STAT+: Autism evaluations are being canceled over fears about a national registry
Fears of landing on a federal list prompts parents, and adults, to cancel autism screening evaluations.
SEATTLE — Michael VanPelt spent the spring glued to his telephone, dialing doctors who might be able to get his 3-year-old son in for an autism evaluation. The music teacher ran out of providers who took his health insurance, but luckily the New Jersey public school system provided him with an independent neurologist, who diagnosed his son with autism on April 3.
VanPelt was thrilled. His son — prone to sensory overload and outbursts when deviating from his routine — would finally get the individualized attention he needed. But the father’s excitement quickly curdled to fear in the following weeks, as federal health leaders announced initiatives aimed at finding autism’s origins.
“Did we just screw up our child’s life? In seeking to help him, did I just paint a giant target on his back?” he wondered.
For now, VanPelt plans to hold off filing any health insurance claims for his son’s diagnosis. He is not alone. People with autism and parents of autistic kids are asking clinicians to erase their diagnoses and cancelling appointments with medical professionals, according to interviews conducted in recent days at an international autism conference.
Amy Esler, a pediatric psychologist at the University of Minnesota, said she has heard of similar cancellations from peers across the country through the International Collaboration for Diagnostic Evaluation of Autism network, which includes more than 20 major autism care and research centers such as Vanderbilt University Medical Center. Families seeking a pre-diagnosis evaluation from the University of North Carolina TEACCH Autism Program have removed themselves from the waitlist, according to Hannah Morton, a UNC psychiatry professor. Multiple organizations declined to comment about the issue.
The cancellations are driven by panic and distrust among the autism community in response to the recent remarks made by health secretary Robert F. Kennedy, Jr. and National Institutes of Health Director Jay Bhattacharya, researchers and advocates told STAT.
