As some readers may have seen, the outlet Thought Catalog picked up a viral Instagram post by a “profound autism” proselytizer that seemed to characterize actor Edward Norton as supportive of the concept of “severe” or “profound autism” as the only diagnostically valid framing. Thought Catalog writer January Nelson ran with that characterization in an article that had its own share of virality. The problem is that in each case, Norton’s remarks are plucked well out of context, and he made no mention of “profound” or “severe” autism whatsoever. In the case of Nelson’s piece, a history of the neurodivergent movement and the work of Steve Silberman also are both treated with an ahistoric, shallow insouciance.

Given the outlet and the parties involved, this subject might seem like a flimsy or even frivolous one to devote to analysis. But the conversation Norton was having touched on far deeper topics in the neurodivergent community than these false framings imply, and I think that’s worth unpacking.

An IG post from @life_with_severe_autism (natch) picked a fractional part of the conversation Norton was having with Dax Shepard on the latter’s Armchair Expert podcast and posted the video clip with a comment saying “Yes!!!! Thank you! 👏” and some general hashtags.

As with a lot of soundbites extracted from context, what Norton says in that isolated clip serves as a mirror for whatever beliefs people hold. In this case, the beliefs are about autism, claims of its being “overdiagnosed” or “romanticized,” or the urge to place autistic people into categories like they were Pantone color options for painting the bedroom. The post exchange has been picked up by right wing sites going on about “autism as vaccine injury” ad nauseam and by the profound autism grievance parent crowd, all seeking to draw their own toxic conclusions.

The full exchange reveals a discussion that has long been ongoing in the neurodivergent community: the selective co-opting of traits for different diagnoses as a way to claim a “superpower” or to excuse behavior. The exchange between Shepard and Norton was not crisply linear, but the upshot of it was clear: People with these conditions experience disability, not just strengths or superpowers, and a cavalier or self-promoting use of these diagnostic labels is not OK. There was nothing in the conversation that implied a belief on Norton’s part that someone must fit the descriptors used for “profound autism” to be considered autistic. Indeed, he cites “Love on the Spectrum” as a show that he appreciates for celebrating love while “observing people with … real real divergence, real conditions.” By no stretch of anyone’s imagination could all of the people on that show be defined within the commonly proposed checklist for “profound autism.”

In the Thought Catalog piece, January Nelson lifted the framing of the @life_with_severe_autism IG account and ran with it headlong into mind-reading Norton’s thoughts. Nelson’s bio on the Thought Catalog site describes her as writing about “astrology, games, love, relationships, and entertainment.” In keeping with that, Nelson has previous entries on the site that include hard-hitting sociocultural news such as “3 Intuitive Zodiacs That Receive Divine Messages While Praying.”

In picking up the IG post, Nelson seems to have diverted well out of her usual lanes and into the shallow waters of limited understanding. In the piece on Norton’s comments, she commits a number of basic missteps, including attributing one line to Norton that Shepard actually spoke, and conducting superficial research into the opening topics of their exchange: autism, Silicon Valley, and how some people [IYKYK] in tech use an autism diagnosis to explain away their bad behavior or to claim some form of intellectual “superpower.”

This is a messy area because sometimes autistic people do engage in behaviors that they or others may seek to attribute to being autistic; some people do talk about being autistic as a “superpower”; and there is a perception of Silicon Valley as representing a nerd culture that often overlaps with the autistic population in popular tellings.

Amid this complexity, Nelson appears to have done the most cursory search imaginable, possibly literally just typing in “autism” and “Silicon Valley” after seeing the clip of Norton’s comments. Indeed, conducting that search using Google’s trash AI search (I usually keep it turned off) yields a summary with the phrase “the geek syndrome” in its headline. The summary makes immediate mention of the late Steve Silberman, who wrote a famous piece for Wired magazine back in 2001 entitled “The Geek Syndrome.” The first linked source offered in that AI summary goes straight to a Transmitter review of Silberman’s book Neurotribes and with that, Nelson was presumably off to the races.

Reading Norton’s mind, part 1

Although Norton made no mention whatsoever of Steve Silberman or his book, Nelson claims that the “throughline” of Norton’s “complaint” is that Silicon Valley romanticized autism as something quirky in a way she says Silberman first highlighted in his Wired piece. Nelson claims that the piece and “later, the neurodiversity movement,” shifted autism “stigma toward ‘different, not less’” and to the “superpower” language. She also writes, without any evidence whatsoever, that Norton is explicitly pushing back on this “framing.”

This ahistoric summary does a disservice to the neurodiversity movement and to Steve Silberman. The neurodiversity movement took recognizable shape in the 1990s and most emphatically did not follow on Silberman’s 2001 Wired piece.

His piece, in turn, did not link “elevated autism diagnoses” to traits that “helped in coding.” It linked being an autistic child to having autistic parents. Silberman posited that the increased rate of what was then called “Aspergers” in the SF Bay Area might be attributable to autistic people being drawn to the tech industry, where they meet other autistic people and together parent autistic children.

The primary takeaway from “The Geek Syndrome” was that autism was likely largely genetic and that the growing awareness of it in a network of families in a confined geographic area also might be a contributing factor to local increases in diagnoses. This emphasis on genetics and awareness as explanatory factors did not kick off a “romanticization movement” around being autistic or characterize the merely quirky as autistic. The piece did exactly what Silberman had found word of mouth did in Silicon Valley: raised awareness of a condition’s traits in a way that made the condition more readily recognizable.

Silberman would never have and never did write as superficially as Nelson’s distillation implies. On autism, he wrote in Neurotribes that it is “a lifelong disability that deserves support, rather than as a disease of children that can be cured.” And he would not have endorsed a perception of autism as a “superpower” with bragging rights. In fact, when he was asked about that very subject, as reported in an essay musing on this question in The Guardian, here’s what Silberman had to say about Greta Thunberg’s self-description of her traits as a “superpower” in “the right circumstances”:

Autism is a disability that can have advantages in the right situation, and with the right support. Greta’s intense focus and disregard for others’ opinions of her are ‘superpowers’ in that they help her ignore the fossil-fuel industry’s lies, take on the facts of climate change, and organise her peers to change the world.

Steve Silberman was acutely aware that environment often defines disability, and what is treated as a downside in some contexts – such as being hyperfocused and disregarding of others’ opinions – can be a strength in very specific environments, such as climate advocacy. This is not romanticization of being autistic. It is a clear understanding of the influence of environment on what constitutes a strength versus a weakness in any of us.

Reading Norton’s mind, part 2

Nelson continues with her reading of Norton’s thoughts by associating his comments with support of the label of “profound autism.” She writes:

Parents of children with profound autism — the subset with high support needs, co-occurring intellectual disability, and often no speech — have spent years arguing that the palatable version of the spectrum is squeezing them out of funding, research, and public sympathy. Norton’s clip lands in exactly that argument.

Note that there’s no mention in the Norton clip of autistic adults with high-support needs or any of the other traits described, even though they exist, “palatable” or not. Note that Norton himself didn’t say anything at all about profound autism. Note that profound autism is a label being pushed by grievance parents who’ve been publicly complaining about – up to and including fantasizing the death of – their children for years. And note, as I show from a full watch of Norton’s remarks below (some quotes edited for filler or repetition), that Norton isn’t even talking about people with high-support needs. What Norton, who is obviously no expert, really seems to be doing is grappling with his own traits and where they might fit in a consideration of diagnostic labels.

This conversation, with a clip that has been dragged so far from its context to be unrecognizable, started with Dax Shepard describing how a recent guest, an expert in ADHD, had asked Shepard if he himself had been tested for the condition.

Shepard, who has dyslexia, goes on to say that he hasn’t been formally diagnosed with ADHD, but:

I am certain he was dead right to ask that question. And so I have really kind of embraced it, and I kind of dig it. I like thinking about the deficits, things I need to work on that are standard for ADHD, and then these super gifts I get from it like improv-ing quickly and all that kind of stuff. Um and so yeah, the dyslexia and the ADHD.

And then Shepard continues with a question for Norton: “It occurred to me, do you think you're neurodivergent at all?”

The two of them then have an exchange that is not unusual for people with certain traits that could fit a diagnosis but who think those traits aren’t intense enough for a label or who resist a label for other reasons. Their discussion also gets at the heart of a tension that’s not new in the world of neurodevelopmental and mental health diagnoses: the casual, sometimes even jokey use of diagnostic terms that seems to make light of the experiences of people who actually have the conditions.

You might have heard someone say, “Oh, I am so OCD about this” or try to haze a peer by calling them “autistic” when they have a social fumble. The entire discussion centers around appropriation of diagnoses that involve real disability and the blurry territory where people seem to pick and choose traits in the moment that serve their purpose. That is not even remotely the same thing as implying that the only truly autistic people are those who manifestly have high-support needs, the @life_with_severe_autism and Thought Catalog framing notwithstanding.

Norton summarizes his own feelings in response to Shepard’s question of whether he is neurodivergent, replying:

Not in a claimable, you know, nameable way.

He goes on to discuss how annoyed he is by what he terms “the romanticization of the idea of being on the spectrum,” mentioning Silicon Valley and people who want to claim being neurodivergent as an explanation for being an “asshole” or “as a superpower” when for a lot of people, “it is a real thing.”

At this point, cohost Monica Padman adds, “I express that opinion a lot,” and Dax Shepard, who has just described himself as someone who likely has ADHD, agrees, too. To be clear, I also am annoyed when grown-ass adults try to use a diagnosis to excuse ugly behavior or to claim only positively perceived, alleged “superpowers” from conditions that are disabling.

The podcast conversation gets into a muddle of ideas, referencing the DSM as not characterizing categories of diagnoses so much as describing patterns of human behavior that become recognizable. Shepard muses that these patterns might serve to predict where people will struggle or succeed even if they don’t need diagnosis-based supports. Norton says that he “tends to agree” and seems to be seeing himself in this description, as he continues:

Yeah, that that's how I would describe myself. I wouldn't even go near calling myself neurodivergent at all.

Norton’s take appears to be that he might relate to or feel that he has some traits related to some form of neurodivergence, but to him, they don’t warrant self-identification as neurodivergent.

Norton then brings up “Love on the Spectrum,” calling it the “most beautiful, wonderful show”:

I love it. I love the celebration of it. I love that while both observing people with real divergence, real conditions, just [seeing] the universality of love, of relationships.

Clearly, Norton is not talking about “profound autism” when he references people in “Love on the Spectrum” as having “real conditions.”

In this conversation, Norton and Shepard discuss their own respective strengths (Norton can instantly recall lines he hears and store them permanently in memory), and those of people they know, such as Finneas Baird O'Connell (aka FINNEAS, brother of Billie Eilish), who Shepard says has an uncanny knack for recalling the specific dates of “mundane” things. Actor Jack McBrayer, cohost Monica Padman adds, can do that, too.

And then they close out talking about also being annoyed when people casually claim positively coded traits related to OCD (“I’m a neat freak!), and they draw a fascinating potential link between people with “hyper-retentive memory” and having OCD. Norton talks about his own immediate auditory retention for what he hears, which has been useful for him as an actor, and how his father has the same trait. Then they discuss how they have to set aside some of these abilities in human interactions when the information they can recall so accurately isn’t as important as the human emotions in play. This is a fascinating and insightful exchange that I, even at my advanced age, found useful.

So this was three people, two of whom recognize certain traits in themselves, one with a diagnosis (dyslexia) who was asked by an expert about being tested for a separate condition (ADHD). They discuss where that shifting threshold can be for experiencing disability, why the term “superpower” is annoying, and when patterns of behavior call for supports or not.

The conversation overall involved Shepard inviting Norton into some self-analysis and Norton resisting a self-label, using as his starting point how some people cherry-pick traits to self-promote or self-defend. His comments were nuanced and sometimes incomplete, which allowed for cherry-picking by those wanting to impose their own framing. As is always the intention when cherries are picked for presentation, we don’t get to see the whole tree — unless we go look for it ourselves.

News you can use

• As the attempted framing of Norton’s comments illustrates, some people are super uncomfortable with disability being visible. The Telegraph, which is uncomfortable with anything that doesn’t celebrate white abled cishet male hegemony (aka patriarchy) is of course extremely uncomfortable with visible disability and expresses this discomfort by framing this visibility as “trendy” rather than real. Social contagion happens, but the ability of people with disabilities to access information and supports more easily than ever before isn’t social contagion — it’s a service. Seeing a TikTok doesn’t immediately lead contagiously to being diagnosed as autistic, but it can point the way to seeking professional assessment and support where it’s needed. Writer and associate comment editor Poppy Coburn at The Telegraph is uncomfortable witnessing this, especially with autistic people and people with Long Covid, but that strikes me as more of a “her” problem. Perhaps she could check in with the patriarchy for guidance.

• Relatedly – per Eric Garcia on BlueSky: “Somehow, it does not feel like a coincidence that a lot of the panic about the autism diagnosis being overly broad or too many people being diagnosed came just as more #ActuallyAutistic women received a diagnosis.”

• People with intellectual disability certainly can experience depression and definitely experience many of the stressors associated with depression, but ableism may keep their mental health needs from being recognized. Autistic clinical social worker Jennifer Cork unpacks these factors in an essay at Psychology Today.

• Movie reviewer Kristen Lopez, who takes a disabled lens to films, writes at The Film Maven on the new Judith Heumann biopic, “Being Heumann”:

  As the movie lays out, before 504 disabled people were often institutionalized, or forced to become burdens to familial caregivers. The people that gravitate towards Heumann's cause are those seeking independence, and a means of living well in a world that's not designed for them.

• Autistic writer and advocate Gregory Tino has a post up at the Autistic Self Advocacy Network on the importance of supported spelling, quite literally, to his life:

  The skeptics say it is dangerous to believe in spelling. I say it is dangerous NOT to. I was able to tell my parents and neurologist about an unwitnessed seizure that I had. I have been able to talk about side effects I have had to meds, or if I had an aura which means a seizure may be coming. I know of others who have notified their doctor of medical issues they had been having. It has saved my mental health. I am so much less anxious and certainly less aggressive. Talking on my keyboard has me feeling in control of my life.

• Autistic people die 13.8 years earlier than the average age for the general population, according to recently published study findings. The authors further found that autistic men and women had similar life expectancies to each other, but that there was a greater gap for autistic women compared to the general population, mostly because of mental health–related factors. Overall, factors involved in the disparity included deaths from influenza, pneumonia, “nontransport” accidents, and accidental drowning. The authors note that many of these causes of “excess mortality” are preventable.

• As we observed in the last newsletter, the new, anti-expert Interagency Autism Coordinating Committee is trying to make “regressive autism” a thing again. Science magazine notes that researchers aren’t jumping up and down with excitement about that, with long-time expert Sally Ozonoff of the MIND Institute saying that regression is hard to pin down, as parents “tend to misremember when their children lost skills.”

• Co-founder and editor Shannon Rosa talks with A.B. King about the evolution of autism research in an interview published at King’s blog site, “The Changing Landscape of Autism Services” (a rare occasion when you will see a Substack link from me). Rosa emphasizes a shift to research that is evidence-based and focused on quality of life, saying: “I think autism research is already headed in a promising direction, and I don’t think there will be any stopping it.”

• There’s a study making its way through the grifter mills about the ketogenic diet being used to “treat” autism. A form of the ketogenic diet has been used effectively for people with severe epilepsy, with close supervision by professional dietitians. Autism isn’t a disease and isn’t epilepsy, however, and highly restrictive diets like this one can cause harm for autistic people who have avoidant and restrictive food intake disorder. When changes in diet do yield an apparent improvement, these changes may have addressed sensory, gastrointestinal, or allergy conditions, which also aren’t autism. For autistic and non-autistic people alike, alleviating these problems makes them feel better, so they act like they feel better.

  The study itself included only 62 children, 31 receiving the diet under only partially controlled conditions and 31 more on their regular diets. Both groups underwent “rehabilitation training” and both groups showed improvements from baseline to 2 months on two measures. Changes from baseline were greater for the ketogenic group, but there’s a catch here. The two groups differed in one key factor at baseline: how long it had been since the autism diagnosis. Despite the apparent randomization for this study, the treatment group had an average of 5.76 months since diagnosis, compared to 16.58 months for the control group. This difference suggests some factor in play that led to children in the treatment group receiving care faster compared to those in the control group. A very common pattern in neurodevelopmental research is to see greater changes from baseline in those who have more intense features or traits at study entry.

People you should know

• Tabika Bowerbank is the “mean mom” fighting for autistic children and their families to access services in Jamaica. Her sense of purpose comes from her experiences with her autistic son, whom she wants to be “the very best version of himself,” she told the Jamaica Observer:

  He taught me that a child who does not speak still has so much to say; a child who does not make eye contact is still listening; that a meltdown is not bad behaviour; that learning differently does not mean not learning at all. Sometimes parents are just asking for access to the same world as everyone else.

• Ian Kelley is an award-winning autistic golfer with some medals to his name and an ambition to train other autistic people in the game as a certified golf coach and leader of his own nonprofit golf academy.

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