Uta Frith made waves in the autism world because of a Q&A she did with TES Magazine. Said waves arose from her headlining claim that the autism spectrum has been stretched so thin that it’s on the brink of collapse.

What’s really on the brink of collapse is her conceptualization of “theory of mind” (in brief, understanding the mental state of another person) as something that autistic people lack. Frith was an author on the 1985 paper that introduced this hypothesis.

Born in Germany, she also translated the papers of Austrian Hans Asperger and brought his writings to a wider world – a world that much later learned that Asperger sent some children to their deaths under the Nazi’s eugenicist program to murder disabled people.

Frith published a book in 1989 and a second edition of that book in 2003 in which she expanded on … ideas she had about autistic people. A PubMed search suggests Frith had no publications related to original research in at least a decade.

Based on her comments in that TES Q&A, Frith appears to be stuck in a box and a past of her own making, one in which a diagnosis separates people into “disordered” and “not disordered.” To be clear, she pathologizes autistic brains, explicitly:

Autism is a neurodevelopmental disorder, which is to say that there is some pathology in the brain existing from birth. Some people object to the word “disorder,” but that’s what I would call it.

But she garbles the logic, describing a spectrum of diverse human behavior but insisting that the subset of people in the autistic range of this spectrum must be medicalized:

We’re all neurodiverse; we can accept this because all our brains are different. But it makes a medical diagnosis completely meaningless.

Autistic people, including and perhaps especially those who are assigned female at birth or come to it late in life, do not find this diagnosis meaningless. Finding that people like you exist is not “meaningless.” Finding that people like you can be understood and accepted, accommodated even, is not meaningless. Her use of “medical” here is telling, as autism is not a medical condition according the National Health Service of the country where she resides. It is a diagnosis that captures the contours of a neurodevelopmental condition, and the shared traits of the people who meet the criteria.

She doesn’t think that people with this diagnosis do share these commonalities, however. In the interview, she says that autism is—

… lifelong, and the main features have to do with distinct problems in social communication and interaction. There is also an additional problem with what’s called repetitive, restrictive behaviours. This can present as narrow interests or sensory issues.

Are you autistic? Raise your hand if none of this applies to you. I bet few to no hands are raised. I have yet to meet an autistic person who doesn’t feel these descriptions to their very bones. Evidence from quite recent, large studies bears this out – even one we side-eyed that defined “four types of autism” from genetic profiles still found that the core autistic traits existed across their putative “types.”

Frith attributes the increase in diagnosis to people whom she describes as “diagnosed much later.”

There are those who are diagnosed earlier and who in her mind are validly diagnosed:

I think at least we have two big subgroups: the people who are diagnosed in early childhood – usually before age three or age five, depending on things like their intellectual abilities and language – and another group, diagnosed much later.

Then there’s the “much later” group. She argues that this pattern supports her claim that the diagnosis is becoming meaningless because:

This population is different. It is made up of a lot of adolescents, and among them, a lot of young women. These are people without intellectual impairment, who are perfectly able to communicate verbally and non-verbally, but who might feel highly anxious in social situations. They are perhaps characterised mainly by a sort of hypersensitivity. That group is increasing at a rate that is just frightening, while the rate of the first group is only moderately increasing. And in autistic children with intellectual disability, there has not been any real increase; that group seems quite stable. Now, I think the people in the second group really do have problems. I would definitely not say they are “making it up.” But I would say that these are problems that can perhaps be treated much better than under the label of “autism.” I would fight for that label to be limited to the first group.

It probably is obvious that generally, people with intellectual disabilities will hit diagnostic radars earlier in life than people without them. Furthermore, there is a history of diagnostic shifts from an intellectual disability diagnosis to an autism diagnosis. But intellectual disability isn’t a criterion for being autistic, although it certainly can accompany it. The rates of people with and without intellectual disability being diagnosed as autistic predictably increased with the growing cultural, social, and clinical recognition of what being autistic really is.

And social anxiety disorder can be diagnosed on its own. Social anxiety isn’t a criterion for being autistic, but autistic people may develop it at higher rates, and adolescence is a key time for that to emerge. Personally, I do not find it “frightening” that more people have access to discovering needed information about themselves, and her characterization of “this group” is nothing like what’s reported in studies of late-diagnosed autistic people.

I’d argue that the “autism” spectrum arises not because of differences in autistic traits but from other factors that also make us human in interaction with being autistic – intellectual disability, actual co-existing medical conditions, different cognitive capacities in different areas, synesthesias, a liking for bubbly drinks and noodle dishes, and more.

Some autistic people are also really funny. Some are not. Some autistic people can’t stand to be touched. Some really like deep touch (if perhaps only by the right people). Some are social. Some are not. All of these traits and inclinations and behaviors interact with the core features of being autistic to make the autism spectrum what it is. At no point on this spectrum is there an autistic person who has dispensed with what actually makes them autistic.

Frith goes on to address the idea of camouflage or what she calls “masking” and its potential role in late diagnoses. She claims that there is no scientific basis for the existence of masking:

The masking idea has no scientific basis, yet everybody, including the researchers and the clinicians, has been enamoured with this idea. It’s understandable, because they listen to the lived experiences of people who say they’ve been masking, that they spend their time imitating what neurotypical people do, and they’re exhausted every day because of this. So, the harm is not the masking, but the exhaustion afterwards. I can’t quite understand that, because exhaustion could arise from lots of other causes. I expect we could say we are all masking, all the time, trying to adapt to our society’s norms. So, from this point of view, I’m very critical of this idea.

Autistic people are alleged to lack empathy, but to me, this framing is devoid of it. She completely tramples lived experience here (and there are also data!). And she seems so badly to pathologize autism that she tries to swipe away the autism factor by once again claiming that, well, anyone can be exhausted by “masking.”

I will just say IYKYK because someone vaguely “trying to adapt to society’s norms” is nothing like “trying to make it through a single exchange with a peer or co-worker without trying to figure out the entire time where to rest your eyeballs.” Also, if we are all masking (neurotypicals, are you all masking? Or just telling “white lies” and doing all those social niceties that involve a disconnect between your words and your vibes?), then isn’t that an argument for addressing the social demands that force this on people, rather than denying the experiences of autistic people who have to work a whole lot harder on it?

Here’s a doozy:

There have always been girls with autism. The ratio was assumed to be four to one, and more recently three to one. In children diagnosed before age 10, this ratio has remained the same over decades. Is there a cultural bias against identifying girls and women as autistic? Have they been unjustly overlooked? I don’t think so. We know, for example, that psychopathy is overwhelmingly male. Do we ask whether psychopathic girls have been overlooked? I haven’t seen anything like that. There are just diseases that are more common in males and diseases that are more common in females.

This recent study conducted in Sweden looks at these patterns and offers this conclusion:

… the male to female ratio for ASD has decreased over time and with increasing age at diagnosis. This male to female ratio may therefore be substantially lower than previously thought, to the extent that, in Sweden, it may no longer be distinguishable by adulthood.

And the authors are motivated to ask a very different question from Frith’s, which is “why [do] girls and women receive diagnoses of ASD later than boys and men?”

In her comments, Frith has teed up a selective set of concepts – masking, sex ratio – that she then knocks down not with evidence but with “I don’t think so” and “I expect we could say.” Recent research begs to differ. Those of us who endured the trauma of going undiagnosed and experienced an endorphin-like flood with that click of recognition also would beg to differ.

Her dismissal of the relevance of late diagnosis gets a similarly flimsy, “gut feeling” defense:

I fear that the way assessments are made now may not be quite right. I get the sense that people are relying too much on detailed interviews that provide a lot of subjective experience, rather than on objective clinical observation. For example, observing the flow of a conversation to spot indicators of poor reciprocal interaction, say, in eye contact or body language. I would guess these are things that are difficult to mask.

There are structured assessments for diagnosing autism in adulthood or in childhood and a whole lotta research addressing diagnosis at specific ages and stages of life. Frith may “get the sense” that practitioners trained in their fields are using detailed interviews rather than objective clinical observation, but unless she cites studies and data to support that assertion or to support that detailed interviews are weaker than “objective clinical observation” presumably made through a “flow of conversation,” there’s no there here. And again: She “would guess” that poor reciprocal interaction would be “difficult to mask.” Why guess when you can just ask autistic people or read the literature?

Frith in general is stuck in a past of her own making and in past evidence. It would appear that there are some schemata in the case that need to be updated, in the way of science, based on new information. Meanwhile, far from a collapse, the spectrum shines on.

News you can use

• The spectrum is not collapsing, and it should not be split. An autistic parent of a high-support autistic child writes about Frith’s comments in her essay, “On the scale of the spectrum,” and quotes from a book by the same name written by Joanna Grace in response to a recent call to establish a category of “severe autism.” From Grace’s book, quoted in the essay as resonant of the parent’s relationship with her son:

  Our shared understanding is like a flowing river. Anyone who claims to have arrived, who plants a flag in the sand and calls it knowledge ends up left behind as the river moves on…. Arguing over who is ahead or behind only drains energy that could be spent swimming.” The important thing is that we keep moving, keep listening, keep learning.

• Last week, we brought you news about competing autism advisory boards, and this week, the news is that the formal, federal version has delayed its meeting. The newly formed, blast-from-the-dangerous-past Interagency Autism Advisory Council (IACC) was supposed to meet in March, but the meeting has been canceled without explanation.
• A new-ish approach for sequencing DNA may lead to the discovery of new DNA sequences associated with autism, according to this press release from UC San Diego.
• The FDA did approve leucovorin, but only for the actual condition that it treats, which isn’t autism but an extremely rare genetic condition called cerebral folate deficiency in the receptor 1 gene, or CFD. That’s in conflict with the FDA’s apparent intentions last fall to slate the drug as a treatment for autistic people, and the decision hasn’t stopped some families from avidly pursuing prescriptions for leucovorin, leading to a shortfall. As with the ivermectin rage during Covid, the upshot could be a lack of availability of the drug for people who really need it, including people undergoing chemotherapy.
• Being online can be a good thing for autistic adults, according to a study published in Autism in Adulthood. The authors write, “online spaces can support meaningful experiences of bodily comfort and human connection for some autistic persons. It also questions the idea that in-person communication is always the best or most real for everyone.”
• The not-uncommon combination of hypermobility disorders and autism may entail worse health outcomes, according to a study published in BMC Medicine. Among the findings: “Autistic participants had more symptoms of [hypermobility disorders] and were more likely to have co-occurring physical and mental health conditions, compared with non-autistic and high autistic trait respondents.”

New from TPGA

Debunking "Profound Autism" and Anti-Neurodiversity With Ember Green — THINKING PERSON'S GUIDE TO AUTISM

Ember Green debunks "profound autism" and anti-neurodiversity, with its cherry-picked numbers, fear-mongering, and speaking over autistics.

“This is about the future of autism care, the way we view our disabled community members, and importantly, who gets to speak.”

Thanks for reading, and keep shining on.

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