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Comment by KingMachiavelli | Hacker News Reader

Hmm, I'm not sure what the best solution is but having open, unrestricted access seems like the better solution.

> Concerns about the study include fears that its data could potentially be misused by other researchers seeking to ‘cure’ or eradicate ASD.

There is a fine line here. The average person would be better off not having ASD just like they would be better off not being 'deaf'. Unless you disagree which gets into a tricky area.

Leaving a person's abilities up to chance is arbitrary and doesn't solve anything. Unfortunately we can't let everyone decide for themselves since these decisions are done prior or soon after birth.

Restricting a parent's ability to decide the health of their offspring also seems more wrong until you realize a parent could decide to make their offspring deaf, blind, etc.

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So the problem is that too much people could be trying to help this people?

> a parent could decide to make their offspring deaf, blind, etc.

Not, they couldn't do it without a lot of external help. And then, everybody in that team would go to jail. Society shouldn't move following the insane outliers. This would be like saying that as a psycho could drive a car against somebody, we all should stay away from cars.

You don't really need a huge team to make a child blind or deaf. Just a pointy stick.

Exactly. But would it get to the point that not fixing/preventing deafness, blindness, ASD, etc. will also be impossible and/or socially stigmatized?

I don't think so. Most probably would end being a question of how much money you have. People that currently can't afford rock star level healthcare are not stigmatized for that.

It's called spectrum for a reason: not all forms are disadvantageous. You just incorrectly believe it has only one form that Hollywood likes to show.

"not all forms are disadvantageous" <- this! Some of the most talented and happy people I've ever worked with were "on the spectrum". Our society has a reflex to make everything different a disease instead of acknowledging and celebrating our differences.

Not having the ability to properly interact or socialize with people is a pretty significant handicap, IMHO. Sure, a person with ASD and a high intelligence can eventually find a place in society. It's the people with average intelligence and ASD that suffer.

I see your point. It's likely I'm only seeing the people who thrive. The problem is whose definition of "properly interact" are we going with? In my experience people on the spectrum tend towards extreme honesty. What they often aren't good at is understanding all the lies, half truths and hints that are part of socializing... in part to protect the brittle egos most of the rest of us have.

Social awkwardness is a component of ASD, and can be a huge burden for people with it. It really doesn't matter whose definition we go with for what constitutes "proper interactions." Clinically speaking, ASD can cause people to have a difficult time with verbal communication in general, and reading cues of people. This goes far beyond just being too honest.

The inability to make friends due to the behavioral issues that arise from living with ASD is torturous. It's probably why ASD is also linked with depression. If I weren't intelligent enough to work a technical job where people don't need to interact me, I probably wouldn't be around today.

Well I am glad you are around :)

First you say that lack of friends is torturous, then you say lack of friends saved you. Which is it?

High intelligence is actually a handicap for friendship, and average intelligence is advantageous for friendship.

I think you're misunderstanding my statements. I said that being intelligent enough to work a job where I don't need to work with people saved me.

Unfortunately, I can a/b test with my sibling to see how my life could have gone. :(

I understood it as not working with people (lack of friends) is torturous.

Do you mean socialization as an end goal? Autists don't have it as an end goal. A wolf doesn't suffer if it can't fly, the problem is simply not on the table in the first place.

Conversely don't neurotypicals have problem finding a place in this world and dealing with brute facts like materialism, physicalism, determinism and reality of death? How do they deal with living in an asocial indifferent mindless chunk of matter which is this universe?

That is quite a strong claim. Certainly we can see examples where ASD was/is not a disadvantage but can we generalize that to saying certain levels/locations on the spectrum are never disadvantageous?

Can we say that a particular type/kind/severity is not disadvantageous on average? But what if it has a higher variance in life/social outcomes (some people are considerably worse off but others are considerably better off compared to a non-ASD population).

Its quite complicated because if a condition is not debilitating then it is also less likely to be diagnosed which means they would be underrepresented in studies.

The big issue is that when you make statistical bets the medical POV is to aim for average, healthy, normative. Is it better to have a gene that has a 10% chance of increasing IQ but a 20% chance of having some mental disorder? It isn't fair to show examples of people that got 'both' without considering the people that only got the mental disorder.

Also, to be fair, it is a trope of any Hollywood serial TV show (House, CSI, etc.) that at least one episode depicts an ASD individual for whom it is either not a disadvantage or benefits them, etc. I wouldn't say these depictions are any closer to a real or respectful representation, However, I would say that there is just as much over-glamorizing of mental health conditions in the current year as there is stigmatizing which is detrimental to everyone.

>Leaving a person's abilities up to chance is arbitrary and doesn't solve anything

It solves the problem of fairly allocating traits which are important to have in a society, but for some reason are not preferred. Humans cannot be trusted with complete genetic control. An extreme example would be China's combination of highly sexist society and one-child policy leading to everyone wanting boys and not girls, leading to a demographic catastrophe. Imagine how much worse it would have been if parents could freely and reliably choose the sex of their offspring, instead of having to sneakily murder their infant daughters.

I think it's fine for parents to decide. If deaf parents want deaf kids and hearing parents want hearing kids those are both valid. Their kids their choice.

Hell no. You're telling me that it's in the domain of parents to knowingly cripple their kids sensory function? That's absurd.

Would you say people with a gene for deafness shouldn't be allowed to reproduce?

That would open a whole can of worms. What if some society says black skin is a disability so black people shouldn't be allowed to reproduce?

There's a clear line between stopping reproduction and intentionally inducing disabilities.

I'm going to put it another way. Does this really pass your own personal sanity check? That parents should be allowed to:

- Amputate their children's limbs (Various developmental defects

- Remove their children's eyes (Blindness)

- Perforate their children's eardrums (Deafness)

- Remove their tongue / vocal chords (Mutes)

- Paralyze their kids (Various forms of musculoskeletal issues)

- Inflict brain damage on their kids (various forms of intellectual disabilities)

Or remove their foreskins :')

There are medical reasons for the removal of foreskins such as phimosis [1]. Inasmuch as I would agree that religious justifications for circumcision are the ramblings of a cargo cult, circumcision itself was and is (for now at least) not without value.

[1] https://en.m.wikipedia.org/wiki/Phimosis

There also could be medical reasons for the removal of arms. That doesn't mean parents should be allowed to remove the arms of their children as they are born.

If there's a medical reason to amputate an arm and if it would be appropriate to attend to it immediately after birth so that no long-term complications arise from a delay in action, a parent should acquiesce to it. If parents shouldn't make that decision then who should?

That too.

I left it out intentionally as while I personally think it's in the same category, it's unfortunately sufficiently normalized as to pass without question.

No, but should a deaf woman be allowed to choose sperm from a deaf donor? That's actually happened, the baby was born deaf, and the mom was thrilled.

Fantastic grey area.

Here, I'd probably have that be legal. Not because I approve of it, but because the alternative, regulating who gets to reproduce, is worse.

I mean, we trust parents around kids and they can do all sorts of semi-permanent and permanent things to damage their kids. And then, this will shock you, but we just let those kids grow up and be around other people. If you really want a head trip, we let those kids have their own kids (after the age of 18). And raise them! If you've not read any stories of parents abusing their children, you really shouldn't, some of that shit is real nightmare fuel. That some well-loved children are hard of hearing after childhood? Real parents obviously don't bare their actual feelings to you. (I am not a parent. I am endlessly grateful to state run sex education for that. No offense to those that would choose that path for themselves but I definitely was not capable of making that decision at 13 or 15 or 18. Giving teenagers that choice is ludicrous but then again, I don't run that department of society.)

There's a difference between parents screwing up and giving them a blank check to cripple their kids. If my parents knowingly and intentionally crippled my sense of sight/hearing/touch/taste for the sake of crippling me, that goes far enough into "sufficient abuse" that retributive murder suddenly appears in my "appropriate response" options.

As for the existing cases of child abuse, we've already got things for that. We have anti-child abuse laws and their like. They're not perfect, but they denote a line of behavior beyond which is not tolerated.

If parents aren't allowed to harm kids after birth why should they be allowed harm their kids before birth... counter argument needs to be mind blowing and i'm all ears.

Well, or shift the overtones window leftward - if parents can do whatever they like beforehand, why not let them do whatever they like afterwards? If we trust both parents to know what's best in not getting blackout drunk before having the kid, then we should trust that the parents know what they're doing until the kid is 10, and not question anything the parents do until then (including, say, I don't know, chosen vaccination schedule)

> why not let them do whatever they like afterwards

It worked like that a few hundred thousand years ago and we seem to have mostly collectively decided as a species that this was not the way to go

Nope. Absolutely no. Mostly deaf person here. It is utter insanity to inflict this on a person, and so-called parents who do should be sterilized and imprisoned until the child becomes an adult. The child should then be allowed to choose whether their biological parents ever get to communicate with them as adults. You don't get to mutilate a child and continue to participate in raising that child, or produce any more.

Inflicting deafness is absolute, unmitigated cruelty. The so called "deaf culture" is a sick cult-like group with extremist memes that glorify a defect.

Deafness isn't a feature, it's a bug. It's a crippling disability, and destroys any chance at normal social interactions from birth, requiring significant extra effort by every individual in the deaf person's life to accommodate. It easily leads to depression, antisocial behavior, and other psychological issues.

Worst of all, it restricts the person from experiencing all of the music, conversation, nature and warning alerts and laughter and the vast beautiful landscape of sound there is to experience in the world.

Don't enable monsters by trying to be accepting of differences. It's not cosmetic or trivial or cultural, hearing is a fundamental feature of the human experience.

Agreed. Presumably the same logic applies to harming a child before birth as well.

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