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

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.

'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.

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/

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!

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!

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.

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.

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.

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.

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.

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.

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.

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.

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 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/

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

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.

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?

This is taken as read that there is something damaging about a pre-verbal child being with anyone but a parent - but this is a cultural assumption, not a proven fact. Looking at history and across the globe, a child spending all their time with their mother is no more universal than nursery - 'group care' might well be closer to how our ancestors raised toddlers than modern, intensive mothering. Throughout most of history a woman who told you that her primary occupation was paying attention to a two year old would have been considered, at best, eccentric.

I see it suggested quite often that changes in the school environment may be the reason behind the rise in teenage diagnoses.

I'm just not convinced by this though. When I was growing up in the 80s/90s I had primary school teachers who shouted and the threat of corporal punishment was still around. I had a brief period of school refusal aged 7 and I still remember the headmaster screaming in my face because I was crying for my mum and wanted to go home. As I remember it, my parents dragged me in every day until I gave up struggling. There were no reasonable adjustments.

I was at a very academic, pressured, selective secondary. There was one girl who with hindsight probably had ADHD and one or two with anorexia, but I don't remember anyone school refusing, having selective mutism etc.

To be clear - I'm absolutely not suggesting that we need to go back to these methods of schooling. But schools were pretty harsh, difficult places 30/40 years ago and yet, by and large, kids did cope with it, although I'm sure many found it very difficult. There certainly weren't the same numbers of kids with EBSA that there are now. I just don't see that schools really any more difficult for ND kids than they used to be.

I’m also interested in the relation between trauma and autism. Or at least the overlap of how it presents. So is someone’s ARFID to do with their autism or the fact that there were arguments at the dinner table loads and they now associate food with stress? It’s very hard to look at family dynamics and how these could contribute to a child’s or adult’s challenges.

And I’m also interested in the studies on neurotypical people and how many actually find social interactions easy or secondary school corridors easy. Since the rise in diagnosis of women in their 30s or 40s, I know lots of people who are autistic or ADHD. Quite often, they’ll make statements about neurotypical people, like ‘I’m not like neurotypical people because I don’t like small talk’ as though neurotypical people love small talk. Or, ‘I’m autistic so I just say what I think, not like neurotypical people who don’t say what they mean.’ Or ‘I’ve always felt like I didn’t fit in’ as though neurotypical people always feel like they fit in. Or ‘I’m autistic so I have a strong sense of justice’ as though neurotypical people don’t.

I don’t know what I think of that actually, it’s just something I’ve noticed now that more and more women are being diagnosed with or identifying as autistic.

I’ve been thinking about the different groups mentioned up thread - early diagnosis versus teenage diagnosis (especially in girls). And reflecting on the employment statistics.

From my own experience as the mum of a teen-diagnosed dd, the issues were clearly apparent from primary school eg having to be physically handed over crying to the teacher on the door to get her in to school, nurture group to help her go into school more calmly, selective mutism (seen as shyness). But with a supportive school and family, and because her default in a busy class of 30 was silent weeping, it never met the threshold to be seen as a problem.

Secondary (small, selective) also adapted to met her needs, but as she got older what looked like developmentally normal shyness and awkwardness became more different compared to her peers. But again, with the right support at home and school, and a few adjustments, she can manage. Without them she wouldn’t be at school, or any of her other activities.

I’ve been wondering if the rise in teenage diagnosis is because we’ve lost the human scale institutions (especially schools and workplaces, hobbies seem to do this better) where those adjustments can easily be made without a formal diagnosis.