Most autistic people, despite everything, actually like being autistic.
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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 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) -
4) If/when a critical mass is reached, it could be used by researchers to make it easier to refuse to participate in unethical projects and for (enlightened and/or looking for a good PR story) funders to make it a requirement in grant agreements… (2/3)
@KatyElphinstoneA much simpler endeavour could be run in parallel: a campaign to have all grant agreements of large projects (say 1+ million UKP/USD?) published in a public register before the project starts. This would enable early scrutiny which could help kill the most unethical projects. If that happens a few times (as it eventually did, but late in the game, with Spectrum 10K) it should also influence funders to support more ethical research. (3/3)
@KatyElphinstone -
@KatyElphinstone As I was mentioning in my answer yesterday autism is my DNA…
The rare mutation genetic I have probably inherited from my dad, as I have like him macrocephaly, can also be linked to autism amid others things like the cancerS risks. 🫣🫠
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PTEN Gene and Autism: Genetic Underpinnings and Neurodevelopmental Impacts
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@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/
Yes, I'd agree there, I think - very interesting avenues of thought
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@KatyElphinstone You have once again nailed the subtext of the research. Unfortunately.
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@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):
Anti-ableism and scientific accuracy in autism research: a false dichotomy - PubMed
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 …
PubMed (pubmed.ncbi.nlm.nih.gov)
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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@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.
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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
@KatyElphinstone It will not disappoint!
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@KatyElphinstone It will not disappoint!
@KatyElphinstone A suitable antidote to #UtterFroth
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Autism without ADHD is like lemon ice cream without chocolate sauce.
@wakame
@katzenmann @KatyElphinstone I hate that this makes perfect sense to me.I would love to have better ways to manage my anxiety and executive dysfunction, but I wouldn't give up being ADHD or being autistic.
I am who I am, and those are both intrinsic parts of me. You can't remove either without removing me.
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R relay@relay.infosec.exchange shared this topic
And 
🥰
