• Comprehensive49@lemmygrad.ml
    link
    fedilink
    arrow-up
    8
    ·
    10 months ago

    For milder forms of autism, treatment should be left up to the person and definitely isn’t necessary.

    However, I also know people who have extremely severe forms of autism, which are debilitating and require 24/7 care, for which such a treatment would be a godsend.

  • ButtigiegMineralMap@lemmygrad.ml
    link
    fedilink
    arrow-up
    8
    ·
    10 months ago

    I think it should be 100% voluntary, the last thing I want to hear is people saying that Autism is a disease to be eradicated, I know plenty of people who have it and don’t consider it a disability in any sense. There are admittedly some that I know that don’t like it and the feelings and anxiety that comes with it. I can’t speak to it personally bc I don’t have it but from what I gather (from personal bias admittedly) it’s not something like Polio or Covid or Cancer in which a cure or breakthrough is more important. Just my 2 cents

    • ☆ Yσɠƚԋσʂ ☆@lemmygrad.mlOP
      link
      fedilink
      arrow-up
      11
      arrow-down
      3
      ·
      10 months ago

      I agree with that, neurodivergence shouldn’t be seen as a negative. It’s good to have options available for people, but we should also try to structure society in a way that’s as accommodating as possible without people feeling forced to change how their minds work to fit in.

  • homonmain@lemmygrad.ml
    link
    fedilink
    arrow-up
    8
    ·
    10 months ago

    I joined an autistm support group and one of the other participants signed up for a medical trial to ‘cure’ or rather, lessen the effects of autism(something about a zap to rewires the brain done over a few weeks). We talked about the ethics of it for a bit but did end up agreeing that sometimes, being autistic sucks and it’s alienating. To wake up one day, neurotypical and able to pick up on social cues or maintain friendships would be so freeing.

    I personally have accepted that my autism is as much of me as my soul so I’m not interested in a ‘cure’, but talking over the woes with other autistic people and hearing relief even at the chance to have it taken away, really changed my worldview.

    Side note, we also talked about what a ‘cure’ would even mean because at what point does our being start and our autism end? I’m still skeptic but I hope things work out for that person.

    • ☆ Yσɠƚԋσʂ ☆@lemmygrad.mlOP
      link
      fedilink
      arrow-up
      6
      arrow-down
      2
      ·
      10 months ago

      We don’t even know if it will work in humans yet. They’ve only done tests on mice so far, but the gist of it is that they identified a particular protein and a gene responsible for its production. The gene therapy causes more of the protein to be produced which resulted in behavioral changes in the mice. How that plays out with humans is an open question.

      • LeniX@lemmygrad.ml
        link
        fedilink
        arrow-up
        3
        ·
        10 months ago

        I have a feeling I know how it is going to play out with western liberals, though (especially right-wing chuds and anti-vaxx groups): “Ebil CCPP spreading autism via vaccination confirmed!!!”

      • doccitrus@lemmygrad.ml
        link
        fedilink
        arrow-up
        1
        ·
        10 months ago

        It might do something in humans, but the idea that autism is reducible to genes— and a single gene, at that— strikes me as laughable on its face.

        • ☆ Yσɠƚԋσʂ ☆@lemmygrad.mlOP
          link
          fedilink
          arrow-up
          2
          arrow-down
          2
          ·
          10 months ago

          How our whole body grows is a product of the genes ultimately, so the way brain connections form, balances of different proteins, and so on are also governed by our genetic makeup. I agree that it’s obviously a much more complex picture than a single gene. However, if modifying a particular gene does increase production of this protein and that improves the way people are feeling then it’s a tangible benefit. Ultimately that’s the goal here.

    • doccitrus@lemmygrad.ml
      link
      fedilink
      arrow-up
      1
      ·
      edit-2
      10 months ago

      Gene therapies for other genetic conditions often do, but then those aren’t neurodevelopmental.

      I’m kinda fascinated by the question of how something like this would affect me. Like the way a psychedelic experience can teach us lessons we still retain (and want to hold onto), like the way formative experiences leave deep traces in us even when when we grow and change, what features of autism would always ‘stay with me’ on some level? If things changed perceptually for me, what old habits of mind would I retain? What would I miss most? What would I not miss?

      In a lot of ways I think temporary windows into different neurotypes would be much more interesting than purported ‘cures’. People don’t usually want to undo their own personalities, including mental dimensions like neurotypes. But who wouldn’t want to play with that a bit, if they knew it were safe?

  • AOCapitulator [they/them, she/her]@hexbear.net
    link
    fedilink
    English
    arrow-up
    8
    arrow-down
    2
    ·
    edit-2
    10 months ago

    Excuse me what the FUCK?

    They really still trying to fucking cure us off the face of the earth huh

    This is fucking disgusting and I can’t believe I’m seeing people here reacting in any way positively, especially autistic people!

    This is genocidal shit!

    “Curing” autism is genocide

    • ForgetPrimacy@lemmygrad.ml
      link
      fedilink
      arrow-up
      2
      ·
      10 months ago

      Speaking as a relatively high-functioning autistic person, and as a person who definitely perceives those people with autism I know as objectively blessed when compared to their allistic “peers”, I’m trying to read this as the reporter’s white-savior-y take on what may simply be a scientific advance?

      All but the first paragraphs are pay walled but, here goes my charitable guess toward the scientists here;

      Doctors have discovered how to undo a thing (in mice) that the author of this article describes as causing symptoms of autism. This is useful science I suppose, with it we might one day have the power to cure allism. Alternatively, as other comments have pointed out, there are autistic people who are unable to live “normal” lives (save, for a moment, the argument over what the fuck a “normal” life is and who the fuck thinks they have the right to “save” it). Consider instead an autistic person who wishes they had any choice regarding their autism, it would be cool if the science of neurodivergence had been developed enough to provide them with that choice. Realistically… I bear no illusions that choice might be involved. If doctors in the US had an excuse to call it “helping” when they fuck nonconsensually with someone’s brain, I have no doubt I would be strapped to a fucking bed faster than you can say “free healthcare?”. Between lobotomies and forced sterilization, the US has an undoubted record for society “cleansing”.

  • sovietknuckles [they/them]@hexbear.net
    link
    fedilink
    English
    arrow-up
    6
    ·
    10 months ago

    Autism is not a disease, and this isn’t really an improvement over wanting to abort autistic fetuses. What happens to children who get this gene therapy but stay autistic? That person is going to have to live their whole life with the realization that their parents tried to change them and failed. And any child who is too old for it, because autism is a developmental disorder, but they have a sibling getting it, will feel equally unwanted.

    An autism “cure” is an excuse for why a neurotypical world is hostile towards autistic people, deepening that hostility and saying “Well actually it’s because you’re diseased but that’s okay because we’re going to try to change who you are.”

    • Ronin_5@lemmygrad.ml
      link
      fedilink
      arrow-up
      4
      arrow-down
      1
      ·
      edit-2
      10 months ago

      Do you have the same opinion for someone with a level 3 on the ASD? They will require constant care just to function, and will decrease the material conditions of anyone who takes care of them.

      • sovietknuckles [they/them]@hexbear.net
        link
        fedilink
        English
        arrow-up
        5
        arrow-down
        1
        ·
        10 months ago

        The idea of classifications of autism into high-functioning and low-functioning groups like that was invented by famed Nazi Hans Asperger because he was enthusiastic about eugenics and wanted a method for determining which autistic people should stay and which should go.

        Someone who would get classified as “level 3” will 100% have issues that would be classified as diseases, and it makes more sense to treat those diseases first. But for someone with autism and nothing else? Yes I hold the same opinion that they should not have their autism eradicated.

        • Ronin_5@lemmygrad.ml
          link
          fedilink
          arrow-up
          6
          ·
          10 months ago

          I get your point. Trying to categorize people does create more division.

          But we’re not talking about eugenics. We’re talking about treatment. I think the option should be available to autistic people, and it should be their choice to take it.

          • AOCapitulator [they/them, she/her]@hexbear.net
            link
            fedilink
            English
            arrow-up
            3
            arrow-down
            1
            ·
            edit-2
            10 months ago

            You’re using nazi eugenics terms to have your discussion, you can’t just say this isn’t about eugenics.

            Nazi bullshit is making up a good part of your mental framing of this issue, that’s clear based on the words you use, reflect on your brainworms

            • Ronin_5@lemmygrad.ml
              link
              fedilink
              arrow-up
              4
              ·
              10 months ago

              Yes, this is one area I’d have to look more into and reformulate my opinion. From a quick search, a lot of medical professionals support the neurodiversity model.

          • sovietknuckles [they/them]@hexbear.net
            link
            fedilink
            English
            arrow-up
            0
            ·
            10 months ago

            I think the option should be available to autistic people, and it should be their choice to take it.

            To reference capeshit, this was basically the plot of X-Men: The Last Stand, and it was never so simple. People around mutants pressured them and in some cases tried to force them to do it

              • sovietknuckles [they/them]@hexbear.net
                link
                fedilink
                English
                arrow-up
                2
                ·
                edit-2
                10 months ago

                Photoepilepsy is a disease. If that’s why they’re getting gene therapy, then great.

                In my case, I have adrenoleukodystrophy, a genetic demyelenating disease, and I want nothing more than to get gene therapy so I stop losing the ability to walk (because my existing nerve damage will never heal, the most gene therapy can do is keep it from getting worse, which would still be very good) and being at risk of dying every time I hit my head.

                I really do appreciate the value of gene therapy for treating diseases. But this isn’t being presented as a “photoepilepsy jab”, it’s being presented as autism jab, and autism is not a disease.

                • GarbageShoot [he/him]@hexbear.net
                  link
                  fedilink
                  English
                  arrow-up
                  3
                  ·
                  10 months ago

                  I wasn’t saying it was a photoepilepsy jab, forgive me for being unclear. I was just establishing a baseline here for my own reference. The next element is: there are symptoms of ASD (which is really a collection of conditions that get lumped together due to comorbidity) that plainly damage someone’s quality of life not because of society being cruel to ND people (which it is and is the most common reason for someone with ASD suffering), such as being hypersensitive to sound, being overstimulated to the point of torture by being in a crowd of people, etc, without getting into the more extreme cases. Imagining that these sensory issues could be separated from benign things like “preference for concrete thinking”, wouldn’t it be good to have a way to prevent people from having that condition?

          • albigu@lemmygrad.ml
            link
            fedilink
            arrow-up
            2
            arrow-down
            2
            ·
            10 months ago

            I think the option should be available to autistic people, and it should be their choice to take it.

            Bad analogy, but a similar thought process could be applied to being gay. The reality is that the majority of people researching, allocating funds for or marketing these “solutions” are usually neurotypical themselves. I really don’t want to see how tenuous the definition of “volunteer” is going to be if this ever gets to human trials.

            • GarbageShoot [he/him]@hexbear.net
              link
              fedilink
              English
              arrow-up
              6
              ·
              10 months ago

              Being gay does not represent an intrinsic substantial detriment to one’s quality of like the way some manifestations of ASD can, e.g. problems with sensory overload. The comparison is completely inappropriate because there is little reason other than homophobia to want to “cure” homosexuality.

              • albigu@lemmygrad.ml
                link
                fedilink
                arrow-up
                4
                arrow-down
                1
                ·
                10 months ago

                To be fair I’m not up to date on the debates among researchers nowadays, but I think it could be possible for there to still be a parallel. Until fairly recently the medical consensus on LGBTQ people was that they were mentally ill, and specific examples of people who were both mentally ill and LGBTQ were used to discriminate against the entire group.

                But nowadays we have a different understanding that queer people are just people and the mental illness bit is just because people are often mentally ill (and also because of a lot of correlation with trauma, discrimination, bullying and social pressures).

                I wouldn’t be surprised if a similar trajectory happened to autism and the classification of type 2-3 autism got reformulated into separate categories.

                But even if my analogy was worse than I though, I think my point still stands. The most enthusiastic supporters of something like that won’t be actual autism advocacy groups, but shit like Autism Speaks, and legislators surely aren’t going to listen to actual autistic people. In the case of autism, they can even claim that “mentally ill people can’t consent” as they’ve already done with sectioning.

                Since the title already has “autism jab” in it it’s worth noting that the very first “vaccines cause autism” study did a lot of unsafe, traumatic and anti-ethical tests on autisc children with basically no informed consent even from the parents.

                • GarbageShoot [he/him]@hexbear.net
                  link
                  fedilink
                  English
                  arrow-up
                  2
                  ·
                  10 months ago

                  I look forward to the categorization getting more refined.

                  No one believes ancient antivax hocum on this site, that’s one of the few good things that I think can be said about it without reservation

            • Flamingoaks@lemmygrad.ml
              link
              fedilink
              arrow-up
              2
              arrow-down
              2
              ·
              edit-2
              10 months ago

              what about blindness, is blindness too much part of a person for it to be cured, being gay is clearly “incurable” and no one would have a reason to try unless they were servery homophobic, and i think being blind is pretty clearly something that most people would rather do away with clearly divergences from the average are on a spectrum. i would say anything that prevents people from doing things they would like to do are a reasonable target for treatment and cure, and some of the things that are classified as autism are that.

              also are u forgetting many people with autism treat their symptoms.

              • albigu@lemmygrad.ml
                link
                fedilink
                arrow-up
                2
                arrow-down
                1
                ·
                10 months ago

                There hasn’t been a historical drive to demonise blind people and their parents to this day, use of racially-driven pseudoscience to justify their mass incarceration and euthanasia or invent a whole conspiracy theory about vaccines that had massive consequences in the previous pandemic. And I’ve never met a blind person who prefers staying blind.

                also are u forgetting many people with autism treat their symptoms.

                I’m not, I’m only refusing to forget the many people experimented on without consent going all the way back to Hans Asperger, those who don’t wish for this treatment at all, or the historical pushing of drugs like risperidone for autistic children (often with lasting adverse effects) by the pharma-“advocacy group” alliance. And above all I don’t forget we currently live in a world where a bunch of countries can lock people up “for their own good” in medical institutions and apply treatments with barely any consent.

                I don’t think it’s too outlandish of a scenario to imagine “experimental gene treatments” being imposed on a bunch of children due to pharma companies preying on desperate parents.

              • doccitrus@lemmygrad.ml
                link
                fedilink
                arrow-up
                1
                ·
                edit-2
                10 months ago

                Cures for otherwise blinding conditions do exist (e.g., cataract removal, some gene therapies for retinal diseases) and they’re good. I have a condition that will eventually render me blind and I would seek to be cured if a cure existed for it.

                But pursuing/promoting cures for disabilities, including blindness, is not without problems. See, in the US for example, the politics of the National Federation of the Blind vs. the Foundation for Fighting Blindness. Cures also raise class issues and threaten to further marginalize people who won’t or can’t be cured, for whatever reason. In particular, imagining a world in which ‘everyone’ is cured is dangerous and even inherently harmful ideology.

                Also, while I have some reservations about the rhetoric and what I think it likely really means, there are blind people out there who will tell you they don’t want to be cured because it’s part of who they are and they’re getting along just fine. Such people do exist. A similar sentiment exists for some within the deaf community as well.

                • Flamingoaks@lemmygrad.ml
                  link
                  fedilink
                  arrow-up
                  1
                  ·
                  10 months ago

                  Who are u talking to? I never said there werent any cures for blindness i said it was something most people who have it would rather not have it. i never said there is not conflict between trying to help people with disabilities with cures as opposed to other ways i said that it was reasonable for cures to exists. I never said i wanted a world where everyone was cured, i again said it was reasonable for some of these things to have cures or treatments or for research to be done to find them. And i didnt say that literally every one can agree they would rather be blind i said most people because obviously there is always some who thinks otherwise no matter how big a majority is.

                  So again who are u talking to, certainly not to what i said and especially not to what i meant cuz i didnt even mean to say anything at all about blindness I clearly meant that this type of research (into autism cures) was ethical (as long as it was only targeting forms or symptoms of autism that people with autism would rather not have). So who is it, at best u completely miss interpreted or ignored what i said or more realistically u are putting some very fucked up and ignorant words in my mouth that i didnt say cuz u know when u reply to me arguing against something i didnt say u are also arguing that i did say it or at least that i meant it. So again what are u doing what are u hoping to do here, this isnt a “fun fact” comment or funny comment u are making an argument but against a position im not even holding.

          • sovietknuckles [they/them]@hexbear.net
            link
            fedilink
            English
            arrow-up
            1
            arrow-down
            2
            ·
            10 months ago

            I get your point. Trying to categorize people does create more division.

            But we’re not talking about eugenics. We’re talking about treatment.

            I wasn’t bringing up the eugenics roots of “high function/low functioning” to call gene therapy eugenics, I did it to reject the idea that these people in your hypothetical are of less value if they don’t take the gene therapy. When we say that autism is not a disease, we mean that it is that autistic people have material needs to be met, just like anyone else, and the autism itself is not a problem.

            Also,

            Do you have the same opinion for someone with a level 3 on the ASD? They will require constant care just to function, and will decrease the material conditions of anyone who takes care of them.

            From each according to their ability, to each according to their need, unless we’re talking about autism, in which it’s better to purge their genes of neurodivergence than ask anyone to help them out, apparently

            • Ronin_5@lemmygrad.ml
              link
              fedilink
              arrow-up
              2
              ·
              10 months ago

              Okay, so what you’re advocating is an entire movement backed up by medical professionals.

              I do like this paradigm a lot better. In learning about neurodiversity, we can better learn about childhood development and education as well.

      • AOCapitulator [they/them, she/her]@hexbear.net
        link
        fedilink
        English
        arrow-up
        4
        arrow-down
        1
        ·
        10 months ago

        They could “function” just fine if we didn’t live in this hellworld. Everyone needs support, some people need more, but it doesn’t make them “nonfunctional” it just means they need more support. Jesus

  • sweeney@lemmygrad.ml
    link
    fedilink
    arrow-up
    7
    arrow-down
    1
    ·
    edit-2
    10 months ago

    Told myself I wouldn’t ever comment, just lurk, but I feel compelled to say that I personally support this, as an autistic person. Autism is debilitating for me. I would gladly welcome a reprieve from the hell it causes me.

  • su25@lemmygrad.ml
    link
    fedilink
    arrow-up
    6
    ·
    10 months ago

    discussion on whether it actually works or not aside, i thought we’ve kinda agreed that ethically its wrong to treat neurodivergence as a disease to be cured. it’s a cool scientific innovation, if only in mice, but i’m hoping that the chinese state and party spend more time deliberating the ethical question of this technology.

  • albigu@lemmygrad.ml
    link
    fedilink
    arrow-up
    4
    ·
    10 months ago

    Commenting again just to say I hate how medical science reporting often doesn’t even cite the name of the researchers. Not only is this very disrespectful towards the people who put in a lot of work into the research (and usually even publishing their results for the world to see), but it also makes it incredibly hard to verify the facts of the story.

    Naming them only as “Chinese scientists” is just insulting. And now all search results have been poisoned by people only citing what’s in the SCMP article.

    • this is true for so many fields, in both science and art, the mass of people doing the bulk of the work get no recognition 😐


      also

      Li Dali, a professor of Life Sciences at East China Normal University, who is not an author on the paper […]

      Researcher Chen Jin and his student Zhu Junjie at ShanghaiTech University, who are not authors on the paper […]