RFK Jr. wants to find 'cause' of autism. Here's what people in autism community think
Health and Human Services Secretary Robert F. Kennedy Jr. said April 10 during a meeting of President Donald Trump's Cabinet that the government will know the cause of the "autism epidemic” by September, and will be able to "eliminate those exposures" that he says are behind the condition and increasing diagnoses.
The CDC says that some people with autism spectrum disorder have a genetic condition, but other causes are not yet known. ASD diagnoses among 8-year-olds increased from 1 in 36 to 1 in 31 children from 2020 to 2022, according to data published on Tuesday by the CDC.
Kennedy’s statement was met with an overwhelming amount of contempt from much of the autism community, who express pride for their neurodivergence. However, some parents of autistic children who disagreed with Kennedy’s wording still want answers and support his efforts. But while Kennedy claims his “massive testing and research effort will involve hundreds of scientists from around the world,” researchers caution that producing a scientifically valid study in just five months is nearly impossible, and it could take years to provide reliable results.
Cesilee Montgomery, a mom of three kids – two of whom have autism – shared her frustrations on TikTok.
“I greatly take offense to RFK’s stance on autism being an ‘epidemic.’ That goes against everything that we believe and have told our kids,” she said on April 13. “I feel like this is really going to hurt the autism community. They do not have a disease, it is not an epidemic, and I don’t need anyone to change them.”
But while many echoed Montgomery’s sentiments in the comment section, some defended Kennedy's efforts.
“As an autism mom I disagree. I would like to know. My child has a genetic testing and it comes back normal,” another added. Montgomery replied, “Mine did as well, they said all genetics aren’t currently known. I want answers but I don’t believe a good study can occur and reveal it by fall.”
However, Kennedy has given hope to many parents desperate for answers. At a recent anti-vaccine autism summit in San Diego, parents of children with autism cheered as Kennedy promised via prerecorded video a future where "autism, once again, is very rare, where families with autism are well supported, where people on the spectrum are valued for the unique gifts they have to offer in our society," according to reporting from NBC.
Autism rates are increasing, but RFK Jr. and the CDC aren’t aligned
HHS released a statement on April 15 that contradicted the CDC report, and said the rising incidence of autism could not be solely attributed to increased access to diagnostic tools and improvements to early detection.
However, Christopher Banks, the President and CEO of the Autism Society of America, says the data does reflect diagnosis progress, and does not signal an "epidemic."
The report also found rates from about 1 in 103 8-year-olds being diagnosed in one south Texas county, to about 1 of every 21 in a suburban county near Philadelphia and roughly 1 in 19 near San Diego.
“The true or actual rate of autism is more likely to be closer to what this report has identified in California or Pennsylvania,” said study coauthor Walter Zahorodny of Rutgers University in New Jersey. “California in particular has a longstanding and excellent program for screening and early intervention.”
Kaelynn Partlow, an autistic therapist and author who appeared on Netflix’s “Love on the Spectrum,” also attributes rising autism rates to greater awareness in clinicians and improved identification in patient groups who were “previously overlooked," such as women and people of color.
“It's also worth noting that what was once called Asperger’s or PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified) is now included under the autism umbrella, so naturally, we’re going to see the numbers rise,” she adds.
Finding the ‘cause’ of autism in five months is ‘unrealistic and misleading’
Several scientists and autism advocates are skeptical of Kennedy’s promise to provide answers as soon as September.
“It oversimplifies a deeply complex issue and reflects a lack of understanding,” Partlow says.
Banks finds Kennedy’s claim to be “unrealistic and misleading.”
“Leading disability organizations, the scientific community and credible medical experts all agree: We need more rigorous, science-based research – not speculation, less transparency or oversimplified timelines,” Banks said in a statement.
Pediatrician and online health educator Dr. Zachary Rubin explained on TikTok that “the scientific process doesn’t have a hard timeline.” Scientists need to look at cohorts of people, potential exposures and eventual outcomes over several years. “If we’re going to have any information by September, it is likely coming from studies that are highly flawed, low quality and will not be reproducible by the scientific community,” he concluded.
After Kennedy's remarks, Trump said without any basis that autism could be caused by "something artificial" and "maybe it's a shot."
Kennedy is known for anti-vaccine views and has spread debunked claims that vaccines cause autism. In his confirmation hearings, Kennedy said he was not anti-vaccine, but pro-safety. He said all his children are vaccinated.
The CDC says many studies have looked at whether there is a connection between vaccines and autism and "to date, the studies continue to show that vaccines are not associated with autism."
“We are deeply concerned by the lack of transparency around this effort – who is leading it, what methods are being used and whether it will meet established scientific standards,” Banks said. “If driven by individuals who have promoted debunked theories, such efforts risk undermining decades of progress and causing real harm to the autism community.”
People with autism want more resources and social support
Partlow says that the “real crisis is one of support.”
“We know that early intervention, consistent therapeutic services and strong special education systems lead to better outcomes for autistic adults. Unfortunately, many families still struggle to access these resources due to limited funding and long waitlists,” she says.
Jennifer Cook, an advisory council member at the Autism Society of America and on-camera expert for Netflix’s “Love on the Spectrum,” was diagnosed with autism as an adult in 2011, after her three children were diagnosed.
“I understand folks who have profoundly autistic family members and want to understand what's going on with their loved one,” she says. But she worries that rhetoric like Kennedy’s will make autistic people “want to repress and mask again." Masking is a term for hiding natural behaviors, emotions or traits to fit in or meet societal expectations, which is "incredibly dangerous because it does lead to depression," Cook explains.
Partlow adds, “Rather than trying to eliminate autism, we should be investing in systems that allow autistic people to grow and lead happy, self-directed lives across their entire lifespan.”
But parents who support Kennedy want change and more support, too.
At the anti-vaccine autism summit, Del Bigtree, the CEO of Kennedy's "Make America Healthy Again" movement, told the room, "Robert Kennedy Jr., who stood with you and hugged you and has been here with you this whole time, now has the most powerful position in health in the world."
Contributing: Zac Anderson, Adrianna Rodriguez