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.

I Am Not Your Metaphor

It’s theoretically possible, I suppose, to make for one thing or another an analogy out of autism. I’d imagine that it’d be ill-advised, and certainly tricky, but the very least prerequisite would be to get autism itself right.

In earlier posts I’ve subjected myself deliberately to some questionable media representations of autism (those of Bewilderment and Dr. Brain). I didn’t expect to be blindsided by Timefulness, a book on geology, in which Marcia Bjornerud drops a charmer right near the very end.

As members of a technological society that can keep Nature at arm’s length most of the time, we have an almost autistic relationship with the Earth. We are rigid in our ways, savants when it comes to certain narrow obsessions, but dysfunctional in other regards, because we wrongly view ourselves as separate from the rest of the natural world. Convinced that Nature is something outside us, a mute and immutable thing external to us, we are unable to empathize or
communicate with it.

I’ll grant her the rigidity, but not all of us are savants even when it comes to whatever our special interests might be, and although disabled, we are not generally “dysfunctional in other regards”—certainly not because we “wrongly view ourselves as separate”. Rather, we rightly view ourselves as being considered separate by the world around us. We don’t believe that the world around us is “mute and immutable” so much as (rightly) believe that it often doesn’t try to meet us halfway.

Bjornerud ends, because of course, with the biggest of all canards: the autistic’s lack of empathy. For actual autistics, it’s difficult not to make defeated hand gestures at this sort of thing.

Where, exactly, should we identify the empathy deficit—especially, if nothing else, given the mere existence of Greta Thunberg—when we are consigned to being someone’s awkward metaphor for humanity’s anthropocenic ruination of the planet?

The Autistic Misinformation Machine

At the risk of venting every last frustration I have with how autism is being discussed, I’m irked enough at this sales pitch on Autism Spectrum News for an autistic path-to-employment program that I can’t convince myself to resist.

Within this perspective, it is important to create space for conversations that center on autistic strengths. There’s no doubt that existing as an autistic person in a world built for neurotypical people can be challenging. As Dr. Stephen Shore said, “If you’ve met one autistic person, you’ve met one autistic person,” meaning every autistic person experiences their unique blend of autism traits differently. Although this is true, current research from employed autistic adults reveals self-identified patterns of strengths in certain cognitive, emotional, and personal qualities that are commonly experienced by autistic people (Cope & Remington, 2021). With that, there should be many opportunities for autistic people to work in a supportive, neurodiversity-affirming environment that allows you to use your authentic, autistic strengths.

Three fundamentally inconsistent things happen over the course of this single paragraph.

First, the authors cite the oft-quoted truism about no autistic person’s experience of autism necessarily being comparable to any other’s. Second, they make reference to research about adult autistics who are gainfully employed. Third, they make the leap to autistic people more generally, something they then continue to do throughout the piece.

It’s really the central thrust of my own autistic experience that said experience isn’t often reflected in the way people write about being autistic, regardless of whether or not actually-autistic people are doing the writing, and once again this is the case here.

You can’t simply look at research about the apparent categories of autistic strengths exhibited by autistic people who are gainfully employed and made broad arguments about autistic people as a whole. It’s certainly on its face incompatible with quoting, “If you’ve met one autistic person, you’ve met one autistic person”.

So-called “spiky skills profiles” (or, in my formulation, spiky resource profiles) put the lie to the idea that just because employed autistics exhibit similar types skillsets any given autistic can be slotted into employment, be it in STEM or elsewise.

In just the first two days of this week, I’ve now run into two pieces of writing (see earlier) which promulgate ideas of autistic success that simply do not reflect my life, and set expectations for my life and other people’s views of it which flatly are unrealistic and, in a way, threaten me harm.

It’s exhausting, and I’m only growing ever more increasingly weary of having to note more instances of it I will have to fight through just to be considered worthy of being alive.

‘She Will Thrive’

The bulk of this response to someone concerned about their partner’s 18-year-old autistic daughter “becoming a huge source of worry and resentment for us both” is pretty much gold, and does a decent job of (gently) putting said someone in their place—something much needed given such victim-blaming statements as, “It feels sometimes that she purposely lets my partner down over very minor jobs, just so that she is not asked to do anything again.”

It’s worth reading the entirety of the long, detailed response. As so often seems the case, though, there was one thing with which I had to take issue.

Once this young woman understands herself, feels understood and supported with the challenges she faces on a daily basis, she will thrive.

You can’t say this, because you can’t know this. No one can know this. One thing that’s become clear to me post-diagnosis is that while the sum total of my physical and psychological resources are sufficient to allow me to live independently, in fact they do not allow me to add atop that foundation actually supporting myself financially.

This doesn’t necessarily equate to any definition of “thriving” for which the original questioner might be looking, judging on their impatient and exasperated tone, and it’s entirely possible that it could end up being the same kind of outcome for the young woman at issue.

Some of us, as I repeat ad infinitum, are neither savant polymaths nor high support needs. Some of us are just “mediocre” autistics, stuck in the unnoticed middle and not recognized as a real potential outcome for young autistics just starting out.

In a culture that fails to value anyone incapable of generating economic value, that certainly sucks, but to pretend any given autistic person will “thrive” in that culture is disingenuous and possibly setting up all concerned for future surprise, disappointment, and (likely misdirected) anger.

My Comments To The Interagency Autism Coordinating Committee

Recently, the Autistic Self-Advocacy Network put out a call for comments to the U.S. government’s advisory body on priorities for autism funding and research. Comments can be submitted until November 30.

The IACC has solicited comments on seven topics, with two supplemental questions. My answers to two of them—on quality of life, and autistic adulthood—are presented here.

Question 5: What Kinds of Services and Supports are Needed to Maximize Quality of Life for People on the Autism Spectrum? (Topic: Services)

Please identify what you consider the most important services research, delivery, and policy priorities and gaps for Question 5.  Topics include: service access and utilization, service systems, education, caregiving and family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and implementation of interventions in community settings.

There is something of a “missing middle” in quality of life discussion and research. Setting aside the obvious focus on children, research and discussion of actually-autistic adults frequently seems to focus on so-called “high-functioning” and “low-functioning” autistics (although I prefer language based upon support needs)—leaving out those of us I’ve called, because of our relative invisibility, the “mediocre autistic”.

To wit: the autistic adult who is more-or-less fully capable of independent living but incapable of being economically useful and therefore is not financially self-sufficient. (Some of us, as I’ve put it, are neither savant polymaths nor high support needs.) Quality of life is negatively impacted for these autistics by virtue of the nation’s difficult disability system which resists distinguishing between the types of personal physical and psychological resources available to any particular autistic (or otherwise disabled) person. Such physical and psychological resources are not necessarily, and certainly not inherently, interchangeable.

The fact, for example, that an autistic adult might be capable of sustaining the physical and psychological loads of independent living does not automatically translate into also being able to carry the additional load of sustained, daily employment—nor does it imply that one could “swap out” resources being used to live independently (which would mean to stop living independently) and use them instead for sustained, daily employment.

To further autistic quality of life, then, an understanding that is both broader and deeper is required on the part of the nation’s disability system, so that autistic adults capable of living independently but not also capable of sustained, daily employment are not left either to surrender their independence, to live in poverty, or both.

Question 6: How Can We Meet the Needs of People with ASD as They Progress into and through Adulthood? (Topic: Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services, and policy issues, relevant to Question 6. Topics include: health and quality of life across the lifespan, premature mortality, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.

Often missing from research and discussion of autistic adulthood are the dynamics unique to the late-diagnosed (especially the midlife-diagnosed) and the challenges inherent for the late-diagnosed autistic in elucidating for the nation’s disability system the whys, hows, and wherefores of having “survived” for decades apparently without requiring any support and then “suddenly” requiring (potentially substantial) support post-diagnosis.

While there’s increasing research attention to the mental health impacts of the intentional masking and camouflaging of diagnosed autistics across their lifetimes, less attention has been paid to the unintentional or unconscious masking engaged in by both the above diagnosed autistics and undiagnosed autistics—the latter of which is my focus here.

Once, not long after my own midlife diagnosis, when reaching out to a local nonprofit that assists disabled individuals access support and services, I was blindsided by an incredulous and skeptical, “Did you really not know?”

Yes, you really can not know.

The pressure to socially conform can be significant enough to cause the unknowingly-autistic to mask even from themselves, suppressing or explaining away both their disconnect and their distress. Surely, the unknowingly-autistic can think, either I’m simply a failure (and so my difficulties are my own fault) or my distress in the world is something everyone is experiencing but silently sucking up (and so my difficulties simply aren’t worth mentioning).

There easily can be a lack of both internal and external motivators signaling you to reach out for help, and there are (arguably) irresistible social forces pushing you simply to conform.

Conformity, however, doesn’t mean you’re managing just fine. It doesn’t mean you were actually not autistic for all that time. It doesn’t mean you weren’t, in reality, making yourself worse year after year, decade after decade from the unaddressed trauma.

Often related by late-diagnosed autistics is the bizarre experience of having become (for lack of a better phrase) “more autistic” after their diagnosis. What happens here, I suspect, is that in addition to the retcon of your life that a late autism diagnosis can be, all of that internal masking comes undone—behind which lay the years or decades of damage you unknowingly inflected upon yourself through succumbing to the weight of social conformity.

Related to all of this is the now almost commonly-described experience of autistic burnout. In many ways I suspect that the (for lack of a better phrase) “regression” experienced by late-diagnosed autistics in fact is a form of autistic burnout as we’re playing a kind of psychological catch-up with our lifetime of trauma from the lack of either disability accommodation or mitigation strategies.

Arguably, there are important qualitative differences between being diagnosed in your twenties versus being diagnosed in your forties—in terms of the presumptive time available to make adjustments to your life going forward and in terms of the amount of life you’ve lived so far under the disconnect, distress, and trauma of having been unknowingly autistic.

Needed, then, in research and discussion of autistic adulthood is the inclusion of the unique challenges faced by the late-diagnosed, and especially the midlife-diagnosed.

The sharp-eyed might notice that neither of these answers manages to keep to the IACC’s 1500-character limitation on public comments. Normally, I can meet a character or word limit; in this case, I suppose I lacked the motivation. As such, only select paragraphs were submitted to the IACC—with links to this post included.