Before I even got to the parts of this Vice piece on resilience that would almost directly speak to it, I started thinking about those sobbing breakdowns I was having during my vocational rehabilitation job placement in late 2017 and early 2018—fits which even before discussing them with a therapist at the time clearly were features, not bugs.
What didn’t occur to me until I sort of background ruminated on those breakdowns as I read the piece is that there’s a better metaphor to use when talking to people about my own particular difficulties than the one I use about a building’s foundation: electrical wiring and circuit breakers.
Those sobbing fits were protective measures built into my brain, tripped when the metaphorical electrical load of psychological and physical stressors became too great.
While my lifetime of unsuccessful work attempts did not result in repeated sobbing breakdowns, they nonetheless all resulted in those breakers being tripped within six months, with the rare and unreplicable exceptions of jobs where the load was to some degree lightened or lessened, for example, by the fact of me working with people who already knew me prior to the job—something which mitigated or accommodated certain challenges of my then-undiagnosed autism and comorbidities.
The ways in which my particular autism have wired the psychology of my brain and the physicality of my body (by which I mostly mean, for example, that sensory issues don’t simply impact one’s mood but also can impact the way one moves) is such that I’ve simply got limits to the load I can carry.
Add load of any significant strength beyond the level required just to be living independently, absent the difficult-to-replicate mitigating factors, and those circuit breakers will trip every time.
This is the defining truth of my entire life, and its attendant reality at this stage of my life is that my capacities simply are not going to increase with additional age.
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 should instead be understood as the process by which we interact with our environments, resources, and support. “We’re influenced by the world around us,” Ungar said. “Our ability to cope is a reflection of not just positive thinking but also how well we’re supported by our governments, by the institutions around us, by our family, our friends, and the opportunities we have as well.”
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, the first four and a half decades of which were lived not knowing you were autistic? What does resilience look like there? What expectations of support-giving should government, institutions, family, and friends have for you?
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.