5/5/25 - More news and perspectives on autism

Autism Acceptance Month ended last week. And it was a doozy – so much so that there's still more to say about it ...

U.S. autism data project sparks uproar over ethics, privacy and intent

Ariana Eunjung Cha, Caitlin Gilbert and Fenit Nirappil, Washington Post - April 25, 2025

"Filippone said in an interview that she had been reflecting on times in history when lists of people with disabilities were used to isolate or harm them. While she supports the idea of collecting more data in principle, she said she remains unsettled about the administration’s intentions in creating the database."

This seems like one of those increasingly common instances in disability culture and politics when talk of "registering" or creating "databases" of disabled people for some supposedly beneficial reason is interpreted by disabled people themselves as an existential threat. In each case, it may or may not be in actual fact an immediate threat to our lives and freedom. But it can sure feel threatening. And that should be enough for anyone with even a sliver of political savvy and "disability awareness" to avoid or at least be skeptical about this kind of thing. The fact that they seem to be walking the proposal back is slightly encouraging, even if the Trump administration's ideas about autism and other disabilities are still pretty disturbing.

A research agenda to improve the lives of autistic people

Amy Roeder, Harvard T.H. Chan School of Public Health - April 30, 2025

"I don’t have high hopes for the ill-advised direction Secretary Kennedy is taking autism research and policy. But as we push back on his remarks, I think this is an opportunity to highlight the need for change—not just going back to where we were a year ago. We need a research and service-provision agenda that’s focused on trying to empower autistic people of all kinds to succeed as who they are, not forcing them to be something they’re not. Autistic people—like all people with disabilities and frankly all Americans—deserve better than what they’ve received in the past."

Ari Ne'eman explains some of the problems with RFK Jr.'s autism research initiatives, and points us towards the kind of research and practical support autistic people and their families actually need, and want.

What two autistic people want you to understand about autism

Deepa Fernandes and Ashley Locke, WBUR - April 22, 2025

"What did it feel like as an autistic person to hear Kennedy say things like, autistic people 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 out on a date? ... Garcia: “Literally my hands started to shake. Literally like my hands just couldn't stop shaking, and I think it was because I thought of how so many people who maybe have a newly diagnosed autistic child in their family, maybe they got a diagnosis themselves, maybe they're caring for a loved one – how they absorbed that. I thought about how they are now feeling like their child is a burden on them."

Here is another basic but important explanation of what autistic people need and want, what the Trump / RFK Jr. HHS wants to do, and the emotional and practical impact of the conflict. (Audio interview with transcript).

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