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CIRCLE WITH A DOT

  1. Home
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  3. Most autistic people, despite everything, actually like being autistic.

Most autistic people, despite everything, actually like being autistic.

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neurodivergentactuallyautistiautism
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  • orb2069@mastodon.onlineO orb2069@mastodon.online

    @KatyElphinstone

    Looking into the origin of the phrase 'high functioning autistic' really opened my eyes. They want what they can use.

    seconduniverse@autistics.lifeS This user is from outside of this forum
    seconduniverse@autistics.lifeS This user is from outside of this forum
    seconduniverse@autistics.life
    wrote last edited by
    #58

    @Orb2069 @KatyElphinstone what was the origin? When I'm told that phrase I feel so deflated.

    orb2069@mastodon.onlineO 1 Reply Last reply
    0
    • seconduniverse@autistics.lifeS seconduniverse@autistics.life

      @Orb2069 @KatyElphinstone what was the origin? When I'm told that phrase I feel so deflated.

      orb2069@mastodon.onlineO This user is from outside of this forum
      orb2069@mastodon.onlineO This user is from outside of this forum
      orb2069@mastodon.online
      wrote last edited by
      #59

      @SecondUniverse

      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

      1 Reply Last reply
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      • panda@assemblag.esP panda@assemblag.es

        @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)

        panda@assemblag.esP This user is from outside of this forum
        panda@assemblag.esP This user is from outside of this forum
        panda@assemblag.es
        wrote last edited by
        #60

        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)
        @KatyElphinstone

        panda@assemblag.esP 1 Reply Last reply
        0
        • katyelphinstone@mas.toK katyelphinstone@mas.to

          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.

          panda@assemblag.esP This user is from outside of this forum
          panda@assemblag.esP This user is from outside of this forum
          panda@assemblag.es
          wrote last edited by
          #61

          @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)

          panda@assemblag.esP katyelphinstone@mas.toK 2 Replies Last reply
          0
          • panda@assemblag.esP panda@assemblag.es

            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)
            @KatyElphinstone

            panda@assemblag.esP This user is from outside of this forum
            panda@assemblag.esP This user is from outside of this forum
            panda@assemblag.es
            wrote last edited by
            #62

            A 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

            1 Reply Last reply
            0
            • adelinej@piaille.frA adelinej@piaille.fr

              @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. 🫣🫠

              —-

              PTEN Gene and Autism: Genetic Underpinnings and Neurodevelopmental Impacts

              Access Denied

              favicon

              (www.mdpi.com)

              @shinybat @jmcclure

              katyelphinstone@mas.toK This user is from outside of this forum
              katyelphinstone@mas.toK This user is from outside of this forum
              katyelphinstone@mas.to
              wrote last edited by
              #63

              @adelinej

              Interesting, thank you for this. I'll read the paper.

              @shinybat @jmcclure

              1 Reply Last reply
              0
              • hauchvonstaub@nrw.socialH hauchvonstaub@nrw.social

                @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@mas.toK This user is from outside of this forum
                katyelphinstone@mas.toK This user is from outside of this forum
                katyelphinstone@mas.to
                wrote last edited by
                #64

                @hauchvonstaub

                Yes, I'd agree there, I think - very interesting avenues of thought 🤔

                1 Reply Last reply
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                • ginevracat@toot.communityG ginevracat@toot.community

                  @KatyElphinstone You have once again nailed the subtext of the research. Unfortunately.

                  katyelphinstone@mas.toK This user is from outside of this forum
                  katyelphinstone@mas.toK This user is from outside of this forum
                  katyelphinstone@mas.to
                  wrote last edited by
                  #65

                  @GinevraCat

                  🙏💟 And 😥

                  1 Reply Last reply
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                  • dedicto@zeroes.caD dedicto@zeroes.ca

                    @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):

                    Link Preview Image
                    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 …

                    favicon

                    PubMed (pubmed.ncbi.nlm.nih.gov)

                    katyelphinstone@mas.toK This user is from outside of this forum
                    katyelphinstone@mas.toK This user is from outside of this forum
                    katyelphinstone@mas.to
                    wrote last edited by
                    #66

                    @dedicto

                    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 🙏😊

                    dedicto@zeroes.caD 1 Reply Last reply
                    0
                    • katyelphinstone@mas.toK This user is from outside of this forum
                      katyelphinstone@mas.toK This user is from outside of this forum
                      katyelphinstone@mas.to
                      wrote last edited by
                      #67

                      @Tooden

                      🥂✨🥰

                      1 Reply Last reply
                      0
                      • panda@assemblag.esP panda@assemblag.es

                        @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)

                        katyelphinstone@mas.toK This user is from outside of this forum
                        katyelphinstone@mas.toK This user is from outside of this forum
                        katyelphinstone@mas.to
                        wrote last edited by
                        #68

                        @panda

                        Hear, hear! I wholeheartedly agree, and thank you for your excellent work towards achieving this goal.

                        Even though it seems quite far away still.

                        1 Reply Last reply
                        0
                        • katyelphinstone@mas.toK katyelphinstone@mas.to

                          @dedicto

                          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 🙏😊

                          dedicto@zeroes.caD This user is from outside of this forum
                          dedicto@zeroes.caD This user is from outside of this forum
                          dedicto@zeroes.ca
                          wrote last edited by
                          #69

                          @KatyElphinstone It will not disappoint!

                          dedicto@zeroes.caD 1 Reply Last reply
                          0
                          • dedicto@zeroes.caD dedicto@zeroes.ca

                            @KatyElphinstone It will not disappoint!

                            dedicto@zeroes.caD This user is from outside of this forum
                            dedicto@zeroes.caD This user is from outside of this forum
                            dedicto@zeroes.ca
                            wrote last edited by
                            #70

                            @KatyElphinstone A suitable antidote to #UtterFroth

                            1 Reply Last reply
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                            • wakame@tech.lgbtW wakame@tech.lgbt

                              @katzenmann @KatyElphinstone

                              Autism without ADHD is like lemon ice cream without chocolate sauce.

                              minego@pdx.socialM This user is from outside of this forum
                              minego@pdx.socialM This user is from outside of this forum
                              minego@pdx.social
                              wrote last edited by
                              #71

                              @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.

                              1 Reply Last reply
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