• zifnab25 [he/him, any]@hexbear.net
    link
    fedilink
    English
    arrow-up
    19
    arrow-down
    1
    ·
    edit-2
    11 months ago

    I mean, like lots of scientific news stories, this is a bit… thin. “We solved it in mice!” is a headline we get for virtually every ailment imaginable and rarely results in a human-ready treatment in the immediate future.

    Past that, I don’t think there’s anything you can do to “eliminate neurodivergence” shy of intensive eugenics. There are definitely more sever instances of autistic symptoms and behaviors that undermine quality of life - sever speech impediments, pronounced OCD, epilepsy - that I don’t think you can just condone in the name of diversity. If these symptoms can be treated, you’re in a position to preserve neurodivergence by mitigating their worst manifestations rather than eliminating it.

    But gene editing is a dicey business for a whole host of reasons. This has all the hallmarks of a Trolley Problem dilemma, as there’s going to be a real human cost to testing and mainstreaming a treatment that as the potential to make radical changes to the human genome. But it also has the potential to benefit an enormous number of people suffering from a debilitating condition.

    So much of the ethics will be bound up in the execution. When and how the treatment is administered, how the various conditions are diagnosed, whether we treat autistic tendency as a real quality-of-life affair or a purely cosmetic condition, whether it is something made generally available or paywalled behind for-profit bureaucracy…

    But the idea that we’re just going to eliminate a general form of neurodivergence with a simple jab… That’s more fantasy than reality.

    • SILLY BEAN@lemmygrad.ml
      link
      fedilink
      English
      arrow-up
      18
      ·
      11 months ago

      It is very much a ‘we did it in mice!’ thing

      they changed some mice genes, saw that they had ASD like symptoms, and reversed that. that might not even be all that doable in humans. first of all we have a lot of genes in human associated with autism. then we have the question of whenever gen editing could reverse structural differences in an already developed brain. Then there is the problem of side effects.

      and than ethics and the little thing that many ASD people would rather not ‘cure’ autism. Like making some of the negative things go away or reduce would be nice (for example sensitivity to light), but ‘curing’ autism as a whole? nah, thanks i prefer to be me

      • redtea@lemmygrad.ml
        link
        fedilink
        arrow-up
        4
        ·
        11 months ago

        The mice thing is interesting because they’ve been doing this for a while. There’s an infection they give to pregnant mice that makes the babies display something like ASD. They’ve treated those symptoms before with a probiotic bacteria. The ‘autistic’ mice stopped doing things like persistently burying marbles but they still ignored other mice. Unsure if this latest thing is similar.

      • zifnab25 [he/him, any]@hexbear.net
        link
        fedilink
        English
        arrow-up
        6
        arrow-down
        7
        ·
        11 months ago

        and than ethics and the little thing that many ASD people would rather not ‘cure’ autism.

        Again, this goes back to the degree of symptoms. Vanishingly few people are on a crusade to defend epilepsy. But that’s also a minority of cases, so we get back into the ethics of “who do we treat and when”.

        I would say I’m far less worried about a small pox style campaign of eradication than I am of an institutional gatekeeping, in which one section of the population has full normal access to preventative care while another is denigrated as “naturally autistic” and subjected to all sorts of hostile policing and social policies as a result. Factor in how Vitamin D deficiency in both pregnant mothers and young children is tied back to higher instances of autism, and you’re looking at a whole bunch of knock-on effects that amount to people living in closed off environments having higher treatment needs. As climate change renders outdoor activities more dangerous… well… you can see how folks sheltering underground in air conditioned environments are in a real tight spot.

        nah, thanks i prefer to be me

        I’m not sure I’d conflate autism with identity. That’s overly genetic-essentialist.

        • SILLY BEAN@lemmygrad.ml
          link
          fedilink
          English
          arrow-up
          16
          ·
          edit-2
          11 months ago

          I’m not sure I’d conflate autism with identity. That’s overly genetic-essentialist.

          ehhh what? being autistic is a really major part of my experience as a human you know? have you talked to an autistic person before?

          Factor in how Vitamin D deficiency

          vitamin d supplements are thing you know? a thing that in the scenario you describe would be necessary anyways

          a crusade to defend epilepsy

          comparing autism and epilepsy is insane. one of them causes you to get a seizure and literally die if you are unlucky. the other doesn’t

          • zifnab25 [he/him, any]@hexbear.net
            link
            fedilink
            English
            arrow-up
            5
            arrow-down
            7
            ·
            11 months ago

            being autistic is a really major part of my experience as a human you know? have you talked to an autistic person before?

            Yes. But then I’ve also been told I’m mildly autistic myself. I don’t know if that’s true, but I also don’t know how to describe “being autistic” verses “not being autistic” when I only have my own frame of reference. What’s more, I wouldn’t assign my the majority of my behavior, attitude, and temperament to genetics. A big part of it is my upbringing and another big part is my immediate environment. I’d definitely be a different person without my OCD-ish tendency, but I don’t think I would be somehow deprived or removed if I’d ended up differently.

            vitamin d supplements are thing you know?

            A thing that achieves more innately what these scientists are attempting to engineer. But the end state is (intended to be) the same. Should pregnant women with low exposure to sunlight be prescribed/forbidden Vitamin D supplements in the name of neurodiversity? Or is this specifically proposed treatment a problem because of some objection to methodology?

            comparing autism and epilepsy is insane

            There are plenty of syndromes that exhibit both as symptoms. And, in this particular course of treatment, it appears the goal is to eliminate the symptoms by treating the underlying genetic conditions.

            • SILLY BEAN@lemmygrad.ml
              link
              fedilink
              arrow-up
              9
              ·
              11 months ago

              assign my the majority of my behavior, attitude, and temperament to genetics

              this is the weird thing you do lmao pretending like it is all genetics is fucking insane in the first place.

              low vitamin d is a sickness by itself, as it for example causes depression and malfunctions in the immune system. It is quite a difference to cure people who are just autistic then to treat something that might increase the rate of autism in children. It’s not like vitamin d is the all cause of autism you know? and the end state is not the same. treating a malnutrition issue is different from removing a part of natural human variation, even if that malnutrition issue caused a intensification of that variation. Autism is for most of us simply not a disease to be treated, but a totally normal way for a person to be. It’s like trying to use gen therapy to ‘cure’ trans people. Or use it to remove black people.

              There are plenty of syndromes that exhibit both as symptoms

              autism as a symptom of a syndrome? are you okay? do you know what these words mean? this is barley a sentence

              • GarbageShoot [he/him]@hexbear.net
                link
                fedilink
                English
                arrow-up
                8
                arrow-down
                1
                ·
                11 months ago

                natural human variation

                Spinabifida is part of natural human variation. ALS is part of natural human variation. Cleft palates are part of natural human variation.

                Many aspects of autism are simply lateral differences to NT people that society, in its inadequacy and bigotry, fails to account for, but being “natural” cannot suffice to establish something is “not bad”.

              • zifnab25 [he/him, any]@hexbear.net
                link
                fedilink
                English
                arrow-up
                6
                arrow-down
                2
                ·
                11 months ago

                pretending like it is all genetics is fucking insane

                The treatment is explicitly stated as gene therapy.

                low vitamin d is a sickness by itself, as it for example causes depression and malfunctions in the immune system. It is quite a difference to cure people who are just autistic then to treat something that might increase the rate of autism in children.

                Vitamin D deficiency results in the gene-writing anomaly that the proposed treatment is also correcting for. The difference is, firstly, the stage of development when you intercede to make a correction and, secondly, the anticipated success rate of the intervention.

                treating a malnutrition issue is different from removing a part of natural human variation

                But that’s just it. Malnutrition in pregnant adults is well-established as a casual factor in reduced cognitive function in children. Human variation is a consequence of environmental factors in pre-natal and early development. You aren’t just a product of your parents, you’re a product of your material conditions during the period of gestation.

                Should physicians refuse to intervene after a child is born, because of variations caused in their mother during the period of pregnancy?

                autism as a symptom of a syndrome?

                Rett syndrome is an example of a syndrome that results in the patient’s behavioral characteristics meeting the definition of autism.

                this is barley a sentence

                Apologies if I no make words good. Me try better harder next time.

            • albigu@lemmygrad.ml
              link
              fedilink
              arrow-up
              6
              ·
              11 months ago

              What’s more, I wouldn’t assign my the majority of my behavior, attitude, and temperament to genetics. A big part of it is my upbringing and another big part is my immediate environment.

              This might be the bit causing confusion, they (and also a lot of autisc people including me) assign a lot of who they are to how they perceive and engage with reality. Autistic people usually have different cognitive functioning, and at that point genetics is just a distant cause at best.

              “Curing” autism would mean somehow changing that functioning to a neurotypical one, and that would definitely impact somebody’s identity or behaviour. Also autism is often termed a “behavioural disorder”, so if people are claiming to “cure” autism they most likely mean the behaviours go along with it.

              There are plenty of syndromes that exhibit both as symptoms.

              This might be just a mistake, but autism is not a symptom and even then the thing there isn’t being advertised as a “tactile hypersensitivity jab” or something like that. Autism is at worst called a spectrum “disorder” with an assortment of “symptoms” in common

              Epilepsy on the other hand is indeed a disease. Lot’s of people (like me!) are really fine with staying autistic for the rest of their lives, and would much prefer research be directed at accommodating autistic people. On the other hand I think you’d struggle to find people who are glad to keep their epilepsy.

              • zifnab25 [he/him, any]@hexbear.net
                link
                fedilink
                English
                arrow-up
                2
                arrow-down
                6
                ·
                11 months ago

                a lot of who they are to how they perceive and engage with reality

                But that isn’t just genetic. Two color-blind people can have very different aesthetic tastes despite both “seeing” the same spectrum of color.

                “Curing” autism would mean somehow changing that functioning to a neurotypical one

                In this case, the “cure” appears to involve treating secondary symptoms that are far more sever than simple perception. And, again, in mice. This is miles away from a holistic rewriting of consciousness to be neurotypical.

                autism is not a symptom

                It is diagnosed through its symptoms.

                Epilepsy on the other hand is indeed a disease.

                Its a disorder that’s diagnosed by a particular brain disorder. And conditions within the brain can produce both epilepsy and autistic symptoms.

                • albigu@lemmygrad.ml
                  link
                  fedilink
                  arrow-up
                  3
                  ·
                  11 months ago

                  But that isn’t just genetic. Two color-blind people can have very different aesthetic tastes despite both “seeing” the same spectrum of color.

                  Another bad equivalence, colourblind people clearly have “less” vision in that they see less information. Autistic people usually have “different” cognitive functions in a way that’s hard to even describe in text to a neurotypical person.

                  But even then it doesn’t matter whether the neurodivergence is genetic or not, it has obvious and direct impact in how people see reality and themselves.

                  And if this is advertised as an “anti-autism jab” treatment rather than say a “social anxiety” one, I hope you’ll forgive me for disliking the obvious ableist implication that “curing” autism is desirable, even if it could be optimistically interpreted as “alleviating common autistic issues”.

                  This is miles away from a holistic rewriting of consciousness to be neurotypical.

                  That is still the end goal of organisations like Autism Speaks and I’d rather actual sane people were more careful when talking about the medicalisation of neurodivergence. We live in a world where it’s not even that hard to find stories about autistic people who basically grew up locked in medical institutions being put on all sorts of treatments because this is how our current systems treat neurodivergence. So we can’t pretend that “voluntary” will actually mean “voluntary” when push comes to shove.

                  It is diagnosed through its symptoms.

                  And conditions within the brain can produce both epilepsy and autistic symptoms.

                  It’s still not a symptom so “sharing symptoms” is a moot point. Some people with brain tumours experience sensory hypersensitivity, but that doesn’t mean it’s that related to autism (besides being neurological) or that some kind of autism cure will have any use for that. It’s not even clear from the article if their treatment is directed at “symptoms” or just behaviour.

                  • zifnab25 [he/him, any]@hexbear.net
                    link
                    fedilink
                    English
                    arrow-up
                    3
                    arrow-down
                    2
                    ·
                    edit-2
                    11 months ago

                    colourblind people clearly have “less” vision in that they see less information. Autistic people usually have “different” cognitive functions in a way that’s hard to even describe in text to a neurotypical person.

                    I did not realize I was talking to a debate-bro. My apologies.

                    But even then it doesn’t matter whether the neurodivergence is genetic or not, it has obvious and direct impact in how people see reality and themselves.

                    There are plenty of conditions that change how people see reality that aren’t desirable.

                    I’d rather actual sane people were more careful when talking about the medicalisation of neurodivergence.

                    Are we going to medicalize the discussion of medicalization, then? You’re a champion of neurodivergence who casually dismisses an intervention by denouncing the researchers as “insane”? Dafuq?

                    It’s still not a symptom

                    It is diagnosed by its symptoms.

                    It’s not even clear from the article if their treatment is directed at “symptoms” or just behaviour.

                    The article specifically calls out sever conditions associated with autism that they were seeking to treat in mice.

    • JucheStalin@lemmygrad.ml
      link
      fedilink
      arrow-up
      1
      ·
      11 months ago

      I’m mostly concerned about intentions given that I too doubt the readiness of the science. Everyone already pounced on you for comparing epilepsy to autism, so I don’t need to go into how absurd that is. Like the others in this thread, I would have loved a reduction in some sensitivities, but I wouldn’t want to be neurotypical.

      • zifnab25 [he/him, any]@hexbear.net
        link
        fedilink
        English
        arrow-up
        2
        arrow-down
        1
        ·
        11 months ago

        I’m mostly concerned about intentions given that I too doubt the readiness of the science.

        Again, if its experiments on mice, I’m not holding my breath.

        Everyone already pounced on you for comparing epilepsy to autism

        Right, because they’re looking for something to pounce on. Even setting aside the ample medical evidence of comorbidity, literally just hang out with enough folks and you’ll see the trend.

        I would have loved a reduction in some sensitivities, but I wouldn’t want to be neurotypical.

        Reducing the sensitivity means approaching neurotypicality. These aren’t independent conditions.