I’ve talked before about how various aspects of neurotypical living through the pandemic, like so-called “Zoom fatigue”, were analogous to how it is to live as an autistic every single day. There’s a piece from MIT Technology Review about alternatively using more enveloping technology such as virtual reality or video games.
[…] A video of myself was condensed down to a tiny square that wandered a virtual lobby space with couches, a piano, snake plants, and a jukebox blaring out a Spotify mix called “Quiet Hours.” Once founder Brett Martin joined, he took me on a tour of the room. His voice became faint if I ever lagged too far behind, an acoustic feature meant to imitate real life.
“Wait, let me show you something. Are you ready?” Martin asked suddenly. Before I could respond, I found myself walking along a beach.
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. Welcome to my everyday.
Also of note is this Culture Study interview with the author of Generation Disaster about what it means for Americans born between 1989 and 2001 having to live through multiple, successive, and simultaneous crises.
Every generation has its experiences, individual or collective, that open their eyes to the fact that world is not really a safe or fair place — and I’m not trying to spark a competition about which generation has had it worse than others. External forces that drive childhood and adolescent anxiety about the world are not a new phenomenon. But I try to make the case throughout the book that no past American generation has faced the cumulative load of multiple simultaneous stressors with which today’s emerging adults grew up.
Virtually no one gets through life without experiencing some form of trauma, and some people get far more than their fair share. But most of us also have the capability to adapt and to recover from those difficult times — what we refer to in the disaster mental health field as “getting back to baseline functioning,” whatever that looks like for each individual. We can view our sense of destabilization as a departure, hopefully temporary, from the norm. With time, effort, and maybe some counseling, we can get back to something like that norm, and we might even experience post-traumatic growth in the wake of experiences that force us to reevaluate our worlds. That was my own post-9/11 path, though it came at a significant psychological cost.
Living as an autistic—certainly as a late-diagnosed one—itself can be seen as living through a cumulative load of multiple simultaneous stressors. What, when the disability is explained by both the medical and social models and is lifelong—and when it went undiagnosed and therefore unaddressed, unaccommodated, and unmitigated for your first four and a half decades—would “getting back to baseline functioning” even look like?
All of the above surely feeds into the arrival of autistic burnout into the pages of The New York Times, surely one of its most high-profile bits of coverage.
There’s a certain degree of conflation, I think, in the way the piece discusses autistic burnout; it happens in almost every discussion. We’re still finding consensus on what defines autistic burnout as opposed to, say, garden variety autistic overwhelm or overload. For me, autistic burnout still feels far more…existential, for lack of a better term. It’s not just a matter of getting some decent rest for a couple of days and being all good.
My sobbing breakdowns at that job placement very much were a component of autistic burnout. Late diagnoses frequently gets described by those so diagnosed as leading to becoming “more autistic” as the lifelong, self-deceptive, interior masks fall. That’s precisely the time in which I worked with vocational rehabilitation to find a job. And then all hell broke loose.
In rapid succession, I went from undiagnosed and flailing, to diagnosed and becoming “more autistic”, to trying to include the additional load of a job, to having to quit that job, to relocating not just myself but a nonprofit project from one side of Portland to the other, to having an explosive autistic meltdown at that nonprofit, to having to quit the nonprofit altogether.
I don’t know any other way to say it: my “baseline functioning” is living independently but being unable to financially support doing so. And even just the living independently part has high-functioning points and low-functioning points—or, to use my preferred language, low-support needs points and high-support needs points.
I think we’ve pretty firmly established the maximum load of the psychological and physical wiring of my life. What remains is whether or not the social infrastructure in which we all live thinks I deserve to live without being economically productive.