The Inquiry finds that there had been obvious signs of danger for several years prior to the attack. When he was 13, Rudakubana’s school had noted his unhealthy obsession with violence. He confided to Childline that he wanted to kill a schoolmate and that he had taken a knife into school for this purpose. Schools, Children’s Services, the Child and Adolescent Mental Health Service (CAMHS), Child and Youth Justice, the Police — all had fragments of information. But somehow, this never formed a complete picture. No one agency realized just how dangerous Rudakubana had become, and none, therefore, took the required action. Alongside more localized recommendations for individual agencies, Fulford finds a need for greater inter-agency cooperation and information sharing.

Alongside this, though, the Inquiry also places significant related blame at the door of Rudakubana’s parents, especially his father, for a “combative and unhelpful attitude”. The agencies’ failure to intervene more effectively, Fulford concludes, is partly down to how hard the parents made that job. The parents “sought to avoid, rather than engage with, the statutory services that were available to them”, and were “deliberately selective” which agencies they shared information with. They “refused to take legitimate professional concerns seriously”. They “wanted to try to control the narrative”, sometimes “trying to turn professionals against each other” for this purpose. The parents, Fulford argues, should have “trusted” the agencies, and empowered said agencies to control their son’s case.

It is at this point that Fulford’s narrative begins to seriously trouble me, as I’m sure it will many parents of autistic children. Rudakubana is autistic. And as a parent of (non-violent) autistic children myself, I have also (variously) either done, or been falsely recorded as doing, each of the above things that Fulford castigates the parents for, in one form or another. So too have thousands upon thousands of others. And we have had good reason. If Rudakubana’s parents didn’t see fit to “trust” the agencies — if they felt it was often better to selectively withhold information, if they drew on what some agencies had said to put pressure on the accounts of other agencies — well, in general terms, that all sounds exceptionally reasonable to me. We need to talk about trustworthiness.

Suggested Reading

The shaming of SEND families

By Steve Boggan

So let’s back up a little. Autism is not especially rare; while it’s hard to estimate actual prevalence, it’s plausibly something like 5% of the population. What is it like to be a parent of an autistic child in England today?

Well, it’s a lot of things, several of which might cast interesting additional perspectives on the Fulford report. But I want to single out one in particular. While parenting an autistic child also has its more intrinsic challenges, for many of us, by far the most stressful aspects arise from interactions with schools and public services. Not only do many of these services fundamentally fail to understand autism — crucially, they also fail to acknowledge that they don’t understand autism. In particular, it is routine for public agencies to throw honesty, integrity, balance and ordinary epistemic standards completely out of the window when dealing with autistic children and their parents. The results for families are devastating.

The following scenario is pretty typical. (Honestly: the scenario itself is fictional, but I’ve constructed it largely from a collage of actual cases.) Meet Ben. Ben is an intelligent, articulate eight-year-old. He is also autistic, though perhaps not yet formally “diagnosed” as such. Things have mostly seemed fine for Ben so far, but in the last couple of months, the wheels have started to come off as regards school. Ben is increasingly reluctant to go. When his parents do manage to get him there, he clams up. It’s hard for his teachers to get him to enter the classroom.

What’s actually going on is that Ben, like so many other autistic children before and after him, finds the mainstream school environment overwhelming. For him, it’s a perfect storm of social complexity, unclear expectations, sensory overwhelm, unpredictability. The rough equivalent for a neurotypical child would be an environment in which they were poked all over at one-second intervals with needles, while blasted with loud music, while told to stand on one leg and correctly discriminate between jokes that are funny and those that are unfunny by someone else’s standards, on pain of ridicule. Now, at the same time — and with the other hand please — write a one-page news report from the point of view of a penguin visiting your school for a day. Detention if I don’t like what you write.

Ben simply can’t do it any more. The whole place terrifies and bewilders him. It feels dangerous. His mouth goes dry and he gets stabbing chest pains at the very thought of it. Ben desperately needs the adults around him to understand this.

This is not the way the school sees things, however. In their version of the story, Ben is being stubborn and disobedient, and making bad choices. He needs to learn that he can’t always just do what he feels like, and that ignoring instructions from adults is unacceptable. The solution is to be more strict with him; there need to be consequences for noncompliance. And since there’s clearly nothing wrong with the school, the cause of all this must be parenting deficiencies.

Slightly taken aback by the suggestion but knowing that they have nothing to hide, Ben’s parents accept that a social worker is to visit their home. But the social worker already knows, going in, what her answer must be. The home environment and the parenting style are picked apart. It doesn’t look like a neurotypical household! The social worker gives the parents the lists of changes they need to make, copy-pasted out of Parenting 101.

The next part of the story has two versions; choose your own adventure. In the first, the parents humbly agree that they have been doing it all wrong, and follow the social worker’s advice. Then Ben really loses it. It turns out that all those little adaptations to his individual needs that his parents had made at home over the years, by experimentation and parental intuition, had made the home his safe haven, his one fixed point in an otherwise bewildering world. In the second version, Ben’s parents are wise to this; they politely but assertively explain to the social worker what traditional parenting methods are often contraindicated for autistic children, and that what they are already doing works for their family. Bad move: the social worker adds to her file the especially damning fact that the parents are difficult, that they refuse to accept “professional” guidance. Never mind that the professionals in question are not autism professionals — or the fact that actual autism professionals would generally back up the parents’ account.

Either way, the social worker goes away with her notes. The parents are neglectful, the home life is chaotic and lacking in boundaries, and the parents are either unable or unwilling to implement the required improvements. Ben’s parents receive a letter from Children’s Services. “We have been informed that you are placing barriers in the way of your child’s education.” Statutory social service intervention in the family is now under consideration.

Ben himself, though unaware of the story developing behind the scenes, spirals further into crippling anxiety, as the school pursues exactly the wrong response to his neurotype. Ben’s parents are meanwhile steadily going out of their minds with worry, both about Ben’s immediate plight and about being referred to social services. His dad loses his job at his next review, no longer able to perform effectively while all this is occupying his headspace. This is the agencies’ “support” for Ben and his family.

Such anecdotes became loud and frequent enough that NHS England commissioned West Midlands ADASS, an association of social care professionals, to investigate. The result was a 2024 report: “Blamed instead of helped: How parents of autistic children experience parental blame when they approach services for support.” The investigation found that 86% of parents experienced “parent blame” after seeking support for their autistic child along roughly the lines of the above.

“Having been placed on Child Protection, I felt the immense injustice in this,” the report quotes one parent as saying; “[t]hey ripped apart every facet of my life in the CP reports. It was a manuscript of grotesque lies, misinterpretations, and invasions.” “Coping with the blame and having to defend ourselves from false accusations has led to a delay in our ability to get the right help,” writes another. “Discriminated against because Health [service] lied to cover up their own negligence which has been utterly horrific and traumatizing,” relates a third. Parents report the development of complex PTSD, nervous breakdown and relationship breakdown. Some families choose to withdraw their child from formal education, or to move overseas, to escape.

I found out about this because I am part of this 86%. A while back, I spent a few months liaising with my son’s school and local authority, in a quest for appropriate support for his education. While the lack of autism awareness was blatant, the “parent blame” in my own case was applied more subtly, primarily in agency documents that I was never meant to see. I happened to obtain these documents via Subject Access Request, some time later. Reading those documents (and re-reading them, as I really should stop doing) transports me into an alternative reality. “A manuscript of grotesque lies, misinterpretations and invasions” is a pretty accurate description. In addition to the list of alleged safeguarding concerns, I was surprised to read in the official records that, just like Rudakubana’s parents, I too have apparently refused to acknowledge or discuss numerous legitimate concerns from professionals — concerns whose existence, in my case, nobody ever mentioned to me. I was surprised to read that I too have denied relevant professionals appropriate access to support my child — access that they never asked for, for “support” that they never offered. I’m officially considered a “safeguarding” risk to my child; my family is now “known to social services”, and will be forevermore.

My first reaction to all this was shock and disbelief — then anger, disgust, irrational shame, a raging sense of injustice, everything mixed together. I haven’t slept properly for several months now, since receiving that SAR. The words keep going round in my head in the small hours. I’m hypervigilant now at the school drop-off, always wondering what crime I might be committing today that could tip us over the edge into a formal safeguarding referral. I’m wise now to how things can be distorted, once the school has decided on an uncharitable interpretation of a particular family. Somebody wiped their mouth on their sleeve? “Children’s clothes are routinely soiled.” One of my children runs ahead to join her friend? “Parents have been observed not to exercise adequate supervision for ensuring children’s safety.” A child has a meltdown on the way in? God forbid. I’m on anxiety medication now for the first time in my life. Still, looking at the stories in the West Midlands ADASS report, I guess I am one of the lucky ones.

Suggested Reading

The invisibility of autistic girls

By Clara Törnvall

Returning to the Southport Inquiry, all this raises two questions for me. First: while the Southport Inquiry did allow a voice to Rudakubana’s parents, it draws very heavily on agency accounts. Such agencies are known to have widespread practices of misinterpretation, distortion and outright lying in their narratives about parents of struggling autistic children. I am not in general a cynical person but I do wonder: how much credence, exactly, should we give to the Inquiry’s narrative about the parents?

But even if Fulford’s own conclusions about Rudakubana’s parents are fair and accurate as far as they go — the second, more important, thing is that there is a further question. Let us grant, at least for the sake of argument, that Rudakubana’s parents were somewhat (or very) uncooperative with agencies, that they sometimes sought to avoid agency involvement, that they were selective in information sharing, and so on. Let us also grant that these things contributed to the tragic events of 29 July 2024. The further question is: why did the parents behave in those ways, insofar as they did? And just how unreasonable were they to do so?

Well, I don’t know. But in light of the above, a rather obvious speculative answer does suggest itself. If Rudakubana’s parents started out fully trusting and cooperative, but withdrew much of that trust as a direct result of their agency interactions, they would be far from alone. In the West Midlands ADASS investigation, 73% of parents surveyed report doing the same thing; I myself have done the same thing.

Seeking to avoid the “services” that are available to me, and being deliberately selective about which ones to share information with? Absolutely; I’d have to be mad not to. I know now that I have to be careful in picking the services that understand neurodivergence and actually provide useful support, and to avoid the parent-blamers like the plague. A desire to reclaim some control over the narrative? If the official narrative says that my child is stubbornly choosing to miss out on his education as a result of lack of boundaries in the home, yes please, some opportunity to correct that narrative would be nice. Trying to turn professionals against one another? Well, if that means things like paying a psychologist to write a letter saying the same things that I’ve been trying to tell the school about what my child does and doesn’t need, then tick, I’ve done that. Do I trust the school, after all this, not to manipulate the information they record? You must be kidding.

Over the centuries, we have made enormous progress toward the ideal of having the right institutions in place for effective cooperation where it is needed, and ensuring the warranted trust that allows those institutions to be effective. But gaps remain, and we must recognize them. And where we find them, it is our responsibility, as a society, to fix them. Trust has to be earned. Support for autistic children is one such gap.

This is not to exonerate the parents in the Southport case. There are obviously differences between Rudakubana’s case and that of a non-violent child who merely struggles to access education. But if, as Sir Fulford concludes, the parents’ lack of trust in the agencies contributed to the tragedy of 29 July 2024, and if in addition, as I have speculated, the parents’ lack of trust might have been entirely warranted — well, it does bear some thought.

The whole episode opens an extraordinary window onto a rare form of life: the schizotypal creative genius.

There are two types of highly successful people in the world: autists and schizos — that is, individuals who find success with autistic traits, and those who find success with schizotypal traits — and much of public life is a secret war between them. To be precise, autistic and schizotypal traits are moderately correlated so often this is a war within the schizo-autist elite. Depending on which side is stronger, individuals  gravitate toward a different domain and use radically different strategies. And each wants to shape public culture in a way that glorifies its  strengths — and plays down the significance of its weaknesses.

One side is winning. If you follow the most fashionable “thought leaders” today — especially entrepreneurs, venture capitalists, and pop academics — you’ve probably heard the observation that the most successful and busy people reply to emails faster than less busy people. A certain type of person just loves this fact: Sam Altman, Eric Schmidt, and the aforementioned Cowen all find this talking point enchanting. These are the autists, whose STEM-friendly skills have been elevated in value by the digitalization of the economy, and who are easily able to propagandize their traits via digital media. Autism has never enjoyed so much clout as it does today, relative to the romance of schizophrenia.

This is why l’affair DeWitt was D-Day for the world’s schizo-intellectual class. The writer represents the maligned schizo-elite, the unsung schizo-geniuses, and even the downright wannabes. Her maneuver is a glorious vindication of all the brilliant and sensitive souls whose strengths do not lie in punctiliousness. Helen DeWitt is our General Custer, and this is our Last Stand against the Autistic Elite.

Research on autism-spectrum and schizotypal traits shows two cognitive styles diametrically opposed on certain dimensions. Autistic-like traits suit structured, detail-oriented, rule-based domains. Positive schizotypal traits suit open-ended, imaginative, pattern-associating creative pursuits. One meta-analytic review reports a positive relation between positive schizotypy and creativity. Poets and visual artists show levels of “unusual experiences” — perceptual aberrations, magical thinking, and mild hallucinations — as high as schizophrenia patients, and significantly higher than mathematicians. On the autism side, one large study found higher autistic-trait scores among people in STEM careers.

More from this author

Am I allowed to hate fatherhood?

By Justin Murphy

Moderate autism can be an advantage for staying on top of large volumes of structured information — rules, protocols, inboxes, codebases, spreadsheets. Strong systemizing and detail-oriented processing helps with quick rule-based decisions and switching between bounded tasks without much emotional friction. An email is just a short, discrete object to be classified and dispatched. 

Moderate schizotypy, by contrast, can be an advantage for artists because reduced latent inhibition means that stimuli other people filter out feel meaningful; trains of thought branch and interconnect more naturally. Because more things have emotional valence, what is administratively trivial for the autist is more taxing and risky for the schizo. Every email is a portal into complicated emotional territory that will need to be traversed, and that traversal might displace a whole day’s work.

DeWitt has been open about her long history of breakdowns and suicide attempts, each tied to the publishing industry’s interference with her work, and has described putting what amount to suicide clauses in her contracts. In an interview with The Believer, she said: “I put clauses in my contracts, and I explain: this clause stands between me and suicide, don’t sign this contract if you are not going to comply with it — and they laugh.” The publishing system is “committed to the disempowerment of the author at every single stage”, she says with apophenic flair (the pattern may or may not be real, but this is characteristically schizoid language). The April blog post that reports the saga is itself a schizoid object, a raw cut-and-paste of email threads in stray fonts and chaotic formatting, accented with uncut personal narrative.

As DeWitt explains it, on 12 February, 2026, she was told by phone that she had won the Windham-Campbell Prize, one of the grandest literary awards in the world, designed explicitly to give an exceptional writer free time with the fewest possible strings attached. Writers can’t apply; nominations are solicited secretly. Initially, DeWitt was thrilled. But there were just a few requirements: the prize asked for one video, to be shot over six to eight hours by a professional crew at her home or at a local studio; plus one podcast; one contribution to The Yale Review; and attendance at a six-day festival.

DeWitt writes in her blog post that she had just emerged from years of chaos surrounding the publication of Your Name Here, her 2025 metafictional masterpiece about an artist dealing with the hostile publishing world. At the moment of the call, she was in a reader-lent apartment in Amsterdam deliberately chosen for its lack of wifi, and had only a low-data SIM card in her phone. Thus cut off from the world, at last, she could write. Answering the prize committee meant roaming Amsterdam in search of a free wifi signal, and the “minor strings” soon became — to a schizotypal mind — a blizzard of emails, logistics, Google forms and irritation. Over two weeks, DeWitt tried to negotiate with the prize committee, but the core demands remained mandatory. On 24 February, she formally declined: “If I simply stop now I can use the whole of 2026 and 2027 for writing without interruption; after the last few years, I desperately need this.”

Some will think that DeWitt is a prima donna, others that she is a madwoman. But it turns out that there is a real tradeoff between artistic accomplishment and the rational functionalism required by the powers and principalities of this world.

What DeWitt helps us see is that she really can’t give interviews, do phone calls, or reply to emails — or anything else at all — because any functional requirement in the world competes for the scarce mental space she needs to do her work at the level she aims to do it. Once disturbed, the schizoid mind loses control of the downstream routines most people handle on autopilot. As she wrote to the prize committee, “a flood of words coming in at the ear displaces voices, structure, paradigms, game analysis, the work taking shape in the head…. if I keep pushing to deal with practicalities while the mind is in this state, the next stage is losing passport, cards, keys. Finding myself locked out in the street with no way to contact anyone who could help.”

What looks to outside observers like a small number of simple requirements is, in the mind of a schizotypal novelist of serious ambition, genuinely and impossibly onerous. Each media obligation involves emails and phone calls, which themselves, in our day and age, require a bewildering series of digital steps and interfaces. Each email and phone call — including the emails and phone calls to schedule the emails and phone calls — involves specific questions that need to be decided. For the schizo-genius, one minor requirement is, in fact, an immediately self-expanding surface of taxing mental processes. What’s so remarkable and beautiful about this particular saga is that DeWitt is not telling us about the schizo-genius’s plight; rather, she is demonstrating it in real time.

Most of the internet reaction has understood the issue to be ideological. DeWitt’s critics wrote her off as ungrateful or insane — receiving a huge prize, scoffed one, is “a very odd thing to be complaining about”, Her supporters see the situation as an indictment of the “hyper-professionalism … that privileges self-promotional skill over actual literary work.”

I would argue, instead, that DeWitt’s reasoning isn’t merely sensible, but rational and elite to the highest degree. We simply struggle to appreciate it today because the schizotypal are now relatively underrepresented in high-status conversations after years of economic and cultural adjustment in favor of the autistic.

Artistic success obeys a power-law distribution — a statistical pattern found throughout the creative arts in which outcomes are radically unequal, so that a minuscule fraction of the talent produces almost all of the most significant work. The distribution is “heavy-tailed”: there are many forgettable works, a few competent ones, and an infinitesimal number of masterpieces, but those masterpieces account for almost all of the lasting cultural value. In other words, the gap in value between a masterpiece and a merely competent novel is of far greater magnitude than the gap between a competent novel and a bad one. This implies that returns to quality are convex at the top of the distribution. For the most successful artists competing for the highest levels of greatness, each marginal unit of effort, craft, or vision yields increasing returns. Thus, the more talented you are, the more extreme you should be about avoiding everything that is not the concentrated application of your distinguishing talent. A small concession to distraction can mean the difference between finishing a masterpiece and producing something merely competent, or never finishing at all. Not to mention, six hours of filming isn’t really six hours, but six hours plus weeks of emails and mental preparation, plus the comedown afterward and some not-improbable collapse.

More from this author

Can indie novels save our minds?

By Matthew Gasda

DeWitt’s novel The Last Samurai, published in 2000, is considered by some to be the greatest novel of the 21st century. Weighed against the chance to produce something even better, $175,000 isn’t as much as it seems. For someone who knows she is capable of producing world-class work, it is absolutely necessary that she secure the most complete concentration possible.

In her emails to the prize committee, DeWitt mentioned in passing that she was in good company. Emily Dickinson didn’t leave the family property for two decades. Proust sealed himself in a cork-lined bedroom. Pynchon has never granted a single interview in more than 60 years. Cormac McCarthy famously turned down paid speaking engagements while he and his wife lived off beans. These people made a decision that they were going to cultivate their creative work as their top priority, and then they ignored every other requirement of human life that they could possibly get away with. They let all other skills and capacities atrophy to as close to zero degree as they could survive. That’s presumably one of the major reasons they were capable of achieving greatness.

The requirements of the awards committee were reasonable. It makes sense that the Windham-Campbell prize would require some minimum of promotion to sustain the program. But it’s also reasonable that DeWitt could not meet even those modest demands. In fact, it is only because she is so absurdly, militantly protective of her mental space that this rewarding body decided to give her the prize.

Both parties are obeying their nature, and this is why our official institutions, governed increasingly by the autist type, increasingly struggle to absorb, support, or participate in the most brilliant and interesting cultural tendencies today. Even when the institutional mindset is lucky enough to recognize creative genius, even when it offers the most generous possible terms to support it, in a world in which a tiny fraction of output carries the overwhelming share of lasting value, there is often just no workable agreement between schizo-romance and autist-functionalism. 

Perhaps only the internet can sustain a stable commerce between the two.

The schizos are learning how to advance themselves online. X (formerly Twitter) in particular is the ecosystem where the type thrives. It is no accident that the word “schizo” was popularized there in recent years, proudly, as a self-description. DeWitt’s blog dump, and the X thread that spread it, are characteristic. Bypass the editors entirely, and hand the raw material to the reader. By rejecting $175,000 in favor of peace and quiet, Helen DeWitt has done more, for more people, than she ever could have imagined. She has proved to the world that to become a successful genius, you don’t necessarily have to answer your emails quickly. You don’t even need to know that Amsterdam has Starbucks with free wifi. All you need to do is the work, at any cost.

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.

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.

More from this author

Why scientists should read more poetry

By Kathleen Stock

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.

Suggested reading

Why do so many students have ADHD?

By Paul Sagar

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.

Every year, more essays come in after the deadlines, because more students get extensions lasting weeks, even months. On Mondays I receive automated emails reminding me to be very careful when asking certain students questions in seminars, or expecting them to contribute in any way (apparently, they might not be able to handle it if I do). Despite the fact that I teach political philosophy — a subject impossible to execute without precise handling of language — the university bureaucracy says that the quality of written language needs to be disregarded when assessing some candidates’ coursework. All of this, and more, is due to accommodations made under the rubric of disability.

Last month, eye-opening statistics were published in this regard. From 2008 to 2023, the proportion of students at UK universities claiming to have a disability doubled from 8 to 16%. Even more strikingly, at Oxford and Cambridge it went from 5 to 20%. And the UK is not alone. As recently noted in The Atlantic, 38% of undergraduates at Stanford are now registered as having a disability. Lagging behind is Harvard, at “only” 21%. (Both were at 5% in 2009.) It’s the same across all developed Western democracies.

This explosion has not been driven by campuses suddenly becoming wheelchair accessible. (I happen to be a wheelchair user myself, and so I assure you that I take disability very seriously.) Instead, students are being diagnosed with impairment disorders relating to their ability to learn. And of these, four constitute the bulk: attention deficit and hyperactivity disorder (ADHD), anxiety, depression, and non-profound autism spectrum disorder (ASD).

So what is going on? The truth is, it’s complicated. And as a result, two of the most common answers just won’t do.

The first answer (which The Atlantic reporting leans towards) is that it’s basically all a scam. Here’s the thing: students with registered disabilities are eligible for deadline extensions, extra time during exams, and a whole raft of entitlements regarding seminar attendance and participation. Having realized that students with impairment diagnoses get such special consideration, sharp-elbowed middle-class parents reckon it is a sure-fire way to win their offspring competitive advantage. Shopping around for helpful diagnoses from pliant physicians, the aspirational classes respond to prevailing incentives. Cue the surge in presentation of the disorders.

To be fair, The Atlantic’s assessment isn’t completely wrong. Sometimes the lengths to which privileged parents will go for their kids are truly astonishing, especially in the United States. (Just Google “Varsity Blues College Admissions Scandal”.) Perhaps, then, we shouldn’t be entirely surprised to learn that the proportion of students entitled to extra time on exams has gone up significantly at UK private schools compared to the state sector.

Suggested reading

Self-diagnosis is driving teens mad

By Lily Hamson

I’m afraid, though, there is more afoot here than cynical families gaming the system — which certainly some will be. But let’s not forget that humans are complicated, fallible things and they have a peculiar predilection for seeking out evidence that confirms their pre-supposed conclusions. It is not that middle-class parents are pretending that their sons and daughters have these disorders. If their children are presenting as anxious and depressed and socially complicated, then they will really believe that their sons and daughters have ADHD and anxiety — these conditions have, after all, been confirmed by the professionals. Partly the reason they are more readily open to believing this is because the conditions no longer carry the heavy stigma they did in the past, when children would be institutionalized rather than sent to university. Rather than being a straightforward, limiting disability, the diagnosis now represents an opportunity: not just for extra time on exams, but also for handy legitimation and excuse-making if Junior comes up short (never mind extra bragging rights if he comes out on top). So while it is true that the middle classes have been responding to incentives, those incentives are more subtle and complex than simply trying to game the system.

For precisely these sorts of reasons, the other (and largely opposed) popular explanation for the increase in cases is also too simplistic: that rates of diagnosis have massively increased because medical professionals are now better at spotting underlying conditions which previously went unrecognized. While certainly the case in some instances, this cannot account for such massive increases.

To be clear, studies using consistent criteria of symptoms have found no increase in the incidence of those, even as diagnoses of ADHD and autism have simultaneously gone up dramatically. In short, people who would not have been diagnosed with those conditions 20 years ago are much more likely to be diagnosed with them today, even if presenting with the exact same symptoms. The threshold has moved. In the past, the level of symptoms required to trigger a diagnosis of something like ADHD or autism were higher than today.

So have doctors, psychiatrists, and other professionals become sloppy? Are they failing to properly apply the right diagnostic criteria? Is this a case of uncontrolled Nail Derangement Syndrome (to those possessed of hammers, etc.)? Have the forces of middle-class ambition and medical over-reach manifestly combined, to feed off each other? But again, this is too simple.

To understand the complexity of the issue, it is helpful to consider the work of the philosopher of science Ian Hacking, who spent much of his life trying to untangle this sort of thing. One of the most important lessons that Hacking taught us is that when it comes to medical diagnoses with behavioral aspects, humans are “moving targets”. This is because of what he termed “looping effects”: that when people receive a label, they respond to it by changing their behavior accordingly. But because their behavior has now changed, the label itself must evolve to capture the very thing purportedly being labeled. This then sets off new kinds of behavior in those receiving the label — and thus the looping continues.

Hacking’s work on autism helps to illustrate the point. When autism was first established as a diagnostic criteria in the Forties, it applied only to the severely mentally impaired — typically those who were non-verbal and highly socially dysfunctional (they were unable to live without extensive support provided by parents and professional carers; many were institutionalized). Over time, however, the criteria were relaxed, in particular the (controversial) introduction of Asperger’s syndrome in the Eighties, which applied to “high functioning” autistic people especially: those who were not only fully verbal, and often living independently, but crucially were diagnosed as adults (previously autism was something identified almost exclusively during childhood, precisely because it was so severe).

More from this author

I changed my mind about killing myself

By Paul Sagar

Yet this expansion of autistic criteria and the birth of the idea that autism is a spectrum, rather than a single category of psychological impairment, inevitably set off looping effects. An Asperger’s diagnosis, for example, changed not only the way certain kinds of adults (i.e. those receiving the diagnosis) viewed themselves, but how they behaved. Rather than being shamed and shunned for being “weird” (the fate of earlier generations), they could now (justifiably) protest that they were simply different, as validated by science, and deserving of relevant accommodations. Indeed, many advocated for precisely this distinction, refusing to suppress their non-typical behaviors simply to accommodate “normal” people. (This is one important origin of the modern distinction between the “neurotypical” and the “neurodivergent”.) Such a development has quite clearly benefited, in real and important ways, many people, allowing them to access better resources in a world of reduced stigma.

Yet, as the criteria was relaxed, more and more adults started to see themselves as possessing features enveloped within the ever-growing “autistic spectrum”. Ever-growing, because the spectrum diagnostics kept changing to incorporate and accommodate the growing range of correlated symptoms. Which led to more people meeting the criteria, and so on.

This itself is an oversimplification. But it is a large part of why we now have an “autism spectrum disorder” so broad that I can have students medically diagnosed as autistic, and yet who have rich social lives, romantic partners, and no problem understanding (and sometimes even laughing at) my terrible jokes in lectures. Autism today means something radically different from what it did in the Forties, or even the Eighties. The looping effect has moved the targets.

But that’s not the end of the story. There is, also, an interconnected phenomenon, which Hacking called “making up people”. His point is that there are certain ways to be a person that require a pre-existing social infrastructure to first be in place.

I can illustrate by taking the example of a skater. The casual reader might think that this is simply somebody who rides around on a skateboard. But there’s much more to it than that. To be a skater is to identify — and be shaped by — a certain subculture. When I was a teenager, riding around on skateboards was almost a secondary feature of being a skater. Arguably more important were things like listening to punk music, wearing baggy jeans, smoking weed, and rejecting authority. We were outsiders and liked it. We were consciously anti-cool. But, then, everything shifted. The X Games aired on TV and Tony Hawk became a household name with his PlayStation game (owned by everybody, including the non-skater kids at school who used to bully us skaters). As a result, what it meant to be a skater evolved: it went mainstream and became sort of socially acceptable, which radically changed what it was. The looping effect kicked in. Now when I go to the local park, I see men in their thirties happily grinding the rails alongside schoolchildren. Not a single mohawk in sight. Nobody is even smoking weed. Being a skater ain’t what it used to be.

The point is, being “a skater” was only possible not just after the boards were invented, but after skateboarding became affiliated with a type of youth counterculture, itself evolving over the decades.

On Hacking’s account, the same is true of “high functioning autism”. While it is certainly true that there have always been people possessed of literal mindedness, a fixation with niche interests, difficulty relating emotionally with other people, finding it hard to read social cues and so on, it was only roughly 40 years ago — when it was diagnosed as a medically recognized thing — that you could identify as a “high functioning autistic”. It became a social role that people could inhabit. And which they could eventually expect others to recognize and accept.

The modern explosion in ADHD diagnoses, then, can be understood in pretty much the same way. When I was an undergraduate in the mid-2000s, ADHD was something the naughty kids who failed at school all had. As a consequence, back then it was almost impossible to imagine an Oxford PPE-ist with ADHD. The social infrastructure required to conceive of an academically high-achieving student with such symptoms was not yet in place. Now it is. This in part explains the striking changes of recent years: we have been “making up” new kinds of people.

I don’t think we got it “right” back in the 2000s, and that since then everything has been going to the dogs. Some things are definitely better than they used to be. As somebody who has battled with clinical depression his entire adult life, I much prefer the open acceptance of mental health that is a feature of universities today, as compared with the world I grew up in. But we can still usefully ask: are we making the most effective use of our resources?

I’m doubtful. For a start, the increase in diagnoses has not translated into effective help for those who need it most. A few years ago, I had a student diagnosed with a form of autism which impaired her life in serious and very evident ways. She was fully aware of the things she needed to do to mitigate the very real disadvantages her condition generated. But she had to battle for every scrap of support she could get because she was competing with dozens and dozens of other students, who on paper were entitled to the same levels of disability support, but that no reasonable person would put in the same bracket.

More generally, there is the question of whether widespread special learning accommodations are hindering rather than helping our students. University administrators love to bang on about imparting “transferable skills” to undergraduates. What they normally mean is nebulous guff such as “communication”, “leadership” or “problem-solving”.  By contrast, here are some real transferable skills: turning up on time, meeting deadlines, having to manage multiple tasks at once, dealing with intellectual discomfort, pushing through and completing something even if you find it boring, difficult, or unpleasant. In short: learning when you have to suck it up and grind on, because sometimes that’s just how life goes.

And yet diagnoses like ADHD, anxiety, depression, and ASD — and the attendant accommodations put in place — allow students to avoid having to learn these difficult life skills. Nor can we lecturers hope to impart the importance of short-term toil for long-term reward: tough love and all that. Who are we, after all, to contradict medical diagnoses, not least when vast university bureaucracies are now structured to uphold and defer to such things?

There’s no small irony to all this. Measures originally undertaken with the good intention of helping students may be doing the very opposite. The road to hell, and all that. It’s time to loop some different effects, make up some new kinds of people.

Kaufman chose the MDD diagnosis over other forms of depression because it sounded more enduring and less likely to be caused by something specific, which tracked with her feelings. She was only in the eighth grade, but decided she was doomed forever. Her behavior reflects a larger trend of teens diagnosing themselves with psychiatric conditions, using information gleaned from friends with official diagnoses, or from the internet, and therapists on TikTok. 

Young people are sometimes using “these digital platforms as a substitute for mental health treatment,” according to a Canadian study published in the journal Acta Psychologica. Moreover, the study found that “the overwhelming majority of TikTok videos on mental health are not created by professionals, and most contain misleading information.” 

Kaufman would spend the next three years fighting with her parents, smoking weed, vaping, and getting involved with sketchy older guys. At the time, these behaviors seemed like symptoms of her mental illness. But looking back, now 21 and happy, Kaufman thinks they were just symptomatic of being a teenager. 

We worked a retail job together in 2022 at the infamous one-size-fits-all clothing store Brandy Melville, often commiserating over a can of Diet Coke. I thought she was the “cool coworker” because of her vaguely apathetic aura, platinum-blonde hair and affinity for sad music. At the time, I had a raging eating disorder and thought of the 1990s Kate Moss as my personal Jesus — a delusion fueled by my employment at the shamelessly body-type-exclusionary store. (The “one” size is extra-small.) 

Suggested reading

Mental illness doesn't make you special

By Freddie deBoer

Compared to what’s happening today, Kaufman’s form of self-diagnosis was low-tech. In 2018, Kaufman relied on WebMD and Mayo Clinic articles. Now, mental-health influencers are rampant on TikTok, and social media are rife with infographics listing symptoms of OCD, autism, and everything in between. The trend started during the pandemic, with content creators offering users easily accessible resources for therapy. But the result has been to flood young people with potential diagnoses, and has made us very quick to call ourselves crazy.   

Many never seek professional help, but some do, often in order to validate the conclusions they have already reached. Frequently, those conclusions turn out to be wrong. “At least three-quarters of the time, we are talking about normal variation,” says Dr. Jennifer Katzenstein, a pediatric neuropsychologist at Johns Hopkins School of Medicine.   

Katzenstein says she’s seen an increase in self-diagnosis in the last three to five years among her teenage patients. Many don’t realize, she says, what normal stress looks like, or what normal social anxiety looks like, or that sometimes it’s normal to be inattentive and easily distracted. “A lot of our kids who feel awkward in social situations think that they’re on the autism spectrum,” she says. “They’re coming in thinking that’s the diagnosis.” 

Katzenstein notes that the problem is a side effect of a well-intentioned and mostly beneficial nationwide push to remove the “stigma” from mental-health conditions. Destigmatization means we aren’t bullying people for their diagnoses anymore. And the lobotomies and forced sterilizations of the past have become inconceivable. We can now openly have conversations about mental health. But the side effect is that these conditions have gone viral and are seducing vulnerable young people who want explanations for their emotions. 

Moreover, as teens and early-20-somethings tinker with their identities, they’re working these supposed conditions into their self-images and behaving accordingly. When they view themselves as sick, they accept and anticipate sick behavior. “We go in looking to affirm,” Katzenstein says. “Our brains want to be right.”  

Kaufman landed on MDD because she thought of herself as someone who was fundamentally sad, not someone who experiences sadness. Her supposed condition became her identity. During this period, she says, she also expected less of herself and would excuse bad behavior as symptomatic. Her social circle echoed and amplified her conclusions. “There have been times where most of the people I’ve surrounded myself with treated their real or perceived diagnoses as a personality trait,” she says.   

The social consequences of destigmatization have been much more far reaching than might have been expected, and have created many negative downstream consequences. At 23, I have become used to the idea that I’m “crazy” — that everyone is. A guy at a party recently said to me that he was interested in me because he was “into super skinny chicks who act insane.” Offensive words, but my first response was to be flattered by “skinny.” I barely clocked the “insane” part.    

This is the cultural ambiance now. On dating apps like Hinge, it is alarmingly frequent to encounter guys who’ve answered the “I go crazy for … ” prompt with “girls who are slightly autistic.” Friends of mine have been told that their ’tism is cute (yes, Generation Z abbreviates autism now).  

Obviously, this trivializes real mental-health issues, and it fetishizes them, too. When guys say they are into girls with autism, what they mean is that they’re looking for quirky girls who are a little awkward and random. They want the effervescent and pink-haired Ramona Flowers from Scott Pilgrim vs. the World, not the girl with sensory issues who can’t interpret facial expressions or understand sarcasm. Not to mention that people with legit autism diagnoses would probably prefer to be chosen for themselves, rather than their neurodivergence.  

It’s difficult for everyone, from peers to parents to mental-health professionals, to navigate this new landscape. Gwen Schubert Grabb, a Los Angeles-based therapist, says she’s seen the “come one, come all” attitude of the mental-health movement being taken advantage of. Increasingly, she says, young people — and some older adults, as well — arrive with a list of symptoms to rattle off. And sometimes they have an agenda. “Look at the emotional-support and service-animal industry,” she says. “People I don’t even know will call me up and ask me to write a letter so they can bring their dog to some kind of event. I am like, ‘No, I’m not doing that.’”  

But she’s a professional and can discern when something illegitimate is afoot. Most others can’t, or are afraid to. 

Anna Caruso, 22, a senior at Northeastern University, has long suspected she has an anxiety condition and, at times, depression. But she kept it to herself growing up because the attitudes at home and at school were not sympathetic. However, she noticed a pivot in acceptance toward mental illness during Covid.  

Suggested reading

ChatGPT will see you now

By Valerie Stivers

Caruso says that when her high school reopened during her senior year, a student body that once seemed perfectly healthy was now largely mentally ill. It seemed unlikely, but difficult to challenge. “You never want to be the person to say, ‘Hey, I really don’t think that you have a mental illness,’ right?,’” Caruso says.

She does not underestimate the impact the pandemic had on young people’s psyches — social isolation and a rise of deaths across the world should be, by anyone’s standards, a valid reason to be unhappy — but the sheer numbers struck her as unbelievable. And to be fair, she’d diagnosed herself, as well, with some combination of anxiety, ADHD and depression.

“During Covid, I feel like everyone wanted to be, I don’t want to say a victim, but people wanted to be felt sorry for,” says Caruso. 

The pandemic years were also the era of George Floyd and McCarthyism-levels of cancel culture. I’ve long been tempted to believe that some of my straight, white, affluent peers were using neurodivergence to join the ranks of the marginalized. If someone was “mentally ill,” then they, too, were a part of America’s disadvantaged class.  

I’ve seen white classmates trade stories with students of color about times they’ve been subject to “mistreatment,” because education systems designed for the neurotypical, for example. Classmates have also established “safe-space” social circles. Sometimes it’s as subtle as nodding along to a black peer speaking on prejudice, with an attitude of: “we’re in this together.”

In a cultural atmosphere that systematically rewards suffering, people tend to find a reason to suffer. But there is a crucial difference between sympathy and empathy. And as with the mental-health discourse, there is a grave risk of romanticizing, or trivializing, the real issues. So far, destigmatization has been many things: a flytrap for teens trying to understand their identities; an excuse for guys to be weird about girls who “aren’t like the others”; and a means to expiate white guilt. Mental-health problems should not be stigmatized, but this trend should be.

The court hearing was the culmination of months of reading clinical reports, copying, collating and mailing pages to “interested parties,” and conferring with lawyers. All in all, the process was as skull-crushingly monotonous as it was a dispiriting reminder of the chasm between our reality and the one we might have once envisioned for our son.

The paperwork is also of vital importance: two days after President Trump admonished women for taking Tylenol, our son turned 18, thus reaching nominal adulthood. Finn is many things: mischievous and lovable, stubborn and strong, with a fondness for squeezing people’s bellies, ready or not. But he is not a “man” in the conventional sense of that word. He cannot read, ride a bike, or make a meal for himself. He cannot button his shirt or even speak our names. He communicates via a laminated “book of words” oriented around his favorite people, activities, and destinations: Mom and Dad, swimming, Panera and Olive Garden. 

To be clear, most people with autism are not intellectually disabled. But Finn, like nearly 30% of people with an autism diagnosis, is. Finn will never live independently, nor be able to make all those decisions that most 18-year-olds are delighted to suddenly make for themselves. So if something happens to him that would land him in the hospital — and in the past 18 years, he’s landed there quite often, for everything from the broken pelvis he suffered from crawling out his second-story bedroom window to the danger posed by the inedible objects he frequently ingests — he could not advocate for himself. Hence the need for us to be his continued legal guardians, the forever parents to this forever child.

Suggested Reading

How autism became a political battleground

By Poppy Sowerby

Autism — and the supposed search for a cure for it — has been a marquee cause for Health and Human Services Secretary Robert F. Kennedy, Jr. The “cure” is a painful topic for us: difficult to think about, even harder to write about. We love our son with the same desperate tenderness all parents feel for their children, but it’s been a hard road, paved in near relentless crisis. Our son’s particular disorder puts himself and others in frequent danger. He requires constant supervision. So while we might love and celebrate Finn as his individual self, it would be dishonest to say we celebrate his autism; we wouldn’t wish it on any other family. We would welcome true medical insight into his condition. But this administration has offered instead a litany of the same old disproven boogeymen and speculative theories with little medical evidence to back them. 

A narrow focus on a “cure” pathologizes Finn’s very identity — to say nothing of high-functioning people with autism who would say they are thriving not in spite of their unique neurological makeup, but because of it. We support the neurodiversity movement, and believe high-functioning autistic people should be accepted and valued for all their differences. And we’re offended, and beg to differ from RFK Jr.’s recent characterization of families like ours as having been “destroyed” by caring for a family member’s profound autism. We’ve been banged up, sure, but we are soldiering on. 

The “cure” rhetoric is especially galling to families like ours whose daily struggles to care for a child with profound autism give us little time for conjecture over what did or didn’t cause it. Our wearied tribe more often than not is too busy to organize politically or lobby our local representatives for better services. We need help, and yet, while the administration obsesses over autism’s origins, cynically deploys recycled conspiracy theories for political gain, and relentlessly attempts to promulgate fear instead of facts, it is also actively making the lives of families like ours harder. 

Even as the Department of Health and Human Services announces $50 million in grants that focus almost exclusively on identifying the origins of autism, the administration is simultaneously dismantling the Department of Education, which ensures all 50 states offer kids like Finn the expensive-yet-indispensable therapies and services that few families could afford on their own. Without this federal oversight, students with disabilities in many states are likely to lose access to these specialized support services, including speech and occupational therapy and behavioral interventions.

Right now, our school district covers the cost of Finn’s residential school placement, but when our son turns 22 that cost will fall on us, which will run upwards of $60,000 annually after any governmental assistance. They don’t make inspiring movies or funny TV shows about people who can’t speak, drool in public, and bite their loved ones when frustrated. Yet roughly 1.5 million Americans have profound autism. We used to be merely invisible — now, as one of the biggest beneficiaries of the American safety net, we’re targets. 

Yet to hear Kennedy’s apocalyptic rhetoric, and the news coverage it inspires, you would think that the only concern is “children with autism,” and that these individuals magically disappear upon turning 18. Finn would like to reassure you they do no such thing. In fact, if you shop at the Mount Auburn Star Market in Cambridge, Mass., on Sunday afternoons, he will reassure you at the highest possible volume. 

For one thing, the monomania for identifying an origin, and the language of “prevention of disease,” ignore the fact that many, perhaps even most people with autism and their families don’t think of it as a disease at all. However, even if we were to entertain the search for scientific insight as one worthy goal among others, that’s not what RFK Jr. is doing.

Responsible government leadership would acknowledge what we don’t know, instead of recklessly elevating hypotheses into the realm of settled scientific fact. Most experts, for instance, would question whether autism even is an epidemic. Diagnoses have increased dramatically since the Nineties, to be sure. But most of this increase is likely due to broader diagnostic criteria and better screening practices from pediatricians. At the same time, there are reasons to believe that environmental triggers could also be a contributing factor. A 2024 Danish study, for example, indicated that prenatal exposure to the anti-seizure medicine Valproate led to “significantly increased” risk of autism. 

Suggested Reading

Mental illness doesn't make you special

By Freddie deBoer

It’s entirely possible that RFK Jr. is right in claiming that autism is caused in part by such environmental triggers. But that’s all the more reason to accept already-settled scientific questions in order to focus on what those triggers might be. We know, for instance, that autism is a largely hereditary disease, yet Kennedy has termed genetic research a “dead end.” Science never flourishes when it’s turned into a kind of ideological battlefield or is used to inspire panic and fear, instead of increasing our understanding into a complex phenomenon. 

The administration’s handling of the recent scientific developments regarding Tylenol are an example of this misguided approach. Some high-quality studies indeed observed an association between use of acetaminophen (the active ingredient in Tylenol) and subsequent diagnoses of autism. But association isn’t causation, as the studies themselves were careful to acknowledge. Tylenol is a drug previous generations of expectant mothers relied on as one of the few safe pain relievers to use during pregnancy. Now it will become yet one more partisan shibboleth, embraced or rejected according to political party, not scientific understanding. 

Likewise, it was once good science to investigate a possible link between the Measles-Mumps-Rubella (or MMR) vaccine and autism. Symptoms of Autism Spectrum Disorder — the catch-all diagnosis for a broad range of social, intellectual, and physical challenges — commonly emerge around the age of 2, shortly after pediatricians recommend children receive the vaccine. In 1998, a British gastroenterologist named Andrew Wakefield published a paper in the well-respected journal, The Lancet, that indicated a link between the MMR vaccine and autism. Subsequent studies failed to replicate his finding, and after the Lancet study was discovered to contain serious methodological deception, it was retracted and Wakefield’s medical license revoked.

Disgraced among his medical colleagues, Wakefield has found a credulous audience among that most vulnerable and anxious of populations — young parents. The link hadn’t been disproved, so the antivax movement spread, and funding followed. There have now been 16 subsequent studies investigating the link, conforming to the highest scientific standards, using large-population variable and control groups, and published in credible, peer-reviewed journals. None could find evidence of a causal relationship between autism and vaccines. 

But RFK Jr. and the antivax movement — which he promoted and, indeed, helped create — continue to question the validity of those studies. This relentless questioning of scientific consensus deprives funding from proposals that might discover a real smoking gun. As a longtime promoter of vaccine conspiracy theories, Kennedy has done more to inhibit autism research than he has done to foster it. Small wonder few of us would embrace him as our champion now. 

For us, and especially for Alysia, Finn’s mother, the demonization of a once-innocuous pain reliever feels like a form of psychological violence, an unnecessary act of cruelty toward mothers  already bent double under the weight of bureaucracy, the toil of care, and the inevitable shame that their child’s disability springs from something they did or didn’t do. 

This isn’t the first time America has witnessed an autism panic, nor the first time that policymakers and pundits have focused on medically specious “causes” at the expense of compassion for special-needs families. In fact, the current obsession over Tylenol shares an uncanny thread with the “refrigerator-mother” theories advanced in the Fifties and Sixties, in which autism was believed to develop among children whose mothers failed to demonstrate adequate emotional and physical affection. 

Every mother of a disabled child already lives under the shadow of guilt. What did we do wrong? Was it the vitamins, the diet, the stressful pregnancy, Jeff’s age, the hypoxia Finn suffered during his birth? Or should we have tried another therapy — horse therapy, water therapy, some therapy we’d never heard of? Should we have cut out gluten, casein, sugar, red dye?

Those questions keep mothers up at night, even when they know better. Because there is no definitive genetic test, no absolute medical certainty, the suspicion hovers: maybe we failed our son. Maybe, in some unknowable way, we could have made him whole.

As Finn’s parents, we will always be terrorized by these conjectures, but this latest milestone in his life, adulthood, has breathed new life into them. Finn will no longer be the boy in the children’s hospital who swallowed something sharp, or broke his hand punching through a window. He will be a man — a man who drools sometimes, who wears ill-fitting clothes, who bangs objects repetitively and loudly in ways that make strangers recoil. How will the world see him then? Will a doctor still rush to his side? Will a bystander still reach out a hand? Or will he be seen only as a problem, a disturbance to be mitigated, a social cost to be contained?

Kennedy and the administration have not provided true leadership, or even a sense that families like ours are seen as valuable members of this fractured body politic. We feel abandoned to confront such issues on our own, leaving us weaker, sadder, and more stressed out as we confront the mountain of filings and petitions and forms that this latest administrative task will require us to surmount. 

We wish, more than anything, that the general public could see Finn through our eyes. Yes, he is messy, unpredictable, difficult. But he is also profoundly lovable. He is funny in ways only he knows how to be. He deserves neither pity nor the dread of please don’t let that happen to me, but dignity — the recognition that he is part of the human family, worthy of care. Health is important, but so is our shared humanity. Let’s Make America Humane Again would be a better slogan. 

What was happening 20 years ago? In 2005, his wife Melania was pregnant with his fifth and final child, Barron. At that time, parents were still reeling from the bogus claims of Andrew Wakefield, whose notorious 1998 Lancet paper on the links between the MMR vaccine and autism had sparked a global panic.

But Trump’s timeline is more specific, more fascinating, than all that. “I want to thank the man who brought this issue to the forefront of American politics along with me, and we actually met in my office. Is it like 20 years ago, Bobby?” he went on. A bit of digging reveals a rich seam suggesting what that conversation might have entailed: in June 2005, RFK Jr, then an environmental attorney, published an article in Rolling Stone claiming to have identified a conspiracy between the government and the pharmaceutical industry to conceal the autism risks of thimerosal, a mercury-based preservative used in some vaccines. It was retracted in 2011, after substantial errors were found — but to read it today is to recognize again the despicable “they” that Trump namechecked in Monday’s conference.

More from this author

Who’s afraid of a woke witch?

By Poppy Sowerby

“They” is the medical establishment which is accused, in the cases of both Tylenol and childhood vaccinations, of declining to “let the public know” that their pharmaceuticals caused autism. To be clear: his Tylenol claims are not supported by evidence. In RFK’s Rolling Stone article, which one can imagine being fanned out on the coffee tables of Trump Tower 20 years ago, Kennedy claimed the Centers for Disease Control and Prevention (CDC) — the institution which, in his second life as health secretary, he has been at war with — “paid the Institute of Medicine to conduct a new study to whitewash the risks of thimerosal”. He accused “powerful lawmakers in Washington” of assisting drug companies, a “chilling case study of institutional arrogance, power and greed”. The CDC’s archives refer to several studies debunking the link between autism and therimosal dating back to 1999. Nevertheless, in RFK’s screed it was a “moral crisis” that involved unaccountable manufacturers cutting costs and lining the pockets of venal politicians. In the intervening two decades, as Monday proved, nothing has convinced RFK that this evil dynamic has changed. Mistrust, paranoia and conspiracy theories were already very much in the cultural bloodstream 20 years ago; then, as now, RFK was leading the crusade.

And just as they were two decades ago, people with autism again find themselves at the center of a culture war. The ostensible reason for this, as Trump mentioned in Monday’s presser, is the dramatic growth in the prevalence of the condition: “When you go from [one case in] 20,000 to 10,000, and then you go to 12, you know there’s something artificial. They’re taking something.” But the CDC’s picture of incidence is much more complex than this: these figures, which are a CDC estimate, are caveated as not being representative of the entire country.

As neurologist Suzanne O’Sullivan wrote in her book The Age of Diagnosis, the explosion is certainly related in part to the massive expansion of autism’s diagnostic criteria. Children who in former decades would never have met classification thresholds are now being diagnosed according to an ever-growing list of common behaviors: social awkwardness, difficulty in keeping friends, being fidgety or hypersensitive. As O’Sullivan showed, these relatively functional patients joining treatment waiting lists has made both care and public understanding of the condition more difficult for those with severe forms: those with very limited or no speech, major cognitive delays, or who need constant supervision. Yet this compelling explanation for the modern “epidemic” of autism does not seem to trouble Trump. Nor RFK: in Monday’s press conference, he dismissed this theory as a “canard”.

What does trouble Trump and his MAHA/MAGA acolytes is the way autism as a “problem” interacts with their other political bogeymen. The attendant fantasies are those of Trump’s America: perfidious progressive institutions trampling on families, the corruption of children, the parallels with failed masculinity (you only need look to the gamer spaces from which Tyler Robinson is said to have emerged to understand this latter link). On Monday, Trump conjured the pitiful image of “a little child, a little fragile child” about to be pumped with a “vat of 80 different vaccines”. When Barron was an infant, Trump said he had done things “the old-fashioned way”, meaning “one shot at a time”. The multiple-vaccine procedure looks, the President said with a straight face, “like they’re pumping into a horse”. The villain here is a sort of mad scientist, egged on by liberal institutions and deluded by medical orthodoxy into obscene acts of child cruelty. But just as autism becomes once again a flashpoint for the Right, it represents something altogether different for the Left.

Suggested reading

Lorde’s sadgirl pop sings of Gen Z vanity

By Poppy Sowerby

Why? At the same time as diagnostic definitions were expanding in the 2000s, the concept of “neurodiversity” was becoming mainstream, creating a new frontier in civil rights and demanding societal accommodations instead of a search for a “cure”. Inevitably, it was swept up in other internet-bound identity causes of the time; so it is that the influx of milder, modern cases are tonally connected with LGBTQIA+ social justice warriors. Coupled with the fact that autistic individuals are more likely to identify as queer, and it is easy to see why this shapeshifting condition is once again front and center of the culture wars at this political moment.

One wonders what Elon Musk makes of it all. The most famous autistic person in the world was, remember, in the arena during Trump’s teaser for his autism announcement at Sunday night’s memorial for Charlie Kirk, when his sometime political paramour said: “I think we found an answer to autism. How about that? Autism … we won’t let it happen anymore.” I doubt Musk, being a data nut, was sold on the Tylenol thesis — but the announcement may have rankled on a personal level. In a 2022 Ted talk, Musk described a “rough” childhood in which “social cues were not intuitive” — yet he also described his brain chemistry as a blessing: “I found it rewarding to spend all night programming computers, just by myself.” Musk is a figurehead for the Silicon Valley nerds in the Goldilocks zone of neurodiversity. These are the powerful few with what Wired in 2001 called “Geek Syndrome” — socially awkward, perhaps, but with exceptional aptitude for STEM; these are also the people who will be responsible for the forthcoming AI revolution, something that in turn will be of unimaginable financial value to the government. How might they respond to Trump’s language around the condition?

At a time when autism is once more the focus of the culture wars, Musk will be among millions of people who find their medical history being booted around as a political football — again with the justification of dubious science. It seems that conservative America, as Trump said of himself, continues to have “very strong feelings about autism”. Without a doubt, the topic merits committed and consistent research, but what this administration lacks, as this week’s Tylenol announcement showed, is clarity: clarity on the problem of overdiagnosis, on RFK’s decades-long history of scientific misdirection, and on why the specter of autism itself has become such a fascination at this ultraconservative moment. Without this, panic and junk policy seem inevitable.

“One teacher in particular showed no sense of understanding Charlie’s problems and would actually be sarcastic with him,” recalls his mother Michelle. “When I tried to explain what his problems were, the teacher wouldn’t have it. They just said he was naughty.”

There was nothing Michelle could do to persuade, cajole or bribe the boy out the door — and nine years old is far beyond the point of physical coercion. Besides, which parent would force their child to a place where they were screaming they didn’t feel safe?

Such tearful, exasperated negotiations are now part of the morning routine in hundreds of thousands of British homes. More than one in five children is now persistently absent from school, according to the Department for Education. In 2022-23, one in 50 pupils missed over half of the school year — the figure has grown by 150% since the Covid pandemic. This is a national crisis playing out in our overcrowded, over-regimented, under-resourced schools that no amount of blaming and shaming seems able to abate.

For this is not — as Charlie’s teacher told his mother — a case of children being “naughty”. The vast majority of the absent children (92% according to one study) have special educational needs or disabilities (SEND). For vast numbers of neurodivergent and autistic children in particular, school has become a hostile environment — a place they feel unable simply to be, let alone learn, let alone thrive. Research by the National Autistic Society has found that only one in four autistic students feels happy at school. Many SEND pupils share stories of being traumatised. “By the age of 16, I was self-harming just to get through the day,” is how the trustee of one autism charity put it. Charlie would go on to threaten suicide — describing in detail to his mother how he intended to go about it.

More from this author

The plight of Britain's school-refusers

By Steve Boggan

The academic term for this is “school distress”. A recent Newcastle University study, published in Frontiers in Psychology, describes it as a symptom of a “systemic failure” of the education system to meet the needs of young people — in effect, a denial of their legal right to education. As the study makes clear, the effects on the entire family are catastrophic, with parents often sliding into debt as they are forced to give up careers to look after their distressed children. Meanwhile, they are threatened, shamed, disbelieved and gaslit by the authorities. “I had suspected the results might be bleak, but just how bleak was really shocking,’” says Dr Sinéad Mullalley, a lecturer in neuropsychology at Newcastle University, who led the recent study into the crisis. Asked to measure the mental health effects of school refusal in comparison with 17 other traumatic life events, such as serious personal injury or sexual assault, the parents ranked it as the second-most traumatic. Only the death of a child or spouse was worse.

It is compounded by a total lack of understanding from the authorities. As Charlie’s absenteeism worsened, Michelle was called into school for a meeting with his class teacher, an educational psychologist, a specialist autism teacher, the school’s deputy head, class teacher, a speech and language therapist and a pediatrician. It was the pediatrician who told Michelle that the fact that Charlie couldn’t cope in class was essentially her fault. “She said: ‘I find lots of parents just want a label for their children to cover the fact that they’re not good at parenting.’”

Michelle was, by this point, used to criticism. “When you have a child with autism and you have difficulties getting them to go to school — for all sorts of valid reasons — you are often disbelieved, blamed, shamed and made to feel guilty,” she tells me. But to have the careless comment come from a pediatrician was actually painful.

The broader picture is that Britain’s school children are not OK. Since 2010, mental health conditions have mushroomed among Britain’s young people to the point that it is no exaggeration to talk of a crisis. According to the Department for Education, more than 1.6 million pupils in England now have special educational needs and/or disabilities (SEND), an increase of 101,000 since 2023.

To some extent, these increases are explained by an increased willingness to share experiences as well as efforts to destigmatize mental health. But this has led to new problems: online questionnaires that diagnose just about everyone with a smartphone with ADHD; common adolescent issues pathologized as conditions needing labels and treatment; and an ever-greater number of parents and children competing over ever-diminishing resources.

It has also produced its own backlash: witness the current anxieties about “overdiagnosis” and fears of sharp-elbowed middle-class parents seeking to gain extra exam time for their darlings. None of which provides any succor to families with genuine needs — who now face the additional risk of being assumed to be somehow gaming the system. Meanwhile, the Government’s attempts to improve the woeful attendance figures have shown an almost comical level of misunderstanding. Last year, an advert featured a laughing schoolgirl and the caption “This morning, she was worried about school… but look at her now!” It was widely criticized by those involved. “I can’t begin to say how angry this makes me feel. It is making parents feel guilty. We would love our children to be able to attend school,” one parent told the BBC.

The Newcastle study makes for bleak reading. Based on extensive interviews with hundreds of parents suffering from school distress, it is the first investigation into the effects on parents as well as children. Over half of the parents developed new mental health conditions, such as depression, anxiety and sleeplessness, following the onset of their child’s school distress. Almost 79% said they felt they had not been believed by school staff when raising concerns about their child, and a further 47% said they had felt “threatened or vulnerable” while trying to discuss problems with a member of school staff. “This isn’t trivial,” says Dr Mullaley “These parents are dealing with a very distressed child, but they’re also dealing with the impact of that on all aspects of their life. They’re struggling financially in an awful lot of cases, and their mental health is declining as a consequence.”

It is the dismissal of the issue that Mullalley feels is most concerning. “There is such a power imbalance,” she says. “They are threatened with fines and court action and disempowered by the actions of professionals surrounding their child.” The cases can quickly escalate: social services become involved; child protection assessments are undertaken; parents soon find their own motives questioned. “That is such a profound threat.”

Suggested reading

Restorative justice is a gift to bullies

By Giles Fraser

In Michelle and Charlie’s case, the situation became worse before it became better. “At the beginning, there is self-doubt and you think that the professionals must be right, and you question everything you do,” says Michelle. “But then there is frustration, because there are so many professionals involved in your child’s life, but they don’t talk to each other, and often you don’t get to find out about decisions made about your child.”

Covid, and then a transfer to a special school, only seemed to make matters more dire. Charlie became withdrawn and dysregulated, lost worrying amounts of weight and threatened suicide on several occasions. “I have a therapeutic background and I know that when a person is serious, they can tell you how they’re going to do it,” says Michelle. “That was really upsetting – that, and the fact that when he started to lose weight, I had no control over it. I couldn’t make him eat, and I couldn’t keep him safe… And all the time you feel people are judging you. Is he being difficult or are you being soft?”

The costs are not only borne by parents — who are in many cases thrust into full-time care roles. When a child is in difficulties, their parents may apply for an education, health and care plan (EHCP) assessment from their local authority. This can attract extra funding and practical support. However, the number of parents applying for an EHCP has doubled during the past eight years — and now half a million pupils have one in place. Councils’ budget deficits accrued on SEND spending are expected to rise from £2.4 billion to £6 billion by 2026, according to the County Council’s Network (CCN).

Such is the demand that only around half of the applications for care plans are processed within the regulated 20 weeks. When SEND support is not approved by local authorities, parents can appeal to a tribunal at a further cost to councils. Last year, 98 per cent of these appeals were upheld. The system is in a shocking mess, but rather than address the failure, the Government has instead floated proposals which would remove education, health and care plans (EHCPs) from children altogether.

Parents often end up in Kafkaesque nightmares as they negotiate this bureaucracy. Catriona Magee’s autistic son, Adam, 14, had been out of school for two and a half years when the local council wrote to insist that he actually was in “full-time education”. In reality, Catriona could not find a school that would take him. Adam was in his bedroom, retreating further into himself.

“It was institutional gaslighting and it blew my mind,” Catriona tells me. “I think it would break many people. If it wasn’t for the fact that I was a mother and I had to keep going, I can see why people would top themselves over this.”

By this point Adam had spent years trying to fit in at schools that couldn’t — or wouldn’t — accommodate his autism. “How he copes depends on the environment he’s in,” says Catriona. “If he’s in the right environment and he’s comfortable, you would think he’s fine. But if he’s in the wrong environment, he can’t function at all.”

In common with many students, Adam’s problems exacerbated after the second Covid lockdown in October 2021. She would manage to get him out of the door but he would be sweating and stressed by the time they reached school. “He just couldn’t get through the door, or he’d get towards the door and then he would just run or he’d hide under a bench or he’d start spinning round and round.”

He wouldn’t attend school regularly again until March 2024. During this time, Catriona engaged in a series of administrative and legal challenges with her local authority and meanwhile was forced to abandon a masters in social work and give up her regular job, meaning her household income effectively halved.

“The whole thing is so isolating,” she says. “No parent wants their child to have problems. No parent wants their child to be ‘the disruptor child’ stuck at home with no future. All I want is to get on with my life, to have a job, for my son to be happy, for him to be learning, to have friends, and to have a future. That’s all I want. And it shouldn’t be that much to ask, but apparently it’s impossible.”

As isolated as parents feel, the experience is common enough for it not to be a simple issue of individual failure. Something, clearly, has gone very wrong for many, many British children. The system is clearly no longer fit for purpose. Ellie Costello founded the group Square Peg, after her two children experienced school distress. Since 2019, she has seen the Facebook support groups for affected parents rise from 1,000 to 73,000 members, with many sharing similar stories. “We are seen either as  pointy-elbowed and entitled golden ticket seekers for our little emperors, or we’re feckless and ignorant people who don’t value education and keep our kids out of school,” she says.

She is one calling for an overarching change to the education system, with actual clinical supervision built into schools in order that teachers can get on with teaching. “Teaching and schooling is one of the only front-facing key worker services that doesn’t have clinical therapeutic supervision built into it,” she says. Under the current system, it is effectively left to the schools. Some are sympathetic and handle the problem well. Others make the matter far worse.” There is currently no overarching guidance on what best practice looks like and what the worse-performing schools can learn from the better ones.

This may sound like more resources. But as with so many of Britain’s problems, the failure to address it at source means that we waste billions further down the line. Meanwhile, we have hundreds of thousands of children spending time that they could be learning, playing, socializing — being children — isolated, miserable and traumatized in their bedrooms, and their parents slowly descending into debt, misery and quiet desperation. It’s a tragic waste. I have twice asked the Department for Education to respond to the study and to ask whether it would consider providing the training and support professionals so clearly want. Depressingly, it has failed to respond.

He had to do something. So he went to the courts. The legal claim he filed on that frigid winter day would put Wade on a quest no father should have to face: saving his daughter’s life from a Canadian health system that at times appears more committed to delivering death than protecting health. By taking legal action, he managed to delay Marge’s death for a while. But he is set to lose the battle.

Wade and Marge aren’t the real names of this story’s subjects. The case is under a Canadian publication ban issued by a provincial court in Alberta, leaving Marge’s family reluctant to speak on the record. Yet with the pro-euthanasia Liberals re-elected to power in Canada and assisted-suicide legislation swiftly clearing obstacles in Britain and New York state, among other jurisdictions, their story must be told: for it highlights the slippery-slope expansion of the categories of patients deemed eligible for suicide-by-doctor, once the practice is legalized.

After the January notice came the details. The last physician to assess her for assisted suicide, a family doctor practicing with the Alberta Health Services (AHS), took fewer than 24 hours to review and approve her application. And although the neurologist treating her for fatigue and pain assessed her as “normal”, another family doctor, unknown to her parents, declared her to be terminally ill. The clinic at which this family doctor practices referred UnHerd’s request for comment to AHS, which told UnHerd that “as this is before the courts, we are unable to provide comment”.

“She tells us that she’s getting [Medically Assistance in Dying], and of course we freak out”, Wade tells me. “I was new to MAiD. I didn’t know anything about it.” He describes his daughter, Marge, as an intelligent young woman. He loves her, and he was saving money for her to be independent, to move her from the family home to her own apartment. She was healthy, but convinced she was sick.

Her only diagnosed conditions were autism and ADHD, which made it difficult for her to keep in touch with her friends during Covid lockdowns or to hold down a job. Her life was nocturnal and online, and that worried him, as did the sort of online peer pressure that bears down especially on younger women. Wade says: “For the last eight years, she has spent a lot of time online researching medicine and adverse medical conditions”. She slept through the day and stayed up most nights until 4 a.m. or later as she accessed “online support groups and chat rooms with other people who share her sickness”.

Suggested reading

The cruelty of Canada's euthanasia policy

By Lionel Shriver

Canada has become a warning light for the limits of enforcing safeguards for euthanasia. Even though hundreds of reported violations of Canada’s criminal law on euthanasia were never fully investigated by authorities, Marge’s story is different. She has thus far refused to make public the diagnosis on which she based her application for suicide. Her father, however, insists that it’s her autism that has caused to her become fixated with being sick — terminally so.

In Canada, intellectual disabilities or mental illness alone are no reason for people to receive MAiD. That’s unlike the Netherlands, where at least five people with intellectual disorders younger than 30 cited autism as their primary motivation for euthanasia. Canada is supposed to be different — at least, until 2027, when the country will expand the law to approve assisted-suicide requests for cases of mental illness alone.

As it is, to qualify for euthanasia in Canada, you need any two physicians or nurse practitioners to say you meet the eligibility requirements. You must be over 18 years of age, mentally competent, eligible for health care, and have a “grievous and irremediable” physical illness or disability. Marge’s autism, her parents have argued in court, means that his daughter “is vulnerable and is not competent to make the decision to take her own life”.

Suggested reading

The assisted-dying lobby has already won

By Kathleen Stock

It was 2021 when Marge first filled out the form — without telling her parents — asking to die. AHS, the public health-care system, connected her with two physicians. Although one physician deemed her eligible without any diagnosed physical symptoms, according to Wade, the second denied her application, presumably because she had no terminal illness. She seems to have only met some of the requirements, although it is impossible to know for sure without access to her MAiD assessment. Alberta’s policy was that in the case of a tie, the suicide would not proceed.

But Marge was determined.

In 2022, she went doctor-shopping. She found another physician, an Alberta family practitioner, who intervened and supported her (their clinic didn’t reply to UnHerd’s request for comment). Unknown to the family, this doctor signed a change in her “Goals of Care Designation”, which is the medical standard used in Alberta to indicate how severely ill someone is. The doctor switched it to the most extreme category, which in some Canadian provinces indicates the likelihood of imminent death; that was almost three years ago.

Suggested reading

Assisted dying killed my family

By Andrea Dixon

The following year, in 2023, she applied for assisted dying a second time. Once again, the two physicians consulted disagreed. (The clinics at which these two practice didn’t reply to UnHerd’s request for comment; AHS declined to comment, citing the court case.) This time, however, the so-called MAiD navigator, who sherpas patients through the process, connected Marge with a third doctor as a “tiebreaker”. The chosen physician was the same one who had approved Marge’s MAiD application the first time, and did so again, within 24 hours.

It was only then that her parents found out from Marge that she had been approved for assisted suicide. Her parents pushed back. Tempers flared. And the MAiD navigator claimed that Wade was a “safety risk given his threats” fewer than two weeks before she was set to die.

Her father couldn’t understand how any doctor could think Marge was qualified to die. “I thought MAiD was for, like, you’re dying anyway. So, we’ll just speed it up because you’re suffering. That’s what I thought it was for”, he tells me. “And I’m thinking, well, how could this be for Marge?” So, the day before her “MAiD provider” was meant to pay a final house visit, when a physician and a nurse would bring the lethal but now routine injection of a sedative, a coma-inducting agent, and a neuromuscular tranquilizer, Wade filed a last-minute court challenge. He claimed that Marge did not have a “grievous and irremediable medical condition”, that her only diagnosed illnesses were mental, not physical, and that her second tie-breaking assessor was not independent.

Suggested reading

'Why did Canada help my brother die?'

By Flo Read

That day, an initial judge granted the temporary injunction to block physicians from ending the life of Wade’s daughter. But then the case went to trial.

This was the first time anywhere in North America that a legal assisted suicide for a non-terminally ill patient, approved by any two physicians, was stopped by a court, at least in its preliminary stage. The judge, Justice Colin Feasby, of the Court of King’s Bench, Alberta, ruled that Marge’s father had a reasonable cause of action that the correct protocols around assisted dying weren’t followed. Marge had no terminal illness. Neither of the MAiD assessors appeared to be experts on Marge’s autism. And the independent assessor appointed as tiebreaker wasn’t, either.

Once it came to ruling on the substance of the dispute, however, the judge wouldn’t consider whether Marge qualified for assisted suicide; no evidence was accepted on even naming the condition for which she was approved. Any criminal prosecution, the judge ruled, could only happen after Marge is dead: “Parliament has put its trust in doctors and nurse practitioners, and it is not for this Court to second guess that choice.”

In Britain, Kim Leadbeater — a member of Parliament whose proposal to legalize the practice is set for a critical vote in the House of Commons this May — recently claimed that “there would be an injunction” by the parents of a person with a learning disorder if their child was choosing to die for the wrong reasons. In response to this, Wade says, “I know it won’t work”. When his injunction was thrown out, the judge ruled that his doubt didn’t matter. “As a court”, Judge Feasby held, “I can’t go second-guessing these MAiD assessors … but I’m stuck with this: the only comprehensive assessment of this person done says she’s normal”.

The ruling was no surprise. Since the Supreme Court of Canada decriminalized euthanasia, scarcely any judges in Canada have found problems with euthanasia safeguards. Rather, past rulings reinforced that MAiD wasn’t expansive enough. The 2019 Truchon v. Canada case expanded the practice to include nonterminal illnesses. Failing those who weren’t dying, the ruling said, would be tantamount to discrimination against people without a terminal illness.

One of the two plaintiffs, Jean Truchon, a 51-year-old euthanasia advocate with spastic cerebral palsy, requested to die because he was suffering from a severe disability that prevented the use of his arms. Yet Truchon also told a friend that he would have chosen to live if he received adequate support at home.

Suggested reading

How France lost her dignity

By Michel Houellebecq

The Trudeau government chose not to appeal the decision, despite opposition from virtually every prominent disability-rights organization in Canada.

In Marge’s case, too, Canadian disability groups mobilized against the ruling; they agreed with Wade that disabilities shouldn’t be compared to a terminal illness. At stake is a future where disability supports are neglected for immediate and cheaper death-on-demand, only for those whose disabilities are too profound or serious for the state to support.

In September, some of the largest Canadian disability groups launched a constitutional challenge against euthanasia based on nonterminal disabilities. The suit claimed it is an “appalling injustice” to offer suicide just on the grounds of disability. “It is not just wrong”, says Krista Carr, the executive vice president of Inclusion Canada, in an email to me. “It is discriminatory and violates our most fundamental rights.”

Suggested reading

What I've learned about suicide

By Julie Burchill

Yet even if that constitutional challenge triumphs, it will be too late for Wade. He says he has spent more than $150,000 in legal fees, half of it through credit-card debt; a further legal appeal would have to come from money he doesn’t have. But the expense did not bother him: “This is just money. We can make it. We can’t go to the store and buy another Marge. I don’t regret it at all.”

His legal challenge failed, but it restarted Marge’s assisted-dying process from the beginning. He tells me she had applied again. Meanwhile, in April 2024, Wade appealed the court’s decision, which delayed any further assisted-suicide approval until October that year, when his appeal case was to be heard. But Marge began starving herself that June, so he dropped the appeal a week later.

More recently, I received another message from Wade. Marge’s third application to die had been approved. Wade waits, angry and terrified, to receive the scheduled appointment of his daughter’s death. It could happen anytime.

That same little brother, who has just turned seven, is already catching up with Josh in English and Maths. And unlike Josh, he’s able to regulate his emotions and follow instructions. Their mum fears that Josh may never get there. She knows he needs specialist support, and she knows, at least in theory, how to get it.

His school’s Special Educational Needs and Disability Coordinator — or SENDCo — referred Josh to the NHS’s Child and Adolescent Mental Health Services (CAMHS) for an autism spectrum assessment. CAMHS rejected the referral. The SENDCo then put in a referral for an ADHD assessment. Both times, Josh’s mum did the parenting courses that you have to do to indicate that a child’s home environment isn’t the problem. Having two other children who were doing well both socially and at school wasn’t enough evidence that she’s a competent parent. She kept a three-month diary of Josh’s behaviour, and made notes about the ways in which she and her husband tried to support him. But it was all for nothing: CAMHS rejected the second referral as well.

It can sometimes seem as though CAMHS’s primary job is saying no. Josh’s story is far from unusual. Working as part of an NHS early intervention team, I met the family of another boy, of a similar age, who keeps getting excluded at school because he can’t sit still and stay focused in lessons — but who excels on every sports pitch and behaves well at home, where he can move around and go outside whenever he needs to. That boy got rejected from CAMHS five times.

The team I work in can’t diagnose ADHD or autism. Neither can the SENDCos in schools, even though they’re often experienced and knowledgeable. Diagnoses can only come from a clinical psychologist, a psychiatrist or a highly trained specialist nurse. For most families, this means going to either CAMHS or whatever’s left of their local authority’s educational psychology team. In our small county, that team amounts to one employee. The waiting time for an assessment is between one and two years, which colleagues in neighbouring areas say isn’t too bad.

More from this author

Not all children belong in school

By Kate Adams

But to get onto the waiting list, you have to be accepted first. One way for CAMHS to keep waiting times down is to just say no to most referrals. Getting a child the support they need from the NHS is an arduous, exhausting process for schools as well as families — and, of course, for the children, who know that there is something different about them that keeps on causing problems, but can’t be offered any solutions without a diagnosis. SENDCos face rejection after rejection if they request either CAMHS involvement or funding for Education Health Care Plans (EHCPs), which pay for the resources and support some children need to cope with mainstream education.

If, however, parents can afford a private assessment, a booming industry of psychiatrists and educational psychologists is on hand to provide their child with a diagnosis within a week or two. It’s a frictionless, even pleasant experience: you go online, book an appointment and chat to a friendly, highly credentialed specialist. I know this because I’ve done it myself: a few years ago, I had some problems at work, and an ADHD diagnosis helped make sense of them. While Josh’s mum has to justify herself to an institution that holds all the power — an institution that can demand she take courses multiple times and jot down observations for months, all in the hope that her child will be accepted for an initial conversation — paying clients can expect a service that works for them.

This affects far more than the speed of the diagnosis. And here, the thesis of the psychiatrist Thomas Szasz might give us pause. Szasz was critical of the very idea of mental illness, observing that medicalising problems in living puts the patient at the mercy of a controlling healthcare system. We could see learning difficulties similarly, as problems in living that have somehow become the remit of the medical establishment. The primarily social difficulty of being wired in a way that makes getting on in the world harder — which can be alleviated by the primarily social interventions of extra attention and time — has been assigned to ever-stretching mental health services.

Suggested reading

Mental illness doesn't make you special

By Freddie deBoer

Szasz analysed the power play in various models of doctor-patient relationships: in some, the doctor had absolute authority, like a parent over an infant; at best, the relationship was balanced and collaborative, cultivating the patient’s autonomy and avoiding abuses of power. Services such as CAMHS should, in theory, take this latter, patient-centred approach, but in practice they rarely do. In systems such as the NHS, healthcare is rationed, and the implication is that you’re supposed to be grateful for whatever you can get. Some individual clinicians may be excellent, but when the system is creaking and everyone seems to resent you for it, it’s hard not to get sucked into hiding behind the defences of a power imbalance stacked in your favour. The patient needs you more than you need them.

So, money doesn’t just get you access to healthcare — it also changes your relationship with it. If you’re paying, you get to ask questions, rather than obediently tick the boxes required of you. Instead of feeling beholden to a larger and more powerful system, grateful for whatever it is prepared to give you, you can think about what you want from it.

And if you get that SEND diagnosis, it can alter your power relationship with other institutions too, because it means they have a legal duty to accommodate you, to help smooth over those problems in living. Last year, a spike in demand for ADHD referrals in Cambridge resulted in GPs being provided with template letters requesting extra time in exams.

Of course, it’s natural to be hypersensitive to dips in concentration while revising for finals. But with a quarter of UK students now claiming extra time on the basis of additional need, we have to ask whether it’s time to reassess the concept of special educational needs. Originally, it was about people like Josh, who struggle with basic education. Now, the UK’s cleverest students are seeking the same diagnosis as him.

The middle-class, mid-life ADHD revelation has become a bit of a media cliché, but it’s indicative of a broader pattern. The middle-classes account for an ever-larger proportion of SEND diagnoses, partly because we can afford to pay for them. And yet, the need for SEND services is greater in more deprived areas, not least because caring for a high-need child exerts a financial strain. Despite this, a recent LSE study suggests that wealthy areas enjoy far more SEND provision than poorer areas.

Suggested reading

The invisibility of autistic girls

By Clara Törnvall

The differences are dramatic: in the richest decile of areas, 15% of children have a formal diagnosis of Specific Learning Difficulties, or SPLD (an umbrella term for learning difficulties that can only be diagnosed by specialists, such as autism, ADHD, dyslexia and dyspraxia); in the poorest decile, only 6% do. Those diagnoses often lead to extra funding: in wealthy areas, 22% of children with SEND have an Education Health Care Plan, compared with 15% in deprived areas. And funding can change everything for the parents of children with special educational needs. It means a teaching assistant whose sole job is to guide your child through school, the knock-on effect being that they’re then easier to look after when they get home; it means that if caring for your child prevents you from holding down a full-time job, you can supplement your meagre income with a carer’s allowance.

But perhaps more fundamentally, there are plenty of children who, without EHCPs, simply cannot participate in the otherwise mostly inflexible education that takes place in mainstream schools — which tend to be the only option. Blair’s drive for inclusion in mainstream education led to most special schools being shut in the belief that keeping children with their peers was better for them and society, and could be achieved by making allowances for them in the mainstream system. Inclusion became a buzzword, a moral good in itself; sceptics noted that scrapping expensive specialist provision happened to save the state a lot of money — but put children with more significant disabilities in a more vulnerable position.

Contemporary ideas of inclusion tend to gloss over the unappealing bits of disabilities, preferring to describe them as “superpowers”. The focus is on dyslexic inventors and autistic activists. You can buy ADHD self-help books about how we, the special ones, are in-the-moment hunters enjoying heightened sensitivity in a world of boring, plodding farmers — upon whom we rely to create the conditions for us to wield our talents. Your disability doesn’t have to hold you back. The more neurodiversity the better. Or so the story goes.

Suggested reading

Adderall is not an identity

By Oliver Bateman

It is a flattering story, if you’re privileged enough to be able to afford the support you need to prevent your neurodiversity disrupting your life — or if it didn’t disrupt it too badly in the first place. In other words, if your ADHD is more of a personality quirk than a disability. But ADHD, or autism, or whichever box he eventually gets put in, probably isn’t Josh’s superpower. He’s a lovely boy; right now, he’s also a liability. His mum can’t imagine him being capable of living independently without something terrible happening; she envisages caring for him for the rest of her life. There is grief in her vision of his future, and in her day-to-day experience of parenting a child who can scare his own siblings.

What does it mean to include Josh? Time, attention, and lots of structure provided by lots of different people. At the moment, he is getting none of that. As with most other parts of the NHS, mental health services are sleepwalking into an American-style two-tier system. Privately, some of us are able to afford neurodiversity labels, which are becoming a luxury. Meanwhile, the system is failing children like Josh.

But so is the prevailing narrative about disability, which is dominated by the voices of those who have managed to integrate into mainstream society. Platitudes about uniqueness aren’t enough: disabilities are called disabilities because they impair functioning, causing us problems. Overcoming those problems is hard, and often expensive, but more urgently it requires the problem to be recognised with an official diagnosis. If Josh is to get one, CAMHS will have to see him first.

Names have been changed.

I flick through the papers on my lap. There it is, at the bottom: “Autism, without accompanying intellectual impairment and without accompanying language impairment.” I read that I fulfil all seven diagnostic criteria for what used to be known as Asperger’s Syndrome. In fact, on one of the rating scales where a score of more than 77 points supports a diagnosis, I come in at 154. I feel I’ve done well, by being such a clear-cut case.

Then, my past unfolds. It’s like watching a film with a twist at the end. The signs were there all along: literal thinking, obsessive interests, anxiety, struggles with change. I have always known that I’m autistic. And yet, I haven’t had a clue.

The assessment that led up to my diagnosis lasted for three months. The psychologist interviewed me and spoke to my close family; I did tests and filled out questionnaires. The self-report inventories were a little antiquated in their view on autism, the psychologist told me apologetically. He was right. The questions were based on stereotypical male interests, such as playing boardgames, noticing number plates on cars, or collecting information about different categories of trains.

I envisioned the person whom the questionnaire was aimed at: an anaemic male gamer who rarely leaves his apartment, collects soda cans, can solve a Rubik’s cube in under a minute and monotonously drones on and on about the Cretaceous period. I thought about male geeks in popular culture, characters in TV shows like The Big Bang Theory or Atypical.

Until the Nineties, autism was regarded as a condition mostly found in boys — simply because all the early scientific research on autism was done on boys and men. This gender imbalance meant the diagnostic tools established were skewed. Doctors such as Hans Asperger noted that the boys he examined had limited, strong interests, and came to the conclusion that this was an autistic trait. Therefore, only “boyish” special interests came to be associated with autism.

In 1992, the Swedish child psychiatrist Svenny Kopp — one of the first authors to write a scientific article arguing that there were more autistic girls than previously believed — noticed that if a girl was obsessed with, for example, My Little Pony, her male colleagues wouldn’t recognise this as an autistic special interest. Instead, the girls were given other, less specific diagnoses like Semantic Pragmatic Disorder or “learning difficulties”. Autism was only recognised in a girl if the case was very severe.

Medicine did ask itself, at the time, why there seemed to be no girls with so-called “high-functioning” autism — that is, autism without accompanying intellectual impairment. The explanation, doctors decided, was that girls must have to experience a more extensive brain injury, a more profound intellectual disability, before they could develop autism. But Svenny Kopp didn’t buy it. Being female herself was pivotal to her scepticism, she says today. Her ground-breaking thesis, “The Girl Project”, showed that not all autism looks like the kind observed in boys. She is currently conducting a follow up-study of the girls she worked with in the Nineties, who are all now around 35. Her work has received an incredible amount of attention — and offered salvation to many autistic women.

Suggested reading

Who decides if you're mentally ill?

By Hannah Baer

Autistic women are often good at masking their social shortcomings, because from a young age girls tend to be drilled harder in social intercourse than boys. Masking happens unconsciously, and from an early age; children with autism withdraw and make themselves invisible, as they carefully observe the play and speech of their fellows, before attempting to copy them.

When I was a child, my peers sometimes resented me without me understanding why. I realised that I must have been misunderstood somehow, but couldn’t see when or how. A fear took root in me. Without knowing it, I studied social interaction through the books, TV shows, plays and films that I devoured. I began to minimise risks in my friendships by letting others make decisions, so that no one would get annoyed. I often found myself in constellations that may have looked like a trio from the outside, but were really two best friends and one backup: me. I listened, asked questions, said yes to every suggestion, expressed almost no needs of my own, kept confidences but rarely offered any in return, and became everyone’s most amenable friend.

Girls with autism are often interpreted as “sweet”, shy and acquiescent. They don’t take up space in a group or stir up trouble. By adulthood, their masking can be so honed that they become social chameleons, who blend in seamlessly in any company. But the long-term suppression of their own true self often leads to exhaustion and poor mental health. Those who seek out an assessment almost always have a history of anxiety and depression, my psychologist tells me. If you don’t interpret reality in the same way as those around you, of course you will feel unwell. Research published in the British Journal of Psychiatry states that, in the UK, “10% of those who died by suicide had evidence of elevated autistic traits, indicating likely undiagnosed autism”.

Suggested reading

Big Fertility profits from women's pain

By Victoria Smith

Nevertheless, moving through the world without masking at all is near-impossible for an autist. There would be too many conflicts and misunderstandings, as neurotypical people have a hard time grasping that not everyone is like them. In search of relief, as an adolescent I spent all my time at the stable. My relationship with horses felt peaceful and undemanding compared to my relationships with other people. I couldn’t decipher the codes, couldn’t understand what was implied. It was as though something went on between others that was imperceptible to me — something subtle and ever-changing.

The more “high functioning” you are, the easier it is to study expected behaviours, mask your autism and behave on the majority’s terms — in social relationships, in the schoolyard, and on the job market. After university, I transformed my special interests into a profession and started working in radio and television. There, communication was simpler; there were rules. You wrote a script before speaking and all you had to do was read it aloud. No one was allowed to interrupt. When the green light came on in the studio, the floor was mine.

But the better you are at “acting normal”, the less seriously you will be taken when explaining your difficulties. “Intelligence can compensate for so much,” the artist Linn, who was diagnosed at age 22, told me. The way her strengths have obscured her difficulties has been a constant frustration in her life. “If I hadn’t been so smart, they might have noticed something sooner. When others perceive you as intellectually clever, they struggle to understand that you can have all these problems. It doesn’t add up that someone who is good at thinking can fail so utterly at things that are easy for others.”

After my assessment, I searched for books on autism in grown women, but couldn’t find many. Most books focused on children and adolescents, but autism is not something you grow out of. You can get better at coping, but it can’t be trained away and there is no medication. It is a life-long condition.

And so, I decided to write a book to fill the silence, The Autists: Women on the Spectrum. I interviewed autistic women in Sweden, including Linn. Their stories echoed mine: growing up feeling different without understanding why; experiencing bullying in school and constant misunderstandings in communication with others; suffering from depression and anxiety as an adult; and then finally finding peace in being given the right diagnosis.

Suggested reading

Who decides if you're mentally ill?

By Hannah Baer

Autism has always been present in humanity, according to neurologists such as Oliver Sacks. But throughout history, the language used to describe autistic people has varied, from “withdrawn” and “eccentric” to “odd”. The earliest descriptions of what is thought to be autism date back to the 13th century, and refer to the Italian monk Brother Juniper, one of the Grey Friars in St Francis’s following. Of course, we can never be sure about a posthumous diagnosis, but scientists have researched the lives of famous historical individuals — using source materials such as diaries, letters, testimonies from relatives and medical assessments — and tried to determine whether they might have received an autism diagnosis had they been alive today. Women often mentioned are poet Emily Dickinson, philosopher Simone Weil and author Patricia Highsmith.

But autism as a concept wasn’t born until the early 20th century — and back then it only really applied to men. To have grown up with undiagnosed autism is to have suffered difficulties that didn’t exist. I close my eyes and rewind my own tape again, seeing the clues from my childhood and teenage years and life as a young adult. What if I had known sooner? How would my life have turned out? I tell myself that the alternative is impossible: during my childhood, female autists without intellectual impairment, as a recognised category, didn’t exist. No one could have given me a diagnosis. My life thus far is not a series of years lost. But still, I mourn not being able to decipher the signs before. I repressed everything that was true in me, and kept striving towards further defeat.

My diagnosis is the best thing that has happened for my self-esteem. After the assessment, I went from failed neurotypical to regular autist. I understood who I was, and the relief was indescribable. My anxiety receded, and I lowered my dosage of antidepressants. I started to like my quirky sides. I found the strength to say no to things I had previously thought I must do. I shrunk my life, peeling away things and musts, protecting everything that made me feel good. I became proud of my difference.

It’s a new year. One day when parents are invited to join the children in class, I visit my daughter’s school. I watch the children colour in drawings of animals. When the bell rings for lunch, we walk to the canteen, where chilli fish and boiled potatoes are on the menu. We choose the table in the farthest corner. Sitting there, alone, is a girl from another class. I take a seat across from her. On her plate are three pancakes. No toppings. She looks at me.

“I get to eat this because I’m autistic,” she says, and puts a piece of pancake in her mouth.

“Me too,” I say.

“So you think I may be delusional, or psychotic, for thinking it’s sex addiction?” She doesn’t seem to be trying to pressure me, she really wants to know. “I don’t think you’re delusional at all,” I reply. “I think you’re trying to understand yourself.”

Abby has good grades, some friends, an ex she still talks to, a few hobbies. She is nervous about her career (should she go to grad school?) and sometimes she feels sad or anxious for no reason. She is also fixated on the idea that she has a severe mental illness, possibly any severe mental illness. Having sat with her for many sessions, I am pretty sure she does not. But I also try, bearing clinical ethics in mind, to take her concerns seriously.

Abby is typical. Many young people I work with try to understand themselves (and often others) through the lens of mental illness. Typically they are focused on one diagnosis, but some, like Abby, are open to having several, many, or any. My co-workers notice it too. One colleague recently brought a question to our clinic’s staff meeting: “Has anyone else noticed a large number of students lately claiming to be on the autism spectrum, despite seeming to be… clearly not autistic based on clinical criteria?” Heads nodded. Why is it that so many young people are concerned that they are sick? And what is a mental health professional to do, in a culture where patients come in having already staked out their symptoms?

Suggested reading

The grubby truth about mental health memoirs

By Freddie deBoer

Several of my colleagues, in that meeting, suggested that teens had learned about the diagnosis they had adopted on social media. I was reminded of writer PE Moskowitz’s lamentation, last year, that mental health has become “Buzzfeed-ified”, resulting in a world where being ADHD versus being Bipolar is like being a Hufflepuff versus a Slytherin, or an Aquarius versus a Gemini. I’m not entirely convinced, though. People hear about all kinds of things on social media. To identify with what you hear requires particular conditions: you have to be searching for a convincing story to tell about yourself.

This story is about more than TikTok. The world of diagnosis is experiencing a crisis of confidence. The tools we use are somewhat reliable — we can throw the dart 20 times and hit the same spot, or 20 clinicians can meet the same person and identify that they may be “clinically depressed”. The question now is whether our tools are valid: is the bullseye actually where we think it is? If I’m debating with a college student about whether or not they have Major Depressive Disorder, I have to confront the fact that depression is not just one thing. My university students show me, over and over, that diagnoses of mental illness aren’t like medical diseases, which one either has or one doesn’t. A cluster of depressive symptoms will, in different people, have very different roots — some contextual, some biological, some behavioural. I may agree with other therapists that the patient meets the criteria for a given diagnosis, but we won’t necessarily be able to agree on what it means to have that diagnosis: where has it come from, how long will it last, what shall we do about it?

Part of the challenge lies in this very postmodern acceptance that there is no singular truth. But we do tend to end up using categories, and the ones we have currently are atavistic, more connected to the early pioneers of psychiatry than to up-to-date neuroscience. The still-common diagnosis of Borderline Personality Disorder, for instance, was constructed based on a supposed borderline between the neurotic and psychotic, which is now commonly understood as obsolete. There are myriad categories for psychotic disorders: schizophrenia, schizophreniform disorder, schizoaffective disorder, brief psychotic disorder, schizotypal personality disorder — to name just a few. Many date back to the 19th century, some are redundant, several are tough to differentiate. Some have also become politicised: during the US Civil Rights Movement, the label of schizophrenia was used to discredit black men as paranoid and violent (as Jonathan Metzl shows in his searing and meticulous history). This is just one example of how the instability of diagnostic categories stems from something far more complex than mere clinical incompetence; they are a vestige of culture and history, and they blur as times change. Psychologists and psychiatrists are so aware of this problem that it’s common, in academic spaces, to hear Plato’s phrase, “carving nature at its joints”, employed to question just how accurate our diagnostic categories are.

Suggested reading

How Big Pharma monetised depression

By Robert Whitaker

So why should we trust medicine to diagnose mental illness? Increasingly, we don’t. In the past, we assumed that someone would present with the question “what’s wrong with me, doctor”, and wait for a diagnosis to be handed down to them from a clinical authority. Without getting into the debate between gender critical pundits and trans liberation activists, one way in which transgender discourse has changed how we view mental health is the idea that one can self-diagnose. Part of the so-called trans tipping point is a new way of relating to medical authorities whereby patients, trans or not, come to clinics quite sure of what’s going on with them — and what they need.

This self-election is a particular sticking point in and out of the trans community. Do you have to medically transition to be trans? Do you have to have so-called “gender dysphoria” (a category recently renamed “gender incongruence”)? That these questions are even up for debate indicates a massive shift in our attitudes to diagnosis. And, critically, the centre of the debate is not in hospitals or universities but on message boards and in the writing of patients, particularly young patients, rather than clinicians.

The argument over transgender medical care often comes down to the idea that children, especially trans-identifying children, are somehow being victimised by the illegitimate or unethical authority of either pro-trans adults or gender critical adults. While some claim to be worrying about potential detransitioners, my instinct about many people’s underlying concern is the same as the one plaguing the discourse around mental health generally: who can take care of us? Who has our best interests at heart? Can we trust doctors? Does anyone really understand the boundary between sickness and wellness? The uncertainty about the answer to these questions makes almost all of us uneasy, driving us into polarised positions and moral panic.

Suggested reading

Can depression be cured?

By Ann Manov

It is tempting, especially for me as a mental health professional, to be anxious about and critical of the diminution of clinical authority. In the clinic, I frequently find myself confronted with the risks of handing the power of diagnosis to adolescents who are struggling with self-concept and inspired by two-minute confessional videos they’ve seen online. Still, when I consider the rustiness of our diagnostic categories and the ways mental healthcare, at least in the US, has been decimated by insurance companies and for-profit care, I am not sure that giving sole authority to clinicians has worked all that well either. In answering the question about who should be in charge of diagnosis, many people have good reasons for staking their positions. Many people have suffered because of inept psychiatry. But people self-diagnosing or rejecting diagnosis altogether may run into problems, too.

A paradigm shift is overdue — and appears to be beginning, though the exact shape of the future’s more democratic, more evidenced-based psychiatry is still nascent. Our ability to come up with new ideas and experiment with them will be critical. Recently the novelist Tao Lin wrote about autism spectrum disorder (ASD) that presents two radical ideas. The first is that he feels he was able to make himself “less autistic” through treatment, including recreationally using the drug MDMA. He does not describe lessening his symptoms, but rather lessening the disorder itself — flying in the face of clinical consensus that ASD is basically an unchanging brain disease.

Second, he raises serious questions about the pluralistic, inclusive, United-Colours-of-Benetton-esque view of neurodivergence, popular among the same teens filling social media with mental illness content from which my clients self-diagnose. The point is to accept and even celebrate disorders as a unique and valuable “part of you”. But Lin makes the case that there are chemical and industrial by-products that could account for the decades-long uptick in ASD, and that by uncritically embracing neurodivergence, we occlude the possibility of asking corporations and regulators to be responsible for what he believes is effectively poisoning people.

While I don’t agree with Lin word-for-word (I tend to think there are both advantages and disadvantages to pluralism, and I can’t speak to the science about the origins of autism), I did learn from his efforts to reframe these issues. His essay is a strong case for centring the voices of people who actually experience illnesses, rather than allowing the voices of clinicians to them drown out. Without listening to the people we diagnose, clinicians have time and again shown themselves to commit errors at best, and atrocities at worst.

Suggested reading

Dreams can save us

By Tao Lin

Still, I reluctantly defend my profession’s authority. Despite there being problems within the categories we wield, our knowledge — gained both from abstract research and from simply spending careful, attentive time with hundreds and hundreds of patients — is useful in making sense of the more acutely distressing parts of what we call mental illness. The future of mental health diagnoses will have to be a negotiation between clinicians and the people they seek to treat (as well as the social and cultural context that clinicians and patients co-inhabit, which plays a critical part in how we define and experience psychological variations which then get labelled as disorders).

It won’t be easy to reach a compromise between researchers, clinicians and patients. But possible new paradigms of diagnosis are starting to emerge. There is Nonlinear Dynamical Systems Theory (NDST), for instance, which models psychiatric issues the same way we model incredibly complex ecosystems or financial markets. Within this framework, something like bipolar disorder would have multiple interlocking roots, ranging from better-understood biopsychosocial factors, such as a person’s genetic vulnerabilities, to more postmodern considerations such as the culture of a given psychiatric hospital. The relationship of these factors determines whether the mind holds steady, collapses or glitches under certain kinds of stress; understanding the interplay, in all its complexity, promotes what we might call “dynamic stability”. A skyscraper moving gently in a mild earthquake is a good metaphor for how the mind can weather certain shocks if properly prepared. While NDST is not the sole answer, it is one useful framework for pinning down, or at least functionally describing, what a diagnosis is.

A crisis of authority is not a bad thing, especially if the status quo is dysfunctional. It does, however, create anxiety. A new patient in my office last week asked me if I could capture his distress in a diagnosis. I replied that it sounded like some of his symptoms were anxious, and some were depressive, but that I didn’t have enough information to make a clear categorisation, and that the category itself might leave something to be desired.

We talked about how it felt for him to hear that. He said it was uncomfortable, but he also ventured that, without a category to make meaning for him, he would have to make meaning out of his symptoms himself. That process is what my co-workers and I are trying to enable. The aim is to help young people interpret their experiences with curiosity — even if they come to us longing for the clarity falsely promised by our flawed diagnoses.

Campling moved six months later to a new mental health unit tied to a general hospital. This building seemed to embody a brave new chapter in the history of psychiatry as the huge old institutions began being emptied in Britain. The drive to shift their 100,000 patients into community settings had started in the Sixties as the counter culture confronted traditional institutions across society. Radical psychiatrists such as RD Laing — who described insanity as “a perfectly rational response to an insane world” — challenged the core concepts of control, while a series of scandals exposed the brutal realities lurking behind the locked doors of some state “care”.

Significant strides have been made since in unravelling the mysteries of the human mind. We have greater clarity on the corrosive impact of abusive or chaotic childhoods, along with deeper understanding why some people struggle to cope with life, spiralling into self-destructive behaviour and even suicide. Advances have been made in medical treatment, evidential insights gained into effective therapies. There is more openness on mental health and fewer taboos talking about such issues with celebrities, sports stars and even members of the royal family opening up about their trauma.

On the surface, it seems as if we have made great progress away from those dark days when we hid away disturbed people to suffer in hulking asylums on the edge of towns. But have we really? Campling is unconvinced. “Perhaps the truth is that severe mental illness is just as frightening, just as stigmatising, just as much a taboo as it has always been,” she writes in Don’t Turn Away, a superb account of her life on the  psychiatric frontline. “We do not seem to want to face the reality of the suffering of those with more serious mental health problems, nor to fund their care properly. It is easier to tranquillise, restrain, separate, lock them up or ignore them than it is to engage properly with their needs and their pain.”

She is right. I stumbled onto these issues while investigating the dehumanising detention of autistic people and citizens with learning difficulties, discovering they were being stuffed into secure psychiatric units due to the dearth of often-cheaper community services. Almost everyone accepts this is wrong — a shocking denial of human rights that tends to greatly intensify problems  — yet still thousands continue to be forcibly sedated, physically abused and locked in solitary cells in NHS-funded hellholes. Then the more I looked into our secretive psychiatric system, the more I saw similar issues of a struggling sector that is buckling under abuse, avoidable deaths and inadequate community provision while being milked by profiteering private firms.

Campling writes sympathetically on cases seen over her career, skilfully describing the complexities of dealing with damaged patients, the dilemmas of assessing risk and determining why some people enduring mental pain end up harming or killing themselves. Some stories are bizarre, some depressing, but all are fascinating.

The significance of her work, however, lies in questions raised over treatment of people with mental illness — especially the estimated half a million citizens with serious psychiatric conditions. Bear in mind Britain has the highest depression rate among children in Europe, along with one-third of the continent’s drug overdose deaths as citizens try to blot out their struggles and traumas. Our jails are clogged with autistic people and prisoners suffering psychiatric problems, many of whom really need support or treatment rather than incarceration. Others end up living on the streets. One study by the London School of Economics earlier this year found all these mental health problems cost the British economy £117.9bn annually.

Suggested reading

Stop weaponizing suicide

By Kathleen Stock

Yet our complacent society thinks it has learned the lessons of the past because a few prominent people talk more freely about anxiety and depression. While we may have shut the big asylums, abandoned use of straight-jackets and stopped dunking psychotic people in ice baths, there remains a striking lack of empathy for people with acute psychiatric conditions. Whatever politicians and medical leaders might claim, there is no parity of care between physical and mental health as services scrap for resources and reel under siege from citizens. Meanwhile, detention rates under mental health legislation have surged, more than doubling over the past four decades and rising faster than almost anywhere else in Europe over the past decade.

Campling details her long involvement in therapeutic communities, where patients “haunted by the past, terrified of the future” were empowered to take charge of their lives and trusted to run the unit — but as she points out, many months of intensive therapy in a residential home for unpopular patients with a history of self-harm is expensive and sometimes risky, even if it can provide a place that feels safe for them to confront demons. Instead, such community services have shrivelled, managers imposed flawed bureaucratic models of treatment — and the legacy is that doctors squabble to ditch the more difficult cases and patients need to be “waving an axe” to access help now, in the chilling words of one psychiatrist to me.

Therapeutic communities have been steadily reduced while crucial social care support systems have crumbled after local authorities bore the brunt of austerity. Day hospitals and day care centres have shut. Swaran Singh, professor of social and community psychiatry at Warwick University, said even Britain’s much-admired Early Intervention in Psychosis Service — which he helped introduce in south-west London soon after the turn of the century to deliver holistic care for conditions such as bipolar disorder and schizophrenia — have been cash-starved and dismantled. Other experts say Assertive Intervention Teams, which provide integrated models of care for long-term patients, are being decimated.

“In-patient care is now terrible,’ said Prof Singh. ‘The staff are demoralised and they rely on coercion rather than compassion and care.” And these problems are escalating: the mental health emergency among children has become so profound that it threatens the country’s prosperity, warned a devastating report by former children’s commissioner Anne Longfield last week.

Suggested reading

Mental illness doesn't make you special

By Freddie deBoer

Longfield demanded a £1bn boost for the overstretched system that is turning away sick children. Money is vital, but only part of the equation. The sums skimmed off into tax havens or to pay off debt-financing by some of the abysmal private firms indicate other factors are involved. These fat cats — now providing one in four NHS-funded mental health beds and close to half the spending on child and adolescent services — skim off hefty profits behind opaque corporate structures as overloaded health services send more and more sick citizens into their secure units. Often they are backed by financial wizards who see disturbed children, teenagers with autism, suicidal adults or elderly people with dementia simply as cash cows.

The Priory group is the biggest private mental healthcare provider, but has been criticised for failings in the care of 30 patients who died over the past decade, including the son of a friend of mine. Built up originally by a prominent Labour donor, it passed through a bank, private equity outfit and US healthcare giant before being sold last year for £1.08bn to a Dutch private equity operator. Yet why are many of the most problematic and high-risk patients dumped by the NHS on such badly regulated firms — in stark contrast to private subcontractors in physical care, entrusted only to carry out routine surgeries such as cataracts, hernia repairs and hip replacements rather than more complex procedures?

The answer betrays the lack of concern for people with severe mental health conditions, autism and learning disabilities. We spend £2bn a year on outsourcing psychiatric health services, yet the wider system remains shockingly inefficient as well as often inadequate. It is based on excluding people from obtaining restricted services, then limiting duration of any contact due to financial constraints rather than a focus on the best treatment. Even for children, there can be a wait of almost three years for outpatient services while fewer than a quarter are seen within the four week target — yet delays fuel anxieties and heighten any feelings of abandonment, failure or low self-esteem. “It is a terrible thing to say, but I have seen many people made worse when they try to contact mental health services,” concludes Campling. “We are so used to excluding people in this callous system that we hardly notice the impact any more.”

Others agree that the culture of mental healthcare in the UK has tilted to risk management over attempts to understand and address the patient needs. SP Sashidharan, honorary professor at Glasgow University’s Institute of Health and Wellbeing, said soaring mental health budgets are being soaked up by coercive secure units that simply control individuals in extreme distress. “This is a scandal. There has always been a conflict in psychiatry between control and care since sometimes people are locked up for treatment but the dial has shifted sharply towards control. The culture is all wrong now.”

He also fears rising budgets are being drained by “well-being” with surging demand for milder mental health concerns such as anxiety and depression. Yet even here, experts say patients can wait almost half a year to see a psychiatrist — and then simply get an online appointment. Often it is based on box-ticking risk assessments. Some trusts have even turned to use of psychiatrists based in India, paid to sit at their computer all day discussing problems with patients in Britain. Yet the one consistent finding in therapy is that success depends on strong relationships, the precious “therapeutic alliance” between patients and therapist.

Suggested reading

The dangerous side of Munchausen's

By Stuart Ritchie

There are glimmers of hope. One group filling the gap with low-cost counselling is Headstrong, a community-interest group that has adopted the Teach First model by offering cut-price therapy delivered by 500 trainee counsellors and psychologists who are supervised by 50 experienced practitioners. Or we can look to Trieste, the north Italian city that pioneered an alternative model of community-based psychiatric care, a humane system based on consensus, consultation, and patient rights rather than reliant on coercion, forced sedation and high-security fences. It is recognised as a world-leading model; I found it incredibly uplifting to visit.

Sadly, the Government last week rejected this approach that bans long-term admission of low-risk patients. So we struggle on with a dismal system that starts with general practitioners doling out too many drugs such as anti-depressants given pressures on their time and the delays to access therapeutic services. The pandemic has turbo-charged the problems and pressures, as highlighted by Longfield’s report.

State failures mean mental health concerns — especially those at the most serious end of the spectrum — are left untreated until they explode. Campling notes that even people requesting private therapy seem “increasingly desperate”, often after months waiting in vain for NHS services. She admits that despairing clinicians must often prioritise “one group of desperate patients over another” and argues that their role has become largely reactive, dealing with emergencies and people in crisis, rather than providing pro-active, therapeutic care that could reduce overall costs to taxpayers — as well as providing a more humane path for patients.

She concludes that the only hope to obtain treatment for some “severely-damaged, highly self-destructive patients” is to commit a crime, even if they are being abused by violent partners, pimps or predatory parents. This is such a damning indictment — and not just of a floundering mental healthcare system, which has moved less than we like to think from those days of abusive incarceration in giant asylums. It is also a savage condemnation of a selfish society that averts its gaze from so many of its most vulnerable citizens. The sad truth is that we have moved over the course of this doctor’s career from a system of shocking control to one of shameful neglect — and we all share the guilt in this failure.

Eloise is a champion of neurodivergence, an omnibus term that’s recently ballooned in popularity, which can include autism, anxiety, borderline personality disorder, or indeed any other psychiatric condition that’s hot right now. The term is designed for making sweeping pronouncements. Forget the fact that, say, autism and schizophrenia are so different that they have at times been described as opposite conditions. Forget the fact that saying you’re neurodivergent has as much medical meaning as saying you have a disorder of the body. The idea is that there’s a group of people whose brain chemistry differs, in some beautiful way, from some Platonic norm. And it’s an idea that’s taken on great symbolic power in contemporary liberal culture.

There is, for example, a thriving ADHD community on TikTok and Tumblr: people who view their attentional difficulties not as an annoyance to be managed with medical treatment but as an adorable character trait that makes them sharper and more interesting than others around them. (They still demand extra time to take tests, naturally.) It’s also easy to come across social media users who declare how proud they are to be autistic; I’m glad they’re proud, but their repetitive insistence makes me wonder who exactly they’re trying to convince, us or them.

Darker, there’s the world of “DID TikTok”. DID, dissociative identity disorder, is a profoundly controversial condition, once known as multiple personality disorder. Many serious experts question whether it exists at all; at the very least it’s incredibly rare. And yet thousands of adolescents have diagnosed themselves with the condition, and happily perform their various personalities for their social media followers, typically in ways that defy all established psychological understandings of the disorder.

Suggested reading

Autism isn't always a superpower

By Stuart Ritchie

Against this backdrop, Eloise is a marketing department’s dream come true: hers is a story of the young, beautiful, dysfunctional — and successful. Eloise is the perfect 21st-century woman, from a certain internet-enabled philosophy of human affairs. She is an admirer of witchcraft and believes that women have a mythical connection to water. She does a lot of drugs and becomes bisexual. She uses Tumblr and travels the world, vacationing in Lisbon and the south of France, and moves to Los Angeles to be an actor, taking care to embed that period of her life in a self-defensive patina of irony. She lives an enviable life of obvious socioeconomic privilege, which she does not have time to recognise, as she’s too busy cataloging her psychiatric maladies.

She crams them into every last anecdote: apparently nothing happens to her that she does not ultimately attribute to those maladies. Eloise’s love of swimming as a child is, for instance, laboriously explained in terms of her neurodivergence. I’m talking thousands of words. It seems never to have occurred to her that a love of swimming is not exactly rare among children, or that she doesn’t have to justify her joy at being in the ocean by making it “deeper”. Again and again, she holds perfectly mundane attitudes and behaviours up to the reader and says “Isn’t this special?”

The label of neurodivergence is so vague and capacious, pretty much anything can be pulled into its orbit and made “diverse”. There’s a meme that crops upon Tumblr, TikTok and Twitter that starts with “the neurodivergent urge to…” and is immediately followed by, well, just about anything a person does. Common examples include the neurodivergent urge not to reply to an email or to order food in rather than cooking what’s in the fridge.

Suggested reading

Mental health is a lucrative business

By Julie Burchill

Take Eloise’s nightmares. She has, at times in her life, suffered from debilitatingly bad dreams that made sleep a constant source of fear and pain. This sounds like an awful condition, and she deserves sympathy. But she gives the game away when she writes: “Maybe my relationship with dreaming wasn’t like everyone else’s.” Not like everyone else’s, no. But certainly like that of many people who suffer from recurring and terrifying nightmares. Eloise writes that, according to the Mayo Clinic, nightmare disorder “only affects around 4-5% of adults, which shocked me: did adults really not have nightmares?” It’s as if she genuinely does not know the difference between 4% and zero.

It is perhaps comforting to see every last detail of one’s life as the product of some uncontrollable force. “I am this way because I was born this way,” Eloise writes, in a remarkably bald denial of personal responsibility. As a pawn of the various interior forces that do combat in her brain, she is adamant that there is nothing wrong with her, that her suffering is all in service to some deeper way to live, and that she is proud of the very conditions she asks us to treat as a perpetual get-out-of-jail-free card for her behaviour.

The implication is that the neurodivergent might just be better than other people. As with introverts, social media users have developed a discourse around neurodivergence that is nakedly self-celebratory, a bragger’s genre. Eloise has clearly endured a great deal of hardship, but like her culture she seems to feel that this hardship can only be given meaning by being woven into a journey of self-actualisation. Eloise writes that her life is “underpinned and ultimately made whole by obsession”. Can you imagine a sadder statement: an adult telling you that there is nothing to distinguish her or give her value but her psychiatric conditions, conditions she shares with millions of others?

Diagnosis is the Holy Grail of the neurodivergence narrative. Eloise fixates on hers and its quasi-mystical powers. No reader could doubt that her problems are real, but she seems to have treated getting diagnoses like a consumer on Amazon. She states flat out, on several occasions, that she went shopping for an autism diagnosis, went to doctors with the express intent of wringing one out of them. There was a time when self-diagnosis was understood to be unhealthy, and perhaps embarrassing, but this is a brave new world we’re living in now.

Suggested reading

Melancholy saved my life

By Horatio Clare

Once enough people insist on mental illnesses as upbeat and fashionable lifestyle brands, then any of us who oppose it are guilty of the most grave sin of all, the sin of perpetuating stigma. It’s stigma to call autism a disorder, despite the fact that it renders some completely nonverbal and unable to care for themselves; it’s stigma to suggest that someone with ADHD bears any responsibility at all for problems at school or work; it’s stigma to speak the plain fact that people with psychotic disorders sometimes commit acts of violence under the influence of their conditions. It’s stigma, in other words, to treat those of us with mental illnesses as anything else than wayward children.

Stigma, that cartoon monster, has never been in the top 100 of my problems in 20 years of managing a psychotic disorder, but never mind; stigma is the ox to be gored in contemporary pop culture, and so we must fixate on it to the point that we sideline the health, safety and treatment of those with mental disorders.

What I find tragic about those who buy into the neurodivergence narrative is that they become their illnesses. And yes, there are alternatives. Eloise and people like her seem never to consider one of the possible ways that they could have dealt with their myriad disorders: to suffer. Only to suffer. To suffer, and to feel no pressure to make suffering an identity, to not feel compelled to wrap suffering up in an Instagram-friendly manner. To accept that there is no sense in which her pain makes her deeper or more real or more beautiful than others, that in fact the pain of mental illness reliably makes us more selfish, more self-pitying, more destructive, and more pathetic. To understand that and to accept it and to quietly go about life trying to maintain peace and dignity is, I think, the best possible path for those with mental illness to walk.

But in this culture, all must be monetised, all must be aspirational, anything can be marketed. Eloise lacks the self-awareness to ask whether there’s something exploitative and ugly about turning psychological illness into fodder for soap opera and motivational posters. Again and again in this book, Eloise gins up the kind of statement on mental health that you might find in an Instagram meme, wedges it awkwardly into some prosaic story about her youth, and then skips away. At one point she mocks “Airbnb-style Live Laugh Love signage”, and I could only think, you’re writing a book filled with it.

Suggested reading

The empty promise of pop psychology

By Sarah Ditum

The most real, most human, most honest, and most humane part of Eloise’s book is something she wrote in a journal in 2009, when she was a teenager:

I fear my mind, as one single assembly by one fireman on fire safety in primary school caused this deep-seated fear. That shows the true extent of my mind’s power over me. Although these things are unlikely to happen, just yet, I fear every one of them one day. I don’t need a doctor to tell me that is a problem. But I want, so badly, to get better.

This is what it’s actually like to have a mental illness: no desire to justify or celebrate or honor the disease, only the desire to be rid of it. But the modern conception of neurodivergence (and disability activism generally) wants to have it both ways. Sometimes, people would prefer for you to think of their conditions as debilitating hindrances for which they may demand special dispensation. And sometimes they would like them to be seen as positive personality quirks that make them unique.

It is hard to witness the damage that has been done to this young woman, by a culture that insists she views her suffering as part of a beautiful journey. Today’s activists never seem to consider that there is something between terrible stigma and witless celebration, that we are not in fact bound to either ignore mental illness or treat it as an identity.

Were we wiser and more serious, we might be able to see psychiatric disorders as both natural and lamentable, as beyond the control of the individual but still within their responsibility. We would have sympathy for those who suffer from them, but recognise that sympathy only accrues to those whose conditions are unfortunate, unhealthy. We might be honest and say that, yes, it’s bad to be afflicted with psychiatric disorders.

We might, then, have the courage to say that mental illness sucks, that there’s nothing good about it, that the efforts to bend it into some superpower of greater creativity or deeper living is sour grapes from those who can’t escape. We might help people like Eloise, rather than celebrating them as self-actualised girlbosses. We might have the wisdom to ease her suffering, while we patiently tell her that there’s nothing beautiful about it.

One autistic boy, just a few years younger than me, was particularly challenging to work with. He didn’t talk, and had only very basic non-verbal methods of communication, like tapping his head to indicate he wanted something. He was doubly incontinent, and furniture and objects in his room had either to be bolted to the floor or only left with him for a brief time, or they’d be torn to shreds. Even minor changes to his daily routine caused extreme stress, and he’d hit, scratch, or bite anyone within reach.

Thinking about the fleeting moments where he’d hug his mother, or the eventual progress he made in some areas, like learning when and how to go to the toilet, still brings a lump to my throat. But the general memory I have of his autism is one of suffering — it led to daily fear and anxiety for him, caused endless worry and heartache for his family, and (vastly less importantly) left me and my colleagues bruised, bleeding, and scarred at least a few times each week.

More from this author

Don’t trust the psychologists on coronavirus

By Stuart Ritchie

Since then, a movement has sprung up around the idea that “neurodivergence”, which can include autistic traits, should be celebrated, not treated as an illness. It’s an attitude that’s liberating for many. After all, autism is a spectrum — indeed, in the psychiatry manuals it’s officially called “Autism Spectrum Disorder”.  In my next job, I found myself regularly encountering people right at the other end of that spectrum: I went off to get a PhD in science.

In any scientific field, you’re surrounded by people who the autism expert Simon Baron-Cohen would call “Extreme Systemisers” — people with a penchant for — indeed, a preoccupation with — spotting patterns. Although not all Extreme Systemisers are autistic, Baron-Cohen argues that there’s a substantial overlap. It’s these kinds of people — in the past they’d be referred to as “high-functioning” — that campaigners for neurodiversity are wont to reference.

Extreme Systemizers — or, at least, the mechanism in their mind that makes them systemise — make the world go round, according to Baron-Cohen’s latest book, The Pattern Seekers (the subtitle for the US edition is How Autism Drives Human Invention). The book’s thesis is that, sometime between 100,000 and 70,000 years ago, the human brain evolved a “systemising mechanism” that allowed us to reason in the following way: if something is a certain way, and something changes, then we get a certain result. That seemingly-simple logic — that focus on understanding systems — is at the root of the human capacity for science, invention, and even art and music. Other animals don’t have the systemising mechanism, which explains why — despite being able to use tools and sometimes solve impressively-difficult puzzles — they don’t experiment or invent things: they’re essentially “system-blind”.

Suggested reading

'Eugenics is possible' is not the same as 'eugenics is good'

By Tom Chivers

Baron-Cohen goes on to argue that those with an overactive “systemising mechanism,” which shades into autism, have had an outsize impact on the development of society and culture. Linnaeus (who obsessively categorised every species of animal), Thomas Edison (who spent his childhood reading every single book in the library, in shelf order), and Glenn Gould (whose compulsive and meticulous piano practice routine is well-known) are all, Baron-Cohen says, examples of Extreme Systemisers.

Extreme levels of systemising, according to Baron-Cohen, are usually antithetical to high levels of empathy for other people. His scheme of five “brain types” is a little over-simplified and arbitrary (the real, messy world isn’t really amenable to categories with bright lines between them), but it helps him illustrate how high levels of systemising might go along with social problems, and often manifest as autism. For instance, a fixation on identical daily routines can, as we saw above, create real problems in someone’s life. The book ends with an appeal for neurodiversity — arguing that there are many different types of brain out there, each with something to contribute, and we should ensure that everyone, including the extreme pattern seekers, can reach their potential.

Another such pattern seeker is Camilla Pang, a biochemist and the author of Explaining Humans, which just won the Royal Society Science Book Prize for 2020. Pang herself has a diagnosis of Autism Spectrum Disorder, as well as Attention-Deficit Hyperactivity Disorder and Generalised Anxiety Disorder. She used the “outsider” perspective she gained from growing up with these conditions to write a kind of scientific self-help book for those who have trouble fitting in. Pang writes about how scientific principles can help understand the messy, chaotic world of human relationships and life in general: for example, the functions of different kinds of proteins are a bit like those of people with different personalities; the workings of machine-learning algorithms can help us to make decisions; and learning about thermodynamics and entropy reminds us that true perfection is never attainable.

Perhaps unexpectedly for someone so motivated to understand how humans work, Pang shows absolutely zero interest in psychology research. As a psychology researcher myself, I found this oddly refreshing. Frankly, we’ve had enough of books that take shaky results from psychology studies and spin them into a “this-one-thing-will-change-your-life” message. I’d rather consider an interesting parallel between anxiety and the refraction of light than an over-generalised result from a tiny sample of university students.

Suggested reading

The truth about the female brain

By Saloni Dattani

If anything, Explaining Humans is more like a text from (perhaps appropriately) the Humanities: noting similarities and drawing analogies, rather than using scientific data to explain human behaviour directly. This kind of analogy-to-science reasoning can go too far — its nadir being the philosopher Jacques Lacan’s infamous analogy between the square root of minus one and “the erectile organ” — but outside of a couple of rather tenuous links, Pang does an impressive job of finding more-than-superficial similarities between the laws of nature and the “laws” of human beings (incidentally, readers who like this kind of thing will enjoy the superior — but more complicated — book Algorithms to Live By).

Baron-Cohen would surely approve: it’s the kind of creative, analogical reasoning displayed by Pang that’s part of his “systemising mechanism”. Just as Baron-Cohen urges us to be more understanding of neurodiversity, Pang ends with a plea for those with neurodivergent brains never to “apologise for being yourself”. Throughout the book she repeats that her autism and her ADHD give her a unique view of the world and made her who she is today, referring to them as her “superpowers” — the same word Greta Thunberg used to describe her Asperger’s Syndrome (a condition which, by the way, is now technically subsumed under the umbrella title of Autism Spectrum Disorder). In one interview, Pang even stated that “sometimes I wish I was more autistic.”

No doubt both Pang and Baron-Cohen’s books will be uplifting and inspiring for those systemisers who feel all at sea when it comes to human interaction. All I ask is that, in our understandable desire to focus on the hitherto-forgotten talents of those with neurodivergent brains, we don’t forget the plight of those on the other end of the spectrum. Somewhere between thirty and forty percent of people with autism also have a learning disability, like the boy from my old job. Those with lower levels of functioning might never produce a breakthrough invention, or come up with a quirky way of explaining humanity using science. But they deserve no less of our attention, no less of our support, and no less of our empathy.

Educating people to avoid such insensitivities is hardly unreasonable; but there are good ways and bad ways of doing so. Earlier this year, staff at Oxford University were advised that an example of “everyday racism” could include avoiding eye-contact when talking to someone. The university subsequently apologised after it was pointed out that this advice discriminated against autistic people who can find face-to-face communication uncomfortable.

An unfortunate one-off event? Not according to Geoffrey Miller who, in an essay for Quillette, argues that university ‘speech codes’ are making life difficult, if not impossible, for people with autism and other non-neurotypical conditions:

“Ever since the Middle Ages, universities have nurtured people with unusual brains and minds. Historically, academia was a haven for neurodiversity of all sorts. Eccentrics have been hanging out in Cambridge since 1209 and in Harvard since 1636. For centuries, these eccentricity-havens have been our time-traveling bridges from the ancient history of Western civilization to the far future of science, technology, and moral progress. Now thousands of our havens are under threat, and that’s sad and wrong, and we need to fix it.”

Miller is certainly not arguing that blatant racism or sexism should be excused in some individuals. Nor is he suggesting that people with “Asperger’s, bipolar, Tourette’s, or dozens of other personality quirks or mental ‘disorders’” are racist or sexist as a result of their neurological make-up. Rather it’s that they can find it harder to navigate the linguistic sensitivities that are now ‘policed’ with such vigour on campus:

“Here’s the problem. America’s informal ‘speech norms’, which govern what we’re allowed to say and what we’re not, were created and imposed by ‘normal’ brains, for ‘normal’ brains to obey and enforce. Formal speech codes at American universities were also written by and for the ‘neurotypical’. They assume that everyone on campus is equally capable, 100% of the time, of… Using their verbal intelligence and cultural background to understand speech codes that are intentionally vague, over-broad, and euphemistic, to discern who’s actually allowed to say what, in which contexts, using which words…”

For instance, there are good reasons why the phrase ‘person of colour’ is considered acceptable and ‘coloured person’ isn’t; but choosing the right one requires communication skills that not everyone has in equal measure.

As speech codes become ever more complicated and the number of people you can offend multiplies, avoiding transgression becomes increasing difficult. That might not matter if the worst that could happen is that you’re taken aside for a ‘quiet word’. But as demonstrated by the cases of Matt Taylor or Tim Hunt, the worst that could happen includes a media witch-hunt, public humiliation or even the loss of your job.

Beyond the headline cases, Miller says there is a wider “chilling effect” on campus life:

“…neurodiverse academics may withdraw from the social and intellectual life of the university. They may avoid lab group meetings, post-colloquium dinners, faculty parties, and conferences, where any tipsy comment, if overheard by anyone with a propensity for moralistic outrage, could threaten their reputation and career…

“This withdrawal from the university’s ‘life of the mind’ is especially heart-breaking to the neurodiverse, who often can’t stand small talk, and whose only real social connections come through vigorous debate about dangerous ideas with their intellectual equals. Speech codes don’t just censor their words; they also decimate their relationships, collaborations, and social networks.”

Great job everybody!

(That’s sarcasm by the way).

(And irony).