Autism Advocates Mobilize Against Misinformation Under New HHS Secretary
autism advocacy groups are actively working to counter what they describe as a surge of misinformation regarding vaccines and autism, notably following the confirmation of Xavier Becerra as Health and Human Services (HHS) Secretary and the subsequent actions taken during and after the Trump administration. Advocates express concern over Becerra’s past statements and actions, and are working to maintain access to policymakers and promote accurate details.
One organization, the Autism Society of Greater New Orleans, has seen positive results from practical support initiatives.According to Executive Director Claire Tibbetts, ”People told us that the kits completely changed their experiences with vaccines,” with both children and adults with autism experiencing “less fear and anxiety around the physical experience of getting vaccines.”
However, advocates are increasingly focused on systemic issues. A significant barrier to care is the lengthy wait time for an autism diagnosis,particularly for those on Medicaid in areas like Greater New Orleans,where patients currently face a two-year wait due to a shortage of providers accepting Medicaid for testing. This delay is far longer than the national average of approximately three months to schedule an appointment, a timeframe advocates and medical professionals still consider too extensive. Without a formal diagnosis, autistic individuals are unable to access crucial developmental disability services, including in-home support, childcare, and respite care.
Advocates are responding by increasing pressure on elected officials,with some calling for Becerra’s removal. This push comes after a period of regular dialogue with the health department during both the Trump and Biden administrations was disrupted in January when Trump appointees laid off thousands of staffers at the agency, effectively silencing advocates’ voices.
“We have requested meetings with HHS staff and hope we can get those meetings so that we can engage directly with people both at the NIH and CDC about the vaccine question and other questions pertaining to responsible autism research,” stated Jill Escher, president of the National Council on Severe Autism.
Other advocates are taking their message directly to Capitol Hill. Tonya Haynes of Autism Speaks regularly accompanies her 25-year-old autistic son, Tyler, to deliver speeches about his prosperous experience graduating college and securing employment. Haynes emphasized the power of personal connection, stating, “It’s one thing to read about Tyler’s story or to be told about tyler’s story, but when individuals are able to see Tyler in person, the impact is instant.”
The situation was further complicated by a pledge made to Senator Bill Cassidy (R-LA) during becerra’s confirmation process. To secure Cassidy’s deciding vote, Becerra agreed to maintain the CDC webpage explicitly stating that vaccines do not cause autism. However, advocates are now expressing concern that this promise has been broken. While Senator Cassidy has expressed shock, he has so far refrained from directly challenging Becerra.
Tibbetts and her team are continuing to meet with Cassidy’s office to share information and combat misinformation. She stressed the harm caused by framing autism as a disease to be eradicated, stating, “It hurts autistic people living their lives right now.” The ongoing efforts demonstrate the commitment of autism advocates to ensuring accurate information and access to vital services for the autistic community.
