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.
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?
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.
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.
>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.
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).
I think there's some overlap in spirit between the autistic community and the deaf community (in so far as you can cast this wide a net and call it "a community") in that the reason some deaf people argue against a cure is that it would eliminate deaf culture (e.g. sign languages). There's no real equivalent in the form of "autistic culture" but this is at least in part because most autistics who are able to have learned to "mask" (i.e. try to hide their autistic traits often to the point where they forget they're doing so). There's still a specific way of thinking and form of humor that's shared by many autistic people and which they fear would be lost if they were "cured".
Additionally the deaf community has every reason to be skeptical of a cure because many so-called cures come with massive caveats. For example Cochlear implants are often seen as a magical cure for deafness but there are many reports from formerly deaf people of experiencing intense discomfort if they gain any meaningful hearing from them at all. But due to the existence of these "cures" non-deaf people are more likely to treat deafness as a choice and affordances for deaf people as unimportant - similar to how according to some studies bicyclists are treated with less care by drivers when visibly wearing helmets.
> 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.
I wonder what's appropriate "accommodation" for a very low functioning kid whose idea of a good time is banging their head against the wall over and over again. A padded room, most likely? Many "autistic rights" advocates simply ignore and dehumanize these kids.
The problem is that the way autistics are treated by non-autistics often involves an expectation to simply not be autistic. This includes behavioral therapy that in any other context would be described as torture. The stated goal is to reduce perceptible "symptoms", not to address whatever the person themself might find limiting to their wellbeing.
Autistic kids generally don't bang their heads against walls for "a good time". It's a form of stimming and it's intensified by certain situations or interactions. The desirable approach would not be to prevent the kid from stimming (which can cause them massive additional stress and even trauma) but instead offer them a safer alternative that is less likely to cause them injury.
But allistics (non-autistics) tend to be annoyed by autistics stimming at all, so often it comes down to whether autistics are able to "mask" and suppress their more obvious traits (even if it causes persistent stress) or not.
> Many "autistic rights" advocates simply ignore and dehumanize these kids.
Autistic rights advocates don't argue against medication or treatment for autistic individuals who want that. We advocate against a universalist approach that assumes that autism is fundamentally something to be avoided regardless of how high/low functioning the individual is, and independent of whether the difficulties for an individual are stemming from something inherent to the condition or whether they're coming from a lack of accommodation.
Many autistic people view the way they look at the world as a fundamental part of who they are. It is offensive to them to be told that they shouldn't exist.
Of course, more severe, low-functioning individuals can and often do disagree with that assessment of themselves, and that's fine, and those individuals should be given the help they want. But let's be honest here, nobody in the "autism speaks" branch of activism talks about a cure for specifically low-functioning autism; they talk about a cure for autism in general, they talk about eliminating autism from everyone across the board. And if you view autism as an inherent part of your personality, it's pretty understandable why you might start to suspect that those people are hostile to you as a person.
It's valid for autistic people to object to the characterization of autism as a universally negative condition that they just "don't have as bad". It's also valid to object to neurotypicals drawing the line between autism as an identity and autism as a debilitating condition based purely on what behaviors are inconvenient to those neurotypicals, rather than what the internal experiences are for autistic people themselves. Autistic rights advocates argue that autism can (and often is) a real disability with real negative effects, but also that a lack of accommodation can exasperate some of the negative effects of autism, and that it's important for society to think more critically about when and why these negative effects happen and how to best alleviate them. Autism rights advocates argue that inconvenience or incompatibility with existing neurotypical workflows are not universally reasons to call someone broken, even though functioning in a modern society might require interventions or medication to help manage those incompatibilities even in high-functioning individuals.
But of course we should try to help people with debilitating autism, and of course we should allow people who want to suppress or eliminate parts of that condition to do so. It's just that it's really messy to act like autistic people are secretly normal people who have some kind of disease that's keeping them from being normal. That "disease" can't be easily separated from identity.
Anti-autism is like arguing that because some people have PTSD or trauma or depression, that we need a universal cure for emotions, and that anyone who suggests "sometimes even inconvenient emotions are a good thing" is ignoring the entire gambit of suffering that emotions can cause. It's ridiculous.
Braille and wheelchairs are the equivalent of a cure for autism, as I envision it. Why do these not count as "avoid[ing] our shared responsibility of accommodating for differences, by erasing the differences"?
> They're not aborted to avoid accommodating, but to prevent suffering
You don't think people who want to "cure" autism are also motivated by this?
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.
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.
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.
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.
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.
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?
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.
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?