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

I find the argument about being "severely impacted" a little frustrating.

Sure, you can have what would be classed by some as a "mild" condition and struggle a lot. Are you struggling more or less than a person with a severe diagnosis? Maybe? It's hard to quantify. How do I compare the struggle of Jane who is full of anxiety at school, with Trish who is at home smearing menstrual blood on the wall and is non-verbal?

But does it even matter? Someone who can never walk or even try to walk might be might objectively be more impaired than someone who can walk a little. But the latter may spend more time with certain struggles because he can walk a little with serious effort, because he can function more in a standard environment, or because he has fewer special supports.

I don't think those terms are meant to be understood as reflecting how much individuals feel they struggle. That's not the same as impact. It's not the same as the degree to which normal function is affected.

I think there is an element in this of a kind of weird intersection with oppression hierarchies.

Most of those for whom adjustments have worked or not worked have been female, but this is reflective of the demographics of the teams. Females outweigh males across all of the services

I'm really enjoying this nuanced and measured discussion, thank you. I work in education and can say without hesitation that the current diagnostic approach is completely unhelpful in terms of identifying what support a child might need or planning provision for cohorts at the local authority level.

A huge amount of resource is being taken up by young people who are highly anxious and unable to attend school consistently. The answer to this is usually to stay home; but too often this leads to a tighter and tighter inwards spiral of things they can't do to the point they become trapped in their bedrooms. It's truly awful for them and their families. But their needs are completely different to those young people attending a special school who are often non-verbal and are likely to need lifelong support with the tasks of everyday living. The current system fails both groups by giving them the same label.

I'm really glad to hear Uta Frith talking about this. It is not bigotry or dismissal of 'lived experience' to question whether the current socially constructed labels we are using are helpful.

In my teaching career I have seen suicide attempts from pupils who would then be diagnosed with autism, which would be considered the 'mild' kind.

'Mild' in medicine is normally reserved for things which do not have major impacts. A mild cough doesn't make you vomit. A mild headache is a minor inconvenience.

Which is why 'mild autism' isn't helpful.

I also agree with @Brainworm on the ear defenders issue. We should always consider whether we need to look at adaptation (reasonable adjustments) or habilitation. We could just provide wheelchairs and ramps for children born with, say spina bifida, and not offer them physio and standing frames. Physio is often tiring, time consuming, painful and unpleasant but can make a huge difference to functioning in the future. We need to know whether providing ear defenders is a neutral adaptation with no long term impact or whether it might support long term functioning or actually make things worse. There are currently questions around the impact of noise cancelling headphones on auditory processing https://www.bbc.co.uk/news/articles/cgkjvr7x5x6o so it's not a huge leap to suggest they might have some downsides. With the caveat that downsides or no, some people will absolutely need them to participate.

Frankly, her comments about sensory issues and ear defenders were nothing short of offensive, both in the TES interview and the Naomi Fisher podcast. I have 2 autistic kids, one who uses ear defenders more than the other. The number of theatre / holiday discos / cinema trips / train journeys that child missed out on when young because they couldn't cope with the noise - until we tried a pair of ear defenders and now pretty much everywhere is accessible if we carry them with us. My kid didn't have the wherewithal to think "if I wear these then someone is acknowledging my need", they just needed the world not to sound so bloody painful.

I hadn't really heard about this 'CBT doesn't work for autistic people' thing but it makes sense that I've heard of children's mental health services refusing to work with autistic children because their anxiety is a 'feature' of their autism and therefore not the sort of anxiety that they can deal with.

The interesting thing about ear defenders is people may have rightly identified it would be better to not need them at all, and there could be side effects, but they dont seem to have identified the how to learn to handle the noise with different strategies.

So what happens is the child is either in the classroom or cafe with ear defenders or not in the room as they self exclude (perhaps through behaviour) . They arent being helped in a different way. And not being in the classroom or cafe at all also has consequences.

My son used ear defenders quite a bit when small but doesnt now. I think Salt for comms and OT on sensory regulation and integration achieved it - but it wasnt a target. I dont think it was ever noise that was an issue itself, it was noise, plus change, plus touch, plus sight, plus hunger, plus understanding all together were too much, and noise was the one that had a handy filter which still let you function. You cant generally do school blindfold and naked even if it did reduce sensory inputs.

I love the analogy with spina bifida. Thank you.

I wonder if some argue that it’s ableist to aim for patients to be able to stand / walk. I expect so.

I hadn't really heard about this 'CBT doesn't work for autistic people' thing but it makes sense that I've heard of children's mental health services refusing to work with autistic children because their anxiety is a 'feature' of their autism and therefore not the sort of anxiety that they can deal with.

We had this. Likely 'very autistic' whatever that means, still on waiting list so who knows. We were also told very bright and any sort of therapy would lead to overthinking.

I disagree though I think the right support could have been amazing and the wrong sort very detrimental and sometimes doing nothing is better than risking the wrong sort.

On the lack of reciprocity/socially inappropriate speech, this is exactly what was seen in my DD's autism assessment, and (I think, part of) exactly why she started to really struggle at secondary school. To generalise, at primary school, it's (for the typical, bright, teen diagnosed autistic girl) pretty easy just to mimic everyone else and fit in.

At secondary age, you can give it a go, but teen social mores are highly complex and people start to notice that you're not getting it right - and you start to notice that too, and start to feel anxious (and, for DD and lots of others, increasingly shit about herself, until her problems erupted into a crisis. I keep wondering if @noblegiraffe is one of her teachers, but sadly I know the story is not uncommon.)

At DD's assessment, they found (e.g)
that she was repeatedly missing obvious social cues in a conversation structured to elicit normal reciprocal responses, failed to make "correct" eye contact and struggled with unfamiliar non-literal language. No wonder she struggled socially.

Her struggles mostly manifest now as extreme anxiety. So, for me, that's the connection between the classic Asperger's and the anxious/sensitive girl. (The other part of the sensitivity for my DD is about heightened visual perception. I have the impression that the tiles in the corridors at school are akin to flashing disco lights for me.)

I understand from the Gina Rippon book that a key difference with the Asperger's type males is that, on average, males tend to be less socially motivated and so their behaviour is more obviously odd - they are not trying to fit in. Again, explains the high levels of anxiety in Asperger type teenage girls: they are constantly monitoring, reviewing, adjusting to try to behave like their peers and, in DDs case, very often failing.

It was a revelatory moment for me reading that book and comparing DD's school experience with her Dad's. DH would almost certainly have fit the Asperger's diagnosis (his schooldays predated it). He had no friends at school and some very odd behaviours. He was also very academically successful so noone worried - he was just shy.

Writing my post just now, it was very helpful to be able to use Asperger's as a shorthand. Not ideal to have a diagnosis named after a Nazi, but I do agree with others that a different name for different forms of autism would be helpful.

The q of whether a diagnosis is helpful is also very interesting and difficult. I had thought that a diagnosis in the modern neuro-affirming way might help my DD: i
"You have a differently wired brain, which means you are minoritised, and being minoritised is difficult but there is nothing wrong about how you are" - the social model of disability, in essence, I think*.

It didn't help her, as she just wants to be normal. And I don't think a diagnosis would have helped her Dad. It has really, really helped me though, as so much of my approach to communicating with her is now embedded in what I've learned about Aspie girls and our relationship has improved immeasurably since her diagnosis.

*I've never fully understood the social model of disability, so I may have this wrong. I do think the idea that people are disabled only by society rather any difficulties being intrinsic to a medical condition is bonkers. But I have probably misunderstood. It's on my list of things to understand better one day.

Also, DD is about to start CBT for her anxiety with CAMHS. (She's been about to start various therapies with them for years, so this may not happen, but interesting/shit nonetheless how different CAMHSs have such different views on autism, anxiety and CBT.)

On the point of the social model of disability, some understand it in terms of - if the print is big enough for a myopic person to see, they are not disabled by their myopia. This makes far more sense with disabilities that can easily be addressed by environmental adaptions.

I think the biopsychosocial model makes far more sense. It takes into account individual difference and social factors, highlighting the interaction between them impact of the level of disability experienced.

I think tensions primarily arise in relation to the social model and perceptions of ableism when adjustments aren’t deemed to be ‘reasonable’. When looking at the individual level, it is usually seems unreasonable to not put needed adjustments in place to enable access/ participation / inclusion. When you look at this with a wider lens - such as cost, competing interests, prevalence of need, perspectives about what is within reason can shift.

I can see why disability advocates are enraged/ devastated by failure to provide needed adjustments. I can also see why they sometimes aren’t provided.

Fascinating discussion. This is an interesting website - written by a female senior civil servant who had a late diagnosis of autism - https://helenjeffries.wordpress.com/chronological-list-of-blogs/

I'm also late diagnosed and being able to read the experiences of others meant that all of a sudden a lot of things from childhood and young adulthood suddnely started to fall into place. Maybe I'd not have had a breakdown and been suicidal if I'd known then what I do now.

However I do think that it was easier being a child in the 1970s - there were some pretty entrenched rules on social behaviour and manners, you got away from people when you got home for the evening and school was a much easier and less distracting place. PPs have talked about rows of desks - minimised background chatter, there were no whiteboards with overstimulating displays, teachers tended to teach at the speed they could write on the blackboard (or you could write down in your notebooks if they preferred to talk at you) rather than flipping through a powerpoint presentation. Playgrounds were bigger so they were a little less noisy and you could usually find a quiet corner to read a book if you'd had enough. There wasn't a national curriculum so school work was more varied - eg you might spend half a term on a project based topic and then move on to something that was taught and learnt. Yes I was bullied but it was generally pretty obvious rather than hidden behind disappearing snapchat posts etc. I don't think I would have done as well academically if I went to school now.

When are you talking about though? My sister was diagnosed with Aspergers and that is her diagnosis. This was 25 years ago. She would be described as you have described.

I wasnt meaning to suggest that no girls were diagnosed with aspergers. It just was weighted to more boys getting a diagnosis so the image of it isnt of girls 'able to communicate perfectly well verbally and non verbally but are highly anxious in social situations and could be described as hypersensitive' (how Uta Firth describes them in the article.) Wheras I felt aspergers diagnosis in the dsm before 2013 included much more around communication than being socially anxious. It had actual difference in how people communicated around tone, speech patterns, understanding and reciprocity. So I was a bit confused why this description was felt to fit any better than the current autism criteria.

But a PP has said her experience is the social anxiety comes from the deficits in comms which makes more sense.

Kids who don't have autism at all also attempt suicide.

My young adult niece, who is the non-verbal, menstrual blood smearing kind of autism, is very unlikely to try and kill herself. She doesn't have the capacity and in many ways is fairly happy most of the time.

She also is non-verbal other than scripting, would, if the doors weren't locked, escape the house and try to drive a trike down the freeway, and will never have a job or be able to live alone or even be left alone for short periods.

So what are we comparing, here, perhaps what she has is a "milder" version, since she isn't able to conceptualise that she is different.

@Missproportionate I think it's spot on. Which is not to say that the difficulties of women in particular who are functional with low support needs should be ignored. Rather that lumping all needs together under the one diagnostic heading has become unreasonable and disadvantageous to those with classical autism and the associated impairments that massively impact every area of their life.
The pendulum has swung too far. Shades of Baroness Mary Warnock regretting aspects of the SEN reforms she led on for the original Code of Practice in 2001.

I wouldn’t ever say that your niece’s autism was mild. It sounds extremely difficult.

I remember a friend and colleague saying that in many ways she was glad her autistic son (who would be seen as ‘severe’) wasn’t aware that he was as ‘different’ as he was as she knew the children we taught who had more social communication skills were more aware that they were different to their mainstream peers and so struggled emotionally.

Well it's much better than it was when she was younger and in many ways she has a fairly happy life now. It's meant her mum has a job where she works out of the home, and eventually they will have to think hard about what will happen when they are gone.

But in terms of the severity of the brain differernces, or differernces from the "norm" it seems to me that she is clearly farther from that than someone like Elon Musk, or Anthony Hopkins, or even my friend's daughter who has struggled but will likely be able to have a job and a family and so on, if she wants them.

@OpheliaWitchoftheWoods On 2nd reading, you interest me strangely. "Inability to learn by immersion" - you mean 2nd & further languages?
Is this inability to learn by immersion a prequisite of diagnosis or more of a general trend?

There does seem to be a diagnostic muddle in both directions - people who'd experienced childhood trauma and had ASD could wind up with Borderline Personality Disorder diagnoses if initial assessment wasn't careful enough.

Your first paragraph really describes a lot of what’s going on ‘behind the scenes’ in a later diagnosed autistic person and points to the underlying sp and lang need, as well as the associated input OTs can have.

A useful way to consider the spectrum was suggested a while ago, whereby it’s more of a colour wheel. With this approach it’s easier to see how one or two areas of difficulty could be given targeted interventions and support.

the problem is that not been happening. If early intervention was more rigorous and routine, looking at social language and communication, without requiring a full diagnosis, it’s quite possible that many children wouldn’t get the eventual autism diagnosis.

It already evidenced that where this has happened ( with a diagnosis, but really good targeted multi disciplinary support on those areas of need) that the individuals as adults, if re tested, wouldn’t get an autism diagnosis. Early intervention is really key.

And it comes back to the issue that all the things you describe, if not supported or recognised or accommodated create extreme anxiety and depression. Which any child may also have, due to other factors, that aren’t related to anything like a diagnosis such as autism. In some children this is self destructive (self harm, anorexia, trans identity, drug abuse) in others it’s externalised (‘disruptive’ behaviour, violence)

I am concerned about the changes to ehcps IF the associated changes and decent support for early years provision / interventions doesn’t happen. It also takes away parental legal protections that can be embedded in the ehcp. At the same time, I would hope, what what they say their plan is, that the system is embedding a deeper duty of care in schools who’ve definitely got into the habit of passing the buck (not bothering with certain children so parents end up having to home school and fight the system) in order to maintain shiny results.