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

@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

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/

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

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.

@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 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.

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.

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.

@TempestTostthat is the argument Lucy Faulkes makes.

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.

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

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.

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.

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.

@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

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?

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.

(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.

I think the main reason for losing Asperger’s was that the man it was named after turned out ti have been a Nazi. So a political/moral reason rather than a medical one.

Haven't read the whole thread. One of my DC has significant food allergies and was under a consultant for many years. The key thing I learnt from the consultant was we know very little about food allergies. There was also a lot of people that thought he was fussy or that we were fussy and didn't quite believe us. So on the odd occasion when an ambulance had to be called you could sense the discomfort in those that didn't quite believe.

One of my other DC is diagnosed autistic and I get the same vibe from people - they don't quite believe it. He was a young teen when diagnosed and I think his autism is fairly obvious. He has two other co- morbid conditions.

In the wider family I can see a number of people who have fairly typical autistic tendencies but never sought diagnosis and those still alive never will. I find myself thinking that autistic traits are probably more common than we think but still a minority. Professor Barron Cohen (cousin of Sasha) is an academic I find interesting in this field.

I understand the reason was in part the stigma around the name, but also because there wasnt consistency in application.

So a person could leave one clinic with an aspergers diagnosis and another clinic with autism (without learning disability). The only difference between autism without learning disabiity and aspergers in terms of diagnositic criteria in dsm iv really was around early language delays and early language delays werent a great predictor of outcomes at 18. It wasnt unheard of for someone with high functioning autism to end up with better language skills than someone with aspergers. Plus it turned out measuring iq was difficult anyway.

Before I looked at the old diagnostic criteria and the articles around the debate at the time, I had the idea that aspergers was some kind of autusm lite I had no idea people could still need supported living and special schools with it. If they bring it in again they will need to do some education that aspergers isnt only people like Elon musk.

Im also surprised how much of the debate at the time was the criteria were narrowing so less people would qualify and the more able people would get lost behind the profoundly disabled - but the exact reverse seems to have happened. It shows how difficult it is to predict.

I agree with both of you.

At present, autism is a social construct that is used to explain a combination of characteristics that are atypical. Over time, discoveries could be made that reveal biological and/or genetic markers that group some or all people who currently fit within the ‘autism umbrella’.

I don’t think many people think that if/when a set of markers are found they will apply to all those currently diagnosed with autism and at that point in time, the umbrella will change - the label will be reserved for those with the markers, or those with the markers will be given a new label. This is likely to continue with new discoveries and it is likely that there won’t be discoveries for those whose ‘symptoms’ / experiences are psychological in nature.

There is strong objection amongst some in the autistic community against genetic research due to fears about abortion but also fears that findings will split the ‘community’.

For me, the debate needs to be framed from the starting point of what the point of diagnosis is. The same can be said for ‘treatment’ - which is a controversial concept in itself when it comes to autism - and parallels the ‘debate’ relating to gender-related treatment/ care.

When exploring ‘whether ear defenders work’, is the goal to eventually not need ear defenders, or is use of ear defenders the ‘end goal’ if they are effective. Arguably, having no distress without the need for assistive devices is, objectively, a better outcome unless there is an unwanted pay off (such as a corresponding loss of sensory acuity that diminishes other experiences). Many in the autism community would strongly object to the goal of navigating the environment comfortably without ear defenders, positioning this as ‘normalising’, failing to accept autistic difference etc. As someone who wears spectacles, I would love not to wear them, they can get lost, I can forget them, they get dirty/ broken etc. When any of these things happen, my vision and overall experience is compromised. Assistive devices are great- it’s even better if/when we don’t need them.

Asperger described his subjects as "little professors" so it does seem counter-intuitive that these children could have the same diagnosis as a non-verbal child with severe learning difficulties.

This then makes people reach for descriptors like 'mild' and 'severe' which is also not helpful as children with 'mild' autism can nonetheless be severely impacted by it.

Maybe instead of saying 'it's a spectrum' it would be more useful to split into different diagnoses again.

I think it’s helpful to frame this discussion within the context of 70% of autistic adults being unemployed and of the 30% in employment, many are underemployed.

The figures suggest that there are real issues arising for the group who meet the diagnostic criteria- whether or not the ‘one grouping’ is the right way forward.

I think the wide autism umbrella doesn’t help employers or employees. As a senior leader who has overseen a range of child and adolescent diagnostic and treatment services, I can safely say that the adjustments ‘autistic’ staff who have worked in my teams have wanted/ needed often have not been reflective of the needs of autistic patients. Those who have remained employed (employable) have been those with classic symptoms for whom autism- related adjustments worked most of the time. Those who haven’t, in my view, have over time presented as having personality disorders. There was/is a notable difference in how they responded to and engaged in exploring the supports needed. Many have insisted on / demanded supports that are not in any way reasonable and threatened litigation when refused.

@Brainworm

Have the people adjustments have worked for been male or female more generally have you noticed a sex difference at all.