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?