Health and Human Services (HHS) secretary RFK Jr. wants to eliminate autism. In a recent press conference, Kennedy used misleading statistics on the prevalence of profound autism and disparaged the neurodevelopmental disorder.
“Autism destroys families,” Kennedy said. “More importantly, it destroys our greatest resource, which is our children.”
Kennedy is convinced that the rise in autism diagnoses over the last 30 years is related to an environmental toxin, contrary to scientific consensus that the majority of autism cases are linked to genetic factors. Most studies attribute the increased prevalence of autism to a better understanding of the syndrome, an increase in the number of physicians trained to recognize autism and changes in diagnostic practice to recognize a wider range of autism presentation.
“If you’ve met one person with autism, then you’ve met one person with autism,” said Soren Aldaco, a first-year master’s student diagnosed with autism. “It’s important to remember that there’s not any one reason why someone demonstrates the behaviors and patterns that we associate with autism.”
Kennedy’s narrow focus on environmental factors will skew research funding towards studies that support his preconceived ideas.
“We’re going to have a bias of information that comes out years later,” said Dr. Kate Davis, an autism researcher and fifth-year graduate student in the Interdisciplinary Neuroscience department. “Because in these years, the only … autistic research getting funded (will be) looking at environmental factors.”
The HHS secretary’s short-sighted plan to identify the singular, environmental cause of autism may push more funding into autism research, but that funding will be subject to Kennedy’s confirmation bias. Meanwhile, research into heritable causes or improving the lives of autistic individuals will be delayed and pushed aside, setting back the field as a whole.
“While (Kennedy) is interested in finding the origins of autism, he is in no way interested in benefiting autistic individuals,” Davis said. “Any research that’s looking at how to improve autistic lives, how to make sure that they have the care and access that they need, especially as they get older (we’ll see less focus on that).”
Aldaco researches exactly that in the Department of Educational Psychology at UT. She focuses on disability accommodation for those in higher education.
“We’ve heard the student experience and how difficult it can be to get accommodations, to navigate the world as someone who exists outside the norms of higher education,” Aldaco said. “We are researching what accessibility looks like in higher education and how to improve it.”
Aldaco and the hundreds of researchers like her are directly threatened by an administration that has deprioritized resources for disabled people as well as education funds.
“I’m in grad school, fully funded by my research, and I was told today, ‘We need to find you an alternative means of funding,’” Aldaco said.
Although research into the biology of autism is important, institutions should also take into consideration the interests of those affected by the research. Davis stated that researchers should be asking autistic individuals for direction.
“What are you interested in us finding out?” Davis asked. “Do you care about the causes of autism? Probably not. … you care about how to make sure that your life is better.”
Kennedy’s goal to eliminate autism by finding its environmental source ignores existing research that contradicts his beliefs. This willful ignorance will harm the autistic community by undermining research that would directly benefit autistic individuals, at UT Austin as well as other schools across the nation. Instead of injecting personal bias to control the direction of autism studies, funding should reflect the diverse interests of researchers, autistic individuals and autistic researchers.
Kate Windsor is a PhD candidate in molecular biology from Austin, Texas.
