Leadership at The Autism Society of America is pushing back against Health and Human Services Secretary Robert F. Kennedy’s recent pledge to find the cause of autism spectrum disorder.
Kennedy promised to launch a “massive testing and research effort” on Thursday to figure out what has caused the “autism epidemic” by September.
“We find that unrealistic and misleading,” President and CEO of The Autism Society of America Christopher Banks told The Hill.
Banks and The Autism Society of America’s Chief Marketing Officer Kristyn Roth agreed that there is a “significant need” for more investment and credentialed research to better understand autism spectrum disorder.
But the lack of transparency around Kennedy’s proposed effort is concerning, they said. It is unclear who will lead the new testing and research effort and what methodology will be used in the process.
In the past, Kennedy has promoted the debunked belief that vaccines are somehow connected to rising rates of autism spectrum disorder. And on Thursday, he said that the new effort will involve “hundreds of scientists from around the world.”
Banks and Roth worry that if Kennedy’s testing and research effort is headed by people who believe in discredited theories such as that vaccines cause autism, decades of progress to understand and treat the condition will be undone.
“The disability community, global scientific and medical community are all aligned that there is no direct link between vaccines and autism and millions of people have been studied through rigorous, rigorous studies of research over decades that has not found a link,” Roth said.
Autism spectrum disorder is a complex developmental disability that is influenced by genetic, biological and environmental factors. One in 36 children in the U.S. was diagnosed with autism spectrum disorder in 2020, up from 1 out of 44 in 2018, according to data from the Centers for Disease Control and Prevention.
That rise has been linked to increased awareness of the condition and clinicians becoming better at diagnosing it, according to the nonprofit organization Autism Speaks.
The speed at which Kennedy is promising to find the cause of the disability is harmful to those struggling during an autism diagnosis as well, Roth added.
‘It’s giving people a lot of false hope,” she said. “True, rigorous, peer-reviewed science takes time to find quality answers.”
Recent funding cuts to the National Institutes of Health, the Department of Education and possible future cuts to Medicaid all threaten the quality of life of those with autism spectrum disorder and future understanding of the condition, Roth said.
“Referring to autism as a chronic disease…and using medical terminology like ‘epidemic’ are really dehumanizes autistic individuals and perpetuates stigma and stereotypes,” she said. “It really reverses a lot of progress that has been made over the last decades.”