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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

#81

Post by dns_snek »

crote wrote: post #76
AlecSchueler wrote: post #45

Earlier quoted context omitted.

None of those points are related to diagnostic criteria.

No, they are related to the pool of people being diagnosed. You're only getting a diagnosis if a) you have access to a psychiatrist and b) you are running into enough issues in your daily life to warrant having it looked into. Life has gotten a lot more complex over the past few decades, so people run into issues more often - and earlier in life. Someone who would've just been "a bit of a weird guy" 50 years ago is g…

Even 50 years ago they weren't just slightly odd people who were otherwise happy to exist in a simpler society. Those people ran into the same issues and turned to alcohol, drugs, and suicide. The only difference is that nobody understood why they were suffering.

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

#82

Post by K0nserv »

goku12 wrote: post #69
K0nserv wrote: post #52

Earlier quoted context omitted.

Already the US can serve as a good example when discussing the need for unbreakable cryptography and e2e systems. The current decline nicely illustrates how quickly you can go from "The police have legitimate needs to break encryption to find heinous criminals" to something far more dystopian.

No amount of crypto is going to protect you from this mess. Technical safeguards work as long as it is backed by the law and the constitution. But when they are suppressed, the people in power will just find someone smarter than you and bribe, gaslight, bully, blackmail or beat them into helping them compromise such safeguards. And not to mention the fact that they love playing hideous psyops games. This is a social…

> No amount of crypto is going to protect you from this mess. Technical safeguards work as long as it is backed by the law and the constitution. But when they are suppressed, the people in power will just find someone smarter than you and bribe, gaslight, bully, blackmail or beat them into helping them compromise such safeguards.

I don't agree. Having unbreakable crypto is the absence of a tool. My point is that a democratic government can create the tool with good intentions, but you are only one election and a few months of backsliding away from the tool being used for nefarious purposes. You are right that technical solutions are just band-aids, but if you never create the tool it cannot be abused by a new authoritarian government.

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

#83

Post by arcticfox »

gift link to a related NYT Opinion piece by an actual (very liberal) parent living this reality that may surprise some people

https://www.nytimes.com/2025/04/25/opinion/autism-rfk-parent...

As a very liberal parent of a profoundly autistic child, there has never been article I've related to more. The condescension of fellow liberals and advocates for level 1 autism for us, much of which is present in this thread already, is incredibly frustrating and in many ways harder to stomach than RFK Jr.

RFK Jr is at a minimum a misguided nutjob - but he's also the only one to ever recognize our plight on a national stage.

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

#84

Post by autoexec »

0x1ceb00da wrote: post #78

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…

activities that would result in "identifying themselves as autists" include: seeking a diagnosis in the first place, getting the help of a mental health professional, frequenting support groups and forums, and wearing a fitbit or smart watch.

It's really not a good thing when people, high functioning or not, are forced to choose between getting the help they need and being targeted by their government.

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

#85

Post by cruzcampo »

an0malous wrote: post #71
StefanBatory wrote: post #64

Earlier quoted context omitted.

"Do not commit the sin of empathy"

“The fundamental weakness of Western civilization is empathy” — Elon on Joe Rogan It’s a core tenant of this Curtis Yarvin / neo reactionary ideology that seems to be shared by a lot of VCs

[flagged]

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

#86

Post by computerthings »

austin-cheney wrote: post #47
cruzcampo wrote: post #44

[flagged]

What would you suggest Americans actually do? They voted this in knowing this would happen. It’s one thing to shout into a void about some vague disagreement, but it’s entirely different to actually take some form of real action. What should that action comprise?

[dead]

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

#87

Post by goku12 »

ohgr wrote: post #15

Aktion T4 next? This is a dark dark road. I suspect the US will become like Germany in the next few decades where the paranoia about handing any data over is justifiably high. I hope this burns the unethical side of the tech industry to the ground. It deserves it.

What makes you think this isn't it? I know that the primary reason for his fixation with autism is to attack vaccines. But have you listened to him talk about autistic people? It's pretty clear that he considers autistic individuals as unproductive (the tax remark) burden who destroys families. It's very clear that he considers them as subhuman. Sounds very close to 'life unworthy of life' argument made by the Nazis. While at it, the Nazis also had a register of disabled people and used the 'economic burden' argument to sell the idea of mass murder. Honestly, I'm struggling to find a difference here. To understand the full scale of the danger, this is how the Holocaust originated - with the murder of a single child in 1939 under their involuntary euthanasia program for disabled children. It gradually made the system comfortable with mass murder as the scope of the program expanded to teens, then adults and to whole races in the end. That's exactly what I see now as well - people tolerating more and more transgressions that would have been unthinkable just a year ago!

People sometimes tend to shutdown comparison of any situation with Nazism using the hideous Godwin's law. Apparently it's a sacrilege towards the Holocaust victims to compare their plight with any emerging threats. But there is no guarantee that the horrors of the past won't repeat in the future. In fact, that is one of the reasons we learn history - to recognize the repeating patterns of similar mistakes. And I think the situation is very perilous already. Perhaps I'm paranoid. But remember that people are arbitrarily getting deported to some foreign detention camp and judges are being arrested within 3 months of this regime coming into power. How long before we find ourselves haunted by the dreadful events of the past?

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

#88

Post by arcticfox »

perihelions wrote: post #57
cruzcampo wrote: post #44

[flagged]

I'll quote Kennedy's dehumanizing comments for context, that people can compare the two styles of rhetoric: - "Kennedy said many autistic children were “fully functional” and “regressed … into autism when they were 2 years old. And these are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a to…

He's specifically talking about nonverbal kids like mine. I'm sorry, it's a disability, and I'm terrified what's going to happen to my kid when I'm gone. I don't think RFK Jr's policies will help and I didn't vote for them. But the amount of frustration I have towards comments like yours that ignore our worlds is immense. At least RFK Jr speaks honestly and candidly.

The challenges a level 1 autistic person faces are well recognized and good for network TV. finally - finally! - someone is talking about the rest of the population that face far greater challenges.

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

#89

Post by tialaramex »

an0malous wrote: post #71
StefanBatory wrote: post #64

Earlier quoted context omitted.

"Do not commit the sin of empathy"

“The fundamental weakness of Western civilization is empathy” — Elon on Joe Rogan It’s a core tenant of this Curtis Yarvin / neo reactionary ideology that seems to be shared by a lot of VCs

The word you want is tenet

A tenant is somebody paying to lease property, for example if you have a landlord, you're their tenant, and by analogy e.g. an Azure tenant is an organisation within the Azure cloud with a unique identifier.

A tenet is a belief or principle that is important to some group, for example the IETF's Best Common Practice series are not just RFCs describing a protocol or technology but instead statements of principle such as BCP 188 "Pervasive Monitoring Is An Attack".

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

#90

Post by skippyboxedhero »

47282847 wrote: post #55

It’s interesting to muse about the larger picture here. What is it that makes autism so dangerous? To me it looks like part of an almost spiritual war against empathy/compassion by traumatized individuals trying to fight their own Jungian Shadow.

This is like saying what makes cerebal palsy so dangerous. Why is trying to find out causes so dangerous? The dangers of empiricism in the 21st century.

In the UK, there are regions where 50% of children born in the early 2000s have special needs, and more children than adults are claiming disability benefits. It is going to have a very big impact on the labour market when 20-30% of these cohorts cannot work and, therefore, need to obtain income support from everyone else.

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