Autism in The Era of Social Distance
‘Shelter in place’ reminds us that all disabilities are social
Mind Games
‘Shelter in place’ reminds us that all disabilities are social
I’m living in the scariest, most unstable time of my adult life, yet I feel calmer than I have in years. While many people around me are highly destabilized by the loneliness of social distancing and fear of the coronavirus, I find I’m doing pretty well. I’m cooking and exercising and getting a lot of writing done. My sleep is okay, and I’ve found solace in sticking to my usual routine.
I’m Autistic, and the shelter-in-place order has removed almost every stressful, confusing social stimulus from my life. The world is quiet, and I no longer have a crowded, irritating commute. My job (which I am privileged to still have) is entirely remote. I live with a partner who is very accommodating of my sensory needs, so I have both the comfort of company and the peace of being alone.
None of this means I’m overjoyed about the spread of a pandemic that is primed to kill hundreds of thousands of people, of course. But there’s a strange disconnect between the abstract horror and the refreshingly calm day-to-day reality I’m inhabiting.
I was curious about how other Autistic people are coping with sheltering in place, so I interviewed several of them. I found that many neurodiverse people are struggling with how quarantine has changed their routines, robbed them of the chance to engage in activities that help regulate their emotions, or separated them from people who help them feel safe. Others are doing well personally much like I am but are unsure how to support their more distressed loved ones because of challenges with empathy or emotional conversations.
It’s not that Autistic people are handling social distancing better than our non-Autistic peers, but we are coping differently. Disability is social and contextual. A person who is disabled in one situation is not necessarily disabled in another. And the ways in which we are disabled may shift as our circumstances do.
In some ways, Autistic people are uniquely positioned to handle the isolation of quarantine well. In other ways, it is a massive disruption — yet another risk factor for our already at-risk physical and mental health. Here are some of the ways the pandemic is affecting the lives of neurodiverse people.
The world is less overwhelming now
Until a month ago, I commuted to downtown Chicago on a crowded bus three or four days a week. When I say “crowded,” I mean standing-room-only, elbows-in-your-face, ass-pressed-against-the-doors crowded. The kind of crowded where dozens of people could catch a deadly respiratory virus from a single sneeze.
I hated those commutes. They were noisy and stressful. The bright lights, the warmth of people’s bodies, the chattering sounds of people on the phone — it all drove me into a frenzy. At work, I had to endure all the noises, smells, and social discomforts of sharing an office with other human beings. At home, the streets were bustling with ambulances, cars, and yelling pedestrians.
In our new socially distant world, none of that is an issue. My apartment is quiet and clean. I can control the lights and temperature. If I need to get away from human beings, I can go into the bedroom and shut the door. I’m a much happier, calmer person because of it.
Several other Autistic people I spoke with reported feeling similarly.
“Working from home is much easier,” says Alexandria. “Working in the corner of a call center was bad for my brain some days.”
Seranine agreed. “I am mostly very well,” she says. “Now the world moves at my speed.”
My friend Dash says life in quarantine has left them with more energy. “I get overstimulated way less. I have so many more spoons,” they tell me, evoking the popular spoon metaphor of how a disability can affect energy. The idea behind it is that we’ve all got a finite supply of energy (represented by spoons), and for people with disabilities, those spoons can be depleted rapidly by a variety of everyday factors, including running errands or interacting with people. This leaves us feeling depleted much faster than other people.
Autistic people have long been advocates for work-from-home options and flextime. For many of us, having the ability to work in sensory-friendly spaces is a fundamental accessibility issue. But we’ve long been denied basic comfort because employers mistake our needs for mere preferences and our intense sensory pain for mild annoyance. Non-Autistic people rarely understand that even being near other people can make our stress levels spike.
The pandemic has changed the stakes of these discussions. Suddenly, remote work isn’t a luxury; it’s the only option we have. And avoiding social interactions is no longer standoffish — it’s life-saving.
Social distancing lessens the fear of seeming rude
Many non-Autistic people find it hard to maintain social distancing because it feels icy and rude. In her fantastic essay, “Your Politeness Is a Public Health Hazard,” Kate Morgan describes how difficult she finds it to stay far away from people in public while also following rules of etiquette. When a grocery store worker absentmindedly approached her and started laughing (and spraying spit), she was too afraid of being rude to step back:
I’d never dream of putting up an outstretched arm and saying, “That’s close enough.” Obviously, I don’t want to be rude. Even now, when the rules of daily life have been wholly rewritten by social distancing, I — like so many of us — am still strangely beholden to politeness.
I’m thankful to Morgan for sharing this experience — and for reminding fellow “polite” neurotypical people to not fall prey to the same impulses. In an era where prioritizing politeness over rationality could literally kill someone, it’s important to challenge damaging, out-of-date social norms. Of course, Autistic people have been doing that our entire lives.
Shaking hands has never been a sensible way to greet someone from a public health perspective. It never should have been acceptable to invade other people’s personal space. Yet in many regions of the pre-pandemic world, these behaviors weren’t considered rude but instead were considered warm and friendly.
The social scripts are rapidly being rewritten. And Autistic people are uniquely positioned to lead the charge. As Morgan wrote, most neurotypical people would never dream of directly telling another person to take a step away from them. In a neurotypical world, direct, honest communication is somehow insulting.
Autistic people, however, tend to avoid indirect, confusing language. We don’t like subtext. Direct, literal communication leaves less room for misunderstanding and makes it harder for an obstinate person to pretend they haven’t noticed you are uncomfortable. To me, it feels natural to blurt out, “You need to back up and keep six feet away.” It’s the right thing to do, and it makes it easier for others to get in the same habit.
There’s less social pressure to “fake it”
Yesterday, an actor I know made a Facebook post about how confusing and socially disruptive she’s finding wearing a fabric face mask to be:
Wearing my mask to the bank, I feel like I’m harnessing all my theater major training to communicate any sort of human emotion with my eyes to these bank employees.
When I first read this post, I was kind of shocked someone would expend so much energy trying to communicate their emotions to a stranger during a short interaction. Who cares whether the bank teller knows how you feel? Then it dawned on me: Neurotypical people broadcast their feelings all the time. Their faces communicate emotions readily. People seldom tell them that their expressions are inappropriate. And they can read emotions in other people’s faces easily.
Autistic people have never had those luxuries. Most of us can’t read the small, subtle messages given off by a person’s face or tone of voice. We have to draw inferences based on what people actually tell us. Neurotypical people are also terrible at reading our emotional expressions, finding our faces either too cartoonishly expressive or too flat.
Suddenly, we’re all wearing face masks and hanging out via video chat. The social instincts of non-Autistic people have been hampered by this. Left without the tools they’re used to relying on, they’re stressed out and confused, making big, expressive eyes at bank tellers because they’re missing human connection.
Many people who are Autistic, on the other hand, are relieved we don’t have to put on a social performance with our faces anymore. In public, I find I’m doing a lot of weird, yet comforting facial tics with my mouth, now that I know people can’t see it. My friend Theo is finding they no longer have to wear a fake social mask of expressiveness because their face is covered with a real one: “I’m noticing my facial expressions are more muted when I’m in public spaces,” they say. “[There’s] less pressure to keep up the appropriate ones.”
“I have more energy for my own pursuits,” says ES, “because I don’t have to spend all day [faking being neurotypical] at work.”
However, ES’s observation came with a caveat: Social distancing also means more contact with people she lives with, including her partner, which takes its own kind of social toll.
“I have a really hard time identifying or processing emotion when I have to be around people,” she says. “So I think I’ve shut down a bit since my alone time has shrunk to minutes a day.”
Another friend mentioned that he’s worried he will forget how to fake being “normal” now that quarantine gives him so few opportunities to practice social interaction.
“Just yesterday, I had an awkward conversation with a vendor that was partly predicated on my inability to ‘pass’ as easily,” he says. “It’s nice not having to pass, but losing the ability to pass isn’t quite a positive thing.”
Losing vital social practice is just one of the many ways Autistic people are suffering from breaks in our usual routines.
Changes to routines are extremely difficult
Most Autistic people like maintaining a predictable schedule or at least having time to mentally prepare in advance for overwhelming situations. But shelter-in-place orders have fundamentally shifted the shape of our daily lives. It’s no surprise, then, that the number one concern Autistic people shared with me was how deeply social distancing has been disrupting their routines. Nearly every person I spoke to mentioned it.
“It’s thrown off my routines,” says Rob. “Both my ‘it’s my day off’ routine and ‘time to go to work’ ones.”
Another person I spoke to, Rae, mentioned that breaking from her regular routine was rough, but losing the ability to plan outings and activities was far worse.
“I can’t plan future national park trips at all or comic convention trips or visits to family,” they say. “I can’t even plan to go shopping for a new pair of slippers. … I can’t meal plan until I’m at the grocery store.”
Many Autistic people mentioned that these disruptions have affected their executive functioning, which is essentially the ability to plan and execute multistep tasks. When executive functioning starts to break down, it’s much harder to get work done or even perform household chores and maintain hygiene.
“Without the structure and routine I need in order to function,” says Valentine, “my brain feels like smashed, floating Legos.”
One Autistic friend of mine, Tay, is having daily meltdowns because of how profoundly his routine has been altered. In addition to being Autistic, Tay has a traumatic brain injury and learning disabilities, and he doesn’t completely understand why social distancing is happening. Every couple of days, Tay messages me, saying he wants to go to school, see his favorite teachers, and read his favorite books at the library. He knows he can’t do these things right now because there is an illness going around, but he’s still incredibly stressed and confused because he has no idea when any of it is going to end.
For many Autistic people, having a consistent (or at least predictable) schedule is a way to make sense of an otherwise vexing, agitating social world. The fact that quarantine has no clear end date exacerbates our need to find things understandable and logical. For people like Tay who struggle to comprehend why social distancing is happening, this feeling of confused panic must be so much worse.
We’re struggling to connect
Some Autistic people have abundant, thriving online lives and are used to relying on the internet as a replacement for in-person interaction. But others find digital communication even more anxiety-provoking and vague than chatting face-to-face.
For my part, I find remote, online interactions more natural than in-person ones much of the time. I sometimes feel like I’m a digital construct more than I am a flesh-and-blood person, and I like it that way. Chatting and texting give me time to think about how I want to react. FaceTiming with someone is less intense than sharing a space with them, and it’s easier to escape once I run out of energy. I’ve forged lifelong friendships in digital spaces. It’s much easier for me to be vulnerable online.
But not everyone feels the way I do. Plenty of Autistic people crave in-person interaction, small talk, and touch.
Theo says, “I have been feeling pretty lonely lately. … It’s been awesome to spend time with people online, but it’s really not the same thing as in-person physical contact.”
“I didn’t realize how much I needed the small, low-pressure interactions I got from working at a bar,” says Aurelie. “I have almost no close friendships, and usually it doesn’t matter, but it does now.”
Aurelie also mentioned that, for them, texting people causes anxiety, as though they have no control over the interaction. People often assume that all Autistic people prefer digital communication, but that’s just not the case.
My desire for connection and my ability to forge it just don’t line up.
An Autistic Twitter user, snipejag, told me that while they’re coping well with quarantine, they are struggling to connect with loved ones who are having a harder time.
“In a weird dichotomy,” they write. “I feel like I’m doing well, but I don’t have the toolkit to be supportive to my partners who are struggling more.”
I really resonate with that too. I’m adjusting so comparatively well and enjoying the space and silence of quarantine so much that I worry it’s making me callous in the face of my friends’ suffering. I’m not sure what to say when people are terrified of dying or so lonesome and touch-starved that they’re at risk of self-harm.
I want to be present for people who are struggling, but when I get on the phone, I freeze up. I don’t know how to convert my feelings of compassion into social warmth. My desire for connection and my ability to forge it just don’t line up. This disjoint is one that haunts almost all Autistic people in one way or another, and weeks of social distancing certainly aren’t helping.
In a matter of weeks, Covid-19 has fundamentally altered how society is structured. It’s changed how we work, socialize, and occupy space; it’s shifted how many of us think about social welfare and community care. It’s given the state new levels of control over how people organize and even whether they deserve to live.
These rapid changes lay bare the social nature of disabilities. Work-from-home options were always feasible; abled people just didn’t want to provide them. Conversations about universal basic income and single-payer health care were always worth having; it just took a massive threat to the livelihoods of abled people for those discussions to start happening. Eugenicist logic was already baked into our medical system; it just took denying disabled people ventilators for that to become obvious to everyone.
As Autistic people, our ability to thrive is determined by whether society accommodates us. Our disabilities change in intensity and presentation as the world around us changes. Like all other humans, we rely on compassion and consideration, and in the absence of it, we suffer profoundly. Right now, many abled people are realizing just how dependent they are on an accommodating society. I hope that when quarantine ends, they remember this.
Autistic people have been living socially distant lives for a long time. When this global bout of social distancing ends, we want to be freed of it too.