Autism, Representation, and Chicken Dinners
A story about living with autism:
I go to a day-hab type program that’s a town or two over from my own — I live on Long Island, so it’s a short-ish bus ride away. It’s a good place; the facilities are up to date, the staff is friendly and dedicated, and when I’m there I feel relaxed and safe from my usual sources of stress, at least for the most part. One of the bigger hitches is that I’m on the mild end of the spectrum while they tend to work with people on the moderate and severe end, the kind of people that make tons of loud, sudden noises and invade your personal space — two things I don’t do very well with. That’s not on the staff, of course; that’s not even really on the people they work with. But it’s a fact of life that I’ve accepted, one that’s going to become important later.
Here’s the story I wanted to tell: I went to the program a couple of days ago for a cooking class. I got there about 15 minutes early, so I was hanging out in the main lobby. Imagine an Apple Genius Bar with more white, less silvers and greys, less people, less desperation, and you’ll get the idea of what this place looks like: A large, white space with a reception desk, a TV tuned to News 12’s Hurricane Florence coverage, several plush lime-colored armchairs, and a developmental play cube in the corner that I want to say I’ve outgrown, but nah.
I don’t sit near the play cube this time because there are two people here that I’m quickly introduced to by the receptionist. The guy, who couldn’t be any older than 25, is auditing the night’s cooking class. He was with a woman with short honey-blonde hair and glasses; she couldn’t be any younger than 45. I assumed she was his mother, and for all I know she was, but she was acting in the capacity of a regular old comm-hab worker. A quick word on comm-hab workers, for those who don’t know; comm-hab is short for “community habitation,” and they’re there to help people whose inability to interact with the world and perform basic tasks can be classified as a disability — people with autism, for instance.
Anyway, I walk into the lobby, I’m listening to some Warren Zevon, but I quickly pop an earbud out to wave hello and introduce myself. However, I’m not really looking for a conversation; I’m looking to be polite, and whether it’s right or wrong, part of being polite to me is not leaving people on the hook when I can’t think of anything to say to them beyond “Hi, I’m Chuck, nice to meet you!” So I walk away, I go to put my earbud back in —
“Do you like to cook?”
Comm-hab Mom was asking me a question, one with an answer that was a little more complicated than she might have realized given that I live in a basement apartment with a small kitchenette that’s isn’t great for anything more complicated than burgers on a George Foreman Grill.
But I don’t tell her that, partly because I can’t get the words straight in my head fast enough, partly because I don’t know her well enough to tell her that much information about myself, and partly because she reminds me of my pre-K teacher, Miss Sharon, asking me what I wanted to be when I grew up. Instead I just say “Yeah, kinda,” with all the confidence of a young hitchhiker who’s wondering if they just climbed into the back seat of a serial killer’s car. I start once again to the nearest empty armchair —
“Wonderful!” Comm-hab Mom exclaims, completely oblivious to my obvious discomfort with her line of questioning, however silly that discomfort might have been. “What do you like to cook?”
“…Oh you know…chicken, mostly.” This is true; when I do get a chance to cook, I love baking chicken tenders coated in cornflake crumbs. Again, I don’t want to be rude; she’s asking me honest questions, I want to give her honest answers. But I kind of feel like I’m drowning here, and it’s not helped by what she says next:
“Well, I might have to come over some day and try your cooking!”
…
…okay, so a common autism stereotype is that we’re hyper-literalists who don’t get jokes or sarcasm. I don’t necessarily think that’s unrealistic, but personally, I experience this disconnect a little differently than neurotypicals might realize. See, when you’re kidding around with me, I understand that you’re kidding, but I don’t quite know how to respond in a way that keeps the flow of the conversation going while showing that I know that you’re kidding. As you might be able to tell, I’m not super good at speaking casually to begin with, so this is a special kind of hell for me. And yes, on top of that, there’s a part of my brain that’s thinking “I just met you thirty seconds ago! How am I supposed to respond to this?”
And Comm-hab Mom has the shitting nerve to follow up with that tone of voice that only Miss Sharon could have gotten away with, and even then only when I was much, much smaller than I am now: “Would that be okay? Can I come over for dinner one night?”
“…Probably not,” I say, and she laughs, and I put my earbud back in, relieved that it’s over.
But then I hear something under Zevon’s music; I couldn’t make out anything other than the condescension. I take my earbud out again: “I’m sorry?”
“I said, ‘It didn’t hurt to ask, did it?’”
What I said was, “Not really.”
What I wish I said after, what I should’ve said in some form, what I didn’t say because I didn’t want to spark an incident, damage my standing with the program, and cause a potential customer to walk out the door, was “It hurts when you talk to me like I’m 7 and not 33, you fucking hag.”
No, that last part wasn’t necessary, but I was pissed enough at that point that it could’ve easily slipped out.
Here’s something I’ve come to learn about autism, from a ground level point-of-view: as awareness grows and the criteria for diagnosis evolves, the prevalence of the so-called disorder (I’m loathe to call it that) has gone up hand-in-hand. Still, getting an official diagnosis can be tricky. It took me ten years from my first suspicions to actually receiving a letter that said “Yes, you have autism” because my mother and I literally didn’t know where to go or how to pay for it. And that initial suspicion didn’t happen until well after college. I was in Special Education throughout school, but I was classified first under “Speech and Language Impairment” and then under “Emotional Disability.” Nobody ever suspected I could be on the spectrum because, frankly, I was too smart. You or someone close to you has to know that you need a diagnosis before you can actually get a diagnosis.
This leads to some distressing biases. I’ll tell you another story — or rather, an anecdote. Sometime after my diagnosis, I started seeing a therapist who, for once, actually specialized in treating autistic people. She’s brought up a couple of times that one of the things that throws her is how I’m able to express empathy for others. Thinking about this, if I’m being honest, tends to trigger a brief bout of impostor syndrome that’s soothed away as soon as I read the letter I get from the doctor that diagnosed me (who, as it happens, works at the same clinic as my therapist does).
I want to be clear about something: My therapist is excellent. We get along great, and since I started going to her, on average, I feel like I’ve been going emotionally uphill. Unlike Comm-hab Mom, I don’t hold this against her at all for a couple of reasons:
- She speaks to me candidly, strictly from her own experiences, without ever belittling me or casting so much as the faintest question on the validity of my own diagnosis.
- Going back to the day-hab program I attend, I’ve met a lot of delightful people on the spectrum through there, and the vast majority of them don’t appear to be aware of any world beyond the room they inhabit. I would agree that empathy at least appears to be a foreign concept to them; not out of malice, not because they wouldn’t care, but because they’re not wired to.
Any questions or concerns those experiences inspire come entirely from my own insecurities, which is something I need to work on alongside what I worry is deeply internalized ableism (which may or may not come through in this post, even!) that comes from years of not wanting to be “like them” before finding out that, well, I kinda am “like them.” Frankly, I don’t think I ever even brought this up with her. But I think the first question to ask when confronting these insecurities would be where they came from. Without hesitation, I’d say that it’s because I don’t know enough people like me, in real life or in my entertainment.
And now, finally, 1500 words later, we come to the whole point of this essay. It was inspired by a recent discussion among my friends about The Predator, wherein Jacob Tremblay plays an autistic child whose ability to decode alien languages is a crucial part of the plot. The autistic friends of mine who are understandably pissed have two concerns:
- An autistic child being portrayed as a burdensome, emotionless robot.
- That autism being used as a borderline supernatural plot device.
I haven’t seen The Predator yet (owing to many things, not the least of which being the abhorrent behavior of a writer/director that I straight-up idolized, which has at least been walked back, if only publicly) and I’d rather not slam anyone, much less an 11-year-old boy, for a performance I haven’t experienced for myself. That said, there’s an interesting debate to be had on whether it’s society that defines culture or the other way around. There’s room for reasonable people to disagree. But I can’t help but wonder if the reason people like my therapist don’t personally deal with a lot of people like me, or if the reason Comm-hab Mom talks to me like I still make boom boom in my diapers, is because society at large just doesn’t know any better.
I don’t easily “present” as autistic, but I have some tells, including the aforementioned trouble with sudden loud noises, a mild speech impediment, and a terrible diet that’s brought on by not responding well to textures in certain foods. It still took me over a quarter of my life to realize that I was probably on the spectrum. How many people like me are still trying to figure this out? How many of them are looking at Sheldon Cooper from The Big Bang Theory, or the dude that memorized a thousand books in the most recent adaptation of Fahrenheit 451, or (speaking of a performance I don’t necessarily mind but still fits that mold) Shaun Murphy from The Good Doctor, and thought, “Well, that can’t be the answer?” People need to wake up to the idea that autism is a very big tent, and it’s going to be accurate representation in media that really gets the ball rolling. That’s not going to happen until more of us are telling our stories; not just the stories of our families, and not just stories about how magical autism bullshit will save the world. And whether you think society drives culture or culture drives society, it’s becoming increasingly clear that nobody’s going to just let us do it unless we force the issue.
Until then, the fucking hags of the world will keep inviting themselves to my goddamn cornflake chicken dinners and I’m not even remotely prepared to tolerate that shit.