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

One of my DD's had a similar experience at the Michael Rutter but they missed her ADHD and only diagnosed dyspraxia and binge eating disorder at that time. ADHD came later. So properly set up clinical units do indeed refuse ASD diagnoses.

This has been a really interesting read.
Someone touched on this earlier; i have been pondering whether research into the culture of the country of diagnosis should be carried out.
For example; in Ireland people come at you sideways a lot of the time, unlike say Sweden where they are more blunt.
Does this make autistic Irish people stand out more or are Sweden's social clues really really subtle and what seems like total frankness in all situations is in fact not the case and it is equally easy to diagnose?

Sorry, I could have been clearer. Does anybody looking for a diagnosis ever come away without one? Your child being given an ADHD diagnosis instead doesn't dispel my more general concerns - not a criticism aimed at you but I do wonder if we are (generally) parhologising what might be personality differences too readily. Particularly as there is no neurotypical baseline to compare.

My son joined an activity where all the kids (teens) were just lovely. Having got used to having to work out whether someone from his peer group was being sarcastic or not, he then had to relearn to take these kids absolutely at face value. Eg. If they paid him a compliment it was always a genuine complement, he didn't have to think about whether they meant the opposite or not. In turn, he probably came across to them as bit guarded initially.

intense detailed multi-practitioner assessment for ASD - leading to an ADHD diagnosis, but not ASD.

DD1 had same.

DD1 went through Uni and NHS system and didn't come out with out an ASD disagonsis though they said there was something and said to look at other disagostic routes . She then had to go through seperate ADHD process with NHS with a different team and then via univeristy disablity team the dyslexia and dyspraxia testing with education psychologists completely seperate process.

We'd know there was something since she was a velcro baby and raised concerns and had concerns raised with us her entire schooling. We been on lists promised we'd get on others and nothing. Then it's our fault for putting in support that masks the problems or not paying for private disgosiss when it was beyond our means.

A freind of DD1 family paid 6 K for diagosis after friend hit mental health crisis - a friend of DD2 also had mental health criss think parents are still scared by and also went private - no-one was surprised by outcomes yet there a narrative all private disagonsis are just paid for and not worth getting.

I'm intertesed by the sleep issue. I know my problems cause by dyspraxia and dsyleixa are worse with lack of sleep. As soon as DD1 and Ds sleep issue were aired in ASD meetings that pointed to ADHD - yet I've done everything over their entrie lives to improve their sleep. I still get blamed as velcro babaies so co-slept - sleep problems in exists previous genertaion when being left to cry it out as was parenting norm then.

I image so. I watched TV show few years ago looking at kids with problems and going through diagnostic process one was refused turned out his sleep was being disrupted by family dog and he was very tried. I can't remember what the TV show it was called but it was on ITV.

In real life most people spend years knowing often from young ages there is something different to other kids. Getting near diagonstic pathways takes years and a lot of peristance IME.

In the ASD process turned a lot of what is normal in our family and adapted to isn't normal in the general population apparently. Also people outside family do comment and point out the kids quirks - and raise concerns.

I was disgonsed at 21 with dsylexia and dsypraixia at Uni- I'd spent life being told it was lazyness or stupidity ie my fault. My Mum had raised it to teachers without me there and been laughed at - yet when she saw them later all said it made sense and had wondered at the time - which made her feel awful. I ha dto push and did so as sibling who failed GCSE was having it suggested via a few routes to them.

In RL only people I know who gone private do so becuase they are getting desperate have often jumped many hoops already and spent years waiting and that usually been mental health crisis of some sort.

I can't say there are no clinics that are giving out disagosise for cash - as I haven't audited them all - but IME there are huge barriers and a huge amount of pushback and discouragement to go down diagnostic routes that may be different in higher social economic groups with more resources I wouldn't know.

I want to say thanks to the contributors to this thread. I've found this a very interesting and useful discussion.

Its not an area I know about at all but it has increasingly come up with friends, family and colleagues in the last few years. When I've tried to find out more I've found it so hard to find information I trust - I've recognised similar identitarian/authoritarian aspects to the gender stuff which has made me suspicious of the whole area, while also not helping my understanding of it at all.

I made many of my friends doing the sort of hard STEM stuff where autistic traits are common, not that we would have called it that then. A fair few have recently got a diagnosis in their 40/50's, despite not having any obvious problems associated with it. They are dear friends, but I have found myself wondering if they have become motivated by gaining the identity. I have also wondered if there is an impact on other groups which much more obviously need support than my friends.

@GCburneraccount "They are dear friends, but I have found myself wondering if they have become motivated by gaining the identity."

I don't know if I want the identity to be honest. I got given it without being asked, ever since I was a (weird) child. It's a family joke that I'm the odd kid, and I was well known in my peer group as "the professor" which was by far the kindest nick name I got along the way. I'm curious more than anything else, but not curious enough (it seems) to go through all the kefuffle and possibly expense of going through a process of diagnosis.

I went through a lot of stages with relation to my quite obvious neurodiversity in my life. For the longest time just tried to fit in, with decent success to be fair. Then in my early 30s (20 years ago now, so not a recent thing) I started to put the pieces together and wonder/realise how autistic I am, notwithstanding I can manage quite well in the world and don't have any huge deficits.

So I definitely would be one of those people that (especially people who have known me only in later life) seem completely fine and quite well adjusted. I think it's fair to question why I would be in the same category as someone who needed serious or even reasonable adjustments just to have a job, or who would require supported living for their whole lifetime.

I said recently to a friend who is early 30s and pursuing a diagnosis "I'm probably not really any better at 'it' than you, I've just had more time to practise".

The ed psych who recommended that DS (6) pursue a diagnosis said to us that it was better to known to be autistic than to be thought a weirdo. I was quite shocked by that I remember. I didn’t want either for him to tell the truth.

It seems to me that over the past few years there has been a move away from bullying-prevention campaigns and towards diagnosing those who are bullied with ND.

They are dear friends, but I have found myself wondering if they have become motivated by gaining the identity.

I can only speak for myself and to an extent for my husband, but it's nothing to do with gaining an identity and everything to do with understanding things in our past that we have messed up, giving ourselves forgiveness for those, and about understanding what it is that makes us continue to behave in ways that make our lives and other people's more difficult in the present and why it is so hard to stop doing them.

I would fit the profile for this and I would say its due to trauma and attachment difficulties (insecure and ambivalent)

This may be pretty close to what the pp meant by gaining an identity. Hence the question of what is the neurotypical baseline.

Suspect getting an explanation and gaining an identity are two different things.

One is for yourself, the other is for other people.

Isnt that generally the human condition though?

I say that as someone who has sought these answers over the years through counselling and will probably need to again.

Do we as a modern species, for all our navel gazing, really understand ourselves that well?

I don't really understand your question. Again I can only answer for myself but an ADHD diagnosis at 62 for me, shining a light a light on my own behaviour and causes and culpability for that behaviour that was like standing in the dark in the middle of a football pitch and somebody turning on the floodlights.

And an understanding of how ASD affects my husband is on many days the only way I can manage to carry on giving him the support he needs for his health rather than walking away or simply checking out because it's all too difficult.

this with bells on

Yea, a slip of typing from me, sorry! Highly is much better. I use the term hyper or hypo a lot in terms of sensory processing at work. Am personally hyper mobile but hypo thyroid. Semantics matter, definitely!

Posting on the hop doesn’t help either…

(Linking to the reversal tweet which I forgot to do. )
https://x.com/anisha_moonka/status/2031278395783512154?s=46&t=A2fpFNgDRyXF2d6ye97wEA

Oh no, I wasn’t trying to get at you, sorry. Like pp, I thought that Uta Frith might have got (slighly) less criticism if she hadn’t used the term hypersensitive.

I've not been diagnosed as autistic but I would definitely fit the current day criteria for it. As a child I never had friends, I was very shy, I struggled to communicate feelings, I had vocal ticks, I had selective mutism, I was highly sensitive, I was super fussy with foods and sensitive to noise and touch. My schooling was disrupted as a result, and I came close to being expelled and failed to achieve any O levels. Over the years I've lost count of the number of times people have told me to stop being over-sensitive.

I see people like me in their middle age being diagnosed and I wonder what difference does it actually make? Now you can attribute your characteristics to a condition why does that make life any easier?

I have to say I don't really see much of a connection between the more severe forms of autism and those described above as being without intellectual impairment. I also don't understand why it matters so much to people that these groups should remain connected and in fact I think the connection possibly does undermine those with more severe forms of autism. I have to say though I do think that diagnosing people as "hyper-sensitive" definitely would have negative connotations but it's interesting that once you could also have said that about a diagnosis of autism but you really couldn't argue that is currently the case.

I am not sure those things are quite so discrete. Identity is about how we see ourselves (or sometimes want to see ourselves), projected outward.

But as far as getting an explanation goes, I'm not convinced that is what a diagnosis exists for, but that does seem to be a common refrain. We all have explanations for why we are the way we are, and one of the major efforts in life is to understand that and come to terms with it. The search for diagnosis now seems to be the way many people, and especially young people, try and answer these kinds of internal questions. In a way it seems to have replaced the idea that we all need to be psychoanalysed.

But it's an approach that is going to be very vulnerable to issues around diagnostic criteria.

I think the issue with "hyper-sensitive" is that in everyday speech it means something different. Closer to being easy to offend.

So you could change the medical term, or just habituate people to the fact that it means something else in that context.

I very much agree with this.

My concern around the widening of the diagnostic criteria to allow more people to be included, is that it appears to have been done without any evidence to show that diagnosis improves measurable outcomes for those people: does it reduce rates of mental illness, does it increase educational attainment, employment rates, etc? There are also potential downsides to a lifelong diagnosis of a neurodevelopmental disorder which might also impact on outcomes. We wouldn't license a new drug without weighing up the benefits and side effects, I don't understand why this isn't done with diagnostic criteria.

I think a lot of people diagnosed as older adults look back and think that their lives would have been better with a diagnosis, but nobody can know this for certain. It's entirely possible that a diagnosis with no support, or the wrong kind of support is worse than no diagnosis.

Attempting to speak for my friends, I'd describe them as 'odd' kids, who excelled academically and found a path that made use of their strengths and allowed them to build successful and meaningful lives. They also had the luck to grow up in environments where they could work out ways to manage their oddness and did not get derailed by trauma. Experience has made them ever better at managing their quirks.

I guess I'm not sure what practical use a diagnosis is for them, given they have already worked out how to manage things that it barely impacts their lives. And being honest, I'm a bit worried that since diagnosis one of them is getting a bit fixated on it, to the extent it may be causing problems they didn't have before. As a concerned friend its hard not to wish the trend for seeking diagnosis hadn't come her way.

Perhaps it is just the very human urge to understand yourself. Perhaps also that now if you have certain traits people are more likely to suggest seeking a diagnosis, and that having one no longer carries the same stigma.