Скачать или смотреть What You Need to Know About the New Autism Data Registry (and How to Stay Safe)

🧠 Autism, Medical Data & RFK Jr.'s New Study — What You Need to Know

In this video, I speak directly to our autistic community about the new national autism data registry being developed by the NIH and HHS under Robert F. Kennedy Jr.’s leadership. With many of us feeling fearful, frustrated, or violated by the idea of our private medical records being collected and studied without our consent, I wanted to offer not just the facts—but also hopeful, tangible steps we can take together.

🛡️ This video is not meant to scare you, but to empower you. You are not alone, and there are actions we can take to protect our rights, build community, and hold institutions accountable.

‼️‼️‼️ PLEASE Scroll down for pre-drafted emails you can copy and paste to send to representatives/advocacy organizations. ⬇️

🔗 Quick Links & Resources
📄 Source Article on RFK Jr.'s Study: CBS News coverage
👉 https://www.cbsnews.com/news/rfk-jr-a...

📅 Council of Councils Meeting Agenda (April 21, 2025): https://dpcpsi.nih.gov/council/april-...

📣 Speak Up: Contact Your Representatives/Advocacy Organizations
Let your voice be heard. Use or adapt the scripts below in an email or phone call:

📧 Email ASAN (Autistic Self Advocacy Network)
To: [email protected]
Subject: Urgent: Support Needed on NIH Autism Data Registry

Dear ASAN team,
As an autistic individual, I’m deeply concerned about the new NIH autism data platform under RFK Jr. It plans to aggregate private medical data—including pharmacy, insurance, and wearable data—for research, with little mention of consent or autistic input.

ASAN’s leadership is crucial right now.

Will you speak out publicly about this?

Can you provide advocacy tools?

Is a coordinated response forming?

Your voice reminds us: nothing about us without us. Thank you for all you do.

Sincerely,
[Your Name]
[City/State, if comfortable]

📧 Email to OARC (NIH Autism Office, The Office of Autism Research Coordination)
To: [email protected]
Subject: Request for Transparency & Inclusion – NIH Autism Data Platform

Dear OARC Team,
As an autistic adult, I’m alarmed by the April 21st Council of Councils meeting discussion about the new data registry. Collecting and centralizing medical, genomic, and fitness tracker data raises urgent questions.

I urge NIH to:

Include autistic reps in researcher selection

Publish selection & oversight criteria

Clarify how consent and confidentiality will work

Collaborate with autistic-led orgs like ASAN

Autism research must happen with us, not just about us. Please prioritize transparency and respect.

Sincerely,
[Your Name]
[Optional: Pronouns, City/State]

Find Your Representative: https://www.house.gov/representatives...

📧 Email Your Representative

Subject: Protect Autistic Privacy in NIH Data Project

Dear [Representative's Name],
As a constituent and autistic individual, I’m concerned about the NIH’s new autism data registry, which may collect private medical, genomic, and wearable device data without clear consent.

I respectfully urge you to:

Support data privacy protections

Demand transparency about how this data will be used

Ensure autistic voices are included in the decision-making process

This initiative must prioritize ethics and inclusion. Thank you for your attention to this matter.

Sincerely,
[Your Name]
[City, State]

🤝 Organizations Doing Ethical, Autistic-Led Work
Support and learn from groups that uplift autistic voices and neurodivergent leadership:

ASAN (Autistic Self Advocacy Network)
👉 https://autisticadvocacy.org/

AASR (Academic Autism Spectrum Partnership in Research and Education)
👉 https://aaspire.org/

These orgs are fighting for transparency, inclusion, and consent in research that affects our community.

🌈 Final Thoughts
They can collect all the data they want—but they’ll never truly know what it’s like to be us. Our power is in our lived experience, our voices, and our community. Let’s keep each other informed, protected, and unapologetically ourselves.

💛 If this video helped you feel more informed or less alone, please share it. Your voice matters more than ever.

#Autism #Neurodiversity #NIH #RFKjr #DataPrivacy #DisabilityJustice #AutisticAdvocacy #ResearchEthics #MedicalPrivacy