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

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’?

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

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/

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.

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.

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.

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

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.

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

I am Sally too

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.

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.

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.

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.

@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.

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.

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.

Is it the stress of the situation that is making him unable to grasp what they are asking do you know @Fearfulsaints? He understands when you ask the question in the same place. Just wondering if you are phrasing things in a different way or is it that he so stressed by the different person questioning him that his brain can’t compute properly iyswim?

I have an autistic DS who doesn’t have an intellectual disability and mostly doesn’t have speech issues, but his reaction in this sort of situation is often to go mute. The only advantage to that is that he doesn’t inadvertently mislead medical staff as your DS may have done if you weren’t there. (I never thought there was an advantage to becoming situationally mute before 🤔)

I’m NT myself I think, but have experience of something similar when public speaking to large crowds in the past (work-related). Giving the talks themselves was fine because I could prepare, but if someone asked a question I could be so stressed I wouldn’t even hear it properly and my brain stopped working really. (I don’t do these talks anymore!)

It’s an interesting discussion and definitely does need to be discussed.

i do think there is a place to differentiate between severe non - verbal autism who will need lifelong assistance and those that just need a bit of understanding.

This is particularly in terms of benefits. I’ve taught plenty of academically able students with Autisms who thrive with a bit of understanding/ maybe extra time in exams etc but will probably go onto to have successful careers and lives. The diagnosis is great for this but I wouldn’t really consider it a disability especially in terms of collected PIP money. They are many who capable of looking after themselves including financially. Without the diagnosis there is a risk of burnout at school and all the severe anxiety that goes with that.
This is a world away from those with severe autism who will never live without assistance. Lumping them with the same diagnosis has never made sense so I suppose I agree with Uta Frith.

Enter stage left: the gatekeeping discourse.

With no bio markers you do need to gatekeep.

@DrTemporary
I see many children with problems, and they are as variable as the children that have them. I definitely don't buy that they are all one condition - or, often, a condition at all. Their issues seem often to be a product of circumstances, trauma, personality, struggles with puberty, modern school expectations - I don't know.

Dr Sami Timimi thinks as you do if I remember correctly.
(Sami Timimi is a British psychiatrist, psychotherapist, and author. He works as a consultant in child and adolescent psychiatry. He writes from a critical psychiatry perspective on topics relating to mental health and childhood and has published extensively in medical, educational, and sociological journals.)
wikipedia

My Dad got like that in later years - so Mum had to speak for him. I don't know if he forgot or didn't want a fuss made or dreaded yet more pills and then interactions with other meds or painful treatements - he was likely suffering from congantive decline. Mum would have to push then they'd see clearly see the issue.

MIL said FIl was also getting like this - then he got a hearing aid - and now I wonder if he was masking hearing issues and not realising what was actually being said.

I do remember thinking as a young child I had to be different person as it were walking through school gates. As I'm quiet and shy I got steered away from front facing roles for careers but done them as temp or summer jobs and did them well as I knew the roleand could perform it.

I usually see masking applied to situation like DD1 had in primary - where school says everything is fine but home it's clear it's not.

DD1 was sat next to a child who's behavior set DD1 sensitivies off - both kids got on and asked to be moved told no- DD1 explained why it was upsetting to teacher got told to develop resiliency and to us who did have a word and got told same and suggestion it was bullying to other child to even ask.

Her ablity to cope decline day by day - she started acting up at home then before school asked teacher again for a move - got told it was a parenting issue as only a home problem.

It escalated over weeks to point struggling to get her into school just before I saw HT she had melt down in school couldn't cope - they could do nothing with her but get her to a quiet room HT was shocked as she'd been perfectly behaved child till then with few minor quirks with texture and sound some teahcers noticed. (Subsquently at Uni disagonsed ADHD, dyslexia and dsypraixa after several schools insisting she was NT)

That often described as masking on here as she cope in school till she didn't and home life was where the issues were highly visible - all the coping pool of ablity having been used up during the school day.

However I think she was showing signs of clear increasing distress in school that just got dismissed by that teacher - who refused to do a simple bloody seating change. Seating change and while rest of year she was very anxious doing lots of handwashing and rituals everyone other than that teacher saw and expressed concern to us about - immediate problems went away with seating change and she again went to school fine and came home tired but not upset. DS same age had similar issue lost it immediatley - he'd learnt stafff wouldn't listen earlier - and the seating change was immediate.

That not quite how other posters on this thread are using it - but it's how I often see it used on MN to explain why the school thinks eveything is fine but at home there's a clearly distressed child.

He was seen by a multidisciplinary team around back pain (rheumatology, paediatrics and physio).

They said things like 'Is your back pain relentless'

He'd say 'no, its not relentless' then mimic the physio's expression.

He just would guess whether it was yes or no answer and based it a lot of whether the physio was smiling and nodding or looking concerned. So if she looked concerned he'd guess it was bad to say yes to that thing and would say no. If the physio smiled he said yes. They werent based on his actual symptoms or understanding. He used a lot of just repeating what they said with thier tone.

I then rephrased the question and asked him to look at me and it turns out the pain was all the time. He had no idea what relentless meant.

They said 'does it hurt when I touch your feet'

He'd say 'yes it hurts when you touch my feet '

He meant his feet hurt when they touched him as he has sensitive feet. They actually meant did he feel it in his back. (I think they asked it in a stupid way tbf)

I had to step in and ask them to explain a bit more but they hadn't picked up on the misunderstanding.

So on a surface level he is saying yes and no at the right times. He was delightful with his pleases, thank yous. He wasnt making vocal stimms, or answering with totally irrelevant information (like just telling them how many vertbrae a giraffe had) which is actually what he wanted to do.

But he fundamentally failed to communicate his back hurt all the time and his feet werent involved.