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

(Wrt loosing Asperger’s) I don’t understand why - except that the diagnostic criteria was very specific.

A relative in another country was diagnosed with sensory processing issues and dyspraxia as the insurance would give the targeted therapy she needed. She fits the old Asperger’s profile very well. She experiences anxiety now, at uni, because it’s really bloody hard for her, physically, to keep up with the level of energy she has to deal with to be the same as everyone else. She didn’t experience anxiety when a teen though. She is and was very studious and was very happy within her clear narrow interests. Play was challenging when younger but at secondary school she could just study and have a couple of friends who got her.

shes never had a diagnosis of autism / Asperger’s which I’ve felt was an issue as she then never accessed some very specific salt therapies and adjustments that I feel would have really helped her. I often worry that she’s going to burn out. She’s also very vulnerable socially.

Poor Naomi is getting some quite harsh backlash in this aftermath. I think it is an over-ripe area of discussion, especially if it leads to systemic change in the environments and spaces inhabited by young people.

The thing I don't quite get is that aspergers was never associated with teen girls with anxiety. It was even more weighted to males than females in terms of diagnosis ratio than autism was.

Im not suggesting that there is no benefit to separating out people who have no learning difficulties and no early language development delays. But I am a bit surprised to see it referenced in discussions for teen girls with anxiety. The criteria were very much things like mechanical speech and socially inappropriate comms, and lack of reciprocity.

I guess they are just meaning there could be even more finely tuned categories like aspergers but not aspergers?

@SnickerboaHoppfallerait sounds like autism was an appropriate diagnosis for your daughter, particularly because of the sp and language difficulties. It’s a shame that nothing changed for her till that diagnosis however, because of the delays to get it and everything you went through.

Teachers don’t get enough training and schools don’t get enough support / access to assessments earlier on

It’s a self fulfilling prophecy; if the only possible ‘explanation’ for a child’s difficulties and the only possible support/ treatment/ intervention/ ability to get schools/ staff to approach how they deal with a child (a big factor) is the now very broad diagnosis of autism, that will be what is given.

But then it’s given so much that the demand for support can’t keep up with the need. The waiting lists get longer (that was happening 20 years ago) and staff are still unsure how to help a child as there are very clear approaches developed for the autistic children Uta et al first looked (very much based on hers and other’s cognitive difference theories) at that don’t suit the needs of these later diagnosed children.

this is why she’s suggesting Asperger’s was a useful term, and perhaps other cohorts could be determined in order to know how best to support.

A post by Naomi below the one I’ve linked upthread looks at the “myth” that CBT doesn’t help people with autism. It can (and there’s different sorts of cbt and therapy some may help, some may not.) And indeed things like TEACCH and social stories have similarities with CBT. So does ‘how to train your inner chimp.’

It sounds like, from her post on this, children have received a diagnosis of autism and then been denied cbt. Which is bonkers and demonstrates the current issues with the diagnosis for some cohorts and individuals.

https://naomicfisher.substack.com/p/on-cbt-and-autism

Her little post on anxiety below that one is also lovely.

A diagnosis is often -although this ought not be the case- the only way to secure adequate support.
DD1 was initially referred for assessment in primary school following an EP assessment which highlighted an unusual degree of anxiety and demand avoidance (alongside the SpLD which the assessment had been for) in an otherwise quiet and compliant child.
The primary years rumbled on, with assessment pending, an EHCP, and upon transitioning to secondary school, the wheels came off, quite spectacularly, one by one. As a seasoned educator, I'm sure you know the story -no support was really forthcoming. Just time-out cards, panic attacks in breakout spaces about not being able to access learning due to SpLD. We fought tooth and nail to avoid a move to a specialist secure SEMH provision, away from friends and familiarity; it absolutely wasn't what DD needed -she was crying out for in-class learning support not social exclusion.
When our 'turn' finally came for the NHS autism assessment, toward the end of the third year of secondary school, and a diagnosis was offered (it is presented as a choice: "Snickerboa Jr is presenting with traits consistent with a diagnosis of autism, would you like to accept the diagnosis?") we didn't hesitate -I knew that diagnosis would be the key to unlock the in-school support DD needed, and would stop the efforts at trying to shoe-horn her into SEMH provision, which would have been entirely inappropriate.
I suppose the point I'm making is in agreement with your observations of a cohort of very anxious girls for whom the school environment presents significant challenges, and, like my DC, are at a much higher risk of dropping out of school.

In my experience and that of friends and relations, there was simply no room for neurdiversity to express itself in education in the 60s and 70s. Even in infant school, desks were set in rows. You sat side by side with one other child, all facing the teacher. You listened to what the teacher said, you read what they told you to read, you did the exercises they told you to do, you ran when they said run and you jumped when they said jump.

If you didn't do those things you were punished at school (sometimes physically) and when you got home your parents took the teacher's side no matter what and you were often punished again.

Those with the capacity to do so learned to bend to a society that required them to behave in a particular way. Those who didn't ended in "special" schools, often borstal for the boys. And though that sounds almost barbaric, for the majority, I don't think it was. Choice was removed, but choice is stressful and removing it when everyone else is in the same boat actually reduces stress, imo.

It sometimes feels that compared with today, that system actually fitted the less adversely affected in the neurodiverse spectrum for a life of adult independence much better than today's way of allowing children to "be their true selves".

I don't believe I would have achieved what I have achieved in life, or been any happier (in fact probably less so), if I had attended school as it now is.

I don't think either extreme is completely right but what we've got now certainly looks to be unnecessarily creating more adults unable to function as independent adults.

I listened to Naomi Fisher’s interview with Uta Firth with this morning.

It’s well worth a listen. She provides more information about her thoughts.

She also makes some very good points about shoddy research. And researchers not being thorough enough in terms of engaging with the opposite arguments in order to fully test theories.

The only bit I queried was where she questioned ear defenders, but at the same time I feel the diagnosis of sensory processing disorder has been forgotten about. And I think it’s possible to have that as a completely separate diagnosis to autism. I feel it would be useful to be clearer on that because it really does hone support towards sensory and physical input.

Everyone focuses so much on the diagnosis but not the support/ provision.

Coming back to the OP @Missproportionate’s key points though, it is really important that autistic women and girls who are currently diagnosed do not feel in any way down graded or fraudulent, or loose the support and understanding that they have found helpful. That is the key bit though; if it’s definitely helpful and what does that “support” look like.

Podcast Interview: https://naomicfisher.substack.com/p/autism-trending

Thank you for the link, @Missproportionate . I read the Uta Frith interview with interest and relief. And I absolutely loved your coinage "neurospicy". I do very much think that this is a pervasive and self-indulgent self-ID that eclipses the needs of people significantly impaired by autism, in the same way that the hordes of "spicy straight" people have hamstrung the ability of gay and lesbian people to state, and organise around, their needs.

At the same time, the neurospicy trend is very different from the 'spicy straight' trend and much more damaging, because it is colonising a category of significantly disabled people, who are either totally unable to advocate on their own behalf or at least very significantly impaired in their ability to advocate on their own behalf.

Right near the top of the Frith interview, she mentioned the objections that some people have to characterising autism as a 'disorder'. That objection seems the most complete expression of successful colonisation of a disability category. It is, in effect, an admission by the people who pursue their autism as an identity that they are not themselves disabled, and that they are content to undermine the ability of people who are disabled by autism to name their own condition (or have it named on their behalf).

That resonates strongly, for me, with the language-hijack of the trans movement, and its undermining of women's ability to name themselves.

I recently attended a conference showcasing research into mental health, and there was a presentation of some research relating to dance as a possible form of therapy for people with autism.
I was eager to see how dance might help the profoundly disabled young people that I had recently seen in the documentary "I Am Not Ok" (which featured parents struggling with children so very distressed and impaired with autism that they were violent on a daily basis). I was also eager to see how it might have helped my own son, who was significantly impaired by an autism that veered in and out of psychosis, though he was not as severely unwell as the children in the documentary.

Instead, what I saw was a piece of research exclusively devoted to a self-selected group of people who no doubt had their challenges but who functioned normally to the extent of taking leading parts in smooth, eloquent videoed interviews and dance sequences, and who were participating broadly normally in social and working life. There was absolutely zero admission in the presentation of the research that it was apparently focussed on a very thin slice of the autistic spectrum - the slice of people least in need of support.

It makes me so furious that the people who are colonising the category of autism (or facilitating its colonisation) think of themselves as progressive -- encouraging diversity, reducing stigma, etc. What they are actually doing is stealing. Stealing too-scarce resources from vulnerable people who are already suffering the social injustices of a severely compromised health and social care system.

@TempestTostthat is the argument Lucy Faulkes makes.

You know, I also was anxious, especially socially, as a child, but I am notably not anxious as an adult. I don't think I've ever stopped to think what caused the change, because I never did anything about it. I found ways to get around it in my late teens, early 20s, basically to fake it, but at a certain point it massively reduced. It's something I haven't considered before today.

Anyway - there has been some recent stuff in the last few years that suggests to me that turning things into "disorders" doesn't have the effect of de-stigmatising them or making them less stressful - and in fact often can have the opposite effect. SO I really wonder if it might not be similar here, with the differernce between personality and a disorder.

There also is some evidence that classing things like mental illness as medical actually increases people's suspicion of sufferers, even if it appears to make them kinder. So I wonder about that.

But I think you are totally right about the real question being, not is it useful, but is it true.

I'm with you here to a point.

But I would point out that in fact there are a lot of standard medical conditions that were identified before we understood why they occurred or the way the disease manifests over time. They were indeed based just on symptoms.

And as understanding increased sometimes the conditions were revealed to be better described some other way, or to be several conditions, etc.

I don't think the idea of neurodivergent conditions has any legs at all if we don't think it reflects some real structural difference, or process, or cause. And we should really want to find out more about what those causes are and why we see certain symptoms, because the chances are if we don't we are being pretty ineffective at helping people deal with them.

Wanting isn't having of course and maybe we won't ever get there. But in my experience a lot of the inability people have to even discuss this topic hinges on the fact that they don't really understand the degree to which doctors are really flying blind with this kind of symptom based approach. So it's important to keep it in mind so we ask the right questions.

I think the school environment now is a huge factor with why we are seeing so many struggling children. It's completely inappropriate socially and academically. In some cases I also think we are creating brain changes in children that are negative with inappropriate environment at home and school.

In many cases in the past, kids who were "differernt" were more able to cope because the environment wasn't asking so much, because they had more time at home, because classes might be smaller, among other things. What now seems to require a disease was just a personality differernce.

Of course some still didn't, and others might have but were bullied. But in the end the line between people with various personalities, and people with disorders, is just how much harder it is for them to get along in life.

@likelysuspect every trans young person i personally know or have known has a had a complex childhood with significant trauma a various kinds, I don’t know that any of them have a neurodiversity diagnosis, but trauma I do know about eg loss of a parent due to illness young (under 12), divorced parents with fractured relationship, abuse, foster care spells and in one case homophobic parents who actively pushed for them to be trans as “more acceptable”. Over half are no longer trans but instead are happy gay adults. My dc are a bit older than when trans became “fashionable” and before smartphones became ubiquitous from late primary

I find this debate really fascinating. My daughter has a complex chromosome abnormality and attends an SEN school as well as a range of other SEN events, so we are around children with severe needs quite a lot, children for whom the idea of masking their disability is laughable, children who will go on to need 24 hour care for the rest of their life.

And yet asking the very obvious question: "are these children the same medical cohort as people like Elon Musk, Anthony Hopkins, Dan Ackroyd and Bill Gates?" attracts such vitriol.

I think it mirrors the trans issue so closely, it's become all about "you're denying my identity, claiming I don't exist" rather than anything based in science or reality.

But when I read that, even the autism indicators on that list don’t match children I teach who are autistic. So not sure how useful it is other than to highlight how much trauma can have profound impact on development

If that link doesn’t work, search the Coventry grid.

https://www.johnwhitwell.co.uk/child-care-general-archive/clinical-observations-of-the-differences-between-children-on-the-autism-spectrum-and-those-with-attachment-problems-the-coventry-grid/

@likelysuspectyes this is what I’ve seen.

Also children who were likely displaying autistic tendencies (for want of a better word) but were known to have had extreme trauma and attachment difficulties, were given autism diagnoses. Because the types of approaches used, that have been designed for children with autism, really help. I remember being taught about Coventry grid, which was created over a decade ago but it doesn’t seem to have featured in any training since.

https://www.drawingtheidealself.co.uk/index.php?fdownload=file-coventrygridversion2-jan20151605973603.pdf

This is so interesting. I hadn't noticed, but you're so right about attachment disorders which were so in vogue really not that long ago. It seems like a lot of the more psychotherapeutically-informed terms/ways of understanding difficulties have gone out of fashion but personally I found reading about insecure and avoidant attachment very helpful when I was trying to make sense of my own feelings about my husband and first baby. (Quite a while ago now, as the baby is a teenager.) Reading the Frith piece I was also reminded that 15 years or so ago (maybe more?) there was quite a vogue for describing some children as "highly sensitive" -- I think a lot of the children those books were about could now be described as ND (at the lighter end).

Very anecdotally, but this is how my DH feels, and why he is quite against us seeking any sort of assessment of DS1 (my own view is that I would consider it if school recommended or raised it, or if I could see an obvious struggle for DS, but neither has happened so far, only a few essentially random people saying he should be assessed). I personally think that if DH was a child today he would absolutely have been assessed for autism - he is fairly 'textbook'. He also had, after a stellar performance at school and university, some 'failure to launch' issues in his early 20s, which again is fairly classic. But his view is that it would have been disastrous for him if he'd had a label at that point - that he was struggling with being outside his comfort zone and would have grabbed onto anything that justified him not doing so and which supported his belief that he 'couldn't' rather than 'wouldn't'. But that he thinks that would have been a very negative outcome for him and would have held him back for life.

As I said, totally anecdotal, and I am not so convinced that it is as clear cut, even in his own individual case, as DH thinks it is (he's a bit of a black-and-white thinker!). I think it worked out well for him but there would have been many others in the same position who would have benefitted from diagnosis. But I can also see his point.

What needs highlighting is a lot has been made of teens being ‘anxious’ when really they are feeling ‘nervous’. But these late diagnosed girls are generally being diagnosed off the back of a mental breakdown, usually involving self-harming behaviours or even a suicide attempt. They are not merely ‘nervous’.

I’ve always felt this article hits some similarly important points for adolescents

https://www.theguardian.com/society/2024/apr/13/i-was-the-poster-girl-for-ocd-then-i-began-to-question-everything-id-been-told-about-mental-illness?CMP=Share_iOSApp_Other

As someone who also struggled/s with anxiety, particularly social, I find these paragraphs pertinent.

But growing up now would only be better if it meant access to support, and I’m not sure most teenagers have that. Awareness-raising efforts in schools, online and elsewhere have flooded teenagers’ minds with the concept of anxiety, but funding for services has not caught up, and light-touch school interventions often aren’t enough.

We are now in a situation where many teens know or believe they are anxious but aren’t getting the help they need to manage it. I’m not sure that is better than not having the awareness at all.
Adolescence is a period of identity development for everyone. Like many teenagers, I was introspective and ruminative. My friends and I dissected our personalities, thoughts and behaviours all the time. If I had repeatedly been offered the word “anxiety”, without any decent one-to-one treatment, I think it would have been cemented into my self-concept before I had even turned 13.

Critically, I think that would have changed my behaviour in a really unhelpful way. Today, as an academic psychologist, I am frequently emailed by teachers, clinicians and university staff who say there has been a huge increase in the number of young people who ask not to do things because they are anxious – and these requests are being granted. The people who email me are concerned that, in the long run, this is setting young people up to fail, and I agree with them.

@RoyalCorgi I find what Dr Lucy Faulkes writes about anxiety really interesting and useful for this conversation

https://www.theguardian.com/commentisfree/2023/jul/09/psychologist-anxiety-personality-trait-children-sick?CMP=Share_iOSApp_Other

Agree with all these points. Anxiety is horrific. It also a condition that spans all other diagnoses.

Anxiety has been recently known to mean an individual is exceedingly good at spotting nuance and details, hyper alert to little things, which apparently are skills the FBI deliberately seek out.

Anxiety is your super power by Wendy Suzuki is really good. (In classic me fashion I’ve not finished it. But will one day🤣)