Replying to Uta Frith's views, one by one.
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Ok here is a concrete example of personal trouble.
I call places… trying to get help for autism. The services don’t serve my age group, my functioning level (either they want high or low functioning not between and spikey profile), or my government (medicaid) insurance.
If I call some place seeking help for ADHD, the same doesn’t happen.
So like how functional can a label really be if when you call for help for it… To help literally isn’t even there. And also the government probably can’t even measure that the help for you isn’t there because it’s all got the same label.
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So like how functional can a label really be if when you call for help for it… To help literally isn’t even there. And also the government probably can’t even measure that the help for you isn’t there because it’s all got the same label.
It was easy by comparison to get help for the ADHD part. Oh I just need to get diagnosed with a Neuro psychiatrist with multiple eight hour long appointments and it’s really hard to get? So much easier than trying to get the actual intense help that I’m looking for for autism for an adult…
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I agree. I think the frustration is being born out of people needing help and not getting it. And I have been waiting for help for a long time after graduating from special ed and not getting autistic specific help.
can’t even really be independent. If my partner left me I would pretty much starve.
Shit yes.
It's the kind of denial of existence of autistic adults, isn't it... Which is what the whole 'treatment and cures' paradigm actively supports.
All that billion dollar research @panda talks about in their blog.
Wouldn't it be nice if you could see a little bit of that billions of dollars?
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So like how functional can a label really be if when you call for help for it… To help literally isn’t even there. And also the government probably can’t even measure that the help for you isn’t there because it’s all got the same label.
It's a good point
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The label doesn't really function anyway!My feeling is the world is set up wrong.
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It's a good point
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The label doesn't really function anyway!My feeling is the world is set up wrong.
I have felt this too! Which is a really common feeling with all of us. XD
I like symptom labels and this is what I have tried and this is what I haven’t.
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It was easy by comparison to get help for the ADHD part. Oh I just need to get diagnosed with a Neuro psychiatrist with multiple eight hour long appointments and it’s really hard to get? So much easier than trying to get the actual intense help that I’m looking for for autism for an adult…
I got the autism label when I wasn’t looking for it at the neuropsych btw… which means I am not someone who decided they were autistic before someone else… then I told people… they were shocked I wasn’t diagnosed….
Im really obviously according to even people I hardly know. -
I have felt this too! Which is a really common feeling with all of us. XD
I like symptom labels and this is what I have tried and this is what I haven’t.
Which is anyway much more useful information in health and mental health support settings
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Absolutely!
I'm in the middle of a really interesting book by Paul Bloom called 'Against Empathy' which talks quite a bit about the concepts - theory of mind, and so-called 'cognitive empathy' (which I had also found issue with, and mentioned in my article about empathy).
@KatyElphinstone i'm putting that book on my (very long) reading list, thank you.
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@KatyElphinstone I think the problem is "theory of mind" is a poetic term. It resonates with researchers. It SHOULD mean something. It attracts emotional engagement. But it doesn't mean anything specific.
@SecondUniverse @KatyElphinstone I think the allistic/neurotypical* struggle with Theory of Mind reveals something of their neurotype's fundamental nature. My take is they are good at inferring another's emotional state from non-verbal signals, and from that they believe they can effectively read minds and know what other people really think. (Perhaps this is why the Telepathy Tapes nonsense caught on - they think mind reading is a real thing.) So it's easy for them to think ToM is about knowing *what* someone else is thinking, rather than knowing they are thinking their own thoughts that are different from yours.
*: there's no better word for the actual neurotype that usually gets called neurotypical or allistic. we need a better Venn diagram!
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@joshsusser @KatyElphinstone @SecondUniverse @adelinej This is sort of why I started calling it neuroconvergent instead of neurotypical after reading the Double Empathy paper.
@simondassow @joshsusser @KatyElphinstone @SecondUniverse @adelinej NT and autistic do seem to be strange attractors in neurotype space.
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@joshsusser @KatyElphinstone @SecondUniverse @adelinej This is sort of why I started calling it neuroconvergent instead of neurotypical after reading the Double Empathy paper.
@simondassow @KatyElphinstone @SecondUniverse @adelinej Yes, we need better terminology! I get the appeal of that word, but I don't think it's an accurate description or that it solves the problem of that neurotype's name implying some special status. I think we can do better, but to do that we have to actually characterize that neurotype instead of assuming it's the one with all the traits dialed to "normal". Maybe someday...
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@SecondUniverse @KatyElphinstone I think the allistic/neurotypical* struggle with Theory of Mind reveals something of their neurotype's fundamental nature. My take is they are good at inferring another's emotional state from non-verbal signals, and from that they believe they can effectively read minds and know what other people really think. (Perhaps this is why the Telepathy Tapes nonsense caught on - they think mind reading is a real thing.) So it's easy for them to think ToM is about knowing *what* someone else is thinking, rather than knowing they are thinking their own thoughts that are different from yours.
*: there's no better word for the actual neurotype that usually gets called neurotypical or allistic. we need a better Venn diagram!
@joshsusser @SecondUniverse @KatyElphinstone *neuro average?
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@joshsusser @SecondUniverse @KatyElphinstone *neuro average?
@Fizzfizzpopop @SecondUniverse @KatyElphinstone I'd like a term that describes the neurotype based on its character, not that it is common. There are a lot of ways to say it's typical but they all say "neurosupremacy" to me.
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Replying to Uta Frith's views, one by one.
With thanks to all the members of the autistic community who've informed me & inspired me to write this thread.
For those lucky not to know about her article in The Times, and various other related statements, links at the end.
CW: it's upsetting
A thread 🧵
#UtaFrith #Research #Autism #Autistic #ActuallyAutistic #Neurodivergent
@KatyElphinstone Never heard of this lady, just read a few things and came to the conclusion that we are looking at an old woman with borderline theories who is afraid of her own insignificance. Apart from the self-preserving duty to contradict bullshit, I think we can just ignore the old lady, like the other bullshit that neurotypical freaks pull out of their asses.
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Yes, all the assumptions... Awful to think on. No wonder trauma is so common.
@KatyElphinstone @lizzard I still can't believe they did that to me. I'm glad I can't remember it, but still, so barbaric!
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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.
@KatyElphinstone @quidcumque @lizzard I'm not convinced that masking is wholely different from what NTs do to fit it. Some aspects are unique but a lot of it is just the amount and difficulty level.
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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
@PetraPhoenix @KatyElphinstone TBF she's only 30 years out of date on the speech and language issues.
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@PetraPhoenix @KatyElphinstone TBF she's only 30 years out of date on the speech and language issues.
@BernieDoesIt @KatyElphinstone
Yeah but at least 2 of her grandchildren are Autistic, and none of them are that old so
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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 She's right that autism isn't just one thing, but I think C.L. Lynch said it best: it's a "collection of related neurological conditions that are so intertwined and so impossible to pick apart that professionals have stopped trying."
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@KatyElphinstone She's right that autism isn't just one thing, but I think C.L. Lynch said it best: it's a "collection of related neurological conditions that are so intertwined and so impossible to pick apart that professionals have stopped trying."
Nicely put
Autistic people are more heterogeneous within the group than non-autistics. I've been finding this really interesting!
We are more different from each other than neurotypical people are from one another. Even epigenetically, apparently. Which I think is quite cool
