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

I think in some societies a baby starts by never being put down but always carried by their mother or someone very close to them for a considerable period before being passed on to get on with life one way or another when the mother has the next baby.

But in the life the child moves on to, in the group settings in other times or societies, a baby/toddler does not/did not go from mummy/father/carer to a busy nursery, but to a grandmother, aunt and older siblings, or cousins; and, outside that group, to a familiar entourage of people in a familiar place.

To my mind it is not that nurseries cause autism, but that even if they are good, some children are predisposed to be extremely stressed by the separation and by the atmosphere in the nursery, even though other children , more gregarious and confident, may take to it much better.

In addition, there does seem to be evidence of higher cortisol levels in young children in nurseries.

Might some children,
who are predisposed to stress in nursery settings but who seem all right before they go, have autistic dna so that nursery induced stress then becomes a possible environmental trigger - a bit like a traumatic experience might?

Re cortisol levels:
Excerpt from article linked below:
Interest in child care as a stressor capable of activating the HPA axis can be traced to a serendipitous finding published a decade ago (Tout, de Haan, Campbell, & Gunnar, 1998). Tout and colleagues were studying associations between day-to-day variability in cortisol levels and children's socioemotional behavior. When they examined their morning and afternoon cortisol data, they found that most of the children showed a rise in cortisol from morning to afternoon and they did so on most of the days they were in child care. This was remarkable as the typical basal pattern of cortisol production between mid-morning and mid-afternoon tends to be level or declining for children of this age (Watamura, Donzella, Kertes & Gunnar, 2004).
Since publication of the Tout et al. (1998)study, there have been a number of studies examining cortisol activity at child care. Two recent meta-analyses have summarized those findings (Geoffroy, Côté, Parent, & Séguin, 2006; Vermeer & van IJzendoorn, 2006). Both papers concluded that the rise in cortisol from morning to afternoon at child care has been convincingly documented and that this rise is not seen in the same children when they are at home on non-child care days. Both meta-analyses also concluded that age is a relevant factor, with larger increases being observed among the younger children (2- and 3-year-olds) as compared to the older children (4- and 5-year-olds). However, the two meta-analyses differed with regard to two critical issues: (1) whether child care quality influences the magnitude of the cortisol stress response over the day at child care, and (2) whether elevations in cortisol at child care are associated with children's temperament or behavior in the care setting.
Regarding quality of care, the first meta-analysis (Geoffroy et al., 2006) concluded that it has been shown conclusively that cortisol levels are higher and rise more over the day in poorer quality child care, whereas the second meta-analysis (Vermeer & van IJzendoorn, 2006) noted that nearly all of the child care studies of cortisol activity have been conducted in relatively high-quality care settings and thus child care quality cannot be the primary factor determining increases in cortisol at child care.

https://pmc.ncbi.nlm.nih.gov/articles/PMC2946618/

There a link between autism and high cortisol levels.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3245359/
Would these children be so easily stressed from birth, or might some environmental events make this innate proclivity much worse?

Correlation does not equal causation. One cannot just say 'there's been an increase in daycare use and an increase in autism therefore I think the one causes the other.'

Daycare causes high cortisol levels in babies. Autistic people have high cortisol levels. Therefore the daycare which causes high cortisol levels must 'unlock' autism in those babies giving them high cortisol in later life.

Or: we have spent quite a lot of time on this thread discussing 'masking', and how stressed autistic people are just getting through the day. Stress causes high cortisol levels. Therefore the cortisol levels are indicating two groups stressed by their surroundings.

Yes, we cannot be sure which way round it works.

I forgot to say that identical twin studies show that autism is genetic, but it is in 60 - 90 % of cases that both have autism in spite of them being identical. Twin studies also show that even when both twins are autistic, one may be more severely affected than the other.
This suggests that some environmental influences may also affect outcomes.

Early life experiences may shift severity of autism
A child’s environment exerts a strong influence on the severity of her autism, a study of identical twins suggests.

^Editor’s Note
This article was originally published in May 2019 based on preliminary data presented at a conference. We have updated it to reflect findings published in Behavior Genetics1.^
www.thetransmitter.org/spectrum/early-life-experiences-may-shift-severity-autism/

I remember a psychiatrist researcher who had studied genetics on triggernometry a few years ago saying that <anything> was roughly a third genetics (nature) a third up bringing (nurture) and a third completely accidental. (Eg, a gene just turns on or off.) I think a lot of his work was on twin studies.

This was referring to any sort of behaviour, condition, IQ, personality etc. (and he’d had a lot of push back early in his career due to eugenics concerns)

And Uta is right that if the research into those at the “lower end” of the spectrum (for want of a better word) was better, it’s quite possible that we’d know more about all of it.

I have ranted on another thread recently about the fact that nursery nurse training stopped a few decades ago and what an issue that has been in childcare.

Most have now retired. I have worked with a few who became TAs and my son was at a nursery with a properly trained nursery nurse. They were deeply trained in Piaget etc and also how to do observations with running records etc and then how to reflect on findings, set next steps etc - not even teachers are taught this. I’ve been taught via and it’s a very unique skill that must be done properly but I certainly use regularly in snippets.

I don’t want to do child care/ TA courses down AT ALL - they’re very much needed and there are fabulous child care workers out there. But the courses are not as in depth as the old nursery nurse training, from what all of these women have told me. The one at my son’s nursery seemed to indicate to me once it was a huge loss to the profession (presumably based on what she’d found with younger colleagues) Childhood studies degrees may be more in depth and IIRC you’re supposed to have teachers at the upper end / just pre school, but as I say, teachers aren’t being taught much of this deeper level of childhood theory.

Re child care studies - in America maternity leave is practically non existent. So these studies need to be held separately to studies in other countries.

This Pew Centre chart showing maternity leave shows just how right you are about the USA.
Among 41 countries, only U.S. lacks paid parental leave
https://www.pewresearch.org/short-reads/2019/12/16/u-s-lacks-mandated-paid-parental-leave/

A useful thing would be to know the difference between rates of autism in Estonia where they have 86 weeks of paid leave, and the US which has 0. But I think it is impossible to compare them in practice.

The USA does have a much higher proportion of autism than other countries but of course that could simply because of more awareness, a wider set of criteria, and more diagnoses.

Great post.

From what I've heard, Finnish and other Nordic nursery systems seem to have better results, probably due to the fact that workers must have a bachelor's in childhood education, the ratio of kids per worker is lower, mixed age groups are more common which fits with how smaller kids were traditionally raised & learning is play-focused (eg. Forest school programs took inspiration from Danish nurseries).
Also, a big one : more maternity leave so that kids who are in nursery are a more appropriate age.

But even with those things, as you say, some children may simply be less suited to that way of being raised and this should be taken into account.

The problem for me with this discussion is they don’t really fully understand what autism is. And we are trying to look for rates and numbers based on a subjective diagnosis where there may also be an external factor of how education is approached in different countries. Which vary greatly. The U.K. has one of the largest school class size numbers in the world, for example. And a new obsession with uniform.

Don't get me started on uniform. Our primary has a yellow / green uniform with grey. And all black on PE days (no branded trainers). OK fine, and I'm grateful that there's no requirement for school heraldry - we can just use generic polo or cardigans etc. But this week we've had a mufti day for the air ambulance. Theme - green and yellow. And it's on DD's PE day. So she's just gone to school in her normal uniform on a PE day and we've paid £1 for that. Today she's away to a trip so instead of normal uniform it's PE uniform. OK got it. And on Friday it's another mufti day, and this time they want a fuckin EASTER EGG. I was already raging about paying £1 every other bloody week for the endless mufti days but a bladdy easter egg, come on.

Sorry off topic completely but on-thread I think it's triggering me more because of my ND traits! Like we have to keep track of two entirely different uniform outfits, one for MW and one for TTF, fine. I can get that done, but stop bloody changing the parameters every other week, it's doing my melon ffs.

It's not that clearcut. What one person sees as attachment, another will describe as ND. Family dynamics can be described as ND family patterns. The lack of attunment can be described as differences in communication. Lack of warmth can be seen as reduced emotional expression etc.

I’ve been at my school for 20-odd years, the uniform has not changed in that time, except to be slightly more relaxed, I’d say that the discipline system is also more relaxed in that class teachers don’t hand out detentions anymore, and yet we have loads more kids refusing school and kids diagnosed with SEN.

I'm very late to this discussion (still on page 8) but would like to make a point re. whether children should be taught (appropriately) to fit in or not.

As a late diagnosed person with whatever it is we currently call autism (!), I'm glad I was expected to fit in and learnt to. However, I would have avoided a hell of a lot of psychological trauma and the permanent effect this has had on my life if it had been known I was autistic, and this taken into account. So I think diagnosis of some kind is important, rather than simply offering the support and then the child never getting the diagnosis (it also aids understanding and self-understanding later in life, especially important around mental health including how one may be perceived by services).

But my main point is - there is a strand of disability advocacy more generally that thinks the aim shouldn't be for disabled children to fit in. I know someone with a very severe and progressive physical disability who believes they shouldn't have been encouraged to walk (with leg braces and crutches) as a child. The idea is they should be allowed to be disabled rather than trying to make them do something they can never do normally. This person has also chosen not to keep up physiotherapy exercises, saying they would use up too much energy and time, despite being designed to slow progression of the disability.

(Intriguingly the same person has pushed on and exceeded expectations in other areas eg. professionally.)

But I was gobsmacked at these ideas and frankly disagree with them. But they are a thing!

Where it is important to acknowledge difference/disability with autism, whilst still teaching the person how to fit in/do stuff, is to do with the amount of mental energy (or spoons - don't shoot me!) this takes, as well as what happens when that energy runs out. For myself, I don't identify with the term "masking" as I don't feel I'm covering something up, I'm just doing the thing/interaction. But apparently this is taking more mental energy than for a "typical" person. So I have to have some way of acknowledging that and being able to stop or step away, before the mental capacity/energy runs out. And if it does people need to understand that I suddenly lose the ability to interact normally (terrifying from the inside). Incidentally, people would absolutely argue that I don't need any accommodations and probably shouldn't have a diagnosis, until they see this... however my aim is for no one to ever see that, and not to experience it. Bit of a catch 22.

Apologies this is longer than I thought!

yes I think that everyday tasks like multi-person socialising might well take more energy depending on the person and even for the same person can differ due to other factors day to day or moment to moment.

I think it's encouraging/good that there's more awareness of the concept of 'social battery' and that it's increasingly accepted that sometimes for whatever reason, you might be "all peopled out" or "socially done for the moment" or however you say it. I remember I used to just slope off to a quiet room and read a book (any book, the best one available where I was) when that happened to me, and nobody seemed to understand why, or even accept it. I would get dragged back to socialise because somehow that was needed of me, regardless of my current lack of ability to do so!

Has anyone seen the recent clip of Tony Attwood, talking about realising he is autistic? It's quite pertinent to this debate.

He talks about the width of autism broadening during his 50 years involved in the field, and how he now recognises (thanks to people close to him pointing it out) that he too fits under this wider definition. Interestingly, he adds that he is not impaired by autism.

To my mind, this supports some of what Frith was getting at. I don't agree with all that she said, but surely getting clarity of what is/isn't what we think autism is, and establishing whether there are other conditions that have overlapping traits that we have come to call autism, but could have more helpful descriptors would be useful?

Rather than diminishing late diagnosed women and teenage girls, surely we do them more of a service by understanding their needs better with a new name and diagnostic criteria, rather than lumping them all under an autistic umbrella that says very little about their difficulties.

Link to the short Attwood video here: www.facebook.com/share/v/1Fr97KfX7r/

'Interestingly, he adds that he is not impaired by autism.'

There will be a group which will argue that if there's no impairment, he's not autistic. Previously he may have fitted in under broad autism phenotype.

I will continue to argue that the problem is not another, better diagnosis - but the lack of support, systemic male bias and poor services, particularily for girls and women.

Thanks very much for that link @Kingfishr. To be honest my mind is boggling at the fact that you can be on the autism spectrum without impairment, when the diagnostic criteria say there must be ‘clinically significant impairment’. The other speaker in that clip, Michelle Garnett, said she was late to discover she had autism too, but she said she had anxiety and clinical depression which she understood through a different lens previously. That I understand.

Atwood did mention he experienced childhood trauma so perhaps he had issues that he misattributed to that? But he did say he was not disabled by his autism which seems counter-intuitive to me. I realise others think differently, but I agree with what Frith is saying I think.

There will be a group which will argue that if there's no impairment, he's not autistic. Previously he may have fitted in under broad autism phenotype.

Cross-post @GreenGoblin09. Yes, I think I’m one of that group.

Isn’t the name for people who are exhausted by socialising with large groups of people merely ‘introvert’?

I think thats a good question. I would describe myself as an introvert, because my understanding is that its someone who doesnt 'need' people around them to thrive. Whereas an extrovert has that 'need'. Its not necessarily about whether its good for you as such

And then I think about the fact that I do like to be around people, but they equally can exhaust me over long periods. So Im an easily tired extrovert! As a child I was much more social, social butterfly, then as I grew older I think I lost confidence and would have said I was an introvert. Now much much much older I like being out and about with people but within limits or I get tired.

I think that's a very broad term.

I suppose it comes down to why someone would be exhausted from socialising with others.

If you're autistic and socialising tires you out it can often be from sensory overload, overwhelm, communication deficits etc.

In my autism assessment I briefly remember being asked if I like to read books, and I said yes.

I then had to be prompted to say which books and what they were about.

Then my assessor along with the supporting clinician started talking to each other about Vampire Diaries, and I just sat there and observed but they were checking to see if I would join in, ask questions, show an interest, but by this point in the assessment I didn't have the wherewithal to even speak and the exhaustion that came afterwards landed me horizontal for 2 days.

It was reported in my assessment feedback that I lack emotional reciprocity.

When I am with company I have to very consciously remind myself I have to ask these questions because they aren't automatic to me at all, where they seem to flow easily from others mouths. It's really hard especially when it's busy and you're someone like me with auditory processing issues and words just sound like squiggles unless I'm paying extremely close attention and there's no other stimulus in the background.

I don't think I'd describe myself as an introvert, but I definitely find socialising extremely exhausting.

My brother on the other hand can easily socialise but much prefers a good book and his armchair, and I would describe him as an introvert.

Yes, this idea of a broad autism phenotype, it's interesting. A lot of the 'autism community' talk about the spectrum rather than a linear scale, but surely at some point there is a cut off for impairment - either experienced by the person or observed by others? And what about those with 'autistic traits' but not diagnosed as autistic? Surely that speaks to being 'a bit' autistic?

So once again we are back at Frith, saying autism is now too broad?

We need some phenotypes surely? Classic autism (associated with LD), what was Aspergers, masked autism, sensory autism? There are likely to be others? Maybe do away with the term autism for the last three and choose a different descriptor?

This way people can be identified and their specific needs met, rather than generic adjustments suggested/made that don't fit and don't help much?

Sticking everyone under the ASD umbrella because 'spiky profile' was just stupid. It was just a way to raise the bar on assessment criteria IMO, but many in the autistic community seemed to think it was a wonderful move because they had once self harmed/felt suicidal/had a melt down in a car park. No one seemed to grasp that the difference between classic ASD and Aspergers was simply whether you also had a learning disability or not - and that that differentiation was probably pretty useful/important.

I'd also say that many people with ASD build their life so that it allows them to cope well and this can make it seem feel to them like they are not disabled by having ASD (or ADHD). I don't think it's unusual in higher functioning people. DS had a pretty shit time through secondary school, no friends, but now has a job in his special interest, something he's very good at and is doing really well. He has a lot in common now with his peers, gets on well with them and would consider them friends - although he wouldn't see them outside work. He wouldn't consider himself disabled. No one should be being diagnosed though because they're an introvert, ASD is much more complex than that.

DS was breast fed, co slept and didn't go to nursery till he was three. He was diagnosed with Aspergers, it is genetic, no question about it - I have at least 4 ND diagnosed relatives, and several older generation that are IMO undiagnosed. I definitely didn't 'push' for him to be diagnosed with Aspergers because of cachet or to feel better about him getting diagnosed. He was diagnosed with Aspergers because he's autistic and he didn't have a learning disability.

The article is just a load of stupid nonsense IMO. For example 'These days, many people are self-diagnosing before they are assessed.' Well duh, if you don't think you've got something wrong with you then you're not going to seek diagnosis are you? No one goes to the doctor with a mole if they don't think it's skin cancer, no one goes to the doctor with debilitating headaches and doesn't suggest they might be suffering from migraines.

I'd also strongly disagree that teachers somehow 'intuitively' know what children need. Teachers often don't have a clue! IME they know very little about Aspergers. Many kids get all the way through primary school without being noticed, DS did and I know lots of others.

The idea that ASD is a more common male 'disease' just like 'psychopathy' is as fucking offensive as hell. Why the fuck would you link psychopathy and asd in this way. It's also highly misogynistic to suggest that the girls being diagnosed in their teens are just over sensitive. I know several diagnosed this way who have other ND family members, it is clearly genetic and they have been masking the hell out of life until the wheels completely fell off. What proof is there that it's not just less diagnosed due to masking - beyond 'her view'. That's hardly scientific proof is it.

I notice she doesn't really say what these 'wide' criteria are that mean we're now apparently diagnosing too many people under the lovely inclusive ASD 'umbrella' - or is she just talking about the emotionally overwrought teenage girls?

I loathe how people are obsessed with the 'explosion' in numbers. There's also been an explosion in numbers of dyslexic children but for some very strange reason no one ever, ever, ever mentions that - or is at all concerned about it. Why is that? Up to 20% of people are now thought to possibly be dyslexic - pretty similar to stats on ASD and ADHD I believe - but absolutely no concerns about that at all for some reason. Weird huh? Even this woman who specialises in ASD and dyslexia doesn't seem to be wringing her hands over that, just that the ASD spectrum is now too big.

The last thing i would say is that there are a lot of things that can cause ADHD like symptoms, including trauma for example, and we need to be careful that kids are getting the right diagnosis so they can get the right treatment there. When it come to Aspergers though there is no treatment. A poorly photocopied booklist was all we were offered by the NHS.

I knew he’d realised his some was whe. His son was an adult and struggling with drink etc.

I didn’t know he was also