35 votes

Robert F. Kennedy Jr. unveils US autism database project

14 comments

  1. [7]
    Raspcoffee
    Link
    Holy shit this is so scary - at the same time I'm so glad I don't live in the US right now, but I fear for so many people there right now. Especially when they're locking people up in...

    Holy shit this is so scary - at the same time I'm so glad I don't live in the US right now, but I fear for so many people there right now. Especially when they're locking people up in concentration camps already... This administration is continuing the trend of being almost comically evil.

    This is just one more policy that'll almost certainly cause some degree of deaths over innocent people. Unless civil unrest explodes before that.

    29 votes
    1. [3]
      tauon
      Link Parent
      Yeah, I’m pretty… speechless. Shocked but not necessarily surprised anymore, sadly. As a German citizen, this* is what I assume it might’ve felt like as a “normal” person watching events unfold...

      Yeah, I’m pretty… speechless. Shocked but not necessarily surprised anymore, sadly.

      As a German citizen, this* is what I assume it might’ve felt like as a “normal” person watching events unfold 90, 95 years ago with nobody doing anything until it’s far too late. History lessons tell you what happened, but not how it felt—we’re pretty powerless in this situation.

      *Well, this, and all the “concentrating imprisoned people in an abhorrent (foreign) prison place without due process” going on.

      26 votes
      1. Raspcoffee
        Link Parent
        That's pretty much how I've been feeling about the direction of the world since 2016: Brexit, Trump, AI, Corona... Some time ago I had a colleague, much older than me, who was surprised her...

        History lessons tell you what happened, but not how it felt.

        That's pretty much how I've been feeling about the direction of the world since 2016: Brexit, Trump, AI, Corona...

        Some time ago I had a colleague, much older than me, who was surprised her daughters had to learn about stuff like the fall of the Berlin Wall, and how in the future stuff like 9/11 would become taught in schools. And I was like 'yeah, well, that is what history is: what has happened'. In that sense, I do think I understood what history is better, but it is a very experience when the toxic darkness is creeping up in society.

        History is a story, until you live in it.

        14 votes
      2. sparksbet
        Link Parent
        As an immigrant in Germany who can't vote (yet, at least), please put those feelings into preventing this country from going down the same path. I think it'll take longer here, but if the CDU...

        As an immigrant in Germany who can't vote (yet, at least), please put those feelings into preventing this country from going down the same path. I think it'll take longer here, but if the CDU further breaches the great firewall with the AfD I'm scared we'll quickly follow suit here. The future is very scary atm.

        10 votes
    2. [3]
      redwall_hp
      Link Parent
      https://en.wikipedia.org/wiki/Aktion_T4 Same shit, different uniforms.

      https://en.wikipedia.org/wiki/Aktion_T4

      Same shit, different uniforms.

      15 votes
      1. [2]
        fefellama
        Link Parent
        Jesus Christ that's one of the most horrendous Wikipedia articles I've read in two decades of using the site. I was originally going to link something I read there and be like 'wow that's fucked',...

        Jesus Christ that's one of the most horrendous Wikipedia articles I've read in two decades of using the site. I was originally going to link something I read there and be like 'wow that's fucked', but then the more I read the worse it got. I'd have to quote basically the whole page to convey the parts I felt were fucked up.

        Awful stuff. Thank you* for informing me about it.

        * weird saying thank for for such a thing

        11 votes
        1. redwall_hp
          (edited )
          Link Parent
          Yeah, it's definitely weighty reading. I try to surface stuff like that when I can, because what most people know about the Holocaust is really only scratching the surface. Generalplan Ost (the...

          Yeah, it's definitely weighty reading. I try to surface stuff like that when I can, because what most people know about the Holocaust is really only scratching the surface.

          Generalplan Ost (the overall plan for Eastern Europe) is also horrific. It goes down to quotas for how many of each ethnicity to leave alive as a slave class, and which ones they wanted to fully murder.

          My grandparents and great-grandparents came to the US, from Poland and thereabouts, before all that happened, but it's all a bit too close to home.

          10 votes
  2. piedpiper
    Link
    The framing of autism as a disease is not just inaccurate, but harmful. I think the article does a poor job of correcting the ideas/sentiments they are quoting from RFK.

    The framing of autism as a disease is not just inaccurate, but harmful. I think the article does a poor job of correcting the ideas/sentiments they are quoting from RFK.

    17 votes
  3. [2]
    post_below
    Link
    So much crazy. If there's a silver lining, the crazier it is the more we'll see the world reject the far right as with Canada, Australia, Germany and even recently in Texas. On the topic, a...

    So much crazy. If there's a silver lining, the crazier it is the more we'll see the world reject the far right as with Canada, Australia, Germany and even recently in Texas.

    On the topic, a database of neurodivergent people is horrifying, however some key points from the article:

    The HHS initiative expands existing data partnerships between CMS and NIH, noted David Mandell, ScD, of the University of Pennsylvania School of Medicine in Philadelphia.
    "I've been using Medicaid data for 20 years to study the service experiences of autistic individuals. In fact, NIH and CMS have had a partnership in place for decades to do so," Mandell told MedPage Today. "Of course, that partnership can always be strengthened and we can make it easier for people to use these data, but this is not new."

    So this is an expansion rather than a new thing. At it's core, making this kind of data available for research isn't a bad thing:

    "If an ASD-specific database is prepared from CMS data sources and then made available to research -- with appropriate ethical approvals and qualifications -- it would accelerate and strengthen research opportunities," Buxbaum told MedPage Today.

    This is, of course, the wrong administration to do this, because this kind of data should be handled with careful consideration of privacy and bulletproof anonymization and they likely won't do that. Ethics aren't really their thing. Hopefully courts will be involved sooner rather than later.

    14 votes
    1. DefinitelyNotAFae
      Link Parent
      Plus it's being done under the leadership of a man that advocated camps to detox people with mental illness and who are neurodivergent from meds. So.... Fuck this.

      Plus it's being done under the leadership of a man that advocated camps to detox people with mental illness and who are neurodivergent from meds. So.... Fuck this.

      19 votes
  4. daychilde
    Link
    I'm having an increasingly shitty time right now on multiple fronts and this is definitely one of them. We're becoming more and more sure that my wife is AuDHD. And moderately suspicious that I...

    I'm having an increasingly shitty time right now on multiple fronts and this is definitely one of them. We're becoming more and more sure that my wife is AuDHD. And moderately suspicious that I might be as well.

    Fuck every last fucking thing about this timeline.

    Everything in my life has been going downhill for literal decades. Very slowly. And I've held on to the positive things all the way. But goddamn it if I'm not just fucking tired of the decay.

    My health is shit. My social life is null. My prospects are crap. In some ways I wish I could just give up and get it over with, but don't think I'm suicidal in any way because I'm not.

    I'm just tired, boss. So achingly fatigued.

    10 votes
  5. balooga
    Link
    My spouse and I were just having a conversation this evening about having one of our children evaluated for ASD. But because of this, we’re not going to now. This is what’s called a “chilling effect.”

    My spouse and I were just having a conversation this evening about having one of our children evaluated for ASD. But because of this, we’re not going to now.

    This is what’s called a “chilling effect.”

    7 votes
  6. Toric
    Link
    Well fuck. As somone with a recorded diagnosis who recently left the states, Im becoming increasingly glad I did, and increasingly reluctant to go back.

    Well fuck. As somone with a recorded diagnosis who recently left the states, Im becoming increasingly glad I did, and increasingly reluctant to go back.

    6 votes