Long Island experts welcome federal study of autism causes, remain cautious about RFK Jr.'s timeline for answers

Some local medical experts and health providers welcomed more research into what’s causing autism diagnoses to keep climbing, but they remained cautious of Health Secretary Robert F. Kennedy Jr.’s claims that answers would arrive by September.

During a news conference on Wednesday, Kennedy said in addition to genetics, an environmental exposure must also be driving up the autism rate, which according to the Centers for Disease Control and Prevention has surged to 1 in 31 children in 2022 from 1 in 150 children in 2000. The number of children being diagnosed is up since the last CDC report in 2020, when 1 in 36 had the disorder. The CDC has reported biennial autism estimates among 8-year-old children since 2000.

Experts believe the increase in cases could be a combined result of better diagnostic screening and heightened awareness, as well as a broader definition of what qualifies as autism. 

Kennedy vowed to investigate “all the potential culprits. We are going to look at mold, food additives, pesticides, air, water and medicines,” he said Wednesday. He said parents' age and whether they were obese or diabetic would also be assessed.  According to the recent CDC report, autism is 3.4 times more prevalent in boys than in girls

Kennedy also imposed a tight deadline for results of any research, stating at least some answers would arrive by September. Citing the Environmental Protection Agency, he said autism became an “epidemic” in 1989. He planned to uncover what exposures increased since then.

While some experts welcomed renewed focus and research into what is causing autism, they were also concerned about what they believed to be misleading statements that could give people a false sense of hope.

“I’m not saying that there may not be some environmental toxins that can play a role in a portion of people with autism, but I am saying we haven't been able to nail that down in a long time, and so I can't fathom that he'll be able to nail it down in six months,” said Joanne Gerenser, executive director of Eden II Programs, a not-for-profit organization that serves more than 500 autistic children and adults in New York City and Long Island.

Gerenser is also worried people would begin trying treatments that have not been thoroughly vetted or, given Kennedy's history of vaccine skepticism, become hesitant about vaccines.

“My two big concerns are that we're going to revisit the vaccine controversy, which has been put to bed numerous times. And that's scary, because the alternative to vaccines is a measles epidemics … and my second concern is that it will send people down paths of pseudoscientific treatments,” she said, pointing to controversial treatments like chelation therapy for autism, which can do significant harm. 

Kimberly Gilbert, director of Hofstra University’s Diagnostic and Research Institute for Autism Spectrum Disorders, said autism is broken into three levels of severity, from level 1, which she said was the mildest, to level 3, the most severe form. According to a 2023 CDC report, about 73% of people diagnosed with autism fall into levels 1 and 2, while the rest of the population have the more pronounced challenges associated with level 3 and require more support, she said.

Gilbert said there is strong evidence linking genetics to autism but acknowledged many questions remain. 

“Perhaps there could be other types of environmental issues that may be happening at the same time with the genetic piece of things? Yes, so we want to understand that more,” Gilbert said.

Debora Thivierge, CEO and founder of the nonprofit Empowering Long Island’s Journey through Autism known as ELIJA, supports increased research but is skeptical results will come as soon as promised. 

“I am never opposed to somebody finding another pathway to get to results. I am concerned about the timelines and the suggestions of being able to reverse something that's been researched for many years. However, I am a hopeful person, and if there's a way to get to that point where we're getting answers, I am supportive of it," Thivierge said. 

Dr. Sanjeev Kothare, division director of Pediatric Neurology at Cohen Children's Medical Center, said as long as the study isn’t duplicating what has been done or debunked, new research is always a good move.

‘Let's do things that have some value," he said. "Are there other environmental factors? What about the role of computers and iPhone and iPads, the role of genetics, the role of other factors?"