Replying to Uta Frith's views, one by one.
-
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.
-
@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.
-
@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
-
Her view: Autism in women has gone too far.
Reply: Interesting. Has freedom in women gone too far, too?
_________
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
-
@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!)
-
@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.
-
@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.
-
@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).
-
@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.
-
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.
-
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.
-
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
-
@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.
-
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.
-
@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.
-
Gosh - your mum basically not believing you/your experience. That must've been hard to grow up with.Thank you
-
@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.
-
@KatyElphinstone
.
I find the "We need subtypes," idea a bit funny - we need more spectra
@punishmenthurts I'm on the "color from space" spectrum!
-
@SecondUniverse @KatyElphinstone @adelinej Why do these highly-educated academics always get Theory of Mind wrong? ToM is not the ability to read minds. It is the awareness that other individuals have their own thoughts and perceptions that will be different from your own, not the ability to know what those are.
@joshsusser @SecondUniverse @KatyElphinstone @adelinej
theory of mind is an example of what i call "bucket concepts" (still working on a better term). one research team coins it to mean one thing--particularly, in chimpanzees, the ability to recognize goal directed behavior by humans and infer their desired outcome--and that meaning goes in the bucket. then someone asks 'what does this look like in children?' and chooses the ability to understand that others can hold false beliefs. so that goes in the same bucket. over time, other people have different ideas about what theory of mind means: perspective-taking; inferring others' beliefs, intentions, and desires; assessing your _own_ beliefs, intentions, and desires; predicting others' behavior; having a mind at all; recognizing that others have minds; and of course our favorite "reading minds". all of it goes in the bucket, because each contributor thinks their addition is just more of what's already in the bucket.
now the whole bucket gets passed around, under the label "theory of mind", and treated as a coherent concept, despite the fact that it's actually half a dozen (at least) concepts thrown together in a bucket. most people don't look inside the bucket anymore, because they’re convinced their preferred definition is the only one inside. if there's a disagreement, nobody finds themselves in the wrong because their preferred definition is, after all, actually in the bucket.
trying to take anything back out of the bucket would give us a different problem, because once we nix one of the definitions (like that ridiculous "mind reading" one) we invalidate an unknown number of past usages of the term. honestly, i'd go for it, but academia surely would not, because people wouldn't be able to reference any prior work on theory of mind without examining whether it relied on an extra bit of meaning we're getting rid of. so the bucket never shrinks, only grows. the term can only become more overloaded and less meaningful.
but for some reason, certain areas of research love these bucket terms. i've seen a number of them and i wonder if anyone really considers how deleterious to the advancement of science when people unknowingly use the same terminology for different things.
(edit: punctuation)
