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

This is an excellent post

That a really good article.

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

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.

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

Either way, nail on head.

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/

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.

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.

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!

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

@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?

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.

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.

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.

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.

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

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

Your first paragraph really describes a lot of what’s going on ‘behind the scenes’ in a later diagnosed autistic person and points to the underlying sp and lang need, as well as the associated input OTs can have.

A useful way to consider the spectrum was suggested a while ago, whereby it’s more of a colour wheel. With this approach it’s easier to see how one or two areas of difficulty could be given targeted interventions and support.

the problem is that not been happening. If early intervention was more rigorous and routine, looking at social language and communication, without requiring a full diagnosis, it’s quite possible that many children wouldn’t get the eventual autism diagnosis.

It already evidenced that where this has happened ( with a diagnosis, but really good targeted multi disciplinary support on those areas of need) that the individuals as adults, if re tested, wouldn’t get an autism diagnosis. Early intervention is really key.

And it comes back to the issue that all the things you describe, if not supported or recognised or accommodated create extreme anxiety and depression. Which any child may also have, due to other factors, that aren’t related to anything like a diagnosis such as autism. In some children this is self destructive (self harm, anorexia, trans identity, drug abuse) in others it’s externalised (‘disruptive’ behaviour, violence)

I am concerned about the changes to ehcps IF the associated changes and decent support for early years provision / interventions doesn’t happen. It also takes away parental legal protections that can be embedded in the ehcp. At the same time, I would hope, what what they say their plan is, that the system is embedding a deeper duty of care in schools who’ve definitely got into the habit of passing the buck (not bothering with certain children so parents end up having to home school and fight the system) in order to maintain shiny results.

There does seem to be a diagnostic muddle in both directions - people who'd experienced childhood trauma and had ASD could wind up with Borderline Personality Disorder diagnoses if initial assessment wasn't careful enough.

@OpheliaWitchoftheWoods On 2nd reading, you interest me strangely. "Inability to learn by immersion" - you mean 2nd & further languages?
Is this inability to learn by immersion a prequisite of diagnosis or more of a general trend?

Well it's much better than it was when she was younger and in many ways she has a fairly happy life now. It's meant her mum has a job where she works out of the home, and eventually they will have to think hard about what will happen when they are gone.

But in terms of the severity of the brain differernces, or differernces from the "norm" it seems to me that she is clearly farther from that than someone like Elon Musk, or Anthony Hopkins, or even my friend's daughter who has struggled but will likely be able to have a job and a family and so on, if she wants them.

I remember a friend and colleague saying that in many ways she was glad her autistic son (who would be seen as ‘severe’) wasn’t aware that he was as ‘different’ as he was as she knew the children we taught who had more social communication skills were more aware that they were different to their mainstream peers and so struggled emotionally.

I wouldn’t ever say that your niece’s autism was mild. It sounds extremely difficult.

@Missproportionate I think it's spot on. Which is not to say that the difficulties of women in particular who are functional with low support needs should be ignored. Rather that lumping all needs together under the one diagnostic heading has become unreasonable and disadvantageous to those with classical autism and the associated impairments that massively impact every area of their life.
The pendulum has swung too far. Shades of Baroness Mary Warnock regretting aspects of the SEN reforms she led on for the original Code of Practice in 2001.