ROCHESTER, N.Y. – Concerns have arisen following an announcement by Health and Human Services Secretary Robert F. Kennedy Jr. about potentially adding people with autism to a disease registry.
Cameron Steers, a developmental coordinator with The Arc of Monroe, who is also on the autism spectrum, expressed his concerns about the direction of the current administration’s approach to autism research.
“It’s pretty disheartening to hear the misinformation put out there about the condition that’s a part of me and a part of who I am,” Steers said.
Steers shared his perspective on living with autism, emphasizing that his diagnosis has been a blueprint for his life rather than a burden.
The Arc of Monroe uses a social model of disability, focusing on societal barriers rather than the condition itself as a hindrance. The clinic works with patients with physical disabilities to help them succeed.
“Like I say, if you do put people like me and others with autism into positions of success to grow, they will rise to the occasion,” Steers said.
Kennedy Jr. and the NIH director stated that accessing this usually hard-to-reach data could aid further research.
The NIH is currently in discussions with the Centers for Medicare and Medicaid Services to access its data, though it is unclear when this initiative might roll out.
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