The Profound Autism Representation Problem

This week, an autism commission convened by The Lancet issued recommendations including one urging the adoption of the term profound autism to describe autistics requiring “round-the-clock, lifelong care”. The term would not function as a diagnosis but as a way to communicate the challenges unique to one particular autistic population.

For my part, I’ve exactly zero quibble with this recommendation, especially with the online discourse weighted toward other autistic spectra. It’s worth, however, getting into the thoughts of Alison Singer, head of the Autism Science Foundation, who served on the commission.

I am grateful that after many difficult years I no longer must constantly fight to make it known that Jodie’s needs are far different from individuals on the high-functioning end of the spectrum who are more commonly depicted in the media (think of characters on shows including “The Good Doctor” and “Atypical”). The dominant presence of this type of autism in the media — which is often amplified on social media by higher-functioning individuals with autism — has led to a widespread misunderstanding about what having autism even means.

When I was younger—say, back in the 1980s and 1990s—the overwhelmingly dominant depiction of autism in fact was one in which Singer would recognize her daughter Jodie. In my own personal pop cultural history, I mostly think about St. Elsewhere‘s Tommy Westphall, although there were other similar characters. (Rain Man‘s Raymond Babbitt, as a sort of “low-functioning savant”, was, if I recall correctly, something of an exception.) Singer’s above complaint increasingly is right: now it’s all about so-called high-functioning autistics or outright savants.

As I’ve said before, though, this cultural pendulum swing back and forth between what we’d now term profoundly autistic and autistic savant tends to leave mediocre autistics like me (capable of living independently but not of being economically useful) with a headache from getting hit by the bob as it passes us by.

Anyone who thinks autism isn’t a disability should spend a day with my daughter.

Those who eschew labels and instead proffer the notion that autism is just an alternative way of being have created a world in which it is increasingly difficult to communicate the needs of individuals who require substantial support to thrive — or even just survive. Mainstream autism advocacy is increasingly focused on more independent individuals, which leaves people at the more profound end of the spectrum forgotten and misunderstood.

This is something of a dig at the neurodiversity lens, even though almost no one outside of the ridiculous extremes of “Aspie supremacy” views neurodiversity somehow as exclusionary of the needs and challenges of profound autism. The social model of disability which tends to go along with the idea of neurodiversity does not preclude aspects of the medical model. They aren’t in any real way mutually exclusive.

It’s true that high-profile autistics like Hannah Gadsby sometimes needlessly muddle things by saying things like, “It’s not autism that makes it difficult to live with autism. It’s the world we’ve created that is not geared in our favor.” Even mediocre autistics like myself know that this is utter bullshit: sometimes it’s the world but sometimes, yes, it actually is the autism.

I do get where so-called autism parents like Singer are coming from. Some autistics like Gadsby keep shooting their own community in the foot, after placing it firmly in their own mouths. It’s important also to recognize, though, that the strident voices of the neurodiversity movement in many ways came as a response to the previous domination of the online—and offline—discourse by, well, autism moms, leaving out the voices of anyone who was actually themselves autistic.

Representation often can feel like some sort of zero sum game, and autism discourse certainly often seems like a model example. The truth, though, is that taking turns throwing each other under the bus ultimately doesn’t help anyone.

It just keeps that pendulum swinging, feeds into the dangerous mythology of resource scarcity, and keeps those autistic people not of the currently-favored spectra on the outs.

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Bix F.

The unsupported use case of a disordered*, mediocre midlife in St. Johns, Oregon—now with added global pandemic and climate crisis. Read more.