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

There are a lot of people who see their doctor for depression. Some of those will wake up one day and realise that they need to seek an alternative diagnosis, and some will be NT people with depression, an extremely common disease in both populations and also one that is frequently misdiagnosed for the ND. In that and other respects the ND people may well be "doing as well as anyone else".

My feeling is there is a huge amount of undiagnosed ND in the population and I've had some pretty strong discussions with people on other threads where I've said that ND communities, if they are being fair, must recognise that there are many NT people living lives they find just as difficult as many ND people do.

I think this thread has already established that state benefits should be being given according to need, not according to an ND diagnosis.

And in that situation, the point of the "label" becomes more about access to prescription medication, support services and voluntary sector support groups that are only available through having the label.

I completely agree that the ASD label is way too broad and the latest brain scanning research suggests that ADHD is at least 2 separate problems, one which shrinks grey matter and one which expands it.

I wanted to add my own personal view point, as a woman diagnosed autistic in my early 40s.

I have gone through life struggling to make and keep friends. I move jobs, for example, and everyone I considered a 'friend' drifts away. It's always felt very out of sight, out of mind. I've tried many times over the years to 'change' who I am, watched people closely to see how they manage to be sociable and liked but have never managed to pull it off. I've attempted to fit in so many times that tbh, I'm not even sure which version is me any more.

Another example of something I've always struggled with is rigidity around rules. If someone isn't completing with a rule or a law (let alone me!), it makes me feel discomfort/panic/overwhelm. Even in situations where there's no significant consequence. COVID was a nightmare for me. Living a life now ruled but 657635 regulations and guidance and threats of killing granny if you don't sent me into spiral.

I've tried CBT twice to manage 'anxiety' and it didn't help, either my rigidity in life or my social incompetence. My self esteem was always rock bottom. I felt fundamentally unlikeable.

Then I watched Christine McGuiness documentary and it was a lightbulb going off. Suddenly I could see women on TV describing what I experience.

I toyed with asking for assessment for a few years but in the end bit the bullet and was diagnosed.

Yes I had to do a lot of 'self reporting' but I was observed doing various activities and the clinicians picked up on issues with my verbal and non verbal communication which I had no idea about. I was diagnosed.

It has not, on the outside, made any difference to my life. I still don't have the close friends I so want. I still struggle with rigid thinking and changes to my routine.

But now, rather than thinking I'm just a crap human who needs to try harder/go back to a therapist, I know it's just how my brain works. And I can forgive myself and understand myself. It's not something I can just magically change if I put the effort in.

I can only speak for myself but for me, that diagnosis explained 40 years of my life as feeling less than and I only wish I'd found it sooner.

Isn't there also a supplementary issue of whether the 70% who are in work are fulfilling their potential in doing so? I had an "on paper" successful career for many years but it still took me longer to achieve goals than it should have done because of my inability to understand office politics.

There are lots of people who neither understand nor play office politics, who could have been more successful if they had sucked up to the right people.
Doesn't throwing this into the mix sort of support the argument that the idea of an autism spectrum has become so all-encompassing it is losing meaning?

Sure but the point is that my total inability to understand how others communicate held me back. Ultimately the constant need to mask at work led to autistic burnout and unemployment. So just saying that 70% of autistic people are in work is not that helpful.

I would say from my DC's experience and some of their friends it's pretty common for academically very able or creative autistic people not to achieve their potential compared to their NT peers. There is definitely a trend of under- employment for this group as well. I'd be interested in any research that looks at the types of employment the '30%' in work are involved in and how that compares to their academic ability/qualifications.

I think this is where the social model of disability really comes into play. My DC have been held back, not by any lack of innate intelligence/creative talent but by the rigid nature of many employment roles, combined with a lack of the 'soft skills' needed to navigate the social and interpersonal side of employment. This has made it difficult for them to network, or even just hang around a bit after work and chat, and make the connections needed to progress in their chosen fields. A lot of the office politics, alliances and opportunities NT employees exploit to get ahead are completely under the radar for many autists, even the very able ones.

What percentage of people who aren't autistic achieve their job potential? I dare say less than half. All kinds of things, like being not ambitious, shy, lazy, proffering a quiet life, family obligations, a fondness for train spotting, a grumpy personality, etc, even being ugly, can get in the way.

I have a hard time seeing how "fulfilling potential" could really be a useful measure. It's a misunderstanding to say that because someone is smart academically, they therefore have a kind of potential in a job or profession that can be abstracted from other elements of who they are.

I really think we need to consign the term "neurodiverse" to the dust heap, because it's meaningless. It's just a word that means that different people have brains that predispose them in different ways. John suffers from insomnia and can't be a commercial pilot though he has his licence and has the brain power, it is a struggle. Jenni is emotionally labile and will struggle as a brain surgeon making life or death decisions even if she is a genius with steady hands. Mark is passive and won't be able to hack the entrepreneurial element of life as an actor despite being uncommonly talented at it.

They aren't failing to live up to their potential, it's that one area of ability does not mean they have potential in any career - those are almost always requiring a number of differernt types of ability.

I have gone through life struggling to make and keep friends. I move jobs, for example, and everyone I considered a 'friend' drifts away. It's always felt very out of sight, out of mind.

I think this is more common than not in modern society. Very few people keep friends in anything like an active way when they change jobs, move, drop a hobby, their kds change schools, etc. Huge numbers of adults, more than half, report not having many, or any, close friends. Most would like them but it is rare.

I only have one friend I maintain contact with from a job, but we were students and became roommates for three years. A few (3) from university, but I can go more than a year without having a real conversation though when we meet up it is like we were never apart.

The only place I've seen it be more common is where people stay put in one small community their whole lives, and in the military.

I am de-lurking to discover that I don’t even seem to have the email address that I used to log in with any more, but this is a discussion I’m finding very helpful and am grateful to have wandered back to Mumsnet while it was live.
One thing that has been clarified for me is that “masking” is not what I thought it was.
@OP I’m curious to know why you find Frith’s original TES interview worrying, whereas this X thread you’ve shared, if I understand you correctly, you’re saying really gets things right? Because I would say they’re saying much the same thing. Winnicott’s False Self (if that connects with what masking is) is about the consequences of insufficient attunement from a mum to her baby. In other words, insecure attachment. I thought that it was very controversial to suggest that autism was (at least in some cases) actually an attachment disorder, but it seems like that makes a lot of sense to you.
Is the difference that Rege is demonstrating that he absolutely takes the struggles and suffering of people living with what Frith calls “hypersensitivity” seriously – as seriously as a clinician would take the violent rocking or absence of spoken language in someone with severe autism? Whereas it reads as if Frith doesn’t think the hypersensitive cohort is as important(?) or significant, as people with “real” autism?
I have a list of diagnoses I’ve been given that's long enough, more recently a counsellor has suggested I investigate an autism diagnosis. In truth the most seen and explained by a three letter acronym (or four, in fairness to the PTSD diagnosis) is when I read W. Thomas Boyce’s “The Orchid and the Dandilion”, and learned about Highly Sensitive Persons. What’s more, it is the only “diagnosis” that (in my experience) has helped other people understand me more. You can find the most accessible explainer for Borderline, or PTSD from childhood trauma, or whatever, but there is an element of, I don’t know, specialist techno-jargon to it all. Whereas, telling close ones about me being a HSP actually communicated something plain and ordinary and human and helped us understand eachother better. There’s an important place for technical, clinical language, and for the rigours of diagnosis, if it can lead to safe, effective treatment. But for me diagnosis in itself hasn’t been conducive to self-understanding or improved relationships.

I’ve bought and am reading Gina Rippon’s The lost girls. Her life’s work is around brain scans and neurological differences or disorders. She took Simon Baron Cohen on in debates around Autism, girls and boys. She also co wrote these papers which are mind boggling and demonstrates how very challenging the whole area is

https://sfonline.barnard.edu/eight-things-you-need-to-know-about-sex-gender-brains-and-behavior-a-guide-for-academics-journalists-parents-gender-diversity-advocates-social-justice-warriors-tweeters-facebookers-and-ever/

https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.3001253

Been a bit on edge about the gender identity bit but I think she approaches it in a way that acknowledges it and ‘the community’ without fully subscribing. She did this in the gendered brain. She notes that the only evidence so far in her field is that there’s clear correlation in the area of the brain around self perception.

She apologises to feminists for ignoring the issue of biological sex, specifically wrt autism obviously. I never read the gendered brain like that; it was essentially debunking gender stereotypes in terms of achievement and intelligence etc and how girls are limited by gender stereotypes. And our brains are a product of life lived.

I’m only a chapter or so in so not got to all get reasoning yet, but the double edged sword issue for me is that she’s clearly been researching the current, post 2013 DSM, landscape of autism and the autistic community.

That needs to happen but at the same time how can we be sure of a clear diagnosis now?

As Firth says, children on the the ‘more severe end of the spectrum’ (which is subjective) are not being studied anymore. Academics in academia who are autistic are studying themselves and each other. Which is not to devalue this; it’s clearly needed, but does point to the issues Firth raised wrt how wide the spectrum is.

As an aside; I’ve now heard from different friends who are practising HCPs in different areas of the country who all say everyone they send for adhd diagnosis gets it. And one mentioned this issue:

https://www.thetimes.com/uk/healthcare/article/how-adhd-became-a-multimillion-pound-industry-for-private-equity-2g6q3w5h2

I also stumbled across the dandelion and orchid book; found a second hand copy to read later.

I have found HSP descriptions very helpful for me too.

Gina describes masking as camouflaging, which is subtly different.

It would indicate copying (echolalia type skill) whilst not understanding deeper social meanings behind what ever social interaction is occurring. This would then be problematic later on when the individual tries to use the same technique in a slightly different context and it doesn’t ‘land’ as they’ve missed lots of nuanced contextual social cues.

It’s actually a skill much younger children constantly naturally work on but are able to comprehend and build on. (Which demonstrates the importance of the early years in terms of social interaction communication skills.) The brain undergoes enormous amounts of change in the first 3 years of life and then again during puberty. It is very sensitive to disruption / ACEs and BCEs at this time. At the same time, it’s well known that autism and LD mean the brain doesn’t develop in quite the same way, which means social interaction and communication skills need more support, a slower pace, prioritisation of key areas. Also a very holistic environment, minimising stress and supporting emotional regulation skills.

Re reading the Rippon, fine and Joel piece, this stands out:

The problem of false positives is also exacerbated by “publication bias,” in which journals prefer to publish positive or “significant” findings. Since even scientists and scientific journal editors can implicitly perceive a finding of no difference as “no finding” – or at least not an interesting one – null results often disappear. Publication bias creates an iceberg-like literature: what you see above the water are the published studies that report significant differences; what you do not see are the many, many more studies that “fail” to find differences. Publication bias means that the research canon becomes populated with many more positive findings than would be expected, and gives the impression that these are robust and reliable.

This is what Firth refers to. And this is what we’ve seen as an issue with Trans research.

@TempestTost I think it's about identifying patterns.
Of course people can under perform for a multitude of reasons but I think it would be interesting to look at this particular 'diagnosed and in employment' cohort and compare their outcomes/employment progression to a similarly qualified 'NT' peer group. If neurodiversity is as meaningless as you suggest there should be very little difference between the two groups - people would be succeeding or failing at similar rates for a variety of reasons.

I'm willing to admit I don't know if what I'm seeing with my own DC and their friends, and what I've read of other autistic people's experiences, adds up to a pattern but I think it deserves further investigation. If there is a relationship there might be reasonable adjustments that could make a significant difference to the employment prospects of thousands of young people - a good thing surely?

On the other hand, if neurodiversity is just a cover for a variety of 'normal' personality flaws and weaknesses, the rates of failure/under achievement should be the same and at least 'autistic' people could console themselves knowing their peers are failing at the same rate as them - yes I'm joking.

Interesting -

but… not all the traits that characterise autism are by definition negative. From an evolutionary point of view of view, having a diverse population has to be useful in some way, and they are:

Being very focused on a subject and pattern recognition are really useful, there’s a reason GCHQ positively values ASD and ADHD individuals.

Being happy on your own isn’t of necessity a bad thing - many jobs need people like that.

Having ADHD people with risk taking tendencies benefits society- in fact I’d bet that the human race needs that - we wouldn’t have set off fearlessly foolhardily across the ocean to new continents if we didn’t have humans with no inpulse control and risk-taking tendencies. I can think of more…

I think we’ve retained this diversity in our population for that reason, and the existence of much more severe incidences of these traits is an evolutionary byproduct. Just like so many more physical conditions exist for that reason; for example sickle cell disease carriers are less likely to get malaria- and there are more examples:

https://www.sciencedirect.com/science/article/pii/S0960982202013751

Silicon Valley is certainly doing well. Apparently a high number of people living and working there are autistic.

@Missproportionate Yeah, I agree - there are definitely autistic traits that give an advantage in certain professions and there are lots of aspects to human diversity that are valuable to society generally.

Again, it would be useful to know the rates of diagnosis in this high-flying group. (I know of two data analysts working in tech and the MOD who would fit this very successful category and share a stereotypical Asperger's profile but are undiagnosed.) Are they successful despite their neurodiversity or because of it? Are we (me) assuming the employment picture is bleaker for autistic people than it really is because this successful group do no seek diagnosis as their skill set/ability profile is actually an asset despite their social/communication deficits?

Fwiw I now know two GPs and a teacher who strongly suspect autism in their children but as its more along Aspergers lines and they're mostly doing ok in decent state schools they're not going for diagnosis. Two have discussed this at length with their older children. The children do not want the diagnosis. They have had school issues but have been able to be supported enough at home and school to get though.

I always assumed that the employment picture was bleak for autistic people because the figures were based on the much earlier group of people diagnosed with autism who were the ones with severe learning disabilities.

https://www.gov.uk/government/publications/the-buckland-review-of-autism-employment-report-and-recommendations/the-buckland-review-of-autism-employment-report-and-recommendations

This is 2024 - still saying only 3 in 10 autistic adults in employment and that would include the widening of criteria post 2013.

The employment research would also come up against the cohorts-within-cohorts issue because there will be people who experience being thwarted by discriminatory attitudes of employers and colleagues, and there will be people who have no push factors towards employment - they find no intrinsic value in work and they don't have any inner desire for recognition of public acievement. I'm worried that sounds like I'm using fancy big words to call people lazy and that's not what I mean at all. Trying to distinguish between "because I'm an oddball the boss won't give me more hours and my colleagues are unnecessarily cruel," and, "because I'm an oddball I just do not get this whole rat race."

Thanks. With my maths teacher hat on I read this bit with interest:

2.3 Autistica estimates that around 1 in 70 people is autistic, which means there are about 1 million autistic people in the UK. In 2022/2023 (the latest available figures) the number of working age people in the UK who report autism as either a main or secondary long-term health condition was 680,000. Neurodivergent people do not consistently identify as having a long-term health condition, so these numbers are likely to be an underestimate of the true population. Not all working age autistic people will be able to work, but research by the National Autistic Society found that the vast majority want to.
2.4 Despite their wish to work, the latest data from the Labour Force Survey shows that only around 3 in 10 working age autistic people are in employment, compared with around 5 in 10 for all disabled people and 8 in 10 for non-disabled people.

It ties a lot of figures together in an incoherent way.

I did a bit of digging. I couldn't find out what percentage of the population of the UK was of working age but the percentage of the population of England and Wales that is of working age is approximately 62.9% per the 2021 census. If we extrapolate that to the UK with a population of roughly 70 million, that gives a working age population of about 44 million. If Autistica estimate 1 in 70 people are autistic, then that gives a working age autistic population of 629,000. However, they have said 680,000 working age people report having autism, and then say that this is likely to be an underestimate of the true population, which would mean that more than 1 in 70 people are autistic.

So something is wrong with their figures.

And this is why maths teachers never get invited to parties.

As I said upthread; a chat with a psychiatrist or psychologist (can’t remember which) at a party a few years ago described that they were starting to diagnose many in the prison population with autism and adhd.

It’s been known for a long time that sp and language difficulties are high amongst the prison population.

I remember a father of a child who was diagnosed with adhd I taught a long time ago, was known to petty reoffend to get back into prison.

It was postulated to me at the time that he probably had adhd too and needed that high level of structure. I remember that child responded extremely well to the visual structures designed for autistic learners we were using in class. (And the children diagnosed with autism less so!)

Sorry, I'm probably being a bit dim - so is the discrepancy in figures down to self id/ versus diagnosed autistics do you think?

If they wanted to find another adult population where they could diagnose people with autism they would probably find it quite fruitful to look in secondary school maths and science departments - which seems quite counter-intuitive when you consider how bad the school environment is for those with autism.