As national officials shift research priorities on autism causes, Baltimore parents fear it could negatively affect the care their children receive.
Cristina and Marc Easton of Baltimore have a 5-year-old son named Ellis who was diagnosed with level 2 autism with generalized developmental delays in 2021.
WATCH: Parents fear autism research could affect children's care and support systems
Like many parents, they quickly discovered that diagnostic labels don't fully capture their child's unique challenges and abilities.
"Level two, I mean, that can mean different things in different contexts, right?" Cristina said.
The Eastons worry that without proper understanding, their son might face significant obstacles.
"There would be some enormous difficulties in his life as a result of lack of supports just, you know, rooted in people's ignorance," Marc said.
Navigating care for Ellis has been challenging. With numerous theories about autism's causes, parents struggle to determine the best treatment combinations. Cristina recalls receiving over 100 links to information about medical and behavioral support during one evaluation.
"It's frustrating because it sets you up as a parent to look at your child as if they are completely different than they were the day before you had this label. He's the same kid he was yesterday," Cristina said.
Dr. Walter Zaharodny, a clinical psychologist who has worked with the CDC for 20 years on autism identification, recently joined HHS officials to announce a new study suggesting environmental factors may contribute to rising autism rates.
Zaharodny explains that one challenge in understanding autism prevalence is the lack of biomarkers – there's no simple test that definitively identifies autism. He believes this research belongs in the hands of medical experts.
"If I was trying to understand the legal dilemma or ethical question I might ask a lawyer or a clergyman, but for medical problems, medical experts," Zaharodny said.
The psychologist emphasizes that medical experts approach research systematically, with findings subject to peer review. "Substantiated with high quality evidence, and that opens the door to criticisms and improvements," he said.
In his own research, Zaharodny has observed evidence suggesting environmental factors may affect gene expression over time, potentially creating behaviors associated with autism. However, he acknowledges this is far from settled science and not the only factor involved.
The Eastons fear that focusing research primarily on environmental factors could lead the autism community off course.
"Autism doesn't go away. You don't grow out of it, right? I was alive when kids like my son were literally in straightjackets instead of school," Cristina said.
While Zaharodny wants comprehensive research to find effective treatments and potentially a cure, the Eastons maintain that the cause is less important than ensuring Ellis receives appropriate care now.
"It doesn't matter because it's happening. It's going on and we need to take care of this child every day and perhaps beyond. So the ideas need to be rooted around support," Marc said.
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