SINGAPORE: One morning in 1947, deep in rural Germany, a six-year-old Uta Frith walked herself to her first day at primary school. A school inspector welcomed the new cohort by asking who among them was the cleverest. Frith stepped forward. Everyone laughed but her extraordinary academic career would prove her right. Arriving in London in its full 60s swing, she studied psychology at its University College and within a few decades was a leading expert on autism and was helping to build the theory of the “autistic spectrum” for the neurodevelopmental variation that affects communication and interaction.
A year after becoming a dame in 2012, she received the still greater honour of being a guest on Desert Island Discs. There she was hymned not only for setting up a network for women scientists called Science and Shopping but for debunking the notion that bad parenting by “refrigerator mothers” caused their children’s autism. Look instead, she said, at the genetics.
But being brilliant does not make you always right. This week Frith hit the news for an essay in Psychological Medicine that insisted far too many people are being diagnosed with autism. Primary care records, for instance, clocked an almost ninefold increase in new cases from 1998 to 2018. Some in the field were not happy. The National Autistic Society’s Mel Merritt called it an “unhelpful and false choice to pit autistic people against each other”. But when Frith also said that the autism spectrum had become so wide that it had “collapsed” to the point of “diagnostic meaninglessness”, she appeared to be arguing not merely against the consensus but with her earlier self.
The professor and I are having afternoon coffee in the exquisitely cultured house with vertiginous bookshelves she has shared for more than 30 years with her husband, Chris Frith, a fellow neuroscientist. (They celebrate their 60th wedding anniversary this month.) If there is a spectrum, she is not on it: she is outspoken but also warm, funny, kind. She has baked us a marmalade cake and gives me a copy of Two Heads, a 2022 comic book she wrote with Chris and one of her two sons: three quarters brain science, one quarter joint memoir.
It was here 13 years ago, I tell her, that she raised with a previous interviewer the possibility of autism’s overdiagnosis. “Really?” she says, surprised, in her distantly German accent. “It has been very gradual for me to get onto this line that I am on now. It has not come overnight and I’ve not spoken out publicly for a long time but I really thought, this has gone too far.”
The only thing she would qualify from 2013 is this: the problem is not so much overdiagnosis, which suggests perfectly normal people are being told they are autistic. It is misdiagnosis: something is making life hard for these people – it is just not autism.
Two years ago she gave a lecture in Denmark that covered many of the points she is making now. Then there were nearly 190,000 people in England awaiting an autism assessment, a queue that would stretch from London to Brighton. But why, she asked, did people crave this diagnosis? What if society’s greater appreciation of diversity and inclusion, the increased media coverage of autism, poorly constructed online diagnostic questionnaires, attractive autistic savants in dramas (from Dustin Hoffman in Rain Man in 1988 to The Bridge’s Saga Noren, from 2011 to 2018), and the insistence that autistic people were as “normal” as neurotypicals had prompted the leap in demand? After all, the diagnosis of autism in children aged zero to five was showing a much less noticeable rise.
But, I noticed, she phrased her points then as mere possibilities. She says she had to be cautious. “There are people in audiences who would feel really hurt. And I don’t want to do that. If I had just my colleagues to talk to, I would be less cautious, but even then I know that many colleagues would not agree with me.”
At 85, she is long retired. “It makes an enormous difference that I’m no longer beholden to certain funding agencies or need to get grants and need to be in with the charities.” She says her younger colleagues who have talked to her recently say they feel they can’t say anything about it. “Which is sort of sad, isn’t it?”
She gets social media abuse but people are polite when they write to her. “Actually I’ve had a few cases – still very few – but very interesting people who have written to me and said, ‘I’ve been diagnosed in adulthood or whatever as autistic and now I think that was wrong.’ They were desperately wanting diagnosis, felt very relieved and then at some point afterwards felt it wasn’t right and now have a much more sceptical outlook. I wonder how many such people exist.”
What she knows for certain is that the teenagers and adults who now call themselves autistic barely resemble the “beautiful but so different” autistic infants Frith first encountered in her career, children who would always struggle to surmise what a person they were talking to was thinking because, in the jargon, they lacked “a theory of mind”.
I mention the naturalist Chris Packham, whom I interviewed a few years ago. He was diagnosed in 2005 with what was then called Asperger’s syndrome. “He cannot be autistic in my opinion,” Frith interrupts. “It is just absolutely absurd to me that somebody who can communicate as brilliantly as he does – that is what I call a blatant contra-indication.”
But talking to him, I say, I found him a bit literal-minded. If you pay him a compliment, he takes it at face value. “It’s part of that charming personality. I mean, he probably is a bit obsessive,” she says. He may relate better to animals than people? “I think we could just say people are animals too.”
(I later email Packham to warn him about Frith’s comments. He thanks me for the “heads-up”.)
I wonder whether the American Psychiatric Association removing Asperger’s syndrome – sometimes seen as “autism lite” – from its catalogue of mental conditions in 2013 encouraged the rise of autism diagnoses. The main reason for the APA’s decision, she says, was a drive towards simplicity: “Let’s have just one category.” From then on the condition was divided not by symptom but by the levels of support those with it seemed to need. She thinks the next edition of the association’s manual will probably divide autism into subgroups.
But some now defined as autistic may not fit any subgroup? “Well, if it was still called autism, at least it would have to be type B or something,” she replies, conceding a little ground.
For many, she argues, autism is welcome as the least worst diagnosis. “There is a diagnosis known as borderline personality disorder and it’s really hated by people who get it. Quite a lot of them are now diagnosed autistic and they say, ‘Thank God!’”
Some have wheeled through other diagnoses – anorexia, perhaps, or obsessive compulsive disorder – and for them being called autistic instead is a relief: it feels authentic and addresses their whole selves. “It really is quite reminiscent of 19th-century accounts of religious conversions. You know, where people say, ‘I was this lost soul but now I’ve seen the light.’”
So it’s like me saying, “I am so happy. I have transitioned and really am a woman”? “Yes, a bit like that. If it makes you happy, why should I contradict you? That kind of thing. But it’s not science.”
I am reminded of interviewing Holly Smale, the author of the Geek Girl books. Having been misdiagnosed as bipolar she was delighted with the later diagnosis of autism. “Autism is the answer to the question I have been asking my entire life,” she wrote in The Times. “It is not something to be ‘fixed’ or ‘cured’. My brain is simply wired differently.”
Might not autism explain why Smale felt depressed and was unable to sustain relationships? “But how would it explain this? This is to me a big mystery. But it does give some kind of privileges. They can tell other people to ‘jolly well take account of my disability’ – except of course they don’t want to call it a disability. It’s ‘my difference, and you should be nice to me’.”
Individually, Frith would not wish to strip people of their diagnoses. “I don’t want to do that if the pure fact of a diagnosis can make you feel so satisfied and happy. But that’s something that needs to be studied. I’m of course wondering how long that feeling lasts. We don’t know.”
Frith takes part responsibility for drama’s flattering representations of autism in recent decades. In her 1989 book Autism: Explaining the Enigma, she proposed that Sherlock Holmes was a fictional prototype of an autistic person. Twenty years later came the BBC’s spectrum-hugging Sherlock.
Are there any good autistic detectives in real life? “Absolutely not.”
As we talk, Chris Frith sits by his wife, occasionally joining in. They have a little discussion about when brain science actually began. In her view Freud was a diversion, a neurologist who turned to therapeutic theory because his era lacked the tools to do the job. “We now have these [computer] imaging methods. But how ignorant we still are in relation to neuroscience! It really doesn’t go much further back than 150 years or so. Would you date it further back?” she asks her husband.
“Well, I’m sure the term neuroscience is even more recent than that. Doesn’t it start with [David] Hubel and [Torsten] Wiesel in around 1960?” he replies.
But, I check, having just listened to her Desert Island Discs, we do at least know – don’t we? – that childhood autism has a genetic cause, a de novo mutation (a new one, not inherited). “Except that we don’t have the proof of it. It’s a work in progress,” she confesses.
The mind remains a mystery, we agree, she from a position of having studied it all her adult life. “I think it’s very good that people are interested. I think a discussion of these problems would be a good thing and I’m not wanting to say, ‘I’m right and that’s absolutely the way things should be going.’ I think I would be humble enough to know that science is always uncertain.”
And she admits, as an 85-year-old who is only marginally less assured than her six-year-old self, “I have changed my mind. There might be much more refined ways of looking at autism; a rather holistic way, perhaps. So I would say: yes, I might be proved wrong. But there we are. That’s science.”