Smartphones And Slime Molds

Early on in Life’s Edge: The Search for What It Means to Be Alive, Carl Zimmer has a few observations to make about slime molds.

Slime molds manage this escape by using a brainless kind of memory. They continually send out probing tentacles, and the ones that don’t detect increasing signals of food retract. As they pull back, the tentacles leaves behind a slimy coat. Physarum can sense its own trails and will steer its new tentacles away from them. This external memory lets a slime mold override its attraction to sugar. Rather than banging its multiheaded head against the acetate wall, it can move out of the cul-de-sac and explore new paths toward food. We need a brain to remember things, but Physarum has no such organ. Instead, it stores a record of its experiences in the outside world.

In my last post, I talked about how my baseline functioning can be more or less fully described as the various and sundry things necessary for independent living, but it’s worth nothing that my capacity to successfully live independently has greatly increased with the advent of the smartphone.

Prior to the era of the smartphone, my ability to stick to a budget was questionable at best. In the era of the smartphone, I don’t miss appointments; I “remember” to take my meds, and feed my cats.

Had I been diagnosed as autistic fifteen years ago, anyone determining my abilities in the so-called Instrumental Activities of Daily Life would have had some excuse for skepticism. Like slime molds, I need to outsource my brain to some external help.

Circuit Breakers

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.

Trauma Without Memory?

My therapist and I have talked a lot about trauma. In and out of that context, I’ve referenced it here and written about it elsewhere—the idea being that a lot of being actually-autistic in the world seems analogous to the way in which people relate trauma.

I’ve talked before about how the inhibited habituation within the autistic brain raises the possibility that things that to the allistic world are “objectively” not traumatic might in fact be experienced traumatically by autistics. One thing I’ve gotten stuck on, though, is that much of how trauma is discussed involves memory and the re-experience of memory, and I’ve wondered, then, how trauma could get laid down in the brain of an autistic person who also has identified themselves as having Severely-Deficient Autobiographical Memory.

To wit: if my memories record the events of my life but not the lived experience of those memories, how can any experiences in my life be traumatic in the sense of causing me impairment beyond the instance of living those experiences at the time that they happened?

As often happens incidentally just from the sheer amount of stuff that I read in any given day or week, I ran into an article about something else altogether that maybe starts to give me an answer to that.

One way stress does this is by triggering the release of hormones called glucocorticoids, most notably cortisol. In small doses, glucocorticoids help the brain and body respond to a stressor (think: fight or flight) by changing heart rate, respiration, inflammation, and more to increase one’s odds of survival. Once the stressor is gone, the hormone levels recede. With chronic stress, however, the stressor never goes away, and the brain remains flooded with the chemicals. In the long term, elevated levels of glucocorticoids can cause changes that may lead to depression, anxiety, forgetfulness, and inattention.

[…]

Chronic stress can also alter the prefrontal cortex, the brain’s executive control center, and the amygdala, the fear and anxiety hub. Too many glucocorticoids for too long can impair the connections both within the prefrontal cortex and between it and the amygdala. As a result, the prefrontal cortex loses its ability to control the amygdala, leaving the fear and anxiety center to run unchecked. This pattern of brain activity (too much action in the amygdala and not enough communication with the prefrontal cortex) is common in people who have post-traumatic stress disorder (PTSD), another condition that spiked during the pandemic, particularly among frontline health-care workers.

I feel like somewhere out there, inevitably, are articles and papers about the ways in which memories are laid down in the brain as compared to the ways in which stress is laid down in the brain. I would like to find them.

Being actually-autistic in many ways is a kind of chronic stress, but, as I said, my lived experience is not re-experienced in the way we seemingly consider it to be necessary to discuss trauma. My subjective reality, though, to take one example, is that while I do not re-experience my vocational rehabilitation job placement, thinking about it, or thinking about returning to work at all, does conjure up into the present my fight, flight, or flee response.

During my first stab at a disability claim, in the wake of that debilitating job placement, the psychologist they sent me to for the consultive exam reaffirmed my autism diagnosis but also diagnosed me as having Adjustment Disorder (with anxiety and depressed mood). While more recent discussions of Adjustment Disorder have begun to incorporate a chronic version of the disorder, it’s mostly talked about in terms of a specific stressor, and usually contextualized around an idea of contemporaneousness, or at least a kind of temporal adjacency.

That job placement was in late 2017 and early 2018, and while one could make a case for a case of chronic Adjustment Disorder, the fact that my therapist and I keep having very interesting and fairly productive conversations about trauma, specifically, raises the argument of a refocusing—be it considered Post-Traumatic Stress Disorder itself or (because PTSD in the DSM-V emphasizes mortal or existential threats) so-called “subclinical” alternatives such as Other Specified Trauma- and Stressor-Related Disorder.

It’s an open question, beyond even that, what that means for treatment, per se. As referenced above, there’s some evidence that autistic brains simply don’t “do” habituation and often the focus of the treatment of trauma is exposure therapy which depends upon habituation.

What a refocus onto trauma would accomplish, however, is an increasingly accurate way to discuss and describe what living my life feels like—by which I mean not only to myself, or in therapy, but in my interfacing with the outside allistic and neurotypical world around me.

Too many people still don’t have much of a handle on what it means to be autistic, but I think it’s fair to say that a lot of people have some understanding of trauma. I’d like to think that offers something of an opportunity for a closer reading of the my autistic experience by those around me.

Sorry, But Yes: I Hate Being Autistic

What follows is excerpted from a week and a half’s worth of notes taken for use during therapy this Friday. This past Friday was bladder and prostate surgery; I spent the weekend feeling purely mechanistic and empty of self.

Tuesday, part one

Near-miss mental health crisis at catheter removal when without any advance prep before the appointment the nurse raised the possibility that if the void test (which they also didn’t tell me about) wasn’t satisfactory they might re-catheter me right then and there; I’ve never been catheterized except when under anesthesia; while nurse out waiting to talk to urologist, I’m sitting there half naked under a sheet, rocking, smacking the table with the flat of my palm, kicking the floor with my bare foot, stuck in an out-loud loop of “I can’t I can’t I can’t I can’t”.

Tuesday, part two

Forty minute errand in the 85 degree heat, me moving at a snail’s pace so as not to pull or jostle anything, absolutely miserable the entire time; more empty and mechanical I can’t live like this.

Wednesday, part one

Early to store before real heat but it’s already too bright right in my eyes and on my face and I’m still moving gingerly and between me and store is people sawing concrete and pavement and then on way back right when I get to the last intersection before my house of course there’s an asshole in a hotrod gunning his engine and roaring down Lombard thinking he’s in a fast and furious movie instead of living in a world of other real people he’s pissing off and hurting and yes I did literally scream “I hope you fucking crash” and then slightly less loud “it could even be into me for all I fucking care”.

You Wouldn’t Hurt Yourself

Over the past couple of weeks I’ve had to endure first a quick walkthrough of my apartment by potential buyers of the property, and then a longer, excruciating inspection. Having confirmed that a sale is pending, I’ve started to worry about the prospects of needing to move—a cognitively confounding idea even without the fact that I’m currently dealing with a bunch of medical stuff.

The day before the walkthrough, I did a complete (I wouldn’t, per se, call it thorough) cleaning, which made me think a bit about something I’ve said before, both in blog posts and in therapy, about how I’ve pretty much established a consistently-maintained foundation of independent living, but its a foundation that can’t support anything because it takes all my available resources just to keep the foundation sound.

This new up-in-the-airness of my living situation made me think about making such a case to the powers that be in the disability process, and could only picture them responding that the solution is to do away with my living independently so that more of the foundation is maintained by others, freeing up resources for other things, like employment.

Resources, though, are not interchangeable. The resources it takes for me to maintain my foundation can’t simply be reallocated in some kind of master budget to some other line item. It takes different kinds of resources to do different kinds of things. That short job placement through Vocational Rehabilitation a few years back strongly suggests that I simply do not have the kinds of resources necessary to work.

I kept thinking about being made to stop living independently. I tried to project myself forward into what that life would look like, for me.

It felt like every single anxiety—actually, fear—response at my nervous system’s disposal flared up at once. It a bit felt like dying. It a bit felt like maybe dying would be better.

In the rare moments my brain glances off that idea (and, to be clear, I’ve never before had my nervous system light up at just stray thoughts, or “passive suicidal ideation”) there’s a clear strain of my inner monologue that plainly states that I’d never actually hurt myself.

Thinking about losing my independence, though, my inner monologue didn’t say that this time.

It lasted all of ten minutes, and then I was on to other, mundane day-to-day things, but it starkly contrasted to…well, to any other sensation I’ve ever had. I am not, as a general rule, at all sanguine about my future. Even obtaining disability benefits would leave me woefully short of the financial part of maintaining my foundation.

Still, this is the only time my inner monologue didn’t seem to have a counter-argument. I’ve lived independently for decades. I can’t go back.