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
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
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
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.
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
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 👇
Here are the references for this thread:
https://www.neurofabulous.org.uk/refs-for-epistemic-injustice-thread.html
@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.
Looking into the origin of the phrase 'high functioning autistic' really opened my eyes. They want what they can use.
Ouch! And yes, it's very explicit, isn't it... "functioning" 😨
This fig plucker:
"Asperger did not belong to the Nazi Party, but he referred disabled children to the Am Spiegelgrund clinic in Vienna’s Am Steinhof psychiatric hospital, where almost 800 children were murdered between 1940 and 1945 as part of the regime’s euthanasia program. "
https://blogs.uoregon.edu/autismhistoryproject/people/hans-asperger/#:~:text=Asperger%20did%20not%20belong%20to%20the%20Nazi%20Party%2C%20but%20he%20referred%20disabled%20children%20to%20the%20Am%20Spiegelgrund%20clinic%20in%20Vienna%E2%80%99s%20Am%20Steinhof%20psychiatric%20hospital%2C%20where%20almost%20800%20children%20were%20murdered%20between%201940%20and%201945%20as%20part%20of%20the%20regime%E2%80%99s%20euthanasia%20program.
@KatyElphinstone A cure isn't possible. That would be death.
I hate my anxiety, and EDS. I hate delays processing my emotions, and difficulty recognizing them...
But I like me, and wouldn't change that for anything, and I am autistic.
@KatyElphinstone
I've never heard from to an autistic person who wanted a "cure" who didn't seem to lack self-awareness or at least a nuanced view on autism.
It's one thing to suffere from a sensory experience so much, that you'd rather be a different person than to continue suffering, the same goes for loneliness, but some people act, like between autistic and allistic, there is a secret third option, or worse, they'd rather be the kind of person they complain about for others.
1/
@KatyElphinstone
Complaining about how allistic people act, but then wishing to become one of them means wanting to just be on the other side of mistreatment and opression.
Just wanting to be the perpetrator instead of the victim.
It's likely partially that lack of self-awareness, that makes people like this so "unpopular" and to many unlikable, not just the autism.
People like that would probably still be miserable and self-hating, if they could become allistic.
2/
@KatyElphinstone
If you could "change your neurotype", people like that could become the equivalent of people who become addicted to plastic surgery, because it's never enough and the problem lies somewhere else (at least until they could change the part of their brain that makes them lack self-awareness and makes them narrow minded).
But it is this lack of self-awareness, that makes a productive discussion impossible, so I usually don't try to change their view on the matter.
3/3
Yes, I'd agree there, I think - very interesting avenues of thought 🤔
@KatyElphinstone thank you for sharing, it's important to say. And…
…this annoys me. 🤬 I heard this and the way I hear it is that I'm the disease they want to cure. All people are perfect the way they are, they don't need to be cured out of existence
Thank you for posting 🫂💜
Indeed! I'm glad you've seen this.
@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 ...
@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.
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."
@KatyElphinstone @jens Fish can't yelp, so QED 🙄
/s
@jens @KatyElphinstone What if humans behave like animals as they are, indeed, part of the animal kingdom?
It's a weird exceptionalism that's backed by essentially no credible research.
@KatyElphinstone Thank you for this thread
Such a code is ambitious but has more potential than just campaigning for better ethics in the autism research industry.
If this were to go ahead I see several phases:
1) Development of the code primarily by Autistic researchers
2) Inviting as many Autistic researchers and some potential allies, especially funders, to subscribe to it
3) Look for wide adoption… (1/3)
Hear, hear! I wholeheartedly agree, and thank you for your excellent work towards achieving this goal.
Even though it seems quite far away still.
@KatyElphinstone Have you seen this response to that whole line of thought? "Anti-ableism and scientific accuracy in autism research: a false dichotomy" (Morton Ann #Gernsbacher is one of the authors):
It was recently argued that autism researchers committed to rejecting ableist frameworks in their research may sacrifice "scientifically accurate" conceptualizations of autism. In this perspective piece, we argue that: (a) anti-ableism vs. scientific accuracy is a false dichotomy, (b) there is no id …
I had come across this paper in passing, but haven't read it in full. It looks excellent, and I've downloaded it for reading later. Thanks 🙏😊
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