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

No I don’t think it’s just the curriculum. But a tougher and more fast paced curriculum at the same time as increasing Sen will mean more struggle more quickly.

I think this.

We moved from oversubscribed school with 30+ past KS1 to school with much smaller intake and it was much easier for our kids to get seen and get help and just be.

I also know it may be more subtle changes as Diss been told the school day changes implemented this year don't suit her DS and a few others but instead of changing back to previous years layout those kids have ended up on reduced timetables put on waiting lists for waiting lists and labeled as problematic.

I noticed a PP mentioning dyspraxia and unstable joints. We have dyspraxia in the family - but it's not on any medical records we also have joints that commonly click out of place for a bit and then go back or mild but constant digestive issues - HCP looked bemused or uninterested if it does come up so for us it's just something that happens and you just live with but I would love researchers to look into if it's related.

There is also delayed processing and OTT texture and sound senitivies but they tend to get lump under other lables or diagosses which are frequently co-morbid than treated as seperate problems.

I'd love more research - I mean hay fever got more common over time as I think has asthma and both are in our family and sometime linked with increased likelihood of ADHD diagosis which is also increasingly happening in our family as well - we tend to lots of co-morbity diagosises.

I think more research clearly needed, better defined and categorised sub catergories which would probably be easier if it wasn't a huge slog to get anything diagonsed - plus years of being told your imagining it or looking for excuses for poor parenting/child behavior or it's likely but then block paths to diagnosis as they are coping ignoring the effort and support that's taking or till a crisis hits.

I think also looking at what not helping in schools - larger classes more group work than in past noisy visually and acoustically classrooms which mean kids that cope in past now really struggle.

I don't think shutting down debate and research into what going on is at all helpful but there is a definate ND isn't really real unless it has classic presenations and is extreme thread in media coverage and on here which is unhelpful.

I think, just my take on it, is that for some reason, unlike many disorders/conditions, it seems to be tied up in an identity and personality. The very thing that the 'community' argue against (thats its not personality quirks or differences). There are very contradictory viewpoints I think

So if you start querying how this ND manifests or that ND manifests, what it means for this person or that person, whether its an umbrella term or not, whether its genetic or not, whether its a concrete diagnosis or will change, I think some people see that as a threat to 'who they are'.

probably not explaining it that well but this is what I think I see.

Secondary school brings additional complexity for autistic children…..

Sensory and environmental load:

• corridors with higher noise, movement
• Frequent room changes with shifting lighting, smells, and layouts throughout the day.
• Larger buildings with more visual and auditory stimuli to process.

Transitions and routines:

• Multiple daily transitions, moving between lessons increases cognitive strain
• Variable teacher expectations bringing different routines and rules to interpret.

Pastoral challenges:

• Reduced continuity whereby fewer adults know the child well.
• Higher performance pressure with focus on high stake exams

I just do not understand why these places have to be like this and why people/teachers and children are expected to function well in them let alone learn

As I said right at the start of the thread, these systems we create are inhuman. They are not designed around humans. Its quite incredible.

Even primary schools these days are massive with loads more children per class than I remember 50 years ago.

Yes, a busy secondary school is so far from optimal for anyone who uses it, both teacher and pupil that it would make far more sense to address that than for struggling individuals to have to first obtain a diagnosis in order to have a few not good enough accommodations made.

I think this is where NF might have been hoping this decision might lead.

I do think environment is a really important factor in how well high functioning autists manage, particularly at secondary school level. It really didn't help that the school was huge, noisy and unpredictable compared to their more nurturing primary. Additionally, my DC lost a lot of familiar faces as most of their junior school cohort went elsewhere.

But I think overall it was a perfect storm of many things: the hormonal changes of puberty, the change in the rules of engagement between teenagers; banter, piss-taking, the increasing pressure to conform, understanding all the new subtle codes governing interaction - as well as the unpredictability of lessons etc
I think it was just too much to manage alongside all the other plates their neurodivergent brains were spinning.

For my DS his symptoms were acutely physical - throwing up, poor appetite, sleeplessness, constant pacing. He endured for a year, although he spent most of it in the medical room, before we put our foot down and refused to send him until he could access CAMHs support.

In contrast, my DD just retreated into herself more. She did the minimum of interaction with peers to get by and limit the risk of bullying. Her life was made bearable through her special interests which she threw herself into in the evenings and weekends. But it still caught up with her in the end and she had a breakdown immediately after her GCSEs ended. She really was completely burnt out with the exhaustion of 'containing' herself every day for 5 years (not talking about her own interests, pretending she wasn't upset by the banter/name calling/exclusion from friendships, wearing a uniform she found uncomfortable). We felt so guilty because we assumed, unlike her brother, she appeared to be negotiating social expectations reasonably well and didn't appear to be miserable outside of school. She told us she didn't tell us as she didn't want to worry us.

This is why I think it's important to recognize that boys and girls can present differently. I really don't think my DD is less autistic or 'aspie' than her brother but I do think she is less immune to the pressures of socialisation and conformity. I also think she has higher levels of empathy and wants to protect us from her pain. At school, this all made it look like she was coping, definitely not loving it, but managing to find a way through it. But the reality is it came at a ridiculously high price - she spent the following five years desperately trying to rebuild herself and there were times her mental health was so bad we worried we'd lose her. Minimizing these kinds of experiences of women and girls feels very risky to me and really not great feminism.

Oh I'm so sorry @Jamclag that's hard. I hope they're both getting on better now. My wife and I are both pretty spicy but undiagnosed. She has struggled a lot with MH which is massively due to ND I think. Me less so, and what you said about your son being less susceptible to social pressure rang true for me.

For some reason I'm partially social blind and (increasingly over time) verily dgaf too much about social mores. Ups and downs with that but honestly a lot of the social cues and nuance that I miss are tedious and annoying anyway so I don't care to miss them!

We worry a lot about our DD 8yo but so far she's getting on quite well. We can see a lot of traits coming through but so far no massive issues. What you said about your DD was a bit worrying but we just have to keep an eye, and hopefully teach her some of our massive bags of coping tricks

Firstly language policing is very tiresome and adds very little. Maybe have a conversation about‘Hypersensitivity’ and perhaps a new term with evolve from tha dialogue.

Someone far smarter then I has used diabetes to make an excellent point on this. There is diabetes type 1 and type 2. Both are diabetes but the underlying cause of diabetes is fundamentally different and two very different treatment pathways exist. Neither group of diabetics has been erased or harmed by our understanding that there are two types.

I have an ASD child. There are a lot of us parents with autistic children who think that biologically it’s very likely that there is most likely sub types going on with autism. You may have this conversation in private amongst those you trust but you keep it to yourself in wider community because you could get kicked out of the group for stating this.

This outrage is preventing good quality research being done. You can get accused of being ableist and wanting to erase autistic people if you’re not very very careful in some spaces about the words you use.

She needs to clarify this; the more I’ve looked into the hyper sensitive person profile (est 20-30% of the population) the more I see elements that many seem to repeat as autism on social media.

I watched a random reel this morning where someone who is apparently autistic and adjd ‘described their stims’ that they didn’t know were stims: ear rubbing, foot wiggling and nail nibbling.

These are all entirely normal?! I can certainly add to that list!

My point being watch enough of that kind of content and you’ll increasingly believe that that is what autism is and that you may have it.

Hypersensitive person profile:

https://health.clevelandclinic.org/highly-sensitive-person

(I can hold my hand up and say yes to most of it. It’s what led me to my current career but also a lot of burn out.)

OP there’s nothing wrong with you being diagnosed in your 50s. It’s not really a bandwagon is it, when there’s professional gatekeepers to a diagnosis. Women who are now in their 50s would have been hampered in any earlier diagnosis by the fact that in general most people including the professionals would not have considered female autistic presentation to be autism. Consequently we have generations of unsupported or persecuted girls and women who have never had the opportunity to seek a diagnosis. You can and you did and that’s great if you think of all the harmful neglect of girls’ and women’s needs that’s gone before. It’s something to be proud of and I hope that you find the diagnosis very helpful to your self understanding.

This had been a great discussion!

I'm now, though, thoroughly confused about the definition of dyspraxia a couple of pages above. Almost all of it seems to be an overlap with ADHD. It was surprising to read the non physical aspects recognised as part of that problem.

I think also that it is easy to misininterpret , if you live it, the clumsiness caused by attention defecit with actual dyspraxia. I used to believe I was dyspraxic but now realise that I fall over through tendon issues from another condition combined with inattention. Bust my thumb last week tripping over a defect in the floor of a car park!

Today I saw announced another tranch of genes implicated in ASD. I don't think we are anywhere near understanding the various presentations of ND people.

On the strength of this discussion, I'm going to go back to calling the DH Aspergers. I think it will help him understand himself.

This post just came up on my twitter feed which links exactly with what @Jamclag was saying about her daughter and her 'masking' which was actually not just 'performing being neurotypical' but intensely suppressing her emotions. It would mean that she would need to work even harder than others to learn the work as well.

"The actual research is wild. Every time you push down a feeling, your brain has to choose between suppressing that emotion and recording what’s happening around you. It picks the suppression. The memory doesn’t get saved.

A 2000 Stanford study confirmed this: people told to hide their emotions while watching a film remembered far fewer details than people who just reacted naturally. Suppressing emotions uses up mental energy, and that leaves less brain power for saving new memories.

Brain scans show why. A 2012 study found that suppression quiets the hippocampus (your brain’s memory-recording center) right when it should be saving information. The two brain regions that normally team up to lock in memories stop talking to each other.

Over time it gets worse. Suppression keeps cortisol (the stress hormone) elevated, and cortisol shrinks the hippocampus. Chronically stressed people can lose 10 to 15% of its volume. Just three weeks of high cortisol can shrink the tiny connection points between brain cells by about 20%. The good news: studies show this shrinkage can partially reverse once stress levels drop. Not necessarily permanent."

(there is far more discussion in the tweet)
https://x.com/anisha_moonka/status/2031161794413343134?s=61&t=U9XrcF693-JpMxeIueYG7g

His post on reversing impact on brain

A lot of people are asking on how to reverse this so here’s what the research actually says.

The hippocampus (the part of your brain that records memories) can physically recover once you stop chronically suppressing. A study on patients with extreme cortisol levels found up to 10% volume recovery after their stress hormones normalized.

Three things that speed this up:

Exercise. A 2011 University of Pittsburgh study found that adults who walked 40 minutes, 3x a week for a year grew their hippocampus by about 2%, effectively reversing 1 to 2 years of age-related shrinkage. Walking. Not even intense exercise.

Reappraisal over suppression. Instead of pushing a feeling down, reframe what caused it. “This isn’t a disaster, it’s a setback I can fix.” A Stanford study found this costs your brain zero working memory, so your memory center keeps recording normally. Same situation, completely different outcome for your brain.

Sleep. Deep sleep is when your brain consolidates memories and clears cortisol. Chronic suppressors tend to have worse sleep quality because unprocessed emotions keep the stress system activated at night. Fixing the suppression habit improves sleep, which improves memory encoding, which compounds over time.

The damage from years of suppression isn’t a light switch (as expected). But the brain is more plastic than most people realize. The recovery starts when this pattern stops.

Number 2 is “rational cbt.” It’s very good

But I’d say autistic children would find it challenging without a lot of adaptation

(as an aside, puberty blockers affect the hippocampus.)

Well well. DD often says she has no memory of some things and some periods of time. Yet she has perfect recollection of others.

I thought it was because she repressed the memories. But perhaps she never formed them.

I think there is a big element of identity and sense of 'tribe' especially in self diagnosed group, and questioning the diagnostic criteria makes people feel their identity - and struggles they have - are invalidated. ND reframes struggles in a more positive manner than 'depression', or 'personality disorder' or even 'trauma'.

Both those posts are absolutely fascinating. Thanks

When I read about it (while DS was waiting for diagnosis) I usually saw it described as in the piece above, ie as highly sensitive rather than hypersensitive. It’s a better term really because hyper can mean extremely but it can also mean overly, so the term is ripe for confusion. (Especially if you want to be angry about this I would say.)

An interesting thread. I will come back to read it properly but bookmarking for later.

I do see rigidly-held identitarian overlaps between autism and the gender communities. And the overlap between trauma/attachment disorders and what is perceived as autism spectrum.

Autism has been diagnosed several times within my family over the last 10 years. Next gen seems more overtly autistic than mine but then my generation experienced a lot of trauma and the overlap between the two (thanks to a wide spectrum) are significant. I'm pretty certain I'd get a formal ASD diagnosis if I went down that oversubscribed route as I recognise all of the traits OP mentions. However, I do wonder what neurodiversity can possibly be if we haven't got clear parameters for neurotypical. What is 'normal' and what isn't?

I remain wary. I do not think people who can hold down jobs, raise families, run a business etc have any business sharing the same label as my friend's son who is non verbal and unable to live independently. Resources should remain with those who need them the most. And I guess that's where the rubber hits the road for me.

Genuinely not meant to be goady but has anyone ever come away from the diagnostic route without getting an ASD diagnosis at the end of it? I seem to know a lot of people, mainly women, who have sought a diagnosis later in life, On the one hand, people are recognising the struggles they experience and wanting to understand themselves better (But I'm recognising these struggles as reported and assuming they are common?) Then there's the ever moving goalposts of the DSM, written and funded by Big Pharma. Unless I'm mistaken, there is no biological test one can take to rule in or out ASD or any MH diagnosis? So the diagnosis is dependent on subjective interpretation from a broad symptom pool. I have similar concerns about all MH diagnosis BTW, not picking on ASD particularly. I think we live in a time when people tend to look for validation outwards, are genuinely overwhelmed with stress and information overload and struggle with any and all forms of discomfort.

Yes my DS actually. He was assessed at the Michael Rutter centre (part of Maudsley) in 2014, very intense detailed multi-practitioner assessment for ASD - leading to an ADHD diagnosis, but not ASD.

I agree, and I have copied them to keep as they are so informative. They could help anyone enormously. Thank you both @WarriorN and @noblegiraffe .