Autism Advocates Mobilize Against Kennedy’s Vaccine Misinformation

When the Centers for Disease Control and Prevention altered its website last month to reflect US Health Secretary Robert F. Kennedy Jr.’s belief of a causal link between vaccines and autism—a claim debunked by dozens of scientific studies—the autism advocacy community sprang into immediate action.

Leaders at the Association of University Centers on Disabilities demanded online that public health officials “listen to autistic voices.” The Autistic Self Advocacy Network (ASAN) published bold-lettered infographics stating “Kennedy’s lies endanger public health and the disabled community,” while the Autistic People of Color Fund called for donations to support their mutual aid efforts.

“On all of our platforms, we immediately directed our community to alternative sources of public health information, sources that aren’t under attack by conspiracy thinking or anti-science approaches,” explained Zoe Gross, director of advocacy at ASAN, the largest US nonprofit operated entirely by autistic people.

Advocates describe combating autism misinformation as a game of Whac-A-Mole since Kennedy, a longtime anti-vaccination figure, was appointed to head the Department of Health and Human Services in February. While they’ve spent decades building an autism awareness and acceptance movement, these groups are now shifting focus to combat rhetoric that threatens to reverse hard-won progress.

“Our community looks to us to give them the facts,” said Maria Davis-Pierre, an autistic licensed mental health therapist and founder of Autism in Black, an organization addressing racial disparities in autism diagnosis and care. “We have to constantly refute RFK’s information since we know that misinformation will harm our community more than any other community out there.”

A Movement Battling Persistent Misinformation

Though autism spectrum disorder was first identified in the 1940s, advocates still spend considerable time educating the public about what autism is and isn’t—a role that’s grown increasingly challenging in recent months.

Autism is a developmental condition affecting communication and behavior, encompassing individuals who can live independently and others who need support due to severe symptoms. The autism recognition movement faced a major setback in the 1990s when a medical paper implied a link between the measles, mumps and rubella vaccine and autism. That study, which examined just 12 children, was retracted in 2010 for insufficient evidence and methodological problems. Numerous large epidemiological studies since then have found no relationship between vaccines and autism.

Yet the vaccine-autism myth persists, with Kennedy now amplifying it from his government position.

“When [Kennedy] says something appalling, we get a week or two where all I can do is answer press inquiries because that’s how many we’re getting. It becomes my whole job,” Gross said. “It’s disappointing to have to fight the same stuff we were fighting when I came into autism advocacy 15 years ago.”

In response, ASAN has released dozens of statements in various formats to reach people with different accessibility needs. The Autism Science Foundation has partnered with the American Academy of Pediatrics to create infographics reassuring families that vaccines do not cause autism.

“We’re having to go backwards and reassure parents,” noted Alycia Halladay, the organization’s chief science officer.

Since Kennedy’s confirmation, the administration has repeatedly characterized autism as a chronic disease that needs to be “investigated,” contradicting the scientific consensus that autism is a neurological and developmental condition, not something to be cured.

When the CDC released its biennial report about autism prevalence in children this April—showing an increase from 1 in 36 children in 2020 to 1 in 31 in 2022—Kennedy called the rise “alarming” and evidence of an “epidemic.” He attributed the increase to “environmental toxins,” directly contradicting the CDC’s explanation that better screening, wider diagnostic parameters, and improved access to services account for the statistical change.

Advocates responded with evidence-based information campaigns and by helping autistic adults share their personal stories through publications like Spectrum Life Magazine and community outreach events.

Pushing Back Against Government Overreach

When Kennedy pledged to create a national autism database to investigate autism’s causes, advocacy groups mobilized a Change.org petition that garnered nearly 50,000 signatures. They argued that Kennedy’s vague registry plan could potentially become a mechanism for the government to track autistic people and restrict their participation in society. Three days later, Kennedy reversed course—a decision advocates believe resulted from their public pressure campaign.

“To speak as though our existence is some kind of calamity that must be eliminated is a form of eugenics,” ASAN stated. “Such ideas led directly to disabled people being incarcerated and forcibly sterilized in this country, and murdered in Nazi Germany, and it is profoundly disturbing to see this administration bringing back yet another hallmark of authoritarian policy.”

In September, when Trump and Kennedy claimed that taking acetaminophen during pregnancy leads to autism, Davis-Pierre quickly shared local resources that would actually help families. Having been diagnosed later in life and having fought for her own child’s autism diagnosis, she understands the harm of such misinformation.

“The fear-mongering will lead to gaps in diagnosis that we have been trying to bridge when it comes to the Black community. People are scared now,” said Davis-Pierre. “While I would love for this administration to take accountability, I think we’re just going to have to buckle in for the rest of this term and understand that our community must work hard to refute this misinformation.”

Advocating for Meaningful Resources and Support

Significant challenges persist in improving quality of life for autistic people, including limited access to healthcare, long diagnostic waitlists, barriers to employment and housing, and shorter life expectancy.

Instead of funding research into disproven theories, advocates want the government to focus on tangible efforts that help autistic people right now. The Autism Society of Greater New Orleans has successfully boosted vaccine confidence through a multi-pronged approach, vaccinating over 2,000 people in 2023 and training 300 medical professionals on creating more comfortable environments for autistic patients.

“People told us that the kits completely changed their experiences with vaccines,” said Claire Tibbetts, the chapter’s executive director. “Children and adults with autism had less fear and anxiety around the physical experience of getting vaccines.”

Many advocacy organizations have turned to lobbying for better-funded services, early intervention, and timely diagnosis. In the Greater New Orleans area, Medicaid patients face a two-year wait for an autism diagnosis due to provider shortages. Without official diagnosis, autistic people cannot access crucial developmental disability services.

Advocates plan to increase pressure on elected officials, with some organizations calling for Kennedy’s removal. Communication channels between advocacy groups and health agencies, which were maintained during both Trump’s first term and Biden’s presidency, have frozen since January when Trump appointees laid off thousands of agency staffers.

Some advocates have taken their message directly to lawmakers. Tonya Haynes of Autism Speaks brings her 25-year-old autistic son Tyler to Capitol Hill to deliver speeches about his experience graduating from college and finding employment with autism.

“Framing autism as some kind of disease that needs to be eradicated is harmful,” said Tibbetts. “It hurts autistic people living their lives right now.”