The new, expanded facility for the Thompson Center for Autism and Neurodevelopment at the University of Missouri is getting ready to open next spring, doubling its capacity for treatment as the demand for services increases.
Meanwhile, U.S. Health and Human Services Secretary Robert F. Kennedy Jr. has been trumpeting his controversial claims about autism: that it hits fully functional children, destroys families and could be caused by vaccines or environmental toxins.
Concerns in the United States have been growing about the rising rates of autism since the 2000s. In the latest CDC study, 1 in 31 8-year-olds are considered to be on the autism spectrum.
But autism experts, including those at the Thompson Center, are pushing back on Kennedy’s claims as he undertakes a “massive testing and research effort” to determine a “root cause” of the disorder.
The causes of autism have been well studied, and the tools to diagnose the disorder are used widely, said Connie Brooks, executive director of the Thompson Center.
In addition, awareness has increased, which has prompted more families to consider autism as an explanation for what they’re experiencing with a child, she said.
“Autism is a diagnosis with genetic causes,” Brooks said. “There are also some potential environmental factors that trigger the genetic impact, but these are less understood and rare.”
And while operations at the Thompson Center haven’t shifted internally, she said patients and families were initially distressed about privacy and procedural changes after the National Institutes of Health announced it would be using private medical data to create a registry of Americans with autism.
This database would be used in the investigation to find a “root cause” and “cure” for autism.
Kennedy weighs in
For at least the past 20 years, Kennedy has repeated statements declaring that vaccines cause autism.
In 2005, he wrote an article published in Rolling Stone called ”Deadly Immunity,” in which he claimed a mercury-based additive once used in vaccines, thimerosal, “may have caused autism in thousands of kids.”
Moreover, he said federal health agencies had colluded with vaccine manufacturers to “conceal the data.”
Scientific responses denounced the article, saying his statements “were not even remotely true.”
In April, he held a news conference where he said that many autistic children “regressed … into autism when they were 2 years old. And these are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.”
He has also described autism as a “preventable disease.”
Further explorations
Experts say Kennedy’s search for a “root cause” of autism is unrealistic, according to The Associated Press.
It appears to ignore years of scientific research linking about 200 genes that play a role — and the differences inside the brain that can be present at birth.
However, there is still a legitimate question of environmental factors beyond just genetics leading to a presentation of autism.
Epigenetics is the study of how environmental factors affect genetic expression, or how genes can be turned “on” or “off.” It’s an important aspect of studying autism. An example of this would be that generally, older mothers are more likely to have children with the disorder.
“There are hundreds of genes that may result in a presentation of autism,” Brooks said. “We have a long way to go, and we don’t clearly know what’s happening with the environmental influences on autism. Further exploration for causes, absolutely we need to keep looking.”
Brooks said autism has also become a diagnosis of first choice rather than a last resort, which it was in the past. But this comes as a double-edged sword.
While there is more awareness and better understanding of the autism spectrum than in the past, she expressed concern about autism being misdiagnosed in some cases, leading to possible overdiagnosis.
Families with children who have behavioral or social issues may seek evaluation from several providers until an autism diagnosis is made, she said.
“I get it,” she added. “When my child struggles, I seek answers in every way I can.”
It’s complicated, she said, because an autism diagnosis may have been overlooked or misdiagnosed as something else — or perhaps there wasn’t enough clarity around why autism was not the best explanation for the child’s difficulties.
“So families sometimes seek multiple evaluation appointments out of care for the child and because medical support/insurance coverage is more easily available for autism than for some other diagnoses,” she said.
Insurance can complicate the process because an autism diagnosis often allows access to a wide range of services that are covered. A diagnosis with overlapping symptoms, such as anxiety or oppositional defiant disorder, may not automatically trigger coverage.
“It doesn’t open as many doors to services, and that’s a systems issue that is inappropriate for serving families,” she said.
Kennedy fallout
There has been a strong response from Thompson Center patients and families in the wake of the recent developments with the HHS and NIH.
“When RFK announced that he was going to do this autism registry, we got many phone calls from families for a few days asking about it, and what would we do, and how do we protect their information?” Brooks said.
She also said the Thompson Center is well connected to other autism treatment centers around the country, and many families at these other centers canceled their appointments in the wake of the discussion.
Tara DeVore, a training specialist at the Thompson Center, said she has confirmed to many families that “their privacy and care is of the most importance.”
Beyond that, DeVore said there have been concerns about cuts to Medicaid and getting access to therapy services.
Both Brooks and DeVore said disappointment and concern about the direction of federal health policies under the Trump administration were the first reactions among staff, but they’ve been more concerned about the well-being of families and patients.
“Our employees are amazing and mission-focused,” Brooks said.
