Uta Frith, women, autism, and what Dr Stock, Helen Lewis etc think...

[Missproportionate]

Helen Lewis and Kathleen Stock have both commented on this article on X, both slightly ambiguously, as if they aren't sure what to think.

Wondered what anyone on here thinks about this? I am also ambiguous, but full disclosure: I have been diagnosed with autism at the age of 50, I haven't told very many people because I see a lot of identifying as 'neurospicy' online, and it seems to be connected to the whole 'I'm not normal, oh no I'm special' idea that I think has parallels with the queer community. I don't want to be on that bandwagon, I just want to make sense of myself.

I was diagnosed through a long process with several professionals, and a 3 hour interview with me, and a 3 hour interview with my mum about me as a child. I fitted in all the separate areas of criteria. I doubt people I work with or interact with superficially would guess ( but they may find me irritating or insensitive or interrupting - I find it hard to tell).

But it worries me a bit that women who are autistic might be seen as 'not real' and lumped in with the trans community in some way. But then how does that
then work? because as has been observed many times, girls who present with gender dysphoria are very often diagnosed/undiagnosed autistic. I think we should be leaning into attending to the autism in girls, and how an autistic girl might find being trans attractive as a way to 'solve' their feelings of not belonging. If we start to question the genuineness of their autism, we risk failing those girls even more. Don't we?

I don't know what to think.

Uta Frith interview in TLS

I read that with interest. My son has never been diagnosed with autism although he has sensory issues and dyspraxia. He is academically bright and I'd say emotionally behind his peers but gradually getting there with friendships. My husband's brother has three children on the autism spectrum - diagnosed - and my sister in law says getting a diagnosis really helped them (the children) understand why they felt different from other teenagers. My request for an assessment vanished into the local authority system and seems unlikely to ever be addressed. I'm considering whether to get a private assessment but I don't know how useful it will be. I keep reading about overdiagnosis and I do wonder how labelling helps these slightly quirky, sensitive kids. However, it's clear, as you say that many of them are being sucked into self diagnosing a trans identity. I never really understood why Aspergers syndrome fell out of favour as it seemed to describe that cohort much better than lumping them in with children with often profound disabilities from early childhood. Have you found your diagnosis helped clarify anything for you?

Yes. Loads of stuff. I would have identified with the idea that I didn't belong and seen the trans idea as intriguing. I was always seen as weird. Loads of things I did as a child made sense - like only eating Branston pickle sandwiches for breakfast for months on end, pretending to be a particular animal for quite a while, having special interests, being severely bullied. Never understanding who liked me, totally at sea during puberty, intensely embarrassed (couldn't talk about breasts and periods) and totally unable to work out if a boy liked me or if I would ever be able to say that I liked them (no). Not being able to tell my own senses (didn't recognise hunger - this is called differences in Interoception). Having a really large 'bubble' of personal space, and being uncomfortable sitting next to people to the point I thought something serious was wrong with me, and never telling anyone... Missing so many social cues looking back. I'm still like it in many ways but I learnt to use it and to understand why I need time to decompress sometimes, and other things.

This is why I worry it will be labelled as overdiagnosis in girls and women. And why I'm wondering what conclusions Dr Stock and H Lewis are making about it (given I agree with them on so many things)

The recent research suggesting that genes affected by Autism can express themselves at different times and there may be particular types of Autism is interesting. But certainly many teens with strong verbal ability tend to have more than just 'anxiety' or emotional 'sensitivity'. There's frequent sensory differences, monotropic type processing and difficulties with flexibility of thinking, differences in social relations and semantic understanding of social language with inability to learn by imersion, differences of memory and attention, executive function skills like response inhibition and organisation. These might not need PIP or a 1:1 or an EHCP but need identifying and supporting to create accessible learning and workplaces. This is largely the group who are dropping out of education due to having struggled until they broke, and they often have significant needs despite being outwardly academic. Socially, emotionally, in sensory terms and in teaching styles, education is not easily accessible to them.

The idea of moving away from the Lorna Wing 'spectrum' was because society had tended to bang it into a box of 'very autistic' and 'not very autistic' with these being used to deny agency to one and resources to another rather than to look at how autism specifically affected that individual. We are being primed at the moment from government to accept resources being removed from kids with SEND, with the reason being we can't afford them in society, but the spin being 'most have false diagnoses/over diagnosed/sharp elbowed parents/ everybody's a little bit autistic' and lot of ableism to get this through without a fight. It's easier than accepting education is no longer working for too many kids, and needs ground up re designing.

I think there are two different problems.

The autism diagnosis has become so wide that it now lacks meaning. That does not mean that people who have the diagnosis do not require any diagnosis.

At the same time, there has been an increase in self diagnosis of neurodivergent conditions on social media, and many of these people seem to understand ADHD, autism etc in terms of identity.

I am not sure that the article is a "significant intervention" as over the past few years, if not more, lots of people have commented on the impact of self diagnosis.

And we (or the experts) haven't worked out a way to deal with the consequences of that.

But the bit I thought most interesting in the article is this. That as with all parts of health care the dominant male culture is not helpful for women and girls:

There have always been girls with autism. The ratio was assumed to be four to one, and more recently three to one. In children diagnosed before age 10, this ratio has remained the same over decades.

Is there a cultural bias against identifying girls and women as autistic? Have they been unjustly overlooked? I don’t think so. We know, for example, that psychopathy is overwhelmingly male. Do we ask whether psychopathic girls have been overlooked? I haven’t seen anything like that.

There are just diseases that are more common in males and diseases that are more common in females.

So not sure why Uta Firth is denying that this dominant male culture in medicine doesn't impact all areas of medicine.

And the other side of that, that women and girls are more likely to "conform" to social expectations ie are "masking" in many areas of their life.

I wonder what KS thinks is "significant" about this, which if I have read correctly is implying that patriarchal dominance is not discriminating against women and girls.

I have no intelligent comments to make, but thank you for the link OP, that was a very interesting read.

Every single child I have worked with who thinks/feels/says that they are trans/non binary, has either trauma, ND, history of SA or a combination of any of those factors. Without exception.

ND comes up a lot, more than any other factor in that cohort because of exactly what you say OP, the attractiveness of trying to explain why they feel different, out of sorts, cant connect with themselves or others and its the narrative of the day as to why.

No work whatsoever is done to support the child to explore what their ND means in terms of how they interpret themselves and the world around them, not a bit. Instead its instant validation and affirmation as a 'thing' of itself.

Thanks for sharing, an interesting article.
Have KS & Helen Lewis said any more than 1 or 2 tweets each so far?

I have 3 diagnosed ASD children. The boys were diagnosed years before their sister even though her behaviour seemed more autisticbefore she went to school and got on the masking train. None got intervention at school but have had support thrown at them at university - academic support that is. I think what they needed, early on, was what Likely describes

No work whatsoever is done to support the child to explore what their ND means in terms of how they interpret themselves and the world around them, not a bit. Instead its instant validation and affirmation as a 'thing' of itself.

What we actually got was a letter confirming diagnosis in the first paragraph and discharging us from CAMHS in the last paragraph. And despite willing to pay for what we needed, we didn't know what we needed or how to get it and who to get it from.

I imagine Kathleen Stock may once again be the subject of virulent criticism (to put it mildly), because a couple of weeks ago she published an article on PDA (pervasive demand avoidance), essentially saying this is not a real thing. Archive link here: https://archive.ph/ze9nR

I've some personal knowledge of the world of PDA, and the reaction to this article has been enraged. (I imagine this is why she isn't doing that much on X at the moment.) I remember PDA first being a thing people talked about in parents of SEND children circles at least 15 years ago, when I was more in that sub-culture than I am now. It's now become a massive, and mostly self-diagnosed thing. As Stock points out, it isn't a recognised diagnosis, but it forms part of a significant number of EHCP applications. I broadly agree with what Stock says in that article.

This is where I feel that I may have to run away and hide too: the reactions to her article strike me as scarily similar to when women first started speaking out about gender ideology. Many of the same phenomena are there: a cohort of true believers who treat any questioning as a personal and hateful attack on their very being; a demand that everyone accept their account of reality; scientific-like discourse; using the threat of suicide to deflect criticism; prevalence among the liberal middle class. Could it be that we are seeing another social contagion?

It's really significant that questioning the new orthodoxy over autism provokes such heated feelings, even when it comes from someone who has been a pioneer in the field.

Yes that’s what I’m worried about too. It being seen as a similar social contagion.

but we do live with social contagion- and I don’t think we know what to do with it. As a Gen Xer it was all about anorexia when I was a teen (and I note that it’s now known that many many girls with anorexia are also autistic), and then it became all about self harm - definitely a social contagion. Then historically I think there are lots of similar things - I’ve read that all this stuff about Victorian women swooning and fainting all the time and needing smelling salts was probably a similar thing…..

the underlying fact remains - and I’ve seen this first hand with my own DCs - that boys act out their ASD or ADHD on others, and girls turn it on themselves. Guess who gets the attention? The ones throwing chairs about ….

It's really significant that questioning the new orthodoxy over autism provokes such heated feelings,

I dont see that. One line from KS doesn't explain what she means, because the article referred to doesn't actually say anything new other than an increase in self diagnosis. Some of which may be true but just adds to the muddle in terms of once you have a (self) diagnosis how if at all do schools etc., respond to it.

And just to repeat myself, the really interesting point in the article referred to which KS didn't comment on, is the idea that a male dominanted profession doesn't in its practice discriminate or under serve women.

Can anyone point out to me what in the article itself is troublesome?

What I'm suggesting is (and I say this very nervously), is that ASD/PDA/ADHD might themselves be a social contagion. One of mine was given a diagnosis at 5, and we accepted it, but in retrospect I don't think it helped us to parent him, it didn't really help his schools. He was very very difficult -- but maybe that's just what he was.

You're quoting me, and I'm partly referring to Stock's piece in The Times. But the interview with Ute Frith has caused a big stir and it's worth reading in full.

https://www.tes.com/magazine/teaching-learning/general/uta-frith-interview-autism-not-spectrum

The parallels between autism advocacy and trans advocacy have been raised a number of times on threads on this board in recent years.

There are some vocal identifarians in the autism world who seek to police language and more. They insist that whilst every autistic person is unique, they can speak for all autistic people. They insist that their needs are as significant as non verbal autistic people who need carers to meet their basic needs and insist autism is not a disability and that autistic difference is just a different way of experiencing the world.

I work with profoundly disabled autistic young people and their needs are very different to the high achieving autistic people I also work with who may get 1st from Oxford but are also likely to be unemployed (like 80% of autistic adults).

I think it would be helpful to abandon the umbrella diagnosis and have more precise diagnoses. I think the concept of masking needs to be interrogated further and I welcome the thinking that the likes of Uta Frith are sharing. There will be lots of gnashing of teeth from some autism advocacy group for this wrong speak, but the zeitgeist is gradually changing when it comes to thought and language policing

But the interview with Ute Frith has caused a big stir and it's worth reading in full.

I did read it in full, and as I said in my first post, I couldn't see anything she was saying about the current increase in classifying someone of being on the spectrum as not having been disscussed elsewhere.

Whether it is social contagion or real, the reality is with the ability to self classify, and that schools etc., have (in varying degrees) made accommodation for this, that basically the system is under pressure.

Far more important to me as a feminist, is that a woman in the medical profession claiming that, even though it is male dominated, we shouldn't think this means women are not being treated in the same way as men.

So this part does link to OP's personal story.

But whether women are being underdiagnosed because of a male dominated profession, or because so many women live their life conforming to expected norms is one thing, but the other part of it which is whether real or inflated by self diagnosis what it society's response to that.

In the past we would just have had people who didn't fit in, were a loner, or something, unless they were from the priviledged class when they could be an eccentric.

On other threads on FWR not only about autism but also about girls going through puberty etc., nearly everyone posted about the experience of not fitting the norm. The idea of the norm is a social construct. OPs experience of herself is similar to ones many women express about the difference between how they feel they should be in society and how they feel on reflecting how it felt to try and "fit in".

And although some obvioulsy think this, I really dont think a single sentence from KS is going to impact on many people.

(PS have edited first sentences as hadn't properly checked when first posted.)

Naomi Fisher has also interviewed Uta Frith recently and the interview is on her substack. She discusses the same topics but in a bit more depth: https://neurosense.substack.com/p/why-we-need-to-rethink-the-autism?r=kutxq&utm_campaign=post&utm_medium=web&triedRedirect=true&_src_ref=t.co

In the real word, not on forums like this one, practitioners and professionals who work in CAMHs/local authorities do not really agree with the removal of the differentials but equally very strongly recognise the tendency to have swept attachment behaviours/disorders completely away. Its barely mentioned anymore.

However widespread it is or isn’t, autism doesn’t operate in a vacuum.

It’s more than reasonable to point out that a lot of current social beliefs eg being special encourage overdiagnosis, and others eg misogyny encourage underdiagnosis. And to remind us that £££ drives this.

Unlike societies past, we assume that our children are born basikerly social/well behaved and fixable, which isn’t right - but harder to disprove with psych stuff. Many health professions benefit from this fib. So do many people who want to cut SEND funding.

I really admire the Prof for hammering home that autism is a serious condition whereby a damaged brain fails at important life skills and can’t currently be fixed.

Her idea of autism isn’t cheerful, but it is truthful and gives dignity to children and parents alike. She implies overdiagnosis hurts her patients - of course it does, instant excuse for saying it’s only a fashion.

Autism’s an unpleasant pathology, and only by taking it seriously will we get anywhere near the hope of finding something that does work.

She seems to assume that all parents will spot signs of a child being 'unusual' and therefore get a diagnosis in early childhood. Weird.

Any child who presents with any kind of difficulty is now either ASD or ADHD. there are no other possible causes for the behaviours and no other possible diagnosis to be made. This is clearly bonkers. A child I know lives in a horrible situation with domestic abuse. Response from school to challenging behaviours: test for possible autism.

Uta Frith gave an hour long lecture on these issues about a year ago.

Hasn’t there been research that has identified clear categories of autism, affecting different ages, sexes and presentations? That within each category there’s remarkable similarity?

I think the shorthand was roughly that what we call autism may be several different phenomena responding to different triggers and with different underlying causes.

(Perhaps not unlike type 1 and type 2 diabetes.)

There has always been disagreement in the autism community about teaching our DC to fit in versus accepting them as they are, safety issues aside.

One of the big advocates talked about her parents having been really harsh with as a dc, forcing her to comply with social norms (like wearing clothes!). She was grateful as an adult, as she is able to fit in when necessary. She has choices she wouldn’t not otherwise have learned.

Like some others I find the over the top reaction many people seem to have to any discussion of "neurodivergence" quite significant.

It's really different than what you see with most disorders or diseases, where people are generally very happy if there is new research, if diagnoses are refine., People are often interested in talking about diagnostic criteria and where it may be less than perfect.

And I think there is a cross over with gender ideology where we get into the idea of what counts as struggle within the bounds of what is normal, as opposed to struggle which is abnormal and needs something to account for it. Because the line between some form of normal, and a disorder, is where it creates a significant struggle in someone's life.

But what counts as a significant struggle? What if we start to count fairly normal struggles for many people as abnormal? Like a sense of dissociation with the body during puberty. Is that a sign of dysphoria that is a disorder, or is it a very common teenage experience?

My suspicion is that there will in the next 20 years be major changes in how autism is defined and diagnosed, it may be split into more than one thing.

I watch a youtuber who would agree with that. He was diagnosed as a kid, his parents were against almost all accommodations as they felt he needed to find out how to function. He's said many times that in his opinion a lot of parents end up crippling their own kids by making sure they don't have to learn how to cope.