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U.S. autism data project sparks uproar over ethics, privacy and intent

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Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#181
post #161

Earlier quoted context omitted.

>How does this context somehow exonerate him? You might not agree with his statement even with the full context, but at the very least it's a very different statement than the initial quote of "The fundamental weakness of Western civilization is empathy".

With the larger context of the quote it still seems like a distinction without a difference.

>distinction without a difference

There's a pretty big difference between "I think the west has too much empathy" and "The fundamental weakness of Western civilization is empathy", even if both are directionally anti-empathy. It's not any different than "I think the US's free speech regulations are too lax" and "The fundamental weakness of the US is free speech". Even though both are directionally anti-free speech, and a free speech opponent would object both premises, it would be wholly irresponsible to paint someone who wants hate speech laws passed as the latter, when their position is more accurately portrayed as the former.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#182

One thing this will do is disincentivize high functioning autists from identifying themselves as autists, which is a very good thing IMO. Just look at this channel https://www.youtube.com/@NationalAutisticSoc/videos . There is a lot of survivor-ship bias on this channel towards high functioning autists who can talk in front of a camera. Just to give an idea to those not familiar with the difference between high funct…

About a fourth of kids diagnosed with autism have IQ at 75 or below.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#183
post #164

Earlier quoted context omitted.

Hasn’t RFK Jr spent his entire life trying to find the cause and cure for autism? My life is pretty close to this community and I can verify that all of his comments are 100% accurate. Parents who insist on traveling separately as a safeguard to ensure one of them is able to care for their adult child in the event of an accident, living with the knowledge that both of them passing away will mean the child moves to a…

> Hasn’t RFK Jr spent his entire life trying to find the cause and cure for autism? Has he? That 'cure' part makes it pretty clear what his background with autism is. He has no clue about it. It's certainly not a disease nor a brain injury that can be cured. And it's too complex to be caused by something like a vaccine. All I see is that he has a particular disdain for autistic people and he wants to use autism to ta…

> I have investigated various matters throughout my career. That statement has all the symptoms of confirmation bias. The way to get an unbiased result is to do a large-scale, randomized (double-)blind study. You need quantified data, not emotional anecdotes. And if you have something specific in mind and the quantified info to back it up, then we can discuss. Otherwise, those assertions are moot. And for that matter, do you know that these symptoms are extremely hard to identify in infants? The timing of recognition of those symptoms is a rather unreliable indicator for anything.

If you have investigated then you already understand the biggest challenge to double blind studies here: control groups because of the variety of issues on the spectrum and the difficulty in measuring the severity of each of them. There’s a doctor in Indiana who’s been trying to categorize them all and has it narrowed to about 140 or so. It’s not an easy group to run studies on.

Autism is very much a digestive issue. People who just observe the behaviors without being close to treatment believe it’s purely neurological.

The core issue with everything you’re saying is that we have an information vacuum. With cancer, for example, we as a society are more than comfortable saying almost everything causes cancer. With autism, we’re not allowed to even speculate publicly. If we do it’s a simple “I don’t know what causes it but it’s DEFINITELY not the thing that I don’t want to believe is involved.”

Autism is a spectrum and there are a lot of severe cases. The severe cases often result in exactly what I’m describing above. Therapy helps in most cases but the experience described above is very real. In many cases it’s much less severe and kids are mainstreamed with some social awkwardness. The violent outbursts described in a scenario above, again, aren’t in most situations but they do happen consistently for some certain kids and when they do it’s a nightmare.

It’s not harmful to tell the truth, but it is to ignore it.

The problem with watching this discussion in real time on social media is seeing people who know one or two people who have a child who is autistic and that shapes their entire perspective. The parents who have children who are more severe on the spectrum often have very few people who know them because just the idea of time to socialize with others is often difficult to obtain.

The information vacuum is very real though and until we get a definitive answer on the cause of autism, people are going to speculate. You watch discussion of it be suppressed for over a decade and it creates trust issues.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#184
post #164

Earlier quoted context omitted.

Hasn’t RFK Jr spent his entire life trying to find the cause and cure for autism? My life is pretty close to this community and I can verify that all of his comments are 100% accurate. Parents who insist on traveling separately as a safeguard to ensure one of them is able to care for their adult child in the event of an accident, living with the knowledge that both of them passing away will mean the child moves to a…

> Hasn’t RFK Jr spent his entire life trying to find the cause and cure for autism? Has he? That 'cure' part makes it pretty clear what his background with autism is. He has no clue about it. It's certainly not a disease nor a brain injury that can be cured. And it's too complex to be caused by something like a vaccine. All I see is that he has a particular disdain for autistic people and he wants to use autism to ta…

That takedown was boss. Thank you. As a parent of two autistic children, and uncle to many more in my family, I can say that it is clear their minds develop differently, and many high-functioning autists successfully mask it and make it later in life. And these are quite often extremely gifted intellectually and academically, to the degree that while life is a struggle for them socially, they are far better than their 'norm' peers in other areas. I've not seen anything from RFK Jr beyond trying to support his anti-vaccine stance and what I would at best call evidence for 'othering' autistic people. And if he thinks he is going to make them victims, I can assure you he will find myself, my family, and the community at large ready and eager to destroy him. One could make a more coherent argument that we should create a database of those who lack empathy, the narcissistic sociopaths among us, and place them in camps and let them tear each other apart.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#185

If they come out with a list of twenty adjustments they're going to make based on the study (things like but not necessary including: banning certain fire retardents, attempt to reduce break/tire pollution, adjusting the timing of (but not eliminating) the vaccine schedule, banning specific food additives, reducing/modifying specific pesticide use) I will believe this is a legitimate and well intentioned effort from…

Why would a list of random "adjustments" lend legitimacy to their effort? If they told you that going barefoot and talking in Pig Latin would solve autism, would that give it legitimacy? Maybe soap is actually suppressing our natural bio-film so we should all forsake showering. I mean, someone could contrive a laughable explanation to justify that, and maybe make a graph that hygiene improvements worldwide correlated with the rise of ASD, so start stinkin' evenyone.

We know, with utter certainty, that the conclusion of this farce will be completely unproven lazy correlations that are so common in the scammer industry. Maybe it's seed oils, or HFCS, or the chemicals, etc. There is no outcome of RFK Jrs farce that won't be an absolute joke.

>The third reich response

Anyone who doesn't see incredible parallels with the rise of Hitler's heinous crimes is not paying attention. Oh look, they're going after the press and judges now, but don't worry until they're not suffixing the Hitler salutes with "my heart to yours" or something it surely can't be real. Further, the "they're going to make me believe this garbage person" argument is always laughable. No one buys it. People who like these creeps should just be honest about it and save the tired "you made me" bit that positively no one believes.

But sure, the only thing I can agree with you on is that the "autism is actually great" fringe is not helpful. Autism is not good, and most people with autism, even the ones who don't need around the clock care, would rather they didn't. ASD is likely basically a manifestation of evolution, and is biology playing random variations to test survivability, as it has done through human history. It gives us some super-intellectually focused individuals that contribute massively to humanity, but it also gives us a lot of very sad people who can't connect and sometimes need enormous levels of care.

Indeed, genetics are widely considered the prevalent "cause" of ASD. It's possible that autism really has become more common -- if it actually has and it isn't simply increased or more inclusive diagnoses -- because our information/engineering age has given people who carry ASD genetics more, errr, marketability on the reproduction market. Instead of being outcasts, what we used to call "Aspergers" sufferers, such as myself, suddenly make lots of money and get to be high status. But that's a lazy guess at most. But we do know that people on the ASD spectrum, including the most successful ones who found ways to make it work, are much more likely to have children on the spectrum, no outside environmental cause being necessary.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#186
post #132

Earlier quoted context omitted.

That quote was massively taken out of context. His argument was that the west has too much empathy, not that empathy is bad, period. He even specifically prefaced that with saying that empathy is a good thing.

Context: Musk: Yeah, [Gad Saad is] awesome, and he talks about, you know, basically suicidal empathy. Like, there's so much empathy that you actually suicide yourself. So, we've got civilizational suicidal empathy going on. And it's like, I believe in empathy, like, I think you should care about other people, but you need to have empathy for, for civilization as a whole, and not commit to a civilizational suicide. Ro…

It's a dog whistle for hyper-individualism, radical selfishness, violating Kantian ethics, and stepping over homeless people.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#187

Earlier quoted context omitted.

Why do you consider that a good thing?

If the public face of autism is someone who needs no support or accommodations and is in fact very successful - people will understandably be confused when someone with the same diagnosis needs substantial support.

In my opinion, people need to learn - and in many things, already know - that things have scale. For example, with "pain": a bruise, cavities in teeth, kidney stones, migraines all hurt, but the level of effect on someone's life is vastly different.

Also, people have no problem minimizing the things as well, where pain again is a good example. In many situations, if it cannot be seen, secondary parties easily disregard it.

So, in conclusion, this confusion with the autism levels should not be a problem.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#189

Earlier quoted context omitted.

It was notable that he started with "these people will never pay taxes" when announcing this.

*looks at Elon Musk* I suppose he has a point.

Half of that point occurred to me too. While I have not considered how much taxes Musk actually pays, I do remember this from my school history lessons 25 years ago: https://en.wikipedia.org/wiki/Röhm_scandal

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#190

Earlier quoted context omitted.

[flagged]

How does high functioning autistic people speaking up for the autistic community "pollute" the conversation? First of all, the reason this registry isn't going through is because autistic people who are functioning enough to speak out did so in solidarity with the entire autistic community. So far from polluting anything we are advocating for ourselves and our peers. Secondly, this "high functioning low functioning"…

It's cutting off one's nose to spite one's face. The societal damage that the anti-autism measures do are much, much greater and sinister than whatever the high-functioning autists could ever do.
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