Opening A Support Ticket

I’ve long been in agreement that functioning labels need to go but I’m not sure about replacing them with internalized versus externalized presentations. Autistic presentation can be as variable as autistic functioning; this would seem to replace one inconsistent, incommunicative phrase with another.

My priority is for a framing around support needs.

This, too, can be variable but seems to me far easier to generalize across a lifespan—or, at least, across life stages—than either functioning or presentation. Noting differences in presentation certainly communicates that autism isn’t WYSIWYG but someone with an internalized autism presentation still might have significant support needs, and vice versa.

In the real world—or, at least in my real world—the crux of how my life is going to be in the coming decades is entirely about my needed levels and kinds of support, irrespective of functionality or presentation at any particular moment.

Pathologies And Pendulums

The trouble with being a mediocre autistic is that you can’t have a purely positive response to something like Spectrum‘s pair of surprisingly forward-thinking articles on autistic strengths and special interests. I’d like to think this is something of a milestone for Spectrum; much of their coverage has felt very much in favor of so-called (and misnamed) “evidence-based” treatments designed primarily to make autistic kids outwardly less autistic.

These deep-dives do a fairly decent job of discussing the current trends away from pathologizing certain aspects of autism and toward more nuanced perspectives, but even these pieces leave me feeling somewhat left out.

No, none of my life’s worth of serial special interests have led to a bountiful career; no, I don’t have autistic superpowers. The strengths piece at least, for once, gets close to what I mean by that.

What is more, the definition of ‘strength’ may be a matter of debate, as it may depend on the situation. The ability to focus intently on something, for example, can be a boon for completing a project or assignment to meet a deadline, but an obsession to finish can come at a cost to sleep, Kapp says. In the 2019 survey of 24 autistic adults, which Kapp helped conduct, one person reported that their hypersensitivity to color was an asset for enjoying nature but was overwhelming when walking down a crowded street; a gardener said her attention to detail made her a master weeder but could be problematic when faced with time pressure. Honesty and openness may help forge close friendships, but an inability to tell a white lie may hurt a friend’s feelings. “This sort of dichotomizing of strengths versus weaknesses is a bit of a fallacy,” says Ginny Russell, an investigator on the study and senior research fellow in mental health and developmental disorders at the University of Exeter in the U.K. “The context seems to be really important.”

This always has been the key point lacking in most discussions of autism: the supposed strengths—often discussed by autistic people themselves as superpowers—are more like trade-offs. Nothing about my being autistic ever has been solely a boon; there’s always, always, a downside, too.

That said, I do appreciate Spectrum giving this much space to the discussion of depathologizing certain aspects of autism—but autism still has pathologies.

When last year I first quit social media and then second quit blogging, I did migrate all of my autism blogging over to Tumblr in order to keep it online. I’m still deciding what to do with that space, but something I said there is relevant here.

“I’m not one of those autistic people who argues against pathologizing autism,” I wrote. “I think parts of being autistic are pathologies, but I think we get wrong what are those pathologies.”

Restricted interests and rigid thoughts and behavior aren’t the pathology. Instead, inhibited filters against stimulus and limited attentional resources are the pathology; the restrictedness and rigidity are the adaptations to manage that pathology.

There’s a little bit of monotropism here, in that monotropism is about attentional resources and its theorists suggest that “the restricted, repetitive and stereotyped patterns of behavior and activities and the restricted interests … follow from the monotropic tendency”.

I suppose I’m simply suggesting that the monotropic tendancy itself is the result of, or perhaps is defined by, having in the first instance inhibited filters against stimulus and limited attentional resources.

This would help explain why popular “treatments” such as Applied Behavior Analysis are so resoundingly rebuked by so many autistic people: when we move to (literally or figuratively) beat out of an autistic child their restrictedness and rigidness, we are waging a war against the adaptations with which the autistic brain manages autism’s true pathologies.

Spectrum‘s piece on strengths, remarkably for the site, tip-toes right up to the line on this point, using special interests to do it.

One way to improve support, McDonald says, might be to modify treatment programs to focus on strengths. Early intervention in autism is important, she says, but tends to teach a scripted set of social and life skills. An autistic child who spends 40 hours a week in such a program may have little time to pursue special interests, and may even be discouraged from pursuing them, she says. “Early intervention might see an interest in cars as something restrictive that might need to be pared down, but if a typical child showed the same interest, the reaction might be ‘Let’s get you more information on cars,’” McDonald says. Encouraging a special interest might set a child up for professional success.

(We’ll set aside here the casual, off-handed reference to the idea that any child should be spending the equivalent of a full-time job in any sort of autism intervention program rather than simply in being a child.)

By all means, let’s depathologize the aspects of autism that I suspect actually are the heroic adaptations of the autistic brain to dealing with the actual pathologies of autism. I worry, however, that in the process—despite these Spectrum pieces going out of their way to say they are not talking about autistic savants—the strengths dialogue nonetheless might effectively place more autistic people in a savant-like (or savant-adjacent) grouping in the discussions of autism, continuing to leave out people like me.

My special interests aren’t going to net me a career, and my strengths come with very clear and present costs. Some of us are neither high support needs nor savant polymaths.

“As the pendulum swings between coverage of autism as the one to coverage of autism as the other,” I’ve written, “people like me just get clobbered in the head as the bob goes by.”

Even coverage that’s good for autistic people in general gives this mediocre one a headache in specific. Where’s the academic research into the pathologies of autism coverage?

That Inevitable Snap

It eventually came in over the Arabian Peninsula and crashed near the Maldives, but I failed to take Marina Koren’s advice not to “fall to pieces just because China’s rocket is”—notwithstanding Harvard-Smithsonian Center for Astrophysics astronomer Jonathan McDowell telling Koren that “the chance of someone being hurt is maybe a percent or so [and] the chance of you being hurt is 8 billion times smaller than that”.

Somehow lately I’ve entered another period of being unreasonably afraid of dying. Yes, another; it happens regularly, if not frequently. (The afraid, not the dying.)

It’s not clear what set off this latest bout of death anxiety (or, thanatophobia). Possibly this year already having yielded three different urinary tract infections, an unexplained recurring nosebleed, and the continuing stress of a global pandemic. In the past, it’s just sort of…happened. Kind of like death.

I don’t remember such anxiety thirteen years ago when my father died, something you’d think would be a natural trigger. The anniversary came and went unnoticed last month (why isn’t it in my calendar), but it could have been waiting to sneak up on me.

I’ve had many nights in the past where the idea of dying, or the idea of the actual process of dying, has kept me up at night. This happens, too, if I’ve been reading something astrophysical; it gets my mind racing to the incomprehensible fact that anything even exists at all in the first place. (What does Jonathan McDowell have to say about that, I wonder.)

I fear not existing, even though I won’t exist to feel anything about the fact of non-existence. It’s not about what will happen to my stuff, or what about the people I leave behind (although, while we’re here, what would happen to my cats) or there’s so much I didn’t get to do (although, there’s so much I will never get to do, because neoliberal capitalism). It’s just about the dying.

(It certainly hasn’t helped that Sunday’s episode of Zoey’s Extraordinary Playlist featured a heart attack; I’ve a mortal fear, specifically, of having a heart attack or stroke. Blame the second of those on Frank Pembleton.)

Did I mention that the fact that anything even exists at all is incomprehensible and impossible and what does “exist” even mean and nothing about the universe being here makes any sense and just where is here anyway. It’s as if I fear existing and not alike.

It didn’t last long: at the outside I spent maybe twenty minutes convinced there was a realistic chance of being killed by a Chinese rocket. They always say you won’t win the lottery but wasn’t everyone who ever won the lottery told the same thing.

I am going to die.

It might not happen because a Chinese rocket (or, to be fair, a Space X one) falls out of the sky, but it’s going to happen. It might come with some sort of foresight that it is, or it might happen as suddenly as a rocket from above.

Isn’t it always as sudden as a rocket from above?

Did I Have COVID?

Very early on in the pandemic, in February 2020, James Hamblin of The Atlantic passed along Harvard epidemiology professor Marc Lipsitch’s view of what was to come, in a piece entitled “You’re Likely to Get the Coronavirus”.

Lipsitch predicts that within the coming year, some 40 to 70 percent of people around the world will be infected with the virus that causes COVID-19. But, he clarifies emphatically, this does not mean that all will have severe illnesses. “It’s likely that many will have mild disease, or may be asymptomatic,” he said.

Last month, Katie Camero of Miami Herald reported on some early studies which perhaps point to a way to know whether or not Lipsitch and Hamblin were right.

Early studies and countless personal stories show previous infection with the coronavirus may open the floodgates for more intense reactions to the first dose of a COVID-19 vaccine, as opposed to the second, which the majority say causes stronger side effects.

[…]

That’s because the first vaccine dose — or single shot of the Johnson & Johnson vaccine — works as a booster to the lessons already learned from natural infection, which may carry with it inflammatory responses such as fevers, chills, headaches and muscle aches.

In a study described by Camero from researchers at Icahn School of Medicine at Mount Sinai, subjects who’d had COVID prior to being vaccinated experiences “side effects such as fatigue, headache, chills and fever” which were “similar to those usually felt after second doses”.

The short version is that for the Pfizer and Moderna vaccines, the first dose is a sort of introduction for your immune system, while the second dose prompts your immune system to lock in its recognition and response. In essence, for those who’d previously had COVID itself, that functioned as the introduction, with the first vaccine dose prompting the lock-in.

As I write this, it’s five days after my second dose of the Pfizer vaccine. While I’ve had some, for lack of a better term for it cognitive malaise and muscle tiredness, it simply hasn’t compared to the five straight days of overwhelming mental and physical fatigue after my first dose.

If I did have COVID, making my first dose the immune system lock-in, it would have to have been either a mild case or completely asymptomatic. Many of the expected symptoms of a mild case might have been indistinguishable, to me, from something like seasonal allergies and/or my bouts of autistic fatigue.

I would guess that at this point there’s no way to tell; presumably antibody tests would show positive due to the Pfizer vaccine. Still, I’ll be curious to see further studies on how those who’d had COVID experienced their vaccine doses. As it stands right now, this study does have me wondering if I’d had it, and if so, when.

Begin The Begin

Last year during the height of the pandemic, I quit social media. The long and the short of it being that I’d come to realize that the feed is a cognitively terrible way to present information, even setting aside the way in which it’s gamified to trigger dopamine responses. The problem, for me, is that my brain overloads when presented with the problem of a database as opposed to that of a narrative.

My return to blogging became something of a casualty of quitting social media, in part because that return had become somewhat inextricably tied to Micro.blog, whose feed might not be algorithmic but remains, being a feed, the cognitive problem of a database. Even absent the service deciding for me what I should see, it remained a jumble (if not the jungle of something like Twitter) of context collapse.

Months of blogging got unceremoniously sent down the memory hole (although I have a private copy)—my mediocre autism blogging, for what it was worth, I did methodically transfer into Tumblr—and I went my merry way into a mostly asocial internet as an adjunct to my mostly solitary offline life.

The problem is that I keep having things to say, and that I need to find a way to say them without concerning myself in the least with whether or not anyone is reading them, or if anyone cares. Back in the earlyish days of blogging, I could keep up with interesting blogs, and interesting blogs could keep up with me. Then everything became social media and I spent a decade subjecting myself to its cognitive violence.

So, I’m trying again. There are no comments here; posts do not accept trackbacks, pingbacks, or webmentions. I’m not linking this site to any social sites, and that includes those whose feeds are not algorithmically-driven.

In an attempt to make some distinctions, this time around I’m pulling some things out into widgets. Rather than trying to blog every article I read, and every change to what my current fiction or nonfiction reads are, those sorts of things will simply live in the site footer. This includes a sort of status update where I can just give a quick sense of what’s going on with me at the moment.

Any one of these things might also become a longer blog post, if I feel the need for one, but this way anything that might once have been a tweet can just live in a semi-static widget, keeping the blog itself relatively cruft-free.

Last time around, I also routinely sidetracked myself into the frustrations of trying to customize anything and everything. This time, I am trying to just let that shit go. Either things work the way I want them to solely through plugins and minor tweaks to CSS, or they don’t.

It’s unclear what the specific motivation is here. (Typo: notivation, which, of course.) Perhaps some combination of a week of minor Pfizer pfatigue (more on this later) that also happens to lack the usual Friday therapy appointment. 

Final point of interest: the two days I spent on considering and devising this reboot were an exemplary instance of autistic hyperfocus being both useful and problematic, in that while the falling away of attention to anything else is what enabled the site coming together so quickly, repeatedly forgetting to eat only makes the pfatigue worse. Autism is not a superpower.