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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

#351

Post by theartfuldodger »

FireBeyond wrote: post #285
BenFranklin100 wrote: post #11

“Health and Human Services Secretary Robert F. Kennedy Jr., the nation’s top health official, repeatedly said before taking office that vaccines cause autism, despite overwhelming scientific evidence that they do not. He has declined to disavow his statements and has continued to promote a possible link.” Having worked directly with autism researchers, I can confidently tell you that RFK is making a wild guess not ba…

> Health and Human Services Secretary Robert F. Kennedy Jr., the nation’s top health official I just loooove that our "top health official" has absolutely zero medical or public heathcare education, openly believes and advocates for discredited and fraudulent medical perspectives and more. > RFK is genuinely a danger to health care in the United States. I could not agree with you more.

The head of most healthcare systems are administrators. An Environmental Lawyer with decades of experience suing corporations using science as evidence is one of the best matches we've had. Is he good? I dont know, but it is misperception and I think fairly illogical to expect an admin/leadership role to be done by a MD or research scientist. Not seeing many tech firms run by a lead developer either.

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

#352

Post by theartfuldodger »

asacrowflies wrote: post #230
Boogie_Man wrote: post #74

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…

Regardless of any so called good that could supposedly come of this..... Why does the federal government get to seize my medical records and data for this list without my consent??? Are autistic people not full citizens? What about rule of law??? If we can take such drastic measures and shit all over things like hippa and medical ethics....where is the sweeping federal database of obese people .

I know I have created a few dozen "registries" for research and stat analysis with my team. All data is depersonalized and HIPAA compliant. I dont understand how a generic statement made to the public becomes a recipe for the next reich. I get how the FB crowd would just go hyperbolic, would not have expected it here. Ive worked with medical, insurance, legal, banking and finance data for a decade. It would be easy to scare a normie by describing nearly any of those projects, but its the exact opposite, everything is done with a preponderance of caution to ensure privacy compliance.

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

#353

Post by dns_snek »

nailer wrote: post #348
ModernMech wrote: post #345

Earlier quoted context omitted.

Here's a video of Musk doing the same gesture as a group of avowed neo Nazis: https://www.fastcompany.com/91266228/musk-roman-salute-histo... That's a practiced and very intentional Nazi salute, don't tell me otherwise. He put his back foot into that. Like I said, if a person does that salute, Godwin goes out the window and it's time to presume they are a Nazi until proven otherwise. > Unless you think Tim Waltz, AOC…

[flagged]

Trying to equate any random hand gesture that just happens to have their arm extended at some point isn't fooling anyone, but it's a strong signal for your true feelings on the matter so I appreciate the time-saving part of it.

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

#354

Post by [deleted] »

llm_nerd wrote: post #185
Boogie_Man wrote: post #74

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…

[deleted]

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

#355

Post by tptacek »

rayiner wrote: post #304
boroboro4 wrote: post #301

Earlier quoted context omitted.

Some people considered being a jew abnormality and found their way to fix it. We're moving same direction, mostly by people wishing for a strong arm, and being consumed by hate. And it's definitely not empathy and compassion in play here.

> Some people considered being a jew abnormality and found their way to fix it. They were wrong. Does that mean that human developmental abnormalities don't exist and we shouldn't be looking for ways to prevent them? Of course not. I can't believe you're making me defend RFK, but characterizing this as being motivated by "hate" is completely absurd. RFK is a kook, but he's a kook motivated by compassion and empathy.…

He's a kook who claimed that COVID-19 was ethnically targeted to spare Ashkenazim. That's not a claim motivated by compassion and empathy.

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

#356

Post by ModernMech »

nailer wrote: post #347
ModernMech wrote: post #343

Earlier quoted context omitted.

So worse than seeing edited news, you're not even seeing the news at all.

No. I see so many cases of people falsely claiming people were kidnapped and didn’t violate the terms of their visas I see the pattern.

I guess you haven't seen this case then, although it's been all over the news and HN: https://en.wikipedia.org/wiki/Detention_of_Rümeysa_Öztürk

This kind of display terrorizing force directed at normal people for exercising their speech is exactly the kind of excessive force that autistic people are hypervigilant about. We can see they started doing this first to illegal immigrants, then they moved on to legal residents, then they moved to citizens like US citizen immigration attorneys and the us-born children of migrants. If this trajectory holds, they will eventually turn on actual US citizens as a whole.

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

#357

Post by ModernMech »

nailer wrote: post #346
ModernMech wrote: post #344

Earlier quoted context omitted.

How have I been uncivil to you? I have not called you names, nor have I engaged your arguments in bad faith, nor have I attacked your character, your reputation, nor impugned you in any way. I've done nothing but engage you civilly. And it is circular because you still haven't given a definition for "profound autism" -- all you have said is that "profound autism" is autism that profoundly disables a person. But what…

The lack of civility I feel is that you’re either not reading what I write before replying or not feeling the need to address the points in the comment you’re replying to. You’re right there is a spectrum of abilities and this changes over time. However we can define a threshold. I think a self-harming stim as an adult like head banging is sufficient to qualify as profound.

Not responding to all the points you raise is not an act of incivility. You've done the same (e.g. when you just responded "Godwin") -- you're psyching yourself out. I'm substantively responding to your posts, so it's up to you if you want to emphasize a specific argument that you feel I'm not picking up.

> However we can define a threshold. I think a self-harming stim as an adult like head banging is sufficient to qualify as profound.

Yeah I agree, we can define a threshold. Meaning someone has to determine where the line is, and so my question is still: where is that line? Who determines it and how? The answer is that there is no line and no one determines it, RFK is just using vague nebulous terms, which are not clear at all.

> I think a self-harming stim as an adult like head banging is sufficient to qualify as profound.

Lots of autistic people self-harm as a stim, through skin picking, scraping, pinching, cutting, hair pulling, etc. So if "self-harming as a stim is sufficient to qualify as profoundly autistic", then they can sweep up pretty much any autistic person.

And that's the problem when autistic people are cut out of the conversation entirely and painting autistic people with a broad brush as RFK is doing.

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

#358

Post by ModernMech »

nailer wrote: post #348
ModernMech wrote: post #345

Earlier quoted context omitted.

Here's a video of Musk doing the same gesture as a group of avowed neo Nazis: https://www.fastcompany.com/91266228/musk-roman-salute-histo... That's a practiced and very intentional Nazi salute, don't tell me otherwise. He put his back foot into that. Like I said, if a person does that salute, Godwin goes out the window and it's time to presume they are a Nazi until proven otherwise. > Unless you think Tim Waltz, AOC…

[flagged]

> Of course I do.

What I had said was "shows the same thing as the link I provided". In the link is a video of a neo nazi group doing a Nazi salute, which consists of two strokes:

1) hand on heart

2) thrust hand outward from body

Which is exactly the 1-2 gesture that Musk makes. Juxtaposing the neo Nazi group and Musk doing the salute at the same time makes clear just how similar they are.

As for your proof, what you have brought is as follows:

1) AOC waving her hand across her body three times. When juxtaposed next to the neo Nazis, it's clear what she is doing is not what they are doing.

2) Tim Walz pats his chest twice and then outstretches his hand in a wave. This again is not the 1-2 gesture heart->outstretch arm that the neo Nazis do.

3) A still of a man with his arm outstretched. Obviously not the 1-2 motion because there is no motion at all.

So far, you have no examples that demonstrate people doing the gesture that the neo Nazis are doing. Yet we do have a video of Musk doing the same gesture the neo Nazis are doing.

But fine, for the sake of argument, let's take the best example, Tim Walz, and just presume what he did is exactly a Nazi salute. What I had said was, now the presumption is Nazi until proven otherwise. So then let's look at both men and see if they exhibit other prevalent behaviors that Nazis exhibit.

What are Nazis best known for? Unbridled megalomania. Is Elon Musk a megalomaniac? Yes, he clearly is. He's quoted as saying empathy is a weakness. He's quoted saying if we want minerals there's nothing other countries can do to prevent us from orchestrating a coup to get them. His leadership style is decidedly authoritarian. Checking a lot of Nazi boxes.

Meanwhile Tim Walz is not a megalomaniac. He was democratically elected and follows the rule of law. He ran in a free and fair election, lost, and didn't foment an insurrection. He leads by example and building consensus rather than fiat and sheer force of will. Not a lot of Nazi behavior exhibited...

> But I bet you have already seen them and you just don’t care

Another wrong bet, I've seen everything under the sun and nothing yet has come close the what Musk is doing. That's because Musk is doing the real actual genuine thing, and these "gotchas" are people bending over backwards to try to normalize genuine Nazis.

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

#359

Post by ModernMech »

theartfuldodger wrote: post #350
cycrutchfield wrote: post #200

Earlier quoted context omitted.

It absolutely refuted every inane speculation you made. I understand you clearly aren’t here to listen or change your mind, so it unfortunately passed right over your head.

It didnt, It was a list of wishful thinking. I have more exposure to families with previously called "low functioning as it relates to children, and plenty of adults who are very capable and high functioning. What I do not see people willing to discuss Parent getting called to school 3-4x a week, causing issues with work Child running from school or aide and requiring a tracker program Police/CPS involvement from "ru…

It's interesting because that list you provide ("Parent getting called to school 3-4x a week" etc.) is a good summary of my household growing up. Me, my sister, and my father are neurodivergent and on the spectrum.

But we are people that others would not consider to be in the 25% RFK is referring to. Yet, at some point in our lives we were. Growing up I was less verbal than I am now, and I was often paired to play with other autistic kids who were totally non verbal and died early because of their autism. So I'm well aware of the extent of the spectrum.

So I agree with this:

> It is a disservice to all of those people to act as if the spectrum does not have a far range of activities.

However I find it is RFK and not the poster you are replying to who fails to recognize autism as a spectrum. Indeed, if you read the transcript of his speech he does not refer to autism as a spectrum until the end, when a reporter frames it in those terms as part of a question. Instead, he very clearly keeps referring to autism as a binary of "profound" versus I suppose "regular" autism, which is not at all how autistic people experience autism.

What RFK does is juxtapose debilitative autistic behavior (nonverbal) with very normal autistic behavior (toe walking) and he lumps it into a category he calls "profound autism" which is not recognized as a category of autism, nor is it precise or descriptive enough to have a clear meaning. I'm already in an argument with another poster about that, I don't want to open up another front on that issue, you can read my thoughts about that in my comment history.

> Its not RFK's words

For me, it is his words. I've read the transcript free of any media filtering and the actual words he uses are causing real damage to the autistic community.

> snipe hunt and that funding can just go towards creating spaces and education that allow for a range of interaction and social styles after September. But to ignore both sides of the experience is disingenuous

You frame their concerns as a "snipe hunt" -- the opposite of genuine; yet characterize refusing to entertain them as being disingenuous and a slap in the face of autistic people. I don't understand, wouldn't dragging autistic people into a farcical excuse to prove some nonsense about the food system be far more damaging to autistic people and their families? Why can't we just not do the snipe hunt and use the money right now for creating spaces and education?

> lazy characterizations that get slung around in all emotional spaces, he is mostly a careful speaker, especially compared to the norms now.

I think this is a lazy characterization because you don't support it with any evidence. In my post history I highlight several examples from the transcript in which RFK is not careful with his language, and instead paints autistic people with a broad brush and engages in strange conspiracy theorizing in his official capacity as HHS director. Again, this is free from any media bias as it is the direct transcript from this press conference.

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

#360

Post by nailer »

ModernMech wrote: post #357
nailer wrote: post #346

Earlier quoted context omitted.

The lack of civility I feel is that you’re either not reading what I write before replying or not feeling the need to address the points in the comment you’re replying to. You’re right there is a spectrum of abilities and this changes over time. However we can define a threshold. I think a self-harming stim as an adult like head banging is sufficient to qualify as profound.

Not responding to all the points you raise is not an act of incivility. You've done the same (e.g. when you just responded "Godwin") -- you're psyching yourself out. I'm substantively responding to your posts, so it's up to you if you want to emphasize a specific argument that you feel I'm not picking up. > However we can define a threshold. I think a self-harming stim as an adult like head banging is sufficient to q…

> The answer is that there is no line and no one determines it

Why is that the answer?

> So if "self-harming as a stim is sufficient to qualify as profoundly autistic", then they can sweep up pretty much any autistic person.

Disagree. I think your stats are off.

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