PORTLAND, Maine — Autism and disability rights advocates say a proposed national registry for people with autism — coupled with recent inflammatory comments from U.S. Health and Human Services Secretary Robert F. Kennedy Jr. — will undermine decades of knowledge and acceptance about the condition and threaten patient privacy.

As part of a new effort to study autism, the National Institutes of Health is amassing private medical records from federal and commercial databases, including pharmacy chains, lab tests and data from patients treated by the Department of Veterans Affairs and Indian Health Service, private insurance claims, and data from smartwatches and fitness trackers, CBS News reported this week. The NIH is also in talks with the Centers for Medicare and Medicaid Services to increase access to its data.

According to Dr. Jay Bhattacharya, head of the NIH, the data will allow 10 to 20 groups of outside researchers to study “comprehensive” patient data with “broad coverage” of the U.S. population for the first time. Bhattacharya did not give details on how the research teams will be selected but said they will not be able to download the data.

As part of the study, a new “disease registry” is being launched to track Americans with autism, CBS said. Details on the registry and what information it will track were not immediately clear and STAT reports that an HHS official later denied that a registry is in the works.

The announcement from Bhattacharya further solidifies an ongoing shift away from supporting people with autism living in their communities, said Staci Converse, managing attorney and leader of Disability Rights Maine’s developmental disabilities team.

For example, the Department of Education’s Institute of Education Sciences, which has historically been a major funder of autism research, was recently gutted in the Trump administration’s layoffs, Time reported. The institute’s research focused on developing and evaluating school-based interventions for students.

Last month, Kennedy announced plans to eliminate the Administration for Community Living, an agency to support older Americans and those with disabilities, including adults with autism.

“There’s a shift away from supporting people in the community, which for decades has been the goal … to (finding) a medical cause that I don’t think exists,” Converse said. “This is a huge step backward. It’s, quite frankly, heartbreaking.”

‘I just want to be left alone’

Kennedy has frequently repeated false claims linking autism to vaccines and has hired a discredited vaccine researcher to investigate the disproven theory.

The announcement comes on the heels of Kennedy’s claims that autism is a “preventable” disease — or an epidemic — that “destroys families” and has been “catastrophic for our country.”

Last week, Kennedy said during a news conference that children with autism “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 on a date, many of them will never use a toilet unassisted.”

He previously vowed to find the cause of autism by September, but has since walked that back.

Kennedy’s recent statements brought up a host of feelings for Marco Orlando: rage, fury, humiliation.

“Respectfully, this man does not speak for me or my lived experiences as a man who lives with autism,” said Orlando, 39, of Brewer. He has a college degree, a driver’s license and has been actively involved in advocacy work for over a decade.

Orlando, vice chairman of Speaking Up for Us, Maine’s self-advocacy organization, said he’s against the idea of a registry.

“I don’t need people having that much access to my personal information. I don’t need to be tracked that bad,” he said. “I just want to be left alone.”

The recent rhetoric around autism has been incomprehensible, Orlando said.

“My inherent need to stay informed on current events has become increasingly at odds with my desire to stay sane,” he said. “I don’t have a good feeling about where we’re headed.”

U.S. Sen. Susan Collins, a Maine Republican who last year sponsored the Autism Cares Act and voted to confirm Kennedy, said in a statement that she has asked the NIH for more information on the implementation of the program, including how they plan to obtain, safeguard and use the data.

“While I acknowledge the secretary’s interest in funding autism research, medical records are highly personal and subject to certain legal protections, and the privacy and dignity of Americans living with autism must be respected,” Collins said, adding that Kennedy and Bhattacharya should work directly with autism advocacy organizations and families affected by autism on future proposals.

Collins added that she was disappointed by some of the language Kennedy has used to describe people with autism.

“My husband’s son had severe autism and was never verbal. His experience, and that of many other families, is one of the reasons I have always been a strong advocate of funding for autism research and why I support studies to better understand how autism develops and how to improve the quality of life for people with autism and their caregivers,” she said.

‘He’s going to set us back’

Cathy Dionne, executive director for the Autism Society of Maine, said that she worries that the “study” could be a foregone conclusion as a way for Kennedy to further false claims that vaccines cause autism.

“We need evidence-based research by medical providers who have extensive knowledge in research, that’s what we want to stand behind,” she said. “We have a lot of concerns that he doesn’t have qualified people that are going to help in this next stage.”

Dr. Brian Youth, president of the Maine Chapter of the American Academy of Pediatrics, echoed similar concerns.

“Nobody is against ongoing research,” he said. “We want to make sure privacy is protected and not spend a lot of time on things we already know don’t cause autism, such as vaccines.”

Kennedy has focused on finding an “environmental” cause, but Youth said it’s possible they won’t find one.

“It’s hard to say whether we’re going to find a single explanation,” Youth said. “We need large-scale studies that protect patient confidentiality and rights and look at many different factors.”

Dionne, at the Autism Society of Maine, said Kennedy’s statements about children with autism show a fundamental misunderstanding of the condition.

“How insulting for people who are working 40 hours a week, who are married, who have children, who are driving,” she said, calling it a dangerous situation.

“We’ve come so far with autism. He’s going to set us back,” she added.

Nancy Cronin, executive director of the Maine Developmental Disabilities Council, a quasi-state agency, agreed that Kennedy’s comments “would have been more appropriate from somebody speaking in 1950.”

She’s not against registries as a whole — New Jersey has one that functions well, she said, but it has a clearly defined purpose to provide information to families to make sure they get the support they need.

That’s not what she’s seeing happening now.

“This is a huge, huge undertaking in which a person’s information is going to be evaluated for unknown reasons, and it’s going to be unclear how well or thorough or coordinated these different databases are,” she said. “The data likely will not be a complete picture without a good deal of thought and planning.”

For example, autism is evaluated in three levels based on support needs, but many databases won’t distinguish between them, she said.

Cronin said Kennedy’s comments suggest he’s more focused on level three patients, who need significant support.

“It appears that this man is talking from a very uninformed place,” she said. “I’m worried that we’re going to go backward in research, not forward. (The approach) is too simplistic, and it’s damaging.”

© 2025 Portland Press Herald
Distributed by Tribune Content Agency, LLC