Reply to RFK Jr. wants a national autism registry

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[quote=Anonymous]The sad thing is a large scale, properly anonymized, ethically performed study of autism and other neurodiversities could really yield useful information that could allow for better screening, more appropriate, earlier interventions, better supports in schools, better supports transitioning to adulthood, etc.  Scandinavian countries and others  are way ahead of us other because they have centralized national medical information to guide best practices.

But the idea is now DOA for a generation because exactly no one trusts Elon, DOGE, RFK Jr or Trump to appropriately and ethically manage, safeguard and utilize this data.  Because they have proven they don’t take data safety and security, PII, PHI (Morals, ethics, compassion for fellow humans…) seriously.

A large scale study of neurodivergence is now politically toxic.  And I hate that. DH and I and both our kids are ADHD. And fighting for what even 2e kids needed to become successful adults was hard. Getting appropriate treatment was hard. Looking back I made mistakes because the information was all over the place. I had to guess a lot.  I can’t being to imagine dealing with doctors and schools and fighting for my kids if their neurodiversity had been more severe.

As a country, we need to be doing better on this. It’s a large percentage of kids who will succeed or fail based on us getting it right. And that takes data.  And ten years ago, I would have considered releasing my kids data in an anonymized way, in the hopes of saving other parents from the endless trial and error we went through. I would love to have better info on college supports.  (Or, you know, better supports). And transitioning to self supporting adults. We’ll get there. But it’s really hard.

Now, I would never share their data. Not now. Not in 2028– because it could be abused in 2032 or 2036. I thought the Trump era was over in 2020. Even if we turn the page in 2028, the cult is still there, waiting.  I’m a Fed, and I’ll never trust the government fully after the last 3 months. So much damage to our personal data in so little time.

I’m pissed at RFK Jr not because he’s doing it— he’s already had to walk the idea back. I’m pissed because he’s preventing it from being done well, ethically, scientifically, with data driven (rather than predetermined “it’s vaccines”) results.  And a generation of kids and their parents really need those results. 
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