Sexual equality works in mysterious ways. Not only must we have equal pay and education, but it seems there must be equality in mental disorders as well. Or so I concluded about 15 years ago, when I started hearing about the large number of autistic females — previously undiagnosed — whose presentation differed markedly from the largely male stereotype, but who somehow had autism too.
This seemed to me quite strange. A condition with no biomarker, diagnosed mainly by the presence of certain distinctive behaviors — significant deficits in communication, rigid patterns of thought, repetitive activities, obsessive interests, and so on — now attributed to a new population on the basis of very different behaviors. The solution to my incomprehension, I was told, was the concept of “masking”. Women and girls were better at hiding their antisocial tendencies, a fact which made them profoundly anxious. Languishing neglected behind deceptively sociable masks, a much larger group could now be members of the club too.
This all sounded suspiciously convenient, tying in with modern fairytales of personal authenticity and the supposed tragedy of hiding “who you really are”. We are all masking things about ourselves; Jung would call it having a persona. And many introverts find social engagements confusing and exhausting. More to the point: if someone is mentally agile enough, both to notice her own social deficits and then seamlessly compensate for them, why are we treating this as autism at all?
This week, my skepticism was boosted by the unusual sight of a scientist debunking a theory she herself helped make famous. For decades, the developmental psychologist Uta Frith endorsed the idea of an autistic spectrum in her celebrated work on the condition. But in a new interview in TES, she says that “the spectrum has collapsed”. Too many people with importantly varying characteristics are being included, and the concept is no longer a useful clinical tool.
That she did not say so earlier in her career was because of “the sensitivity of debates around overdiagnosis”, or so the interviewer reports. In plainer words: if you question the basis of a popular psychological classification like autism, people on the internet will act like you are trying to snatch their souls. Still, the now-retired Frith seems admirably unabashed. She proposes ejecting a large subgroup of people from the autism club: those diagnosed during teens or later, without clear intellectual or communicative impairments, but who exhibit “hypersensitivity” and “feel highly anxious in social situations”. Most of these, perhaps needless to say, are female.
“Languishing neglected behind deceptively sociable masks, a much larger group could now be members of the club too.”
As for masking, Frith says “it has no scientific basis”. She continues: “I expect we could say we are all masking, all the time, trying to adapt to our society’s norms.” What Frith notably does not say is that highly anxious, overwhelmed, or otherwise developmentally malfunctioning teenagers should be abandoned by the therapeutic professions; though based on some hostile responses to the interview, she might as well have done. Her basic point, obvious and unobjectionable, is that it is no good incrementally expanding the category of dogs to the point where it starts to include cats, because doing so won’t end well for either.
The concept of autism started off with a relatively clear set of criteria: the severe, devastating traits which have since been escalated by experts to something called “level 3”. We are talking lifelong social impairment, with little ambiguity in the challenges this presents. Unmistakable problems emerge early on in life as a child obviously fails to reach particular milestones. The issue mostly affects boys, and more occasionally girls. Such children are nonverbal or minimally communicative, prone to violent meltdowns and self-harming from an early age, physically disabled, and stuck in endless loops of compulsive behavior. They cannot change this behavior much, whether by present efforts or future ones. Like the Tourette syndrome of John Davidson, it is very much not the sort of thing that can be masked.
To these children and teens — often sequestered away from society’s judgmental gaze in grossly inadequate care settings, and facing uncertain adult futures — the expansive definition is an outrageous insult. As they can’t get angry about it, I’ll do it on their behalf. The idea that teens who can study for GCSEs, go to the shops, play sport, bunk off school, talk to therapists (etc. etc.) somehow belong in the same category is a cruel joke. These children possess verbal and social aptitudes only dreamt of by the parents of those rocking impenetrably in a corner. If some malicious academic had deliberately wanted to undermine comprehension of the core autistic predicament — to make such cases, already impossible to glamorize, compete unfairly for public attention and resources with more palatable others — they could not have done better than to push the spectrum idea.
Equally, we should hold some online activists accountable for paralyzing the discussion to the detriment of the severely disabled. In letting their own diagnoses get too close to a marketable identity, they leach attention away from those who actually need it, and bully those attempting to disagree with them in good faith. The good news is that Frith appears to be standing up to them. It would be great if she started a trend.
This isn’t to say that the spectrum idea isn’t true. There is an autistic spectrum, just like there is a psychopathy spectrum and psychosis spectrum, though weirdly people don’t seem so keen to identify into those. These things are true in a completely boring sense, which is that for almost any set of cluster of manifestly abnormal human behaviors, it will be possible to find milder versions among a much wider group. Still, it doesn’t yet follow that the wider group has a disability, for there isn’t the same level of impairment.
And here there is another difficulty, for what counts as “impairment” is itself a spectrum — as indeed is “disability”. Most concepts are spectrums, in fact. Do children who present in a way that used to be called Asperger’s — now subsumed into so-called high-functioning part of the spectrum, without a trace of irony — have an impairment? The answer is: it depends on what you take to be the desirable norm. Relative to some standards of social aptitude they may well count as sadly lacking; though equally, in terms of cognitive gifts, they often stand head and shoulders above others. But for autistic children in the original and devastating sense, there are few such comforting nuances to be teased out.
When psychologists severed the connection between autism and unambiguous impairment, they left it unclear why there is a need for society to mitigate the effects of the condition at all. Why should we pay so much attention to people who have “failures of social comprehension”, “rigid forms of thinking”, “repetitive behaviors”, “narrow interests”, “sensory issues”, or any of other descriptions used to identify the wider class? I know people who mentally collapse if they lose their daily routines, endlessly regurgitate facts to politely bored listeners, don’t get jokes, and obsess about certain annoying noises or fabric feels — yet remain serenely unbothered by these trivial facts of personality. Indeed, many of them are highly successful in their careers. It would not occur to them that the very same tendencies are causing others to rethink their whole identities, or to apply for reasonable adjustments from work.
But in any case, as Frith points out, the most recent wave of expansion of the autism industry has been towards conditions emerging in female adolescence, that bear scarcely any similarity to the original archetype at all. This was the great feminization of autism, and it really hasn’t helped. Here, at least, there is often clear impairment: high anxiety, self-harming, emotional dysregulation, frequent school refusal, and so on. Yet equally there are very few signs of autism, in even the classic Asperger’s sense.
Don’t just take it from me — take it from the National Autistic Society, forced to identify “twirling hair and reading books” as examples of suitably repetitive behavior in females for want of anything more convincing. We also learn there that “autistic girls may be more likely to be part of a friendship group and this could be a reason that teachers don’t notice their differences”. Of course, a different explanation might be: they are not autistic in any meaningful sense at all.
And even where they do suddenly exhibit “classic” Asperger’s-like symptoms — or even more severe tics — there is a confounding variable almost impossible to rule out. It’s called the internet: providing clever, magpie-minded girls with lots of encounters with other so-called autistic people, taking great pains to explain how their unique and exciting condition presents. This is not to say that teenagers exposed to this material will deliberately and knowingly feign, but rather that the barrier between behavior and such knowledge is porous — as when you find yourself unconsciously mimicking the accent of someone you are talking to. It is not an explanation you can use for the dysfunctional behavior of very young children. They have no idea what a popular stereotype of autism is, nor why it might sometimes feel tempting to let it into your repertoire.
Faced with a young adult exhibiting high anxiety or other severe emotional dysregulation, a much-neglected question is how a diagnosis will help her, in particular; which is not the same question as how it will help her parents or teachers, or any therapist paid to intervene. A diagnosis of level 3 autism helps the recipient, partly by managing the expectations of others and detaching certain behaviors from the realm of personal responsibility. Put bluntly: this person literally can’t help it, nor will he probably ever be able to help it. With Tourette’s too, properly understood, we get the correct inference: there is a bank of words and other noises coming out of the sufferer’s mouth, for which he is not responsible at all.
Yet transferred to teens with the possibility of meaningful behavioral change in their future, this is an atrocious message to send. It encourages a still-developing, inquisitive mind to start thinking of herself as a set of permanent neuroses for which she should be pitied and excused. It distracts her from the fact there are positive things she can do to change the situation — maybe not immediately, but definitely over time. Most minds are flexible, and that is their beauty; teenage minds especially so. “I can’t help it” may be literally true on day one of a new regime; but by day 100, she might be in a different place.
What the route to meaningful change looks like is a matter of professional contention, but there is no doubt they exist: good habits of mind and body to adopt, and other unhelpful ones to relinquish. Speaking as a formerly highly dysregulated teenager myself, I would say they include books to read, to give deeper understanding of human nature; social situations to force yourself into, to get lots of practice; fears to face, in order to better acclimatize; and screens to throw into the sea.
But that’s just my idea, and you will have yours. The point is that a happy, flourishing, independent life in future is still possible for nearly all of these hypersensitive girls; perhaps even likely, once the hormones and spiteful jostling for status amongst schoolmates have settled down. An official diagnosis — potentially feeding into school notes, university counseling services, reasonable adjustments at work, PIP payments, and eventually one’s entire sense of self as a person helplessly mired in dysfunction — says the opposite.
