12 ms·

"If this were available tomorrow, safe for human applications and without any side-effects other than what it says on the tin: would any of you opt for this?"

"If this were available tomorrow, safe for human applications and without any side-effects other than what it says on the tin: would any of you opt for this?" This is sort of an unrealistic hypothetical that isn't really informative, IMO, for a few reasons mostly attributed to the spectrum of how autism manifests and also that I doubt there is any such thing as "without any side effects". I think what would be more informative is to ask- if they would be willing to undertake a treatment course for their autism what side effects would they be willing to bear and for how minimal of symptom relief would they be willing to bear for? EG. Let's say the Cripsr therapy works only on resolving sensory information issues doe to fixing the neurons capacity to process sensory input. In consequence, however, is that the person has a higher likelihood for seizures and, later on, parkinson's. Or, the Crispr therapy works only on resolving neurological pathway issues when it comes to emotional intelligence- the patient will still have to undergo intense occupational therapy in order to learn social skills- worth it? I don't know. I don't have autism. But I think these questions will provide much more insight.

ceejayoz 7y ago
I don't think that's fair. The hypothetical with no side effects or safety issues means we have to consider the ethical side of "should we 'cure' autism". We have to answer that before any discussion of "what level of side effects are acceptable". See, for example, the Deaf community's feelings on things like cochlear implants.
- scarby2 7y ago
  I'm not sure the deaf community's views on cochlear implants are entirely relevant here. There is no 'autistic culture' whereas there is very definitely deaf culture. Also we're not necessarily talking about a straightforward disability. If any of us were offered the ability to gan an extra useful sense then we'd probably take it... If we talk about something that profoundly changes our personality then maybe we'd be a little more hesitant.
  - ceejayoz 7y ago
    > There is no 'autistic culture' whereas there is very definitely deaf culture. There absolutely is. https://en.wikipedia.org/wiki/Autism_rights_movement https://en.wikipedia.org/wiki/Autism_rights_movement https://en.wikipedia.org/wiki/Autistic_Pride_Day https://en.wikipedia.org/wiki/Autistic_Pride_Day https://en.wikipedia.org/wiki/Autistic_Self_Advocacy_Network https://en.wikipedia.org/wiki/Autistic_Self_Advocacy_Network https://en.wikipedia.org/wiki/Controversies_in_autism#Pathology_paradigm https://en.wikipedia.org/wiki/Controversies_in_autism#Pathol...
- big_chungus 7y ago
  I've never understood why some deaf people feel so strongly about it. The fact that deafness is part of their identity doesn't mean they ought to go around telling others they shouldn't try to hear, especially not so vehemently. I'd consider it roughly equivalent to the really obnoxious fire-and-brimstone evangelicals that yell that you're going to hell if you don't convert. Why do people care so much what others do with their lives?
  - knicholes 7y ago
    Because if you're able to hear and they're not able to hear, it means they have a disability. They don't want to consider themselves disabled. I was a transcriptionist for a college when they held a deaf conference, and it was definitely this way. They were angry that they had to mark a disability to receive government assistance, because they felt as though they had no disabilities.
    - scarby2 7y ago
      I've never understood this isn't lacking an ability that 95% of the population have basically part of the very definition of disability. I lack fine motor control, I'm unable to write legibly with a pen, i have issues with spacial perception and regularly fall over pretty much anything, i struggle with any task that requires co-ordination (if you threw a ball at me i'd have maybe a 30% chance of catching it). I also don't have binocular vision (anything thats supposed to be 3d looks the same as the picture to me). Luckily in the age of technology i this has not impaired me significantly but i couldn't claim to not have any kind of disability...
    - big_chungus 7y ago
      I guess that makes sense, but it strikes me as awfully selfish to try to pressure someone into maintaining a poorer quality of life to fulfill one's own sense of identity. It doesn't say good things about those people, and I would have though they of all people would want the fewest people to suffer what they do.
      - 7y ago
- SolaceQuantum 7y ago
  Cochlear implants do have side effects health-wise and consequences, though. That's precisely what I was thinking of. They are very expensive, destroys any hearing the person may still have, can cause nerve damage, has questionable 'hearing' clarity... Asking a deaf person "would you cure your deafness if you could with no side effects" ignores the reality that current abilities to 'cure' deafness do come with significant side effects, and people who consider them need to also consider the pros and cons of undergoing the procedure. In contrary to 'stripping away info to dive into the ethics' you are trying to do, I believe you'll never approach the ethics without the nuances of the actual circumstances people are actually likely to be dealing with.
  - ceejayoz 7y ago
    Some in the Deaf community feel that even without side effects like that, that Deaf children should not receive them. That Deafness is not a disability, just a difference, and that "curing" it would be killing a culture much as raising Native American children in schools that banned their languages and culture did. "Should we do the procedure at all" comes before "are the side effects of a specific implementation of the procedure worth it".
    - chrisco255 7y ago
      Clearly it should be the choice of the individual (or parents) to receive treatment or not. Why is this even a debate. With any elective treatment, there isn't going to be 100% adoption.
      - vertex-four 7y ago
        No, it should not be the choice of the parents - the parents should not be able to force an unethical treatment onto their child. If this becomes a thing, why would society accept autistic people, rather than telling us to undergo treatment that we don't want to make us more like them?
        chrisco255 7y ago
- chr1 7y ago
  The Deaf community's feelings on things like cochlear implants is the perfect example showing that the whole "ethical side" is pointless philosophical babble. How can anyone even think to justify not allowing other people to improve their lives in the name of preserving "a culture"? The assumption that there are independent physical constraints and ethical side is wrong, because depending on how actually the reality works, the same action can be either the most ethical or most unethical action.
  - ceejayoz 7y ago
    > How can anyone even think to justify not allowing other people to improve their lives in the name of preserving "a culture"? That was the precise attitude that got us scenarios like https://en.wikipedia.org/wiki/American_Indian_boarding_schools https://en.wikipedia.org/wiki/American_Indian_boarding_schoo... and https://en.wikipedia.org/wiki/Stolen_Generations https://en.wikipedia.org/wiki/Stolen_Generations.
    - chr1 7y ago
      The important part in the argument above is allowing people to decide for themselves. The boarding schools were about government "saving" children by not allowing children and their parents to choose. The people who are unhappy about cochlear implants, want to "save" deaf culture by not allowing some other people to choose for themselves whether they want to be death or not. So the similarity is the other around.
- narrator 7y ago
  Being deaf or autistic is not a religion where apostasy is forbidden.

ceejayoz 7y ago

I don't think that's fair. The hypothetical with no side effects or safety issues means we have to consider the ethical side of "should we 'cure' autism". We have to answer that before any discussion of "what level of side effects are acceptable". See, for example, the Deaf community's feelings on things like cochlear implants.

scarby2 7y ago
I'm not sure the deaf community's views on cochlear implants are entirely relevant here. There is no 'autistic culture' whereas there is very definitely deaf culture. Also we're not necessarily talking about a straightforward disability. If any of us were offered the ability to gan an extra useful sense then we'd probably take it... If we talk about something that profoundly changes our personality then maybe we'd be a little more hesitant.
- ceejayoz 7y ago
  > There is no 'autistic culture' whereas there is very definitely deaf culture. There absolutely is. https://en.wikipedia.org/wiki/Autism_rights_movement https://en.wikipedia.org/wiki/Autism_rights_movement https://en.wikipedia.org/wiki/Autistic_Pride_Day https://en.wikipedia.org/wiki/Autistic_Pride_Day https://en.wikipedia.org/wiki/Autistic_Self_Advocacy_Network https://en.wikipedia.org/wiki/Autistic_Self_Advocacy_Network https://en.wikipedia.org/wiki/Controversies_in_autism#Pathology_paradigm https://en.wikipedia.org/wiki/Controversies_in_autism#Pathol...
big_chungus 7y ago
I've never understood why some deaf people feel so strongly about it. The fact that deafness is part of their identity doesn't mean they ought to go around telling others they shouldn't try to hear, especially not so vehemently. I'd consider it roughly equivalent to the really obnoxious fire-and-brimstone evangelicals that yell that you're going to hell if you don't convert. Why do people care so much what others do with their lives?
- knicholes 7y ago
  Because if you're able to hear and they're not able to hear, it means they have a disability. They don't want to consider themselves disabled. I was a transcriptionist for a college when they held a deaf conference, and it was definitely this way. They were angry that they had to mark a disability to receive government assistance, because they felt as though they had no disabilities.
  - scarby2 7y ago
    I've never understood this isn't lacking an ability that 95% of the population have basically part of the very definition of disability. I lack fine motor control, I'm unable to write legibly with a pen, i have issues with spacial perception and regularly fall over pretty much anything, i struggle with any task that requires co-ordination (if you threw a ball at me i'd have maybe a 30% chance of catching it). I also don't have binocular vision (anything thats supposed to be 3d looks the same as the picture to me). Luckily in the age of technology i this has not impaired me significantly but i couldn't claim to not have any kind of disability...
  - big_chungus 7y ago
    I guess that makes sense, but it strikes me as awfully selfish to try to pressure someone into maintaining a poorer quality of life to fulfill one's own sense of identity. It doesn't say good things about those people, and I would have though they of all people would want the fewest people to suffer what they do.
    - 7y ago
SolaceQuantum 7y ago
Cochlear implants do have side effects health-wise and consequences, though. That's precisely what I was thinking of. They are very expensive, destroys any hearing the person may still have, can cause nerve damage, has questionable 'hearing' clarity... Asking a deaf person "would you cure your deafness if you could with no side effects" ignores the reality that current abilities to 'cure' deafness do come with significant side effects, and people who consider them need to also consider the pros and cons of undergoing the procedure. In contrary to 'stripping away info to dive into the ethics' you are trying to do, I believe you'll never approach the ethics without the nuances of the actual circumstances people are actually likely to be dealing with.
- ceejayoz 7y ago
  Some in the Deaf community feel that even without side effects like that, that Deaf children should not receive them. That Deafness is not a disability, just a difference, and that "curing" it would be killing a culture much as raising Native American children in schools that banned their languages and culture did. "Should we do the procedure at all" comes before "are the side effects of a specific implementation of the procedure worth it".
  - chrisco255 7y ago
    Clearly it should be the choice of the individual (or parents) to receive treatment or not. Why is this even a debate. With any elective treatment, there isn't going to be 100% adoption.
    - vertex-four 7y ago
      No, it should not be the choice of the parents - the parents should not be able to force an unethical treatment onto their child. If this becomes a thing, why would society accept autistic people, rather than telling us to undergo treatment that we don't want to make us more like them?
      - chrisco255 7y ago
chr1 7y ago
The Deaf community's feelings on things like cochlear implants is the perfect example showing that the whole "ethical side" is pointless philosophical babble. How can anyone even think to justify not allowing other people to improve their lives in the name of preserving "a culture"? The assumption that there are independent physical constraints and ethical side is wrong, because depending on how actually the reality works, the same action can be either the most ethical or most unethical action.
- ceejayoz 7y ago
  > How can anyone even think to justify not allowing other people to improve their lives in the name of preserving "a culture"? That was the precise attitude that got us scenarios like https://en.wikipedia.org/wiki/American_Indian_boarding_schools https://en.wikipedia.org/wiki/American_Indian_boarding_schoo... and https://en.wikipedia.org/wiki/Stolen_Generations https://en.wikipedia.org/wiki/Stolen_Generations.
  - chr1 7y ago
    The important part in the argument above is allowing people to decide for themselves. The boarding schools were about government "saving" children by not allowing children and their parents to choose. The people who are unhappy about cochlear implants, want to "save" deaf culture by not allowing some other people to choose for themselves whether they want to be death or not. So the similarity is the other around.
narrator 7y ago
Being deaf or autistic is not a religion where apostasy is forbidden.