WA advocacy groups, families react to potential national autism registry
WA parents, groups concerned over proposed 'autism registry'
Plans to study autism proposed by U.S. Health and Human Services Secretary Robert F. Kennedy Jr. have been met with backlash from advocacy groups and local families in Washington state.
SEATTLE - Plans to study autism proposed by U.S. Health and Human Services Secretary Robert F. Kennedy Jr. have been met with backlash after NIH Director Dr. Jay Bhattacharya told an advisory panel that the agency would pull private medical records as part of the study.
Those details revealed on Monday have led to concerns about a national autism registry, including among advocacy groups and local families in Washington state.
"I think it would be fabulous although I think it's a completely insane idea that we would find a cure for autism, magically by September," said Leslie Moon in response to RFK Jr.'s statement setting that deadline.
RFK Jr. to launch national autism registry collecting Americans’ medical records
The Health and Human Services secretary has vowed to do detailed studies on the causes of autism, which he has referred to as a "preventable disease."
Moon is the mother of Trevor, a 24-year-old who she says has severe level 3 autism.
She says some of RFK Jr.'s statements have been shocking, but she's glad there's a spotlight on severe autism and she isn't opposed to the idea of a potential autism registry using her son's medical data.
"I don't have a problem with that." said Moon. "I don't have a problem with people knowing about Trevor, and if Trevor's information can help somebody else, that's what I'm all about."
The Khouw family says they would submit medical information if the request came from an organization they found to be reputable but that does not include this current HHS leadership.
"At this point, I would not trust Secretary Kennedy with any of his plans," said Andrew Khouw.
Andrew Khouw is the father of Ethan Khouw, a 17-year-old who is described as having profound autism.
"I'm really skeptical on how the administration is going to acquire the database, how they're going to create it, how it's going to be used in the future and how they can protect families' privacy," said Khouw.
Secretary Kennedy sparked outrage claiming that autism is "preventable" and the health secretary has been known to alight with anti-vaccine advocates claiming childhood vaccines are responsible for autism, a claim that has been debunked by scientists and studies with the CDC.
RFK Jr. calls autism a 'preventable disease,' launches environmental study
Health Secretary Robert F. Kennedy Jr. warned that U.S. autism diagnoses are rising at an "alarming rate," calling the condition a "preventable disease."
Earlier this month, Secretary Kennedy claimed "autism destroys families," a statement that Ethan's mother, Nicole Khouw found to be hurtful and misleading.
"Ethan has not destroyed us and he is not destroying our family or his community," said Nicole Khouw. "What is destroying families is practically the lack of resources and the misinformation given to communities."
Leslie Moon also believes there needs to be more discussion on helping people already living with autism.
"The over 5 million adults living with autism in the United States and we're not talking about how we help those people," said Moon.
The Autism Society of America emailed this statement to FOX 13:
"The Autism Society of America strongly advocates for rigorous, science-based research to advance our understanding of Autism. We continue to support efforts to improve data collection methods that can meaningfully contribute to this research. However, we are deeply concerned about the ethical implications of the current data collection approaches proposed by the NIH—particularly regarding informed consent, and a threat for misuse of information.
"The Autism community is diverse. Some Autistic individuals require complex, lifelong support, while others live independently with fewer needs. The Autism Society is committed to ensuring that all Autistic individuals are respected and represented in research, policy, and services.
"Any research initiative must ensure that the private personal health information of the individuals be accessed in compliance with the Health Insurance Portability and Accountability laws and regulations. In order for individuals to provide knowing consent, the individuals must clearly understand what data is being collected, how it will be used, and who will have access to it. Robust safeguards must also be in place to protect medical records and personal health information from misuse or unauthorized access.
"While surveillance is a recognized tool in health research, the current approach appears more retrospective than forward-looking. This shift is especially troubling given the recent dismantling of the Office for Human Research Protections (OHRP), which historically upheld ethical standards for research involving human subjects. Without strong oversight, there is a heightened risk that surveillance efforts may move forward without adequate transparency, accountability, or protection. Many Autistic individuals and community members are justifiably hesitant to disclose their diagnosis to government entities due to fears of data misuse, discrimination, or surveillance.
"It is more critical than ever that NIH funding is awarded to qualified researchers who demonstrate a clear commitment to ethical standards, transparency, and informed consent. Grant decisions must prioritize applicants with a proven track record of upholding human rights and community trust.
"Building trust with the Autistic community must remain a central priority—rooted in transparency, accountability, and strong privacy protections at every stage of research and data collection. In moments when rhetoric or in-fighting threatens to divide, we must hold space for diverse perspectives and lived experiences. At the core, we share a common goal: ensuring Autistic individuals and families have meaningful access to the resources, supports, and services they need to live fully.
"The Autism Society of America continues to call for inclusive collaboration with the Autism community, science-driven decision-making, and increased investment in the research, programs, and services that truly reflect the needs of Autistic people across the spectrum."
Arzu Forough, President and CEO of the Washington Autism Alliance, says there are multiple autism databases that are fragmented, and she wants HHS to take sincere steps to use collected data to help individuals and families living with autism.
"That that might lead to better access to timely information for scientists that are working on autism," said Forough.
Forough says she is not pleased with Secretary Kennedy's rhetoric about autism, but she wants families in Washington to know there is hope.
"There is a strong community here in Washington state of support at any age, regardless of where people are in their journey with autism," said Forough. "We need to remain inclusive, and we need to remain focused on the fact that we're all in this together."
The Source: Information in this story is from the Washington Autism Alliance, the Autism Society of America, National Institutes of Health and FOX 13 Seattle reporting.
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