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

However I think she was showing signs of clear increasing distress in school that just got dismissed by that teacher

I agree @MyOpalCat. I think often the signs are there and the issue is they’re not picked up on.

It’s not just mainstream schools either. I recently attended a talk where a researcher described a situation where an autistic person with an intellectual disability had become extremely distressed. To the staff the behaviour seemed to have come out of nowhere and they were absolutely astounded. When the situation was reviewed (by the researcher, not by the setting) it was obvious there had been very clear signs of escalating distress and the autistic person had been communicating how stressed they were for hours before the incident. This was all completely missed.

Only read first post and none of the comments. Be really interested to know what stock says about this as I love her work.

Anyway, I run an autism and adhd assessment service for women and girls only. Having read the article I would agree that there are different group but I’d say there are three not two. I tend to get swaths of women in their 40s 50s and 60s looking g for diagnosis. Menopause really does make masking almost impossible and the wheels fall off.

This was a very interesting article though. I disagreed with so much but I always love to read around f the subject (Audhd myself and it’s my special interest lol).

One big point of disagreement was where she said teachers intuitively know how to support. I think that is absolute bollocks. And no disrespect to teachers but they have 30 kids in a class and Sally who’s undiagnosed autistic but not causing any disruption will get missed for years and years. At great expense to her mental health and wellbeing.

The missed diagnosis and misdiagnosis of women and girls is a feminist issue that is largely being ignored which I find abhorrent. What I see with my patients is the long term damage caused by this.

anyway rant over as otherwise I will break a blood vessel in my forehead.

@Chinkoffire
Its a language issue i believe. I rephrase things, chunk information down, give time time to process before expecting a response and use visuals, make sure its literal language for him.

One thing a lot of people do is not give him long enough to respond and start giving the answer they think he should be giving so he just agrees with it. You are supposed to count to 5 slowly when waiting for a response. which is actually really long time. Its amazing how often people do that with young kids too whilst they are processing the question and preparing the answer.

Stress can have an impact on him too. It can slow the processing down even more and i think all people experience this to an extent. But actually he tends to say 'i dont know' to everything when really stressed by the situation or stop talking which us indeed less misleading.

I used to think if he was less anxious he'd not have a communication issue as his productive speech is very good, but I think the anxiety actually hid a genuine receptive language issue and ince we had the anxiety treated we coukd see the underlying problems more.

I see what you're saying. The "Sally" girl I know of was missed completely at school until she made "cry for help" suicide at attempt at 16.

Though it was pretty obvious in her disordered eating at home and the parents were in a bit of denial, a teacher with a class of 30 can't spot these academically bright well behaved girls.

Thanks very much @Fearfulsaints, that makes sense. DD has issues with receptive language too and slow processing speed, but his anxiety often takes over in appointments in any case.

Frith is commenting as a disinterested researcher - with a bias toward objective research that allows statistical analysis. She clearly is against use of parental interviews such as those used in ADI and prefers clinician led ADOS. Forgetting that best practice is to use both along with EP, SALT and OT assessment to fully understand needs.

As a parent I have little interest in diagnostic concerns or criteria. I just want to know how best to support my child in relation to their functional needs.

There is very poor understanding of anxiety. It is not stand alone and is not that routinely experienced. 6 year old DS1 was selectively mute at school. This was never communicated to parents. It was only discovered due to a random comment when parents were viewing work after school and DS1 was chatting ten to the dozen that the teacher mentioned that she had never heard him speak before. He had been in the school 2 years by this point and they had never heard him speak. Several years later when undergoing autism assessment I was asked if he was mute.

He was unable to attend school and is now practically housebound as a 25 year old. This is despite secondary age intervention of specialist school, SALT, OT, counselling and youth mental health team. Too late.

I tend to agree with the ASD diagnosis as an umbrella for other diagnosis (dyslexia, auditory processing disorder, sensory processing disorder, severe anxiety etc) but my main focus is on functional ability not diagnosis. And I think it is right that PIP (and EHCP) is based on function rather than diagnosis. A detail that is forgotten in recent claims that support is diagnosis led.

It’s a shame Firth doesn’t elaborate on the sensitivity comment but it’s interesting to see there is still research going on:

https://www.qmul.ac.uk/sbbs/about-us/our-departments/psychology/the-role-of-environmental-sensitivity-in-mental-health/

Why does Environmental Sensitivity (ES) matter when it comes to the treatment of patients?

ES is not a psychological disorder, but high ES is associated with increased risk of developing symptoms of distress and mental health problems, including anxiety, depression, and emotional regulation issues.
In line with evidence that sensitive individuals benefit more from positive experiences, it has been found that people with high ES respond more positively to psychological treatment, including mood induction, depression prevention programmes in adolescents and school-based antibullying programme in children. In other words, being highly sensitive can make people more vulnerable to developing mental health problems, but it means that they may also benefit more from psychological treatment and interventions.

Yes

I am Sally

I am Sally too

47 at diagnosis. 47!!! Latest client is 60! This would never happen to men. Misogyny rooted neglect.

I was 63. ADHD through and through. Diagnosed as depression for many years, the standard way of fobbing off females. I was in a therapy session for depression when the counsellor got angry at my lack of attention on him and a flashbulb went off in my brain.

OH though is very high performing male ASD and not spotted until he got ill at 69 and the mask fell off. I have a feeling it's more to do with outward performance than misogyny as such. The women are better at covering things up and appearing to cope.

Another thing that I have often wondered is that people accept that autism often presents differently in males and females- but could this be because they are actually different things. As in males are more likely to suffer from type B and females are more likely to suffer type A thing but people of both sexes can suffer from either A or B, (and probably other forms two). Edited for clarity

It would be interesting to see if the tendency to accept that is more from people who do not believe there is sex differentiation in the brain. If that is true, it would be natural to assume the difference came from something external.

As a parent I have little interest in diagnostic concerns or criteria. I just want to know how best to support my child in relation to their functional needs.

These things are closely related though. It's possible to have the same symptoms reflecting entirely different causes, and the best support may be quite different.

But it did happen to men.
Asperger’s wasn’t diagnosed until the 90s. I was at school in the 70s and 80s and know a couple of men (in their 50s now) who remain undiagnosed. Knowing much more about autism now thanks to DS, it is fairly obvious they are autistic too.

I’ve been reading around research on “sensitivity,” something that Firth mentioned but didn’t particularly elaborate on and found this very interesting article.

it seems that it’s been explored and researched as far back as Jung in 1913. And is seen as distinctly different to autism, adhd etc, though, as is closely linked to sensory processing, people with specific diagnosed conditions such as autism could easily have both.

“We conclude that SPS is distinct from ASD, SZ and PTSD in that in response to social and emotional stimuli, SPS differentially engages brain regions involved in reward processing, memory, physiological homeostasis, self-other processing, empathy and awareness. We suggest that this serves species survival via deep integration and memory for environmental and social information that may subserve well-being and cooperation”.

https://pmc.ncbi.nlm.nih.gov/articles/PMC5832686/

I mentioned Simon Baron Cohen previously and I noticed on X he posted - Thanks Harry @TimesRadio for the really good discussion about Professor Dame Uta Frith's comments about whether the term 'autism spectrum' is in danger of losing its meaning. We talked about how in 1994 we had a really useful term for one subgroup - Asperger Syndrome - and that when this was removed in 2013, with hindsight it was a mistake. We don't want to turn the clock backwards since Asperger's name is no longer appropriate, given we now know he was a Nazi collaborator, but subgrouping might help with both autism research and the delivery of appropriate autism support services. The interview starts at 01.21:50

Talking of overlaps I was reading about the original autistic subjects and they were described as ‘clumsy’.

If you have a look at the symptoms of dyspraxia, there are definite parallels with autism including difficulty regulating emotions and coping in social situations.

Are some diagnoses of autism actually dyspraxia? Are they actually two different things or the same root? What’s the deciding factor?

If someone presents without certain key symptoms is that explained by them ‘masking’?

Apparently dyspraxia is still a clear diagnosis; pre teaching I did once support a child in mainstream who was very dyspraxic (diagnosed as such) but certainly wouldn’t have been seen as autistic then. Perhaps now under the new dsm? His communication wasn’t affected and was very witty. Possibly inattentive adhd but coordination was a challenge for him. But I’m in SEND and probably all our children have a level of dyspraxia.

Sensory processing disorder is another one that seems to have huge overlaps with both. But I think as a clear diagnosis that stopped a long time ago. A relative in another country was diagnosed with this but she’s also clearly autistic in a very classic, Asperger’s sense, not diagnosed . Her physical difficulties were clear from a young age though and they needed to be identified to access OT therapies through insurance. As a result she had much, much more input than a child would here.

At the end of the day current diagnosis is chasing the right settings for a child.

I’ve just seen Naomi shared a stat that 43% of children in Scotland have an identified SEN. She questions if it’s the system that’s wrong, expecting too much of young children too early and then not allowing them to develop at their own rates enough in the early years.

I know a couple of people who have dyspraxia (DCD) and they’re not autistic. Very socially able, no repetitive behaviours, but will manage to find the smallest imperfection on a path and fall over it. My autistic son also has dyspraxia though, and I think they do often co-exist.

I know when my son got his DCD diagnosis (pre his autism diagnosis) I read a well-regarded book on dyspraxia that listed many social effects too. I subsequently found out the author had been diagnosed with autism later on (ie after she had written the book) so I did wonder how many of the examples listed in her book were ‘true’ dyspraxia iyswim. I do think the fact that these conditions overlap to a degree caused confusion, or at least it did two or three decades ago. Not sure of the current situation.

Interesting to see the conversation moving to dyspraxia - I think it is very much the Cinderella of conditions as there never seems to be much research into it beyond the OT side. I know Professor Amanda Kirby did quite a lot of work looking at how dyspraxic DC process - which is often quite different to ND children. DD1 is dyspraxic she displays most of the classic "clumsy child" symptoms (which aren't helped by her being hypermobile...) but what I find most fascinating is how her brain works - so she doesn't always get the obvious, her thinking in maths is basically weird and she doesn't take anything in if she has to read in silence (so needed own room for exams). She also cannot recount to you what she did in a physical task - a nightmare for GCSE science as she could recount an experiment she had watched her teacher do but couldn't if she had done it herself. I'm not sure that even now she could tell me how she makes a cup of tea or a bowl of pasta.

She went to specialist music school for sixth form and the SENCO there said that a surprising number of the pupils there were dyspraxic.

She also has a number of sensory issues - as a child she had to be taken out of the building by a TA before the fire alarm tests each week as it hurt her ears so much and she is fussy about food - needs to be separate and not mixed up.

She questions if it’s the system that’s wrong, expecting too much of young children too early and then not allowing them to develop at their own rates enough in the early years.

This, this and this again. And not only in early years.

Oh I’d 💯 agree.

Around the same time as the change in DSM for autism in 2013, the tories completely changed the curriculum.

In was very surprised to see a lot that used to be in ks2 taken down to ks1. The arts curriculums shrank and as schools had to write the content (previously there was gov led QCA content to follow if you wished, which most did) they saw it as “lesser.” I also remember really good speaking and listening areas of the literacy curriculum disappear in favour of more grammar. Some of which even colleagues who did English at uni struggled with.

Even a decade before this, older colleagues were saying there wasn’t enough play going on in ks1 and we were looking at ways to keep it going whilst meeting curriculum requirements. This was a relatively deprived area. Children were staring school barely able to talk. Sure start was very much needed and I knew did a lot.

That's really interesting that they got a dyspraxia diagnosis despite being very socially able if one of the listed symptoms is issues in social situations. Also very interesting about the author not knowing she had autism therefore possible conflating her symptoms of autism with dyspraxia.

This area seems very confusing. Reading a list of symptoms with physical issues for dyspraxia then emotional problems also being in there seems quite random!