(NewsNation) — Health and Human Services Secretary Robert F. Kennedy Jr. has vowed to get to the cause of what he has called an autism epidemic but advocates say it’s important for autistic voices to be included in the conversation.
Kristyn Roth, with Autism Speaks, joined NewsNation to explain why the conversation about increased autism diagnoses must be science-based and include autistic people.
“We all need to collectively have a seat at the table in order to accurately represent the diversity and the depth of autism experiences across the spectrum,” she said.
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Roth said there is concern among advocates over transparency on autism research from HHS and whether the language and goals reflect the diverse experiences and opinions within the autism community.
“There has been a really scary narrative that has been coming out of the administration,” she said. “Using language like chronic disease or childhood disease or epidemic is not only inaccurate in the definition of autism, but it perpetuates stigma and stereotypes.”
Every single case represents a unique individual, Roth said, and it’s important not to invalidate individual experiences.
The Autism Society is willing to be part of conversations about autism in government, but Roth said so far, that has not happened.
She also rejected RFK’s request for the Centers for Disease Control and Prevention to study whether autism and vaccines are linked, something that has been debunked in the past.
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“There have been rigorous global, peer-reviewed studies involving millions of people across the world that definitively validate that there is no link between autism and vaccines,” she said.
Roth said taking the time to re-examine something already disproven is not a valuable use of time, and doing so delays conversation about the immediate needs of the autistic community.
“There have been efforts to dismantle the existing supports and services that our community needs, and that includes sweeping cuts to HHS, dismantling the Department of Education, significant threats to Medicaid,” she said. “Going backwards is really threatening decades of progress that we’ve made together.
