Uta Frith

Golden oldie who likes Cognitive. Social. Neuroscience. But not only.

[Naomi Fisher @naomicfisher]

This time of year, we put our 16-year-olds through a coming-of-age ritual. We make them sit in rows and write down things they have spent the last two years trying to memorise. We pit them against the clock, and prevent them from talking to each other. We tell them that this is the most important thing that they will ever do and their future life depends on it.

We don’t just do this once. For most of them, we make them sit in rows and write things down between twenty and thirty separate times in the space of about six weeks. Maths, English, History, French, Biology….Again and again, they have to keep at it. Each time, we tell them how important it is and they better not have an off-day or be ill.

Then we take their papers and we rank them. For some, the result will be accolades and glory. For others, failure and retakes.

We know for sure that this will always be true, because these rituals that we call exams are designed to rank them. A third will always fail. There would be no top grades if we didn’t also have the bottom. It isn’t possible for them all to pass.

And yet, every year, we talk as if this was not true. We pretend that it would be possible for them all to succeed, if only they and their teachers worked harder. Politicians talk about raising standards and accountability. We pretend that the problem is them not working hard enough, not an exam system designed so that hundreds of thousands fail. We blame them, not the exams.

For the truth is that we have a coming-of-age ritual for our teenagers which involves a third of them being told they haven’t met the grade, that they are not good enough. We launch them into adult life telling them that they will carry the stigma of not understanding quadratic equations for ever. We put them all through intense stress, and then when some of them cave in we say they have anxiety and send them to see a therapist.

And then we’re surprised when many of them say they just can’t carry on, that they don’t see the point. They don’t see potential in the future for themselves.

We need to take a step back and ask ourselves why we do this to our teenagers. For the problem isn’t our young people. It’s not their fault that a third of them fail and many are chronically stressed. The problem is what we make them do. We’ve designed a coming-of-age system with a very high cost in human misery.

Every year a new crop of teens will come of age, and despite their distress we just push them harder. We need to ask ourselves whether this is really the best we can do for our teenagers. We urgently need to think again.

[Naomi Fisher @naomicfisher]

Uta Frith is speaking again about the need for subgroups in the autism spectrum. To hear her in person, listen to our podcast interview. https://t.co/0IKDtt2RIZ

[Uta Frith @utafrith]

Very glad you’re enjoying this book. It doesn’t look like it but it’s serious science.

[AlexEarlyYears @EarlyYearsAlex]

I’ve not shared a book I am reading for a while, I should as have enjoyed so many recently. Only half way through this from @utafrith & enjoying it so much, guiding me through a complicated subject in a digestible way

[Awais Aftab @awaisaftab]

When patients ask, “What disorder do I really ‘have’?” the honest answer is usually more interesting and messier than a single label. I wrote for the @nytimes on what I wish people understood about diagnoses and the nature of mental health problems.

https://t.co/ua2g6PzeAZ

[Naomi Fisher @naomicfisher]

When someone tries to expand the parameters of a condition in order to create an audience for themselves, that’s called disease mongering.

When someone frames common human experiences as dysphoria, or disorder – in order to sell you something – that’s disease mongering. It is happening all around you.

Neurodivergence is fertile ground for disease mongering; because it’s so easy to claim that common human experiences are part of neurodivergence. Once that is done, then people can sell books, online content and live events on that basis. They collect followers. Their content is shared millions of times. Social anxiety, burnout and rejection sensitivity have all gone through this process. They used to be experiences shared by many of us. They have been claimed as part of neurodivergence by online influencers – and then influencers develop niches and sell stuff to their audience on this basis.

Things that sound psychiatric but aren’t (like RSD) are particularly prone to this. No one can tell a person they do not have RSD, because there is no official diagnosis or disorder. No one can say that something is misinformation, because there is no way to identity correct information. People say that content about RSD is so relatable – because it is. It’s so common to be highly sensitive to rejection that to define it as a ‘dysphoria’ seems like needless pathologising.

Note: I am not dismissing anyone’s experience of rejection sensitivity. I am not invalidating anyone’s experience of neurodivergence. I’m saying that there are people out there who have an interest in convincing as many people as possible that (for example) they have RSD, so they become a market for their products.

There’s a name for this, and it’s disease mongering. It often pretends to be raising awareness, but it’s all about influence and sales.

[Polina Bayvel @bayvel_p]

And here is the film about the extraordinary Hertha Ayrton (nee Phoebe Sarah Marks, a Jewish girl from Portsea) - the first female electrical engineer IEE member, and the first woman to be nominated as Fellow of the Royal Society: https://t.co/VUT38fz3WX

@RAEngNews

[Abigail Marsh @aa_marsh]

Few people would blame parents of kids with neurodevelopmental disorders like autism or schizophrenia (anymore!) for kids' symptoms. But parents of kids with psychopathy--which is also an NDD--get blame and shame, not sympathy. @PsychToday @WinifredRule https://t.co/W5vLiFzhEI

[Naomi Fisher @naomicfisher]

We started a podcast with the deliberate aim of talking to a range of voices. We had had enough of the polarisation and mudslinging of social media.

We went to significant effort to seek out different perspectives. Our criterion was not whether they agreed with us, but whether we thought they would have an interesting angle to add. We made it clear in the podcast that the views of the guests did not necessarily represent those of the hosts.

From the start we wanted this to be a space where people explained their ideas so that the listener could understand and make up their own mind. We wanted to model openness and tolerance of disagreement. We wanted to do something different to what happens on social media.

When we released our first episode, with Dame Uta Frith, we quickly discovered why these conversations are impossible. She said things which some people disagreed with, and as a result they blamed us for platforming her. There was little reasoned discussion of her ideas, and a lot of flinging of mud. People I had worked with and who I respected recorded videos about the harm I was causing and how disappointed they were. Others made huge assumptions about what we, as interviewers thought, including dismissing the suffering and experience of others and having a right wing agenda to cut benefits. Things that Uta had not said were attributed to her, and by association to us.

Immediately, our other podcast guests started to withdraw. People whose work I really respected and who had fascinating things to say backed away, scared perhaps that they too would be tainted by association. Their viewpoints were very different to Uta and that is exactly why we asked them. Just like when we interviewed Uta, we wanted to really hear and understand what they had to say. That won’t be possible now.

There’s something going on in the online autism world, and it’s not healthy. Many people are terrified to say what they think, for fear of the sort of thing that has happened to me this week. Useful and valid viewpoints are not being heard. Self-censuring is rife. Online shaming has been normalised. As a result, the growth of knowledge is stifled.

If you disagree with what Uta Frith said and you’d like to come on our podcast, please email me. We’d love to have you.
https://t.co/NCV214Mcz2

[Naomi Fisher @naomicfisher]

A study which uses an online survey to recruit participants (as this one did) will not include a representative sample of autistic people. Sweeping claims like this should not be made without a representative sample and careful matching.

This illustrates the problem with the over-inclusive autism spectrum. It is assumed that a group of people who completed an online survey represents all autistic people when they do not.

This research does not show that self-identifying adults have higher unmet needs and unemployment than diagnosed people with high support needs and intellectual disability. Their needs are erased by this research.

[Naomi Fisher @naomicfisher]

A recent review of 389 studies showed that masking/camouflaging lacks conceptual validity, that the research has been mostly carried out on late-diagnosed females and that masking hasn’t been shown to be autism-specific. A large number of studies is not the same as high quality research. https://t.co/GpNRMgRLNC

[Naomi Fisher @naomicfisher]

Masking has no scientific validity, says Uta Frith, after sixty years of autism research. Yet masking resonates with so many autistic people. It feels true and it feels like an explanation.

Both of those things can be true at the same time. Masking does resonate with many people. It describes something important about their experience. In fact, in my clinical experience masking resonates far beyond autism. It resonates for those who are socially anxious, those with OCD and those with depression. It resonates for people living in cultures they were not born into. It resonates for people going into unfamiliar or challenging environments. It resonates for many women in male-dominated workplaces. Whether or not they are autistic.

And this is one of the problems. Masking is talked about as if it’s specific to autism, but the research hasn’t been done to demonstrate that. To draw that sort of conclusion, you need large scale quantitative research on representative samples. You need a carefully chosen comparison group. Online survey studies are unlikely to fulfil these criteria. Lived experience isn’t enough - no one can conclude from their lived experience whether something is autism-specific or not.

There are other scientific problems with the idea of masking. It means different things to different people, and it is highly expansive. It is used to explain many different experiences - and researchers have found that there is no agreed upon definition.

A third scientific problem with the concept of masking is that the evidence base is unrepresentative. Most of the research has been done on late-diagnosed females without intellectual disability - but it’s been assumed that this generalises to all autistic people. We simply don’t know if this is the case.

There are other problems with the concept of masking, but these are three key issues identified in a recent review of the literature on masking/camouflaging. They looked at 389 studies. Number of papers published isn’t enough to make a concept scientifically valid. Other things matter too. https://t.co/GpNRMgRLNC

[Edward A. Perin - Psychologist @DoctorPerin]

De-diagnosis is a great term. People develop throughout the lifespan. PTSD, for example, is rarely a life-long condition. Don’t be afraid of de-diagnosis!

[Naomi Fisher @naomicfisher]

Has the autism spectrum outlived its purpose? Uta Frith helped create it, and she says it’s time for change. Listen to our interview with her, recorded last month. #autism #neurodiversity #utafrith https://t.co/0IKDtt2RIZ

[Edward A. Perin - Psychologist @DoctorPerin]

I blame the DSM

[Paul Whiteley @PaulWhiteleyPhD]

Autism study is my life’s work. The spectrum has lost all meaning https://t.co/RR17sTHkRT More media. One could argue it never had meaning in the first place such was the continued reliance on 'singular autism is autism' and not the more 'real-life' plural autisms.

[Paul Whiteley @PaulWhiteleyPhD]

"Dame Uta Frith warns ‘things have gone too far’ as term has become so accommodating it is now meaningless" https://t.co/LPcAuhjcl0 Prof Firth on the autism spectrum. As expected her words are gathering media momentum. Her scathing review of 'masking' was much needed.

[UnHerd @unherd]

THE FEMINISATION OF AUTISM, by Kathleen Stock (@Docstockk)

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, 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.

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.

The most recent wave of expansion of the autism category has been towards conditions emerging in female adolescents that bear scarcely any similarity to the original archetype at all.

This was the great feminisation of autism, and it really hasn’t helped.

Read more below ⬇️

https://t.co/ccZTzQ8gxQ

[Naomi Fisher @naomicfisher]

@utafrith has been working in autism research since the 1960s. Very few people have this sort of perspective on what has changed in that time. We need to listen.

[Naomi Fisher @naomicfisher]

Uta Frith, renowned autism researcher, gives an interview to the TES about autism – and the internet goes wild. We’re told that what she said will put back progress 40 years, that she knows nothing about autism, that she lacks critical thinking and that her words will harm autistic people to the point of suicide.

You’d guess she must have said something really awful. Perhaps something deeply offensive about autistic people which reveals her lack of compassion and understanding. Even then, it’s hard to know how one retired academic would have the power to make others commit suicide and to turn back progress to the extent that is predicted.

What she said was that she thinks the autism spectrum has expanded too far and that it isn’t helping anyone. Not those who originally received autism diagnoses, and not those who are now getting diagnoses who previously would not have done. She said that she thinks scientific progress is being held back because ‘autism’ now means something so heterogenous that we can’t identify anything that all autistic people share. Nothing biological or neurological, nothing cognitive, nothing behavioural. In her words, there are no markers.

The autism spectrum is, in fact, the widest spectrum imaginable. It goes from some of the most disabled people in our society to some of the highest achievers. And there’s no evidence that they have anything in common except their diagnosis.

Saying this sort of thing gets you into a lot of trouble online. There are accepted narratives that we are all expected to comply with, and one is the idea that the giant autism spectrum is protective, that it helps people to be included under one diagnosis. Any language which helps people differentiate is banned. Which is odd, because we don’t think that in any other area of medicine. No one says (for example), that we shouldn’t differentiate between Type 1 and Type 2 diabetes because it’s protective not to be able to talk about the differences. It’s obvious that differentiating between types of diabetes will lead to better understanding and interventions.

If you don’t comply with these narratives about autism – as Uta Frith hasn’t – then you will be publicly shamed. Your expertise will be challenged, even if you have 60 years of experience. You’ll be told that you are harming people and that you are ignorant. Personal slurs are likely to be used against you.

And it’s all about social control. Shame is about social control. It’s about creating things that can be said, and things that can’t be said. Others see the shaming and keep quiet.

It’s about controlling the narrative so that real discussions can’t be had. I’ve talked to so many clinicians who raise these concerns with me and who then say that they’d never speak up, for fear of shaming and even losing their job. There are important things that are not being talked about, for fear of the repercussions.

To my mind, the interesting question is really why. Why is it treated like blasphemy to say that the vast autism spectrum may no longer be fit for purpose? Why are we not allowed to discuss the reality of clinical practice?

Why are personal attacks the go-to when scientists disrupt the prevailing narrative? And why are we all so compliant, censoring ourselves to avoid the discomfort of shame?

Listen to our podcast with Uta Frith here. https://t.co/e4UoDdKTIe

[Uta Frith @utafrith]

Just occasionally one finds a really interesting article!
The origin of color categories | PNAS https://t.co/39QonFWPwd