As the Trump administration lays out ambitious plans to address autism, many longtime leaders and well-known experts in the field have been left out, stakeholders indicate.

National autism advocacy groups and top researchers tell Disability Scoop that they have not had any contact with the U.S. Department of Health and Human Services.

Meanwhile, the Interagency Autism Coordinating Committee — a panel comprised of government officials and members of the autism community tasked with coordinating federal autism efforts — has not met since January.

This comes as federal health officials have fired off one announcement after the next since President Donald Trump took office about their plans to aggressively target autism amid increasing prevalence estimates.

In April, Secretary of Health and Human Services Robert F. Kennedy Jr. told Trump that his agency had “launched a massive testing and research effort” that would “involve hundreds of scientists from around the world” and that “by September we will know what has caused the autism epidemic and we’ll be able to eliminate those exposures.” Kennedy later softened that pledge, saying “we expect to begin to have answers by September,” adding that his agency would be initiating studies to identify environmental toxins responsible for the developmental disability.

More recently, the director of the National Institutes of Health detailed plans to amass private medical records from federal and commercial sources potentially including pharmacies, insurers and even smartwatches and fitness trackers to study autism. The plan drew backlash prompting HHS to clarify that they were developing a “secure data repository that will enable researchers to analyze large-scale, de-identified data,” not “creating an autism registry to track individuals using personal data.”

The bold plans, which have largely been short on details, have taken both advocates and autism researchers by surprise.

Since 2006, the federal government has authorized more than $5 billion in research funding through what’s now known as the Autism CARES Act, according to Dr. Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, who’s leading the Coalition of Autism Scientists, a group of roughly 150 researchers in the field.

“That none of the scientists who have received this funding has been contacted in recent weeks is alarming and does not bode well for the plans that seem to be underway,” said Tager-Flusberg who indicated that she’s heard directly and indirectly from over 400 colleagues. “In the past, research plans to rapidly expand support for autism came after extensive consultation with parent and advocacy organizations and the scientific community. No such process has been undertaken this year.”

Similarly, groups ranging from Autism Speaks to the Autistic Self Advocacy Network say they’ve been iced out by federal health officials.

“We have heard almost nothing from anyone at HHS since the HHS communications freeze was first implemented in January, and so far our requests for meetings and information have not been successful,” according to Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, who said she wasn’t aware of any other autism organization that’s had more contact with the agency. “This is very unusual — different administrations have had more or less contact with us, but to shut all of us out to this extent is unprecedented.”

The lack of communication has led to questions about how studies will be conducted and how data will be used and protected, advocates said. It has also prompted concerns that people may shy away from seeking an autism diagnosis or services.

“Despite continued efforts both individually, and alongside our peers, we have not been able to directly connect with this administration. The current lack of transparency, conflicting statements and limited publicly available information have made it difficult to engage meaningfully leaving us, and many others, learning details in real time,” said Kristyn Roth, chief marketing officer at the Autism Society of America. “As a result, we’ve seen a sharp increase in outreach to our national helpline, and our network of affiliates across the country is experiencing similar concerns. Autistic individuals, caregivers and providers are seeking clarity around their rights and how to safeguard their personal data.”

One exception is the National Council on Severe Autism. Representatives from the group were unexpectedly part of a small meet-and-greet with Kennedy tied to World Autism Awareness Day last month.

“We thought we had a small meeting (with) staff to discuss Medicaid for severe autism, but it somehow morphed into (the meet-and-greet),” said Jill Escher, the group’s president, who indicated that she didn’t know most of the other attendees.

Kennedy has emphasized the challenges faced by people on the more severe end of the spectrum in speaking out about what what he calls the “autism epidemic.”

“These are kids who will never pay taxes. They will never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date,” Kennedy said at a press conference last month, adding that autism “destroys families.”

The characterization prompted a rebuke from several leading autism organizations, some of whom do not always align with each other.

During the press conference, which was in response to the Centers for Disease Control and Prevention’s latest autism prevalence estimate, Kennedy called the increased rate “shocking” and rejected the idea — supported by many experts — that the rise stems from better awareness and diagnosis, insisting instead that autism is “preventable.”

Kennedy has spent years promoting a connection between autism and vaccines despite numerous studies discrediting that theory. Since he became secretary, HHS announced that the CDC is planning a large study revisiting the issue. Vaccine skeptic David Geier has been charged with leading the study, according to The Washington Post. Geier, who has been disciplined by the state of Maryland for practicing medicine without a license, and his father have published papers claiming an association between vaccines and autism, according to the newspaper.

National autism advocacy groups including Autism Speaks, the Autism Society of America, the Autistic Self Advocacy Network and the Autism Science Foundation have all asserted that vaccines do not cause autism.

Escher from the National Council on Severe Autism said she used her brief opportunity with Kennedy at the meet-and-greet to thank him for “his concern about rising autism prevalence and the need to find answers.”

“I also gently pushed back on the vaccine hypothesis and encouraged an approach that stuck closer to biological plausibility,” she said.

HHS officials did not respond to repeated requests for information about the status of the Interagency Autism Coordinating Committee and whether the agency is conferring with outside groups or if there will be any opportunity for public input on its autism initiatives.