RFK Jr. and NIH’s Autism Study Updates

On this page:

News Updates

Informative graphics and videos

Autism Advocacy Groups

Emails you can copy and paste to send to representatives and advocacy groups

Wilderwood Autism Evaluations
(A Private and Safe Way to Pursue an Autism Diagnosis)

Links and Resources for More Information

News Updates

April 24, 2025: HHS says they will not be creating an autism registry, contrary to NIH Director’s previous comments
April 24, 2025: STAT News first reports on HHS comment regarding no autism registry (behind a paywall)
April 25, 2025 ASAN (Autistic Self Advocacy Network) Statement
NEXT COUNCIL OF COUNCILS MEETING scheduled for May 29-30, 2025 | Will most likely be more updates given during this time

BY REQUEST — Here’s the definition of autism I used in one of the videos mentioned below:

Autism is a naturally occurring neurodevelopmental variation that affects how a person experiences and interacts with the world. It influences communication, sensory processing, social interaction, and patterns of thought and behavior. Autism exists across a wide spectrum, meaning each autistic person has a unique combination of strengths, challenges, and ways of processing information.

Rather than being a disorder to be "fixed," autism is increasingly understood as part of human neurodiversity—a term that recognizes neurological differences as valid and valuable forms of human diversity. Autistic people may use spoken language, alternative communication methods, or a mix of both. They may be highly sensitive to sensory input, have deep interests, and process emotions and relationships in ways that differ from non-autistic individuals.

Respectful support for autistic people centers on acceptance, accessibility, autonomy, and agency, not conformity. Inclusion means honoring each person’s way of being and ensuring they have the tools, environments, and relationships they need to thrive.

Videos

Click the above image to be directed to my full length video with the latest information on RFK Jr.’s Autism Study.

You can find a full transcript of this video here.

Click the above image to be directed to my full length video with specific ways you can protect your data and stay safe.

You can find a full transcript of this video here.

Click the above image to be directed to my full length video regarding an NIH update.

Click the above image to be directed to my full length video regarding an HHS update.

Click the above image to be directed to my video:

How to Stay Hopeful When the World Feels Out of Control

Autism Advocacy Organizations

Contact Your Representatives and Advocacy Groups

Use or adapt the scripts below in an email or phone call:

Find Your Representative

📧 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]

📧 Email to OARC (NIH Autism Office, The Office of Autism Research Coordination)

To: IACCPublicInquiries@mail.nih.gov

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]

📧 Email ASAN (Autistic Self Advocacy Network)

To: info@autisticadvocacy.org

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]