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 definitely think this can be true in a lot of cases.

When I had my autism assessment, I took my mum as my history informant who had said she has been trying to get me diagnosed since I was a child, but had been told alsorts of outdated tropes like it's a boys condition etc.

Our clinician quite helpfully put it into perspective that had I received a diagnosis in the 90s or 00s, I wouldn't necessarily have had any help because there was just such little understanding of the differing presentations of autism and being autistic would just have become another pseudonym for being naughty. It wouldn't have been "She's having a hard time because she's struggling with XYZ and needs it explaining a different way in a different setting or on a one to one basis" it would just have been "she's struggling because she's autistic" and that would have been that.

I can say post-diagnosis I have had a wealth of support from my local NHS autism service that has made a lot of difference to my life, but that is a postcode lottery in itself. Without that support a diagnosis wouldn't have made any difference to my life whatsoever.

A lot of adult mental health services also state this.

In lay terms normal anxiety might be something hypothetical yet ruminated on. Something like how am I going to afford this massive bill, and it paralyses you to the point of not taking action, however with the right support you could take action and the anxiety could be abated.

With autism a lot of the sources of anxiety aren't hypothetical, they're very real sources. Things like the bus is going to be really crowded and noisy today, I don't think I can cope because I know that will be psychologically painful, or, my schedule at work keeps changing and it is affecting my systems and routines and I can't cope, or, the building management have just changed all the lights to fluorescent white and it is hurting my eyes, giving me a migraine, and I know I'm going to be sick on my lunchbreak because of it.

I am not saying CBT isn't helpful at all for autistic people. I have definitely found it helpful in some capacities, but there are a lot of CBT methods that don't align with the autistic experience like scheduling worry time, visualisations, priority planning and so on. These things can be hard when your day to day worries are about how much excess stimulus you're guaranteed to encounter despite your best efforts, and how easily misinterpreted you'll be if you've got communication issues and trouble identifying your emotions.

I think CBT is something that should be tried, but providers have got to be willing to offer it for it to be tried.

I think an Aspergers/ASD diagnosis can be extremely helpful to the partner of the people who get one. Some behaviours are much easier to manage if you know there was no intention to cause their partner difficulties or upset and/or no understanding of how that happened.

I don't believe identity and understanding are the same thing at all, though an increase in understanding might later lead to changes in identity.

I am very uncomfortable about people making judgements about the helpfulness of other people with ASD getting a late diagnosis on the basis that those people look like ASD barely impacts their lives.

I hear you. It can be a bit "well they didn't seem depressed".

An awful lot of people are hiding heavy burdens they carry.

I get what you are trying to conceptualise here, but I think you are misrepresenting the mental health condition of anxiety in relation to non-autistic people.
In the first place, you describe it as 'normal anxiety'. No form of therapy is needed for normal anxiety. It is something perfectly functional; it is not the target of CBT. Anxiety only becomes the proper object of therapy when it is a diagnosable mental health condition.

In the second place, you make a contrast between 'hypothetical' sources of anxiety for non-autistic people and 'real' sources of anxiety for autistic people.

Surely you can see that this isn't fair or realistic? Why should the particular sources of anxiety around autism that you mention be regarded as more real than, say, the sources of anxiety around managing other conditions, such as chronic pain or IBS or cancer? And why should they be regarded as more real than, say, managing a job, parenting young children, caring for an elderly parent?

We all have 'real' sources of anxiety, whether we are autistic or non-autistic, and for all of us (autistic or non-autistic) there is the same distinction to be made between psychologically healthy and psychologically unhealthy ways of dealing with those sources of anxiety.

I think you have accidentally 'privileged' the anxiety that is associated with autism, with the effect of minimising the struggles of non-autistic people dealing with anxiety as a mental health condition.

A lot of the discourse around autism has this same effect. This may be because people who seek diagnosis in adulthood often do so because they are looking for clear reassurance that their struggles are real and deserving of support. The flipside of this reasonable quest is that they do not feel confident that the same struggles are equally deserving of support and tolerance in the absence of that diagnosis.

It is also worth remembering that for every person with a diagnosable mental health condition such as anxiety, the condition is caused by a confluence of neurological features in addition to psychological and environmental features. In that sense there is no sharp qualitative distinction between autistic and non-autistic anxiety.

For people whose autism is only diagnosable on the basis of the widened criteria that are currently used (and on the basis of the less rigorous assessments that Frith mentions in the interview), it may make sense to regard their autism not as a diagnosable 'condition' in its own right, but as a neurotype that predisposes an individual towards anxiety. There are many other predispositions to anxiety, both neurological, psychological and environmental, and several different therapeutic approaches, each of which may be suited to particular constellations of predispositions.

By taking these less severely impacted people out of the diagnostic category of autism, we still leave space to acknowledge their challenges (including the vulnerability to anxiety), but we don't have to label as a disorder something that is essentially simply a variation, one which may or may not lead them to encounter mental health difficulties requiring intervention.

As well as protecting people from unhelpful labelling, this would also help us to give more attention and more resources to autistic people who meet the criteria that were in force before the diagnostic category was widened. For these people, autism clearly is a condition in its own right, very severely impacting their lives.

I'd love to see some research on long term outcomes for those who were diagnosed early in life as compared to adults who seek assessment themselves. I know there is a small group that contests diagnoses (usually assessed as children/young teens, where assessment is arranged by others).

I have a feeling that impact of diagnosis on mental health is limited across life, but I may be wrong. And I say it as a possibly autistic adult with ND child. Other factors - home, school, stresses and life circumstances, how understanding and flexible people are, play at least equally significant role.

I never really understand why someone would think it would be better with diagnosis (in terms of support), given that there is no support or 'treatment' whatsoever for ASD, of course there is possible meds for ADHD so thats a different matter but no emotional or pyschological support for that alone

People will often cite EHCP etc but those needs are based on presenting need and behaviour, not diagnosis per se.

I've mixed feelings about diagnosis as a way for the partner's better understanding of the ND adult and how there's scope for abusing it. It's still important to remember other people are important too, and look for balance in relationships. In some cases yes, it's important to know that avoiding that social event is not personal and needing time alone after is not ignoring you on ourpose. In others, it does not matter why partner comes across as controlling, if he insists that his needs are more important than yours and you feel upset it does not really matter if there's ND in the mix, you get out.

I think you may have interpreted my wording differently to how I intended it. When I said autistic anxiety often isn't "hypothetical", I meant that the triggers are frequently predictable environmental factors like sensory overload, routine disruption or communication difficulty. In those cases the distress isn't coming from catastrophic thinking but from real, recurring stimuli.

That's why some CBT techniques that focus on challenging distorted thoughts don't always address the root issue unless they're adapted. I wasn't suggesting non-autistic anxiety is less real or less deserving of support.

I don't think the sources of anxiety are more or less real than an autistic persons anxiety, but I do think there are different distinct sources of anxiety, and the anxiety that is experienced from being autistic isn't something many practitioners are willing to support due to it not fitting their traditional model for anxiety treatment that usually relies on overestimating danger, catastrophic thoughts or avoidance reinforcing fear.

@MyThreeWords I think this is really interesting:

This may be because people who seek diagnosis in adulthood often do so because they are looking for clear reassurance that their struggles are real and deserving of support.

This is something that I've heard anecdotally a lot and I find it quite sad, because the flip side is that if you don't get a diagnosis then your struggles aren't real. It's as though a medical diagnosis is essential for acceptance by yourself and others, which I think is unhealthy for society in general. I think this is also why Uta Frith has received such vitriolic criticism, because people are assuming (wrongly, I think) that she is saying those with a more recent, lower support-needs, diagnosis, are undeserving of support and acceptance. It's just that the support may look different to those with higher needs.

Editing as duplicated

It’s a specific diagnosis that is often co concurrent with autism but much more about neurological sensory processing. The problem is that it could also occur after certain brain injuries, either birth or later accident, epilepsy etc.

https://www.brainbalancecenters.com/blog/signs-and-symptoms-of-sensory-processing-disorder

(and that’s me muddling it as most of the children I’ve taught over the years have elements of it - at the same time the highly sensitive person profile seems to lean towards a higher than average response to external and internal stimuli.)

But sadly my past and more recent post Covid training has always included the very sad fact that extreme trauma in the first few years of life can affect brain development severely which can lead to similar difficulties if sensory processing and language.

Links to executive function difficulties. (And I really can’t get that Durham study about the impact of Covid on executive function of school starters out of my mind.)

I vaguely know a neuroscientist (school yard parent so snatched conversations at a soft play party) who was very clear screens affect the developing brain. But again, it will
be multi factorial. A relative of mine didn’t allow any screens for her child, ever, when growing up and still ended up with a diagnosis of ADD, for which medication really helps that individual.

Coming back to Uta’s original point - which seems to have been lost in translation - is that we don’t know enough and the diagnosis of autism as a catch all doesn’t serve us well. Arguing about it serves no one, debate and rigorous academic processes is, and always has been, the most important part of medical research. Even more so with cognitive / psychological scientific research as there are no hard biomarkers.

It’s not so straightforward.

DS has autism and OCD. The OCD is very debilitating so his triggers are mostly not coming from real, environmental stimuli. He’s at home most of the time so the environment is well controlled. His major issues absolutely are “catastrophic thoughts and avoidence reinforcing fear”.

CAMHS were unwilling/unable to provide CBT treatment though they did medicate. Referred us to autism services who referred back…this went on for years. He’s an older teen now and has recently been refused support from the adult mental health services “because he is autistic”. They said he should seek support from autism services…

Autistic people are being refused treatment from mental health services because they are autistic, even if the issues are nothing much to do with social anxiety or sensory/environmental issues.

I am in Ireland, but I think there are similar problems in the UK.

You're absolutely right.

Another poster says above they got support from autism services, Im keen to know what that consisted of. And as they say its a post code lottery which is a disgrace.

Certainly where I am there is no ongoing support for ASD.

That was also me, and a lot of my post diagnostic support was screening for comorbid conditions, sensory profiles, hospital passport, understand delayed processing, support specific for rigid thinking patterns, support with my PIP application, housing support, support with social services, community observations and supporting feedback reports, advocacy for therapy rather than being dismissed as just autistic and home occupational therapy visits.

What we aren’t talking about much is how very plastic the brain can be. Especially in the early years and then later during puberty. I once had some pretty radical safeguarding training that started with this point, moving on to discuss the impact of neglect during these phases, BUT also how much positive change can happen during puberty as the brain rearranges itself IF external conditions and support is good. (ACEs v BCEs.)

Why Love Matters by Sue Gerhart looks at all the research around this going back decades.

There’s a lot of research on the importance of life long learning and exercise on the brain, for cognitive reserve, mental and physical health.

Eileen Gu recently went viral for talking about how neuroplasticity at her age helped her win. While trying to fund the clip, I thought this was quite a nice write up in Marie Claire:

(start quote; bold fail)
But how, exactly, does a 22-year-old maintain such grace and mental clarity under pressure?

The truth is - and this is something she freely acknowledges - she works hard every day to be the very best version of herself she can possibly be. Which is, in fact, good news for us all, as it proves that mental resilience isn't an innate skill; it's something we're able to develop.

Don't believe us? The science backs it up: check out this study, published in the Journal of Psychiatric Research. And if scientific research floats your boat, you might also be interested in this study(published in the British Medical Journal of Mental Health), which reveals a link between mental resilience and a lowered risk of all-cause mortality.

But how, exactly, does a 22-year-old maintain such grace and mental clarity under pressure?

The truth is - and this is something she freely acknowledges - she works hard every day to be the very best version of herself she can possibly be. Which is, in fact, good news for us all, as it proves that mental resilience isn't an innate skill; it's something we're able to develop.
Don't believe us? The science backs it up: check out this study, published in the Journal of Psychiatric Research. And if scientific research floats your boat, you might also be interested in this study(published in the British Medical Journal of Mental Health), which reveals a link between mental resilience and a lowered risk of all-cause mortality.

Neuroplasticity, in (very) simple terms, is the brain's ability to rewire itself in response to thoughts and experiences.
"What is also interesting, and something Gu articulates very well, is how deliberately she thinks about her performance and resilience," remarks Dr Goddard-Crawley. "She talks about neuroplasticity, the idea that the brain changes through challenge and repetition, and she treats mistakes as part of learning rather than failure. She has even suggested that her age may be one of her advantages, and there is real truth in that.*

"Younger brains tend to be more adaptable and less fixed in their thinking. It’s a powerful message for young people to hear."

When identity becomes entirely performance-based, every setback feels personal.

(end quote - bolding fail)

However, this could be interpreted as quite gaslighty. As it’s simply not going to be as simple as she describes it for many children with or without autism. (I do think the current school system drives intense perfectionism. Unless you have a SEND which is a whole other discussion.)

My point here is that social media isn’t screaming this sort of thing from the rooftops. Teens who are cognitively able enough to access social media are accessing algorithms that spew information at them about Autism and all sorts of other things which may or may not be true/useful. (Tics being spread via TikTok, trans etc)

Im starting to ramble now so will stop there!

I understand what you are saying because there isnt oodles of support.

the 3 key things that support people are ehcps, equality act protections and disability benefits - all of which are meant to be needs based, but generally require evidence

The diagnosis process provides really good evidence of those needs. It isnt just a word on a page. It really should be a multidisciplinary team doing a thorough assessment report. I think peoole say diagnosis as shorthand for identifying needs. My sons diagnosis is about 37 pages.

If someone rocks back and forth for instance, its pretty important to find out if this is a stim behaviour, or relieving pain from wind or a response to hypermobilty. You cant just say this person rocks back and forth so we will support them to do that.

If you are going to the trouble of assessing everything and it turns out you meet the diagnosis criteria for a condition it just seems really odd to withhold it and just have the report.

It should also flag to your gp so the very common comorbidities are on their radar if you present to them with concerns. They should be thinking 'these conditions are more common in autistic people"

It also seems to suggest that if there is no diagnosis, the appropriate default is that the individual is being a pain because he or she is just a dick.

Yes, it can be very hard in a marriage to deal with a partner who is effectivly being a burden, or seems like a dick.

The thing is you want to discern whether they are doing this because of internal reasons they can't easily control, or because they are a dick. But doing so is not actually dependent on an official diagnosis. In fact that can be misleading, someone with no diagnosis can be struggling just because they are like that. Maybe not very smart, maybe scatty, maybe not naturally empathetic and struggles to see how behaviour affects others, whatever. There are thousands of personal limitations that do not come from some diagnosable condition. (I can't remember where I left things a lot, it is annoying, anyone I am in a relationship with needs to be ok with this. I try, but honestly I no longer expect it to change in my lifetime.)

And on the other hand, a person with a diagnosis might be a dick who could do better - maybe they are leaning into that diagnosis a bit.

So we all have to come to some conclusions about a partner who is affecting us negatively with behaviour. DO we accept this person has basically good intentions and is struggling? Do we think they are selfish pricks? If we find we just have a scatty husband with no diagnosis, is it ok to divorce him, even if he loves the whole family? If he gets a diagnosis, is divorce not ok, even if it is making life a misery?

The term "neurodiversity" has a lot to answer for I think. We are all neurodiverse. Our brains, their genetic inheritance, the environment they develop in, their memories, make us all who we are. People are all different because their brains are different. But not all levels of difference are a "condition". Some are just normal variations and types, maybe even less common variations or more extreme types.

Thats incredible. What was the team called, do you mind saying what NHS trust that comes under (dont feel obliged, Im just interested)

Of course, it's the SWYT.

FWIW they also don't have any waiting lists for autism diagnoses at the moment, they do for ADHD though, but I personally thought it was exceptional that they didn't have the same issues with waiting lists for autism that the rest of the country seem to be having.

I did have to wait a year before being offered any support, but the support I have and still am currently receiving is magnificent.

I went to training once. It also covered ADHD. The overall agreement seemed to be that the NT partner 'should' and 'need' to understand difficult behaviour of ND person and be more supportive regardless, and needs to be better educated if they don't want to stay. It's this pressure, stigma and pressure I disagree with.

ND does not trump the needs of others.

Thats amazing, the package sounds incredible.

I agree with this, I have this in my own family at the moment.

My granddaughter self-diagnosed at primary school after listening to a visiting speaker. She told her teacher “that’s just like me” and to its credit, the school referred her for assessment.
When her parents told me, I wasn’t in the least surprised, because she was exactly like I had been at that age, and I’ve long understood that I have what used to be known as female type Asperger’s.

I am very uncomfortable about people making judgements about the helpfulness of other people with ASD getting a late diagnosis on the basis that those people look like ASD barely impacts their lives.

I have to admit I am to because there were always lots of people telling me not to get diagonses with dyslexia till I was and then having dspriaxa also added - and then people telling me it had no effect on me not asking.

DD1 has been luckier with support but I also think she picked up the sort of attitude that world should change for her post diagnosis everyone else should accomodate - and she slowly realising it won't and most people are uninterested and she still going to have to manage her additional issues herself for the most part.