seemed like true acceptance to me.
However, as I attempted to unlearn the harmful masking behavior that I’d picked up and to speak up for myself, my family started to tell me things like: “This isn’t you.” “I’m so disappointed in you.” “Stop acting like Dad.”
They wanted the old easygoing me who listened without question and always got along. They wanted me to put the mask back on, because that was more comfortable for them.
In other words, they didn’t care if I was autistic as long as I didn’t act autistic. But masking exacts a toll. Not only is it exhausting, but it can lead to a state called autistic burnout, the kind of serious exhaustion and depression that I’ve been experiencing for the past year. For months, I couldn’t even focus enough to read anything longer than headlines. Only recently have I regained the ability to write and am now working on my third novel. I went on different anti-anxiety and depression medications, and while they probably saved my life, they couldn’t heal me. Nothing can do that but time.
“High functioning autism” isn’t an empty label just because it includes the words “high functioning.” It means I might have the ability to function under “neurotypical” demands — but only for a while. It means that not only do I need to rest frequently, but I also limit how I engage with people and I am mindful of where I am to reduce stress and overstimulation. I didn’t realize it at the time, but when I came out to my family, in addition to their acceptance, I was asking for their understanding of those limitations.
We’re not there yet.
When You’re Different in Two Ways
Mr. Haddad is a playwright and actor. This excerpt was adapted and edited from his solo play, “Hi, Are You Single?”
Are you horny? I’m horny all the time. All the time. Some people find that shocking. Why do you think that is? Could it be that society desexualizes people with disabilities? That’s right, I’m disabled. And I have a higher sex drive than you.
One night I was particularly horny at my parents’ house. It was summer and it was hot and Dillon was texting me. We had met on a gay website called Adam4Adam. Dillon really wanted to hook up. I mean, he was begging. Begging. And I said: “Sure, I’d love to. But I can’t, you see, because my parents are asleep in the next room.”
“So what? We don’t have to do it inside,” he said. “I got a big truck, dude. We can do it in my truck.”
Fascinating. Let me go into my parents’ room and say: “Sorry to wake you, Mom and Dad, but can you please set up my walker outside so a stranger can get me off in the driveway? Thanks! Love you too!”
But. He was. So. Hot. Tall and strong, at least according to his profile and the Facebook stalking I had done. So when my parents left town the next week, I invited him over.
“What’s your address?” he texted back.
And I said: “First, let me confirm one thing. It’s OK that I have cerebral palsy, right?” As if I had to ask his permission.
“What?” he replied.
“Well, I have cerebral palsy,” I said. “That’s why there’s a walker in my pic. You never asked about it, so I assume you don’t care.”
“I thought that was from a play you were in,” he said.
That’s fair. I am an actor and playwright. You’re reading an excerpt from my play right now.
“Good guess. But it’s mine,” I wrote back. “The C.P. just limits the mobility in my legs and weakens my arms a little. But everything else is fine.”
And he said, “Sorry, man, I kant b kool w dat.”
Well. That would have absolutely devastated me, if only he could spell.
So we weren’t talking boyfriend material here. But it did sting.
It wasn’t until I started trying to meet men online that I suddenly had to confront my cerebral palsy every time I had a conversation.
One time, I told a man he wasn’t my type, and he said, “With all your problems, you’d be lucky to take whatever you can get.”
I knew he was wrong, but I didn’t know what to say. This was all very new for me. Honestly, I can only really remember a few times growing up when I had to face any sort of discrimination.
In third grade, a girl named Samantha called me a cripple. That bitch.
On the first day of high school, the special ed teacher assumed I was going to be in all of her classes, even though I was scheduled for all honors.
And I suppose there were some friends who avoided socializing with me on weekends because they didn’t want to deal with the responsibility, or the burden, of helping me get around.
But it never even occurred to me that my disability might make being gay more complicated. Which is why I was really confused the day after I came out, when my mother hugged me, crying, and she said: “I’m scared. Now you’re different in two ways.”
In Their Stories, I Found Mine
Ms. Chambrot is a senior staff editor in the Food department of The New York Times.
Depending on the accounts you follow, Instagram may not feel like the most body-positive place. But it was where I came to love my body — and its differences.
I wasn’t born disabled. That came 19 years later, after a traffic accident while I was on my bike. When I came to, I was in a hospital and my left leg had been amputated above the knee.
Truly overnight, I went from being Krysten to “poor Krysten,” which, even when it wasn’t explicitly stated, often felt implied. But I was the same person, if smaller and sadder. I still wanted to skip school and follow the musician Sufjan Stevens on tour and I was still a mouthy girl from the South Florida suburbs who loved her grandmother and harbored the most debilitating crushes.
My friends were also 19, young and seemingly invincible, and, however nerdy they were, they still got drunk and went to parties. I did, too, if one of them folded up my wheelchair and threw it in the trunk of their car. And I navigated my new reality with some self-deprecation, describing myself with words like one-legged, stumpy and wobbly to circle around the truth: I was disabled.
Part of the reason I hadn’t accepted my disability was that I didn’t have many people to talk to about what I was experiencing — what it was like to see the world from a wheelchair, and later, wear a prosthesis. There were support groups and the like, but I felt awkward going alone. One of the few times I went to a community event, an ice skating clinic, I realized at the rink that I had misread the flier: The event was for children. In the group photo, I was the tallest person by a foot.
And so I processed my emotions outside of groups, and tried to appreciate my body for what it was: strong and resilient, scarred but powerful. When I took up running, it traveled great distances, including countless park loops and across a marathon finish line. But I didn’t think of it as beautiful until I came across the Instagram accounts of women like the models Mama Cax (who died in 2019), Jess Quinn and Kiara Marshall, among so many others. They made having a prosthetic seem glamorous, even though day-to-day disability is very much not. Here were my women, joyfully showing off their stumps and creating spaces to normalize their differences.
They put words to the ableism I had experienced but struggled to describe. Their hardships resonated: tales of ill-fitting prostheses, or walking pain, or well-meaning comments that carried a sting (“I don’t think of you as disabled!”). I took solace in seeing videos of women putting on their legs, an experience I rarely talk about. When a dear friend asked me how I practice yoga, I sent a post of Mama Cax in midpose. “It looks like this!”
These women, and many others, formed the support group I longed for, one that reiterated what I knew to be true, but didn’t see reflected out in the greater world: that disability can be challenging, but it can also be sexy and stylish and fun and smart. Like me.
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