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]