Your Autistic Pandemic
More than once on a previous incarnation of this blog, I’ve kind of marveled at the number of pandemic experiences people were reporting that easily seemed to be analogues for what it’s like to be autistic. It began nearly two years ago when folks like Maxfield Sparrow reacted to a Manyu Jiang story on “Zoom fatigue” for BBC Worklife by noting that it was “a taste of the autistic experience”.
(I should note that this post will be a bit sloppy. It’s a little bit cobbled together from older posts and a little bit haphazard because that’s how I’m feeling at the moment. I almost left it unpublished because reading it through made me feel claustrophobic and unsatisfied. It’s entirely possible that it will get taken down.)
It’s why I can’t work a traditional full-time job. All that constant scrutinizing and analyzing and feeling out of sync…that’s what every moment of every day of my entire life feels like when I’m interacting with people in person. I had a job once digging pits with a shovel, alone. At the end of the day I had twenty times more energy than after a day at any other job I’ve had, because interacting with people is that exhausting. (And I’m an extrovert.)
If you are socially disoriented by Zoom and desperate for the pandemic to be over so you can return to comfortable, easy socializing, please lean into that feeling and remember it later. For me and for many Autistic people, there is no end to that experience. It is where we live and it is why some of us are among the most anxious people you’ll ever meet.
C. M. Condo made a similar observation in response to some Julia Sklar reporting for National Geographic about what’s happening to the brain during “Zoom fatigue”.
This article discusses how taxing social interaction is over video platforms because of challenges in interpreting unspoken information, which may be obscured or absent due to teleconferencing platform issues. Critically, it discusses the amount of concentration required and how exhausting it is, something those of us on the spectrum are all too familiar with, as this is how hard communication is for us all the time.
Other disability communities found complaints of “Zoom fatigue” similarly familiar, in ways somewhat analogous to autistics. Patrick deHahn focused on the deaf community for Quartz.
“Zoom fatigue” is also about the feeling of always having to be “on.” The endless video calls for work or leisure are exhausting. It’s similar to—but not nearly the same as—how deaf and hard of hearing individuals never stop working in processing sounds, despite the barriers, and translating what they mean throughout each day.
It wasn’t just “Zoom fatigue”. Sarah Manavis reported for The New Statesman on people having difficulty focusing or concentrating during the pandemic due to the sustained stress.
This brings us to our current situation, in which we are being faced with danger that is ongoing but not acute. It means that, rather than dealing with the immediate danger and then moving on, we are cutting off the part of our brain that helps us think beyond the primitive – for extended periods of time. And our ability to focus is significantly affected.
This, too, is akin to the ways in which autistic people often find they need to navigate the world around them: like an ongoing stressor that precludes us from “dealing with the immediate stress and then moving on”.
Tim Kreider in The Atlantic looked at people having difficulty with the idea of re-entering normative society after the adjustments of the pandemic.
“For the last year,” a friend recently wrote to me, “a lot of us have been enjoying unaccustomed courtesy and understanding from the world.” When people asked how you were doing, no one expected you to say “Fine.” Instead, they asked, “How are you holding up?” and you’d answer, “Well, you know.” […] You could admit that you’d accomplished nothing today, this week, all year. Having gotten through another day was a perfectly respectable achievement. I considered it a pass-fail year, and anything you had to do to get through it […] was an acceptable cost of psychological survival. Being “unable to deal” was a legitimate excuse for failing to answer emails, missing deadlines, or declining invitations. Everyone recognized that the situation was simply too much to be borne without occasionally going to pieces. This has, in fact, always been the case; we were just finally allowed to admit it.
This experience of not having to observe the social niceties is one that neurotypicals might want to keep in the mind the next time an autistic person has difficulty with such things or doesn’t bother with them. If you ask us how we’re doing, we very well might give you the honest answer. Offer us the same slack and understanding you offered each other during the pandemic.
It didn’t stop there. Tanya Basu wrote for MIT Technology Review about potential ways to combat “Zoom fatigue” by making things more immersive by using more enveloping technology such as virtual reality or video games.
The entire experience was bewildering. I was disoriented by all the things I felt I had to do simultaneously: talk to Martin, be sure to stay within earshot or risk losing him as he moved around, and traverse the various obstacles that popped up—waves from the beach, a radio that drowned out our conversation if we got too close to it, my “wine” glass emptying on its own. I found it hard to concentrate on the meeting. In fact, I felt overstimulated and anxious.
“Overstimulated and anxious” often is as good a description of an autistic everyday as any other, if nothing else because of our common experience of sensory processing disorder. This difficulty with simultaneity speaks to something Colin Nagy said that people grappling with life under the pandemic were experiencing: the need for “cognitive transitions”.
Scott hit the nail on the head with this. Sometimes, with a tightly-packed schedule, jumping from video call to video call, we lose out on the mental space to unpack and process information. Even the most fastidious note-takers or Zoom recorders likely need a little bit of time to move from one topic to the next, particularly for more creative or strategic topics. As was nicely articulated in this blog post by Josh Kaufman: “In order to take action, your brain has to ‘load’ the context of what you’re doing into working memory. If you constantly switch the focus of your attention, you’re forcing your brain to spend time and effort thrashing, loading, and reloading contexts over and over again.”
For many autistic people the day-to-day normative world we have to navigate even without the pandemic is one in which people and processes frequently do not give us the time we need for transitions. Normative society often seems to think transitions are a one- or two-step process; for autistics, it can be more like five: the first thing, winding down from it, a transitionary pause, spooling up for the second thing, and the second thing.
Most recently, I encountered the state of Oregon’s blog about the pandemic talking to Alfonso Ramirez about still another challenge people have been having: “change fatigue”.
The thing about the pandemic is the sheer number of changes, and the unpredictability. When things are unpredictable and extreme, and that goes on forever, it leads to sensitization, which means you are sensitive to any kind of stress. […] All these stressors make us really sensitive to the next thing. That’s why we have a lot of change fatigue. It’s the feeling, ‘I can’t deal with one more thing.’” […]
Ramirez suggested that “people like routine […] and we can get fatigued when those rhythms are disrupted”. Autistic people typically have an even greater need for structure and predictability (I find these terms less wishy-washy than mere “routines”), so here’s another great opportunity to take your pandemic experience and exhibit more empathy toward autistic people.
There’s one last thing I think is relevant here, although it’s less about your pandemic experience and more about the conversation about getting through it: Shayla Love’s reporting on the idea of “resilience”.
Bonanno’s work has consistently found that people are remarkably resilient—and that resilience may be the norm after adversity. But in the middle of an ongoing pandemic, it’s to be expected that people would still be struggling. “It’s natural to have some stress,” Bonanno said. “It’s natural to be a little fed up with the whole thing.” Since chronic events like a pandemic don’t just end on a specific day, people will be on different timelines for resilience; their “after” periods will take place at mismatched times.
Resilience might sometimes look like grinning and bearing it. “But there’s times when resilience may look like crawling back into bed and crying,” Bedard-Gilligan said. “Feeling those emotions and processing through whatever it is that’s causing them. It may actually be the most adaptive thing you can do at that moment.” Bonnano coined the phrase “coping ugly” for the things we have to do in some situations to manage in the moment.
What does life look like if the “chronic event” isn’t a pandemic (which no matter its length so far still will be transitory) but one’s entire, persistent, day-to-day autistic life? What does resilience look like there? What can you do to assist autistic resilience?
In the rush to get back to “normal”, neurotypicals could do worse than to take stock of how the disruptions of the pandemic affected them, and consider the ways in which the day-to-day of what they consider normal itself can be a daily disruption to those of us burdened with very different brains.