9 ms·

Not GP, but I assume autistic people see the goal of a universal cure for autism (or even an accurate screening method for pregnancies) is the same as wiping ou

by hinoki 5y ago

Not GP, but I assume autistic people see the goal of a universal cure for autism (or even an accurate screening method for pregnancies) is the same as wiping out the existence of people like them.

erklik 5y ago
> universal cure for autism Would the same view apply to every disability? For example, screening for Down Syndrome largely results in abortion. Is that also eugenics? Or is it not the same since Autism isn't a genetic disorder?
- cameronh90 5y ago
  Some downs people/family also think the same about downs. Also deaf and others... Personally as an autist I wouldn't want to cure it for myself as it would be a large change in personality that I don't think I could integrate - but if I was to have kids, I'd rather they were "cured" of autism when young.
  - odessacubbage 5y ago
    i would gladly cease existing if it meant autism would also cease to exist. the second part is negotiable.
- DaedPsyker 5y ago
  In Northern Ireland there was a debate on that, a down syndrome activist had campaigned against it which was readily taken up by parties that had opposed abortion in the first place. I'm not sure if it passed fully or just the first stage but there was a bill introduced a ban on non-fatal disabilities.
  - gambiting 5y ago
    That's exactly what happened in Poland few months ago. Constitutional Court has outlawed all abortion based on fetal defects, no matter how severe, as a basic human rights issue. The only remaining allowed situations for abortions remaining in Poland are when the life of mother is in danger, or if the pregnancy is a result of rape - but there are forces working to get that second exemption removed as well and it's likely that it will go through our constitutional court.
- imtringued 5y ago
  Isn't down syndrome discrete? Either you have it or you don't. You create a test for it and then you screen based on the test. How does that work with a spectrum? Where is the cut off? What level is "dangerous"/"dysfunctional" enough to warrant an abortion?
- an_ko 5y ago
  The difference I see is whether the suffering they cause is avoidable. To my understanding, the argument made by autistic rights advocates is that people with the condition could usually live like anyone else, if society open-mindedly accommodated for them. This is already the norm for disabilities requiring e.g. braille or a wheelchair. Attempts to "cure autism" feel eugenics-ish because they're lazy intellectual shortcuts; avoid our shared responsibility of accommodating for differences, by erasing the differences. In contrast, the case for abortion of Down syndrome fetuses is that the condition necessarily comes with many "built in" physiological complications that current medicine can't fully manage, effectively guaranteeing some amount of suffering that ends in early death, no matter how well we accommodate for them. They're not aborted to avoid accommodating, but to prevent suffering.
  - MontyCarloHall 5y ago
    >This is already the norm for disabilities requiring e.g. braille or a wheelchair. I have never seen anyone argue against cures for blindness or physical impairment. Every visually/physically impaired person I know would be elated if their condition could be cured, and would have no issues with prenatal screening for their disabilities, if it were possible. The only disabled community I know of where a not insignificant fraction of people oppose curing their disability is the deaf community, and it is nonetheless an extremely controversial position to take.
    - noneeeed 5y ago
      I've always felt the defensiveness/unease from some in the deaf community is understandable, even if I think fitting kids with things like implants is a good idea. Being deaf, certainly up to the widespread use of the internet in the last couple of decades, meant that you were essentially cut off socially from mainstream society. The vast majority of hearing people have no interest in learning sign-language unless they are related to a deaf person. You are, in a sense, a perenial foreigner in your own land, surrounded by people who you cannot communicate freely with and never will be able to (unlike a migrant who can learn the language). So you form communities with other deaf people with who you can communicate freely. Deaf culture has become something more distinct than simply a community of people with a shared experience within a wider culture, it's much more isolated. Obviously hearing loss is on a spectrum, with varying levels of remediation available from aids and implants to lip-reading and speech training so the above is a generalisation. But especially for adults, things like implants are not a panacea, you don't suddenly hear perfectly. I have a friend who uses a combination of an implant and an aid, but talking with him still requires continuous extra thought and consideration to make sure he can follow me, and that I can understand his speech. A noisy pub or a free-flowing multi-person conversation with everyone butting in is still incredibly isolating for him. The internet has changed a lot of this from what I've been told, with so much culture being online and in text, deaf people are able to interract with hearing people much more often and freely (and on equal terms) far more often, even if they have many of the same issues IRL that they have always had. But the seperation remains, and it's mostly a result of the hearing world's almost total lack of consideration or effort to accomodate (see the absense of a sign-language interpreter for UK government announcements as an example).
- codr7 5y ago
  It's a spectrum that goes from simply different to disabled. The question in my mind is who is going to write all the software once we've cured all who could do it well.
  - hnbad 5y ago
    I'm yet to be convinced that there are niche experts in any field that aren't on the spectrum. Or even people consistently engaging in systems thinking. Yes, I'm half-joking. But it's funny how "special interests" are only seen as pathological if they can't be used to generate profit.
- hnbad 5y ago
  It's worth reading a bit into disability rights theory IMO. Many so-called disabilities only become disabilities when individuals are confronted with a lack of affordances. This isn't just about wheelchair ramps, even "able-bodied" people can be situationally disabled if the affordances they take for granted are taken away (a sighted person might be more "disabled" in a dark room than a blind person who knows how to solve problems without relying on sight). Autism is used to describe a vast swathe of "conditions" so it's hard to generalize but most autistics don't "feel" disabled except when interfacing with allistics (non-autistics). There are also studies indicating that allistics tend to react negatively (or even hostile) to autistics by default when the opposite is not true (nor between autistics). Organizations like Autism Speaks tend to pathologize autism as an "insufficiency" by focusing on how allistics tend to perceive "people with severe autism", e.g. mutism, "stereotypic behaviors", etc. But that's a very biased view even of the small subset of autistics it attempts to highlight. For example I find it hard to argue that "parallel play" is inferior to "cooperative play" except that autistics tend to enjoy whereas allistics tend to prefer the latter; or that "special interests" (say, trains) are a matter of concern while obsessing with socially accepted hobbies (like historic football matches) are somehow not. All that said, my country has banned a lot of early stage screening due to ethical concerns and while screenings for trisomy 21 aren't illegal (despite having very unreliable results btw) they're socially frowned upon by many people and rarely result in abortions. So yes, in my cultural context the general consensus seems to be that that could be considered a form of eugenics.
sokoloff 5y ago
It depends on how you see autism. If we develop a universal therapeutic cure for cancer, that would eliminate “people with cancer” but not by eliminating those people. Developing a pregnancy screening for “fetuses pre-disposed to cancer” may have an entirely different mechanism of reducing cancer and one that many people (myself included) would find far more troubling that the therapeutic cure above.
- MontyCarloHall 5y ago
  Why would you be troubled by this? Consider Li-Fraumeni syndrome (LFS), which is caused by germline loss of a specific tumor suppressor gene. People with LFS are basically guaranteed to develop cancer by age 60 (>90% chance), with a 50% risk of getting cancer by 40. There are many other similar hereditary genetic disorders, some of which are exceptionally awful and basically guarantee that one will develop childhood cancer (e.g. Turcot syndrome). I see absolutely no downside to prenatal testing for such horrible diseases, all of which have a clear-cut genetic basis. Nobody has issues with prenatal screening for Tay-Sachs disease; why should genetically unambiguous severe predisposition to cancer be any different?
  - sokoloff 5y ago
    Concrete example: Many people (about 1 in 400*) have BRAC1 or BRAC2 genetic markers that leave them with higher likelihood to develop certain cancers. I don't see that as justification for eliminating those gene lines from the human genetic diversity. We did prenatal testing. We didn't do it for no reason and there were test outcomes that would have led us to terminate the pregnancy. Elevated risk of breast cancer would not be among them. * - Among Ashkenazi, the rate is about 10 times higher.

by hinoki 5y ago

Not GP, but I assume autistic people see the goal of a universal cure for autism (or even an accurate screening method for pregnancies) is the same as wiping out the existence of people like them.

erklik 5y ago

> universal cure for autism Would the same view apply to every disability? For example, screening for Down Syndrome largely results in abortion. Is that also eugenics? Or is it not the same since Autism isn't a genetic disorder?

cameronh90 5y ago
Some downs people/family also think the same about downs. Also deaf and others... Personally as an autist I wouldn't want to cure it for myself as it would be a large change in personality that I don't think I could integrate - but if I was to have kids, I'd rather they were "cured" of autism when young.
- odessacubbage 5y ago
  i would gladly cease existing if it meant autism would also cease to exist. the second part is negotiable.
DaedPsyker 5y ago
In Northern Ireland there was a debate on that, a down syndrome activist had campaigned against it which was readily taken up by parties that had opposed abortion in the first place. I'm not sure if it passed fully or just the first stage but there was a bill introduced a ban on non-fatal disabilities.
- gambiting 5y ago
  That's exactly what happened in Poland few months ago. Constitutional Court has outlawed all abortion based on fetal defects, no matter how severe, as a basic human rights issue. The only remaining allowed situations for abortions remaining in Poland are when the life of mother is in danger, or if the pregnancy is a result of rape - but there are forces working to get that second exemption removed as well and it's likely that it will go through our constitutional court.
imtringued 5y ago
Isn't down syndrome discrete? Either you have it or you don't. You create a test for it and then you screen based on the test. How does that work with a spectrum? Where is the cut off? What level is "dangerous"/"dysfunctional" enough to warrant an abortion?
an_ko 5y ago
The difference I see is whether the suffering they cause is avoidable. To my understanding, the argument made by autistic rights advocates is that people with the condition could usually live like anyone else, if society open-mindedly accommodated for them. This is already the norm for disabilities requiring e.g. braille or a wheelchair. Attempts to "cure autism" feel eugenics-ish because they're lazy intellectual shortcuts; avoid our shared responsibility of accommodating for differences, by erasing the differences. In contrast, the case for abortion of Down syndrome fetuses is that the condition necessarily comes with many "built in" physiological complications that current medicine can't fully manage, effectively guaranteeing some amount of suffering that ends in early death, no matter how well we accommodate for them. They're not aborted to avoid accommodating, but to prevent suffering.
- MontyCarloHall 5y ago
  >This is already the norm for disabilities requiring e.g. braille or a wheelchair. I have never seen anyone argue against cures for blindness or physical impairment. Every visually/physically impaired person I know would be elated if their condition could be cured, and would have no issues with prenatal screening for their disabilities, if it were possible. The only disabled community I know of where a not insignificant fraction of people oppose curing their disability is the deaf community, and it is nonetheless an extremely controversial position to take.
  - noneeeed 5y ago
    I've always felt the defensiveness/unease from some in the deaf community is understandable, even if I think fitting kids with things like implants is a good idea. Being deaf, certainly up to the widespread use of the internet in the last couple of decades, meant that you were essentially cut off socially from mainstream society. The vast majority of hearing people have no interest in learning sign-language unless they are related to a deaf person. You are, in a sense, a perenial foreigner in your own land, surrounded by people who you cannot communicate freely with and never will be able to (unlike a migrant who can learn the language). So you form communities with other deaf people with who you can communicate freely. Deaf culture has become something more distinct than simply a community of people with a shared experience within a wider culture, it's much more isolated. Obviously hearing loss is on a spectrum, with varying levels of remediation available from aids and implants to lip-reading and speech training so the above is a generalisation. But especially for adults, things like implants are not a panacea, you don't suddenly hear perfectly. I have a friend who uses a combination of an implant and an aid, but talking with him still requires continuous extra thought and consideration to make sure he can follow me, and that I can understand his speech. A noisy pub or a free-flowing multi-person conversation with everyone butting in is still incredibly isolating for him. The internet has changed a lot of this from what I've been told, with so much culture being online and in text, deaf people are able to interract with hearing people much more often and freely (and on equal terms) far more often, even if they have many of the same issues IRL that they have always had. But the seperation remains, and it's mostly a result of the hearing world's almost total lack of consideration or effort to accomodate (see the absense of a sign-language interpreter for UK government announcements as an example).
codr7 5y ago
It's a spectrum that goes from simply different to disabled. The question in my mind is who is going to write all the software once we've cured all who could do it well.
- hnbad 5y ago
  I'm yet to be convinced that there are niche experts in any field that aren't on the spectrum. Or even people consistently engaging in systems thinking. Yes, I'm half-joking. But it's funny how "special interests" are only seen as pathological if they can't be used to generate profit.
hnbad 5y ago
It's worth reading a bit into disability rights theory IMO. Many so-called disabilities only become disabilities when individuals are confronted with a lack of affordances. This isn't just about wheelchair ramps, even "able-bodied" people can be situationally disabled if the affordances they take for granted are taken away (a sighted person might be more "disabled" in a dark room than a blind person who knows how to solve problems without relying on sight). Autism is used to describe a vast swathe of "conditions" so it's hard to generalize but most autistics don't "feel" disabled except when interfacing with allistics (non-autistics). There are also studies indicating that allistics tend to react negatively (or even hostile) to autistics by default when the opposite is not true (nor between autistics). Organizations like Autism Speaks tend to pathologize autism as an "insufficiency" by focusing on how allistics tend to perceive "people with severe autism", e.g. mutism, "stereotypic behaviors", etc. But that's a very biased view even of the small subset of autistics it attempts to highlight. For example I find it hard to argue that "parallel play" is inferior to "cooperative play" except that autistics tend to enjoy whereas allistics tend to prefer the latter; or that "special interests" (say, trains) are a matter of concern while obsessing with socially accepted hobbies (like historic football matches) are somehow not. All that said, my country has banned a lot of early stage screening due to ethical concerns and while screenings for trisomy 21 aren't illegal (despite having very unreliable results btw) they're socially frowned upon by many people and rarely result in abortions. So yes, in my cultural context the general consensus seems to be that that could be considered a form of eugenics.

sokoloff 5y ago

It depends on how you see autism. If we develop a universal therapeutic cure for cancer, that would eliminate “people with cancer” but not by eliminating those people. Developing a pregnancy screening for “fetuses pre-disposed to cancer” may have an entirely different mechanism of reducing cancer and one that many people (myself included) would find far more troubling that the therapeutic cure above.

MontyCarloHall 5y ago
Why would you be troubled by this? Consider Li-Fraumeni syndrome (LFS), which is caused by germline loss of a specific tumor suppressor gene. People with LFS are basically guaranteed to develop cancer by age 60 (>90% chance), with a 50% risk of getting cancer by 40. There are many other similar hereditary genetic disorders, some of which are exceptionally awful and basically guarantee that one will develop childhood cancer (e.g. Turcot syndrome). I see absolutely no downside to prenatal testing for such horrible diseases, all of which have a clear-cut genetic basis. Nobody has issues with prenatal screening for Tay-Sachs disease; why should genetically unambiguous severe predisposition to cancer be any different?
- sokoloff 5y ago
  Concrete example: Many people (about 1 in 400*) have BRAC1 or BRAC2 genetic markers that leave them with higher likelihood to develop certain cancers. I don't see that as justification for eliminating those gene lines from the human genetic diversity. We did prenatal testing. We didn't do it for no reason and there were test outcomes that would have led us to terminate the pregnancy. Elevated risk of breast cancer would not be among them. * - Among Ashkenazi, the rate is about 10 times higher.