Replying to Uta Frith's views, one by one.
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@CuriousMagpie @KatyElphinstone Just happened to me. I couldn’t be bothered to read Uta Frith’s article but just saw this.
Disgusted. This world is really upside down.
(For a rather different understanding see my page <https://gizmonaut.net/autism-documents/>)
I've just had a look at the link you sent and also at your own page.
It makes me feel a bit sick to read about this stuff, for some reason. But I want to know.
Just to say I think your work is incredible. Very important indeed. And it must be difficult to do it - not just from the intellectual standpoint, but emotionally too.
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I had just seen in the papers that they had received another 87 million on top of the 145 million pounds they already receive annually.
They answered saying they didn't think my research was relevant.
On their site, it say they fund the search for 'treatments' and 'biomarkers'.
I refrained from answering them 'good luck w that one' - but I did write a reply email saying I thought they were barking up the wrong tree (to paraphrase). For my file. They never answered.
@KatyElphinstone @CuriousMagpie Best wishes for you to get the funding you’re looking for.
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@KatyElphinstone @CuriousMagpie Best wishes for you to get the funding you’re looking for.
Ah thanks. I don't really need it, so it's alright, I'm used to not being paid for a lot of my work, having been a parent for 17 years
I just about get by and I'm lucky with my situation. I feel really privileged to be able to do things I'm passionate about.
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@KatyElphinstone regarding pain: there's been times where denying it has been tried. Case in point: babies.
"As recently as the 1980s it was common practice for babies to be given neuromuscular blocks but no pain relief medication during surgery."
Source: https://www.sciencedaily.com/releases/2015/04/150421084812.htm
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Her view: Autism in women has gone too far.
Reply: Interesting. Has freedom in women gone too far, too?
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Her view: We must categorise autism into smaller subgroups.
Reply: Interesting also - a bit like how Hans Asperger did in Nazi Germany? I think, in this case, the purpose is to exclude a lot of people from the category "autism" and to divide the autistic community.
️@KatyElphinstone what's her argument for "We must categorise autism into smaller subgroups."? Why is it necessary, what would we gain?
I do agree that within the spectrum there are obvious differences that might be used for forming groups, for example to address the different needs for support adequately. Maybe there's even different causes, that might be treated differently, but the science is still not far enough for that to be a valid reason
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@KatyElphinstone regarding pain: there's been times where denying it has been tried. Case in point: babies.
"As recently as the 1980s it was common practice for babies to be given neuromuscular blocks but no pain relief medication during surgery."
Source: https://www.sciencedaily.com/releases/2015/04/150421084812.htm
@lizzard see also: "PoC don't feel pain as strongly as white folks", "childbirth isn't painful if you're doing it right
", "your period can't be THIS painful"(I am also somewhat sceptical regarding masking as a concept, but of course you can study internal states scientifically!)
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@KatyElphinstone regarding pain: there's been times where denying it has been tried. Case in point: babies.
"As recently as the 1980s it was common practice for babies to be given neuromuscular blocks but no pain relief medication during surgery."
Source: https://www.sciencedaily.com/releases/2015/04/150421084812.htm
Yes, all the assumptions... Awful to think on. No wonder trauma is so common.
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@KatyElphinstone what's her argument for "We must categorise autism into smaller subgroups."? Why is it necessary, what would we gain?
I do agree that within the spectrum there are obvious differences that might be used for forming groups, for example to address the different needs for support adequately. Maybe there's even different causes, that might be treated differently, but the science is still not far enough for that to be a valid reason
Yes, I think a big part of the problem is intrinsically connecting autism with specific support needs.
What we'd arguably most benefit from, I think, is a) a system of identification of autism/neurodivergence, and b) a *separate* system for allocating support, of varying types, to whomever needs it.
Which would go along with depathologizing autism and neurodivergence.
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@lizzard see also: "PoC don't feel pain as strongly as white folks", "childbirth isn't painful if you're doing it right
", "your period can't be THIS painful"(I am also somewhat sceptical regarding masking as a concept, but of course you can study internal states scientifically!)
It's not just internal states... both clinical experience & studies show masking in autistic people is linked to more serious harms, including weaker self-identity, anxiety, depression, and higher suicidality (Lei et al., 2024; McQuaid et al., 2024).
And research from self-report, behavioural, and neuroimaging studies supports the existence of autistic masking/camouflaging (Hull et al., 2020; Jorgensen et al., 2020; Lai et al., 2019; Milner et al., 2022).
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@lizzard see also: "PoC don't feel pain as strongly as white folks", "childbirth isn't painful if you're doing it right
", "your period can't be THIS painful"(I am also somewhat sceptical regarding masking as a concept, but of course you can study internal states scientifically!)
But yes indeed - about some people's experience being taken as valid while other's aren't.
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It's not just internal states... both clinical experience & studies show masking in autistic people is linked to more serious harms, including weaker self-identity, anxiety, depression, and higher suicidality (Lei et al., 2024; McQuaid et al., 2024).
And research from self-report, behavioural, and neuroimaging studies supports the existence of autistic masking/camouflaging (Hull et al., 2020; Jorgensen et al., 2020; Lai et al., 2019; Milner et al., 2022).
@KatyElphinstone I do believe people mask, I just don't see how that's different from what all kinds of marginalized groups do to fit in, however badly, with a hostile society.
But that's another conversation; we don't have to have it now, and I'm not an expert.
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Right?
Is it like the part where she says it's ridiculous to take lived experience as any basis for 'serious' research.
Interesting that so much of the behavioral autism research investigating all of our deficits and impairments is based on the lived experience of non-autistics, of us. Yet I never heard her speak out against that
️@KatyElphinstone @SecondUniverse @adelinej psychology needs to admit that neurotypical is just another neurotype that happens to be very common and not the perfect brain type from which others diverge. until then, they'll continue to look for reasons to explain why we must be broken versions of them.
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Oh no! And yes, that's exactly my worry. That many people will now be invalidated by those close to them, having read the views of 'the expert' 🤨
The particular family member I am thinking about (mum) was always going to be difficult to tell, when I told her about my ADHD diagnosis a few years ago her response was "don't be ridiculous, everyone is like that". At which point I decided this was probably not the point to mention that these things often run in families and noped out of the conversation.
She already thinks you can't be autistic without speech and language difficulties, so very little I say is going to make any difference
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@KatyElphinstone I do believe people mask, I just don't see how that's different from what all kinds of marginalized groups do to fit in, however badly, with a hostile society.
But that's another conversation; we don't have to have it now, and I'm not an expert.
Yes that's a very good point! In fact there's evidence other populations suffer similarly, as you say.
But masking isn't a diagnostic category for autism, anyway. It's more about just recognising that it's a common thing that happens.
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The particular family member I am thinking about (mum) was always going to be difficult to tell, when I told her about my ADHD diagnosis a few years ago her response was "don't be ridiculous, everyone is like that". At which point I decided this was probably not the point to mention that these things often run in families and noped out of the conversation.
She already thinks you can't be autistic without speech and language difficulties, so very little I say is going to make any difference
Gosh - your mum basically not believing you/your experience. That must've been hard to grow up with. -
Yes, I think a big part of the problem is intrinsically connecting autism with specific support needs.
What we'd arguably most benefit from, I think, is a) a system of identification of autism/neurodivergence, and b) a *separate* system for allocating support, of varying types, to whomever needs it.
Which would go along with depathologizing autism and neurodivergence.
@KatyElphinstone yeah, and maybe separating support needs from illness in general. Perfectly normal, healthy people can be hit hard by compounding factors, and then need support from society, while others start out not quite as able.
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@KatyElphinstone I do believe people mask, I just don't see how that's different from what all kinds of marginalized groups do to fit in, however badly, with a hostile society.
But that's another conversation; we don't have to have it now, and I'm not an expert.
@quidcumque is right; of course there are scientific ways to study internal processes. It's explaining the fact of masking (and, by extension, its effects) away that seems ridiculous to me, when so many reports in the community describe so much pain because of it.
it may not be specific to autism, but it obviously affects autistic people strongly.
It's almost like not the masking is the problem, but the hostility. Maybe let's medicalize that.
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Gosh - your mum basically not believing you/your experience. That must've been hard to grow up with.Thank you
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@KatyElphinstone @SecondUniverse @adelinej psychology needs to admit that neurotypical is just another neurotype that happens to be very common and not the perfect brain type from which others diverge. until then, they'll continue to look for reasons to explain why we must be broken versions of them.
@joshsusser @KatyElphinstone @SecondUniverse @adelinej This is sort of why I started calling it neuroconvergent instead of neurotypical after reading the Double Empathy paper.
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@KatyElphinstone
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I find the "We need subtypes," idea a bit funny - we need more spectra
@punishmenthurts I'm on the "color from space" spectrum!
