Rejecting Disinformation, Reaffirming Our Community

Publish Date: May 1, 2025

Brenda Dater, MSW, MPH
AANE Executive Director

Health and Human Services Secretary Robert F. Kennedy Jr. and National Institutes of Health Director Jay Bhattacharya continue to make deeply troubling statements about autism. They misrepresent its prevalence, spread disinformation about its causes, propose harmful policies, and use dehumanizing language. 

They are deliberately sowing chaos. Chaos thrives in spaces of uncertainty. It deepens confusion, and makes it harder for worried individuals and families to find effective supports and trustworthy information. It puts us on constant high alert. With statements coming so fast and furious, each one often more outrageous than the last, our need to respond, reassure, and rebuild community demands immense energy — energy that should be spent supporting Autistic individuals, not defending against manufactured chaos.

Even in this moment, when nerves are frazzled and energy is depleted, our resolve is stronger than ever. Through coalitions and joint statements, we are uniting to fight back against disinformation and make it unmistakably clear: we refuse to be dragged backward into conspiracy theories that were discredited decades ago. In a landscape where autism organizations have diverse missions and perspectives, joint statements allow us to come together around a common truth: the rhetoric and actions coming from HHS endanger our entire community. Unity in the face of disinformation is not just powerful — it’s essential. 

Our organized condemnation, particularly against the proposed autism disease registry, appears to have helped prompt a walk-back of earlier pronouncements by the administration. While it’s impossible to credit any one action alone, the strength and speed of the community’s response clearly made an impact. We will remain vigilant and closely monitor any data collection efforts, especially given the lack of transparency and history of harmful rhetoric from this administration. Until there is clear information, enforceable standards, and demonstrated respect for Autistic people, we cannot trust that our communities’ data will be protected or used responsibly. 

Unfortunately, these initial announcements often come without enough detail to understand their true meaning or impact, creating confusion, fear, and instability within our community. When clarity is absent, anxiety fills the gap. That’s why standing together, refuting disinformation, asking clarifying questions, and demanding transparency matters so much.

At the core of all this disinformation and harmful rhetoric is a deep mental health toll on our community. Every reckless statement and vague announcement retraumatizes Autistic people, families, and allies who are already carrying so much. It reignites old fears, deepens anxiety, and leaves people feeling unsafe about their futures. It is heartbreaking to see our community forced to relive this pain again and again.

At AANE, we are working every day to support our community through this storm — offering trusted information, safe spaces to find community and connection, and a reminder that no matter how loud the disinformation becomes, we will not face it alone. Together, we are stronger, and together, we will keep moving forward.

With our responses, we strive to support the needs of the many constituencies of AANE. We speak first to the Autistic individuals, families, and professionals who trust AANE to stay focused on what matters most: helping Autistic people build meaningful, connected lives.

We also recognize that many outside our immediate community — including policymakers like Secretary Kennedy — rely on outdated ideas and discredited research. Some hear his rhetoric and believe it, without realizing the harm it causes. Part of our work is to meet misinformation with truth, education, and persistence.

Within the broader autism community, we know there are families supporting individuals with very high support needs — those who require 24/7 care and face challenges like self-injury. Their love, struggles, and hopes are real and deserve respect.

At the same time, Autistic self-advocates experience significant challenges too — from unemployment and underemployment, isolation and loneliness, and the lack of accessible mental health support.

The struggles are different, but none are less real. And none diminish the value of the people living them.

What unites us is stronger than what divides us: the belief that every Autistic person has worth, deserves support tailored to their needs, and should have the opportunity to live a connected, meaningful life.

At AANE, we stand for unity over division, for truth over rhetoric, and for building a future where every Autistic person can belong and thrive.