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

Whilst trying to find that wheel however, I notice that there’s a huge amount of private companies who’ve designed all sorts of models of support based on it.

That is what Uta is trying to pin down. The lack of truly rigorously evidenced and researched information.

once again, many vulnerable children are fodder to private companies who charge various fees to schools and parents. Some may be rooted in good professional understanding.

Others are Richie Smith from Awesometistic

Naomi Fisher has written an interesting piece on her Substack naming the unhealthy levels of control and use of shame employed to stifle discussion.

The BAFTA debacle and the UF interview provide evidence that academics and politicians are beginning to wake up and/or speak about how its unacceptable to kowtow to authoritarian ‘advocacy’ that demand control of thought and speech.

The world is catching up with FWR. All that’s needed is along the lines of - ‘of-course your lived experience provides invaluable insights into your condition, as does empirical research and practioner expertise. Whilst your lived experience provides rich and deep insights, practitioners and researcher have broader and more wide ranging evidence that is equally important’.

https://neurosense.substack.com/p/saying-the-unsayable-about-autism/comments?utm_source=post&utm_medium=web&triedRedirect=true

I think science may be on the brink of coming to our aid regarding diagnoses. The advances in brain mapping happening right now seem to be astonishing. Yesterday I read that they have identified two distinct forms of ADHD, one which increases grey matter volume and one which decreases it. Although both forms share symptoms, it's surely only a matter of time before they are recognised as two completely different conditions?

I hope that ASD research is going the same way because ASD as a diagnosis is, if anything, damaging to my DH rather than helpful, and Aspergers would have been something he could have fully engaged with and explored to the benefit of us both.

I find the language and discussions around ‘masking’ really interesting, in terms of the scale / spectrum of it.
To some the exhaustion of trying to meet behavioural expectations is overwhelming to many (or even all) it’s learning to ‘put your work face on’ and how to adapt to different situations. It’s very hard to draw the distinction - I’ve spoken to parents who are pleased that their child is learning social ‘norms’ despite finding it hard and others (interestingly often those with much later diagnosis / self diagnosis / ‘milder’ ) who don’t think they should have to mask or try to learn social norms.

It is also apparently completely taboo to discuss the influence of parenting / separation/ trauma even though the outcomes can be the same or similar to those due to to ADHD or ADD. I also worry about the damage caused to children by putting them through loads of tests / investigations to try to find out what’s ‘wrong’ with them or ‘fix’ them. I have seen this with very high achieving parents with less academic children who are just not meeting parental expectations - they then wonder why the child develops low self esteem or anxiety.

It’s a no-brainer: Differentiating subtypes and severities of disabling conditions enables better, more targeted support.

Differentiating conditions that are disabling from harmless atypical quirks and personality types enables those in need of support to access it without others feeling their identities and ways of experiencing the world are being genocidely eradicated.

@Sandysandytoesyes it’s a really complex area.

And it does come down to if there’s a deep neurological difficulty with social language comprehension that impacts social interactions and needs adjustments that will always be there to a point, or milder difficulties which could be supported through proven language or therapy interventions. However, this can be interpreted as a “cure” for autism, which for many children will never happen and the advocacy over the last decade has rightly focussed on. But could that mean that some people gaining a diagnosis are then being told that they can never move past the areas that are causing distress? If cbt is being seen as useless, then what happens? Anti depressants?

The ultimate aim in either scenario would be to create an environment or support that lessens anxiety and depression as much as humanly possible. And the conversations around anxiety and depression now is that it is something that can be managed, even cured; tools learnt, lifestyle approaches such as exercise and therapy. Increasingly Even gut microbiome, magic mushrooms, vagal nerve implants, nutritional deficiencies etc are being investigated. Should autistic people be denied all this?

the pathologisation of the self, when the self is still evolving, could do more damage in the longer term.

Back in the 2010s, Heather Moran’s work in the Coventry Grid was referred to a lot as a useful model for differentiating between autism and attachment disorder. It was commonplace to be more cautious about an autism diagnosis with those who had a history of adverse experience. It was recognised that these young people could (of-course) be autistic too, but misdiagnosis could easily happen leading to failure to provide effective intervention and, potentially, failure to put the right safeguards in place.

Heather Moran’s work took place during a time an investment in public services. I find it unsurprising that autism advocacy didn’t wane during austerity whilst advocacy for those impacted by early adverse experiences did!

I posted on another thread that everyone masks at times in their life and that seemed to upset many in "the ND community".

I remember a long time back seeing a document about a child who would eat only a very restricted diet. Hysterical breakdowns when presented with a burger and fries (the choices might be healthier these days! ). I think he was 3 and ASD. The school he went to specialised in taking these children and training them to behave in more neurotypical ways. By the end of a month the little boy was apparently happily eating whatever was put in front of him.

There was heavy criticism from some of "the ND community" of this approach, which I completely fail to understand. Very much the same way that I don't understand deaf parents who don't want their children fitted with cochlear implants.

Of course if the little boy grew up completely screwed by his training that would be different, but there was no evidence that this was the case and older children at the school suggesting that it wasn't.

Back to masking, this is the same argument as the eating, whether it's right to train children to fit in with society if they can, or whether society should simply bend to their needs. From what I can see in real life and on this forum, sympathy for paying for the support required if a "trainable" child is not trained in this way is rapidly dropping in the face of the inexorable rise in numbers and the resulting cost.

The challenge would seem to be to teach people how to mask only to the extent that it doesn't damage them, but not necessarily to shy away from mild to moderate discomfort. It's a fine balance.

That’s what worries me - and on the other side children with ‘mild’ diagnosis whose diagnosis then becomes the dominant aspect of their identity and self image. It’s good that they don’t feel the need to hide it but they are so much more and it’s just one aspect of them! I see a lot of overlap with trans issues here too. Encouraging introspection is not a good thing imo.

Yes, I've always called it 'putting your best foot forward'.

A psychology article randomly came up in my suggestions about people pleasing. Is there a difference between some aspects of masking and people pleasing?
https://geediting.com/gen-bt-psychology-says-the-reason-most-people-never-change-their-lives-isnt-fear-of-failure-its-that-theyve-spent-so-long-performing-a-version-of-themselves-for-other-people-that-they-genuinely-cant-t/

Is this your quote @Brainworm or Naomi’s? Im loosing where I’ve read sensible comments and when!

Either way, nail on head.

True.

Masking is preceded with metacognitive capacities that enable a child to recognise that others perceive and form judgements about their behaviour that are different to their own and that there are expectations to behave differently in nuanced ways beyond behaviour requested / explicitly communicated.

This level of insight and awareness is a key differentiator within the ‘autism umbrella’ before we get to differences in ability and capacity to mask. Then there is the whole desirability angle.

Why should young people be forced to learn neurotypical social interaction skills? Why should an employer fulfil a lifetime dream to be an airline attendant with someone who can’t help passengers feel at ease? I grapple with the nuance and tensions every day and am dismayed by those who take up absolute stances on what it right/wrong.

That was my own writing. I suspect Naomi might agree but I think she is being more tentative/ nuanced in how she is speaking out.

Naomi is being very brave, she's the darling of the ever growing home ed community and many of the other commenters have expressed their fury. I can see that people feel deeply let down.

There was another home educator who spotted very early on the danger coming with gender identities who spoke up and any of her other ideas were then summarily dismissed. 'We don't listen to her she's transphobic'

That a really good article.

This is an excellent post

Uta Frith in the Sunday Times today. Can’t see if it’s been shared before.

www.thetimes.com/article/a83d207b-3a34-4364-b715-e479f4f68c19?shareToken=46af2e4f1a573eeaec62b1bd029b46c6

I agree. I think there are a number of things that have happened/ are happening that have led people to speak out who have previously ‘held their tongues’ or have recently had an epiphany.

It feels a bit like the situation of risk/ harm being at its peak when people leave an abusive relationship.

Those who have had their thoughts and language policed will be viciously targeted by those who have been coercively controlling them if/ when they step out of line. Especially those calling out the coercive control. The BAFTAs have been a bit of a watershed moment for this as it provides an easy and accessible reference. I have been involved in 2 conversations that would not have previously happened where conflicting needs were readily a knowledge and a previously assumed hierarchy of oppression was acknowledged.

From what I’ve seen on the chalk face the best settings for these children are often the settings designed for autistic children.

If you can only access such a setting with the diagnosis, when the other options are PRUs, I can well imagine a diagnosis would be the most sensible and holistic option at the time.

It becomes more problematic if the child has a level of academic ability to access content online / SM and then gets swept up in the binary concept of neurological diagnoses being absolute.

(See also: trans.)

“The clinical implications of this are particularly concerning, she says. Overdiagnosis dilutes research, Frith argues, because it mixes groups with potentially different biological causes and different cognitive dysfunctions. “This makes the data we obtain from large groups very noisy.”

She believes we should do away with the spectrum entirely. She would like to see it replaced with subcategories which separate those with childhood autism of the strict clinical kind, those with Asperger’s, and those with hypersensitivity.

“I hope that we may find meaningful subgroups, each with their own label,” she says.

Wow- want to thank you all for a properly informative and nuanced sensible discussion without outrage!

I note that this subject is being referred to as ‘#autismgate’ on X 🙄 (and also 😬 that autocorrect just tried to make me write ‘autism hate’ 😂)

My DF was heavily involved in special education and in the 80’s his school was called a school for ‘maladjusted’ children. Quite a shocking definition really. They were the most difficult children of the city, and many were autistic, and many came from incredibly difficult backgrounds too. He was incredible and often had to reeducate staff away from referring to them as ‘naughty’ and plenty of other terms that we would gasp at today. It puts into context some of the comments on attachment on here.

just dropping this thread on X explaining in great detail the psychological complexities and variations of what really going on behind masking.

x.com/sanilrege/status/2030218170402054452?s=46&t=VQvhdxrqLS8ncz-Cr115Nw

That Naomi Fisher piece was great - thank you to PP. The parallels with the trans issue are clear just in that short blog - people making a trans identity foundational, the weaponisation of suicide, the vitriol and inability to discuss in a calm and nuanced way. The common factor is online communities that discourage people from thinking and which sees disagreement as harm.

I've been here at FWR for years, but change my name every two minutes, especially when I talk about my children. I nearly wrote "radicalised online communities" but because I know that that charge is levelled at this place, I instead described what those communities do and what this one imho absolutely does not do.

Over the course of this discussion, I've gone from thinking that, on balance, engaging in online autism communities would likely be helpful for my DD (in helping her normalise her struggles and find support) to thinking that, on balance, engaging in online autism communities would likely be unhelpful for my DD (as it would risk her centring her identity around autism and self-pathologising).

[Edited for typo]

I have recently visited 2 special schools designated ‘autism provision’ where the leaders were saying that whilst all of the pupils had a primary diagnosis of autism, the most pressing needs were mental health needs.

There was very little good autism practice in evidence in these schools. The environments were ‘high arousal’, there was a lot of talking at the pupils (loads of words), the classrooms weren’t predictable and there were lots of transitions within lessons let alone between them. My feedback was (1) could the distress they are noting be arising from the pupils autistic needs not being met rather than a separate mental health condition (2) should the pupils be in a setting designated to meeting SEMH needs if there autism needs do not require specialist autism adaption / intervention.