Most autistic people, despite everything, actually like being autistic.
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For us, autism doesn't feel like some detachable defect.
Take it away – and you don’t leave me, just improved. You change who I am.
This feeling isn’t limited to one ‘type’ of autistic person. Across support needs, most autistic people say the same (refs at the end).
2/11
That idea – that there’s a separable ‘pure self’ – is basically not one that's shared by us.
But it's very popular elsewhere!
Many millions are poured into #autism research every year, in the areas of treatment, intervention, prevention, and the hunt for biomarkers.
3/11
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That idea – that there’s a separable ‘pure self’ – is basically not one that's shared by us.
But it's very popular elsewhere!
Many millions are poured into #autism research every year, in the areas of treatment, intervention, prevention, and the hunt for biomarkers.
3/11
The implication here – sometimes unspoken, & sometimes not so unspoken – is that autism is something to be reduced, corrected, or even eventually eradicated
️So my questions are:
1/ Whose problem is autism being treated as?
2/ And whose interests are served by that?4/11
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The implication here – sometimes unspoken, & sometimes not so unspoken – is that autism is something to be reduced, corrected, or even eventually eradicated
️So my questions are:
1/ Whose problem is autism being treated as?
2/ And whose interests are served by that?4/11
Because a ‘world without autism’ isn't abstract.
It's a world without autistic people.
️
️There’s also a deeper issue here.
Autistic people aren't believed about our own experiences. Or we don't get asked at all.
#UtaFrith said it would be unscientific to do so. More on her views here: https://mas.to/@KatyElphinstone/116206483353899881
5/11
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Because a ‘world without autism’ isn't abstract.
It's a world without autistic people.️️There’s also a deeper issue here.
Autistic people aren't believed about our own experiences. Or we don't get asked at all.
#UtaFrith said it would be unscientific to do so. More on her views here: https://mas.to/@KatyElphinstone/116206483353899881
5/11
Then, as we’re not listened to, society's understanding of autism develops without us.
️That flawed understanding is then used to overrule us, again.
Strange little loop.
6/11
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Then, as we’re not listened to, society's understanding of autism develops without us.
️That flawed understanding is then used to overrule us, again.
Strange little loop.
6/11
So what could ethical research look like, instead?
Here's the proposed researchers’ code of ethics:
1. Co-participation,
2. Respectful language,
3. Autistic differences not always as deficits,
4. No alignment with those promoting ABA, eugenics, and similar harms.Far from today's reality.
7/11
Thanks @panda for this! And your work is in the references.
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So what could ethical research look like, instead?
Here's the proposed researchers’ code of ethics:
1. Co-participation,
2. Respectful language,
3. Autistic differences not always as deficits,
4. No alignment with those promoting ABA, eugenics, and similar harms.Far from today's reality.
7/11
Thanks @panda for this! And your work is in the references.
Now let's talk about money.
As there are entire systems that depend on autism being framed as problem, burden... and opportunity.
Research funding,
Intervention markets (bring in health insurance, and there are millions to be made!),
Training pipelines,
Investment markets.8/11
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Now let's talk about money.
As there are entire systems that depend on autism being framed as problem, burden... and opportunity.
Research funding,
Intervention markets (bring in health insurance, and there are millions to be made!),
Training pipelines,
Investment markets.8/11
There is, quite literally, an Autism Investor Summit – where autism services are discussed in terms of market growth and M&A.
So yes.
Autism is also a business model.
(refs at the end)9/11
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There is, quite literally, an Autism Investor Summit – where autism services are discussed in terms of market growth and M&A.
So yes.
Autism is also a business model.
(refs at the end)9/11
Which brings us back to those questions:
1/ Whose problem is autism being treated as?
2/ And whose interests are being served by that?And...
3/ What kind of future is being imagined??
10/11
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Which brings us back to those questions:
1/ Whose problem is autism being treated as?
2/ And whose interests are being served by that?And...
3/ What kind of future is being imagined??
10/11
If autistic people are saying ‘this is part of who I am’ and the response is to continue to fund ways to reduce and eliminate autism, while making very sure our voices are not heard.
That isn’t neutral.
It's chilling.
11/11
End of 🧵
Refs in link below
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If autistic people are saying ‘this is part of who I am’ and the response is to continue to fund ways to reduce and eliminate autism, while making very sure our voices are not heard.
That isn’t neutral.
It's chilling.11/11
End of 🧵
Refs in link below
Here are the references for this thread:
Epistemic injustice: Autism, by K.J. Elphinstone
Epistemic injustice: Autism
Neurofabulous (www.neurofabulous.org.uk)
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So what could ethical research look like, instead?
Here's the proposed researchers’ code of ethics:
1. Co-participation,
2. Respectful language,
3. Autistic differences not always as deficits,
4. No alignment with those promoting ABA, eugenics, and similar harms.Far from today's reality.
7/11
Thanks @panda for this! And your work is in the references.
@KatyElphinstone I'm reminded of this *intensely* unethical science paper I read some twenty years or so where scientists electrocuted fish.
Why? To find out whether fish felt pain.
Their conclusion? They exhibit some behaviour patterns that suggest they could, but more research (i.e. electrocution) is required. You can't be sure, after all.
If this seems particularly disturbing, as if it's just some psychopaths using science as an excuse to live out their sicko fantasies ...
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Most autistic people, despite everything, actually like being autistic.
Not all, of course. But most of us.
And I don’t just mean ‘making peace with it’.I mean: it's bound up with who we are.
A thread 🧵
1/11
(refs at the end)
#Autism #ActuallyAutistic #NeurodivergentI completely agree. I wouldn't want a "cure" if where was one - but that's when referring to the condition as a whole. Certain bits I could sure do without and actively work on changing: like being able to recognize emotions by facial expression (or to be able to show my own more clearly).
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@KatyElphinstone I'm reminded of this *intensely* unethical science paper I read some twenty years or so where scientists electrocuted fish.
Why? To find out whether fish felt pain.
Their conclusion? They exhibit some behaviour patterns that suggest they could, but more research (i.e. electrocution) is required. You can't be sure, after all.
If this seems particularly disturbing, as if it's just some psychopaths using science as an excuse to live out their sicko fantasies ...
@KatyElphinstone ...in public, well no, apparently.
Apparently I'm anthropomorphizing animals, which is a science no-no. I am assigning human-like qualities to them, based on the undeniable observation that they act similar to humans when placed into similar situations.
That's not how it's done! *tuts in science*
Clearly it is significantly more ethical to discard the evidence in front of us, so we can continue to abuse other creatures at will.
This is done ...
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@KatyElphinstone ...in public, well no, apparently.
Apparently I'm anthropomorphizing animals, which is a science no-no. I am assigning human-like qualities to them, based on the undeniable observation that they act similar to humans when placed into similar situations.
That's not how it's done! *tuts in science*
Clearly it is significantly more ethical to discard the evidence in front of us, so we can continue to abuse other creatures at will.
This is done ...
@KatyElphinstone ... to women in medicine. This is done to people of colour. This is done to autistics.This is a pattern of systemic abuse.
And there is *always* someone who profits from this.
I'm pretty fed up with that kind of attitude as you might imagine.
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@KatyElphinstone ...in public, well no, apparently.
Apparently I'm anthropomorphizing animals, which is a science no-no. I am assigning human-like qualities to them, based on the undeniable observation that they act similar to humans when placed into similar situations.
That's not how it's done! *tuts in science*
Clearly it is significantly more ethical to discard the evidence in front of us, so we can continue to abuse other creatures at will.
This is done ...
It certainly is! Anthropomorphism my ... (ahem)...
I mentioned it too, in my article here: https://www.neurofabulous.org.uk/furries-and-therians.html
(and apologies for the images: I genuinely didn't know they were AI generated, at the time, and I plan to change them - they were just stock photos)
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It certainly is! Anthropomorphism my ... (ahem)...
I mentioned it too, in my article here: https://www.neurofabulous.org.uk/furries-and-therians.html
(and apologies for the images: I genuinely didn't know they were AI generated, at the time, and I plan to change them - they were just stock photos)
My words were:
"And anybody who indulges in anthropomorphism, e.g. "Oh look, I stepped on my dog's paw and he yelped... do you think he might feel pain?" (okay, I'm exaggerating a little) is frowned upon.
It's traditionally considered silly and 'womanish' to attribute feelings and thoughts to anyone who doesn't look like us or speak like us."
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Here are the references for this thread:
Epistemic injustice: Autism, by K.J. Elphinstone
Epistemic injustice: Autism
Neurofabulous (www.neurofabulous.org.uk)
@KatyElphinstone thank you (again
) -
Most autistic people, despite everything, actually like being autistic.
Not all, of course. But most of us.
And I don’t just mean ‘making peace with it’.I mean: it's bound up with who we are.
A thread 🧵
1/11
(refs at the end)
#Autism #ActuallyAutistic #Neurodivergent@KatyElphinstone Curing myself of Autism would be just as, if not more, disrespectful towards my ancestors than cutting off my hair.永
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Here are the references for this thread:
Epistemic injustice: Autism, by K.J. Elphinstone
Epistemic injustice: Autism
Neurofabulous (www.neurofabulous.org.uk)
@KatyElphinstone Fantastic thread Katy.
I've long felt exactly what you said in the first t00t and remember refusing a particular therapeutic intervention 20 years ago (EMDR) because I feared it would change who I am. That was many years before realising I was autistic. Life is bloody hard being #ActuallyAutistic but it is who I am and I love who I am.
What I do not love is how difficult it is to be me in a society that doesn't want to know who I am, let alone accommodate me.
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Here are the references for this thread:
Epistemic injustice: Autism, by K.J. Elphinstone
Epistemic injustice: Autism
Neurofabulous (www.neurofabulous.org.uk)
Looking into the origin of the phrase 'high functioning autistic' really opened my eyes. They want what they can use.
