Comment by arcticfox
1 day ago
gift link to a related NYT Opinion piece by an actual (very liberal) parent living this reality that may surprise some people
https://www.nytimes.com/2025/04/25/opinion/autism-rfk-parent...
As a very liberal parent of a profoundly autistic child, there has never been article I've related to more. The condescension of fellow liberals and advocates for level 1 autism for us, much of which is present in this thread already, is incredibly frustrating and in many ways harder to stomach than RFK Jr.
RFK Jr is at a minimum a misguided nutjob - but he's also the only one to ever recognize our plight on a national stage.
I feel for you, because I am not sure how I would fare in that circumstance. That said, the opinion piece is in itself a frustrating.
<< Autism has become an identity, a different way of thinking and existing.
I think, this sentence, more than anything else in that article aggravates me the most and I am not entirely certain why. It is not some sort of rhetorical question. I simply struggle to understand the obsession US denizens have with identity. Everyone is 2% cherokee indian, 2/5 italian and maybe a little dutch on non-pagan holidays. And this does not spare the parents. They are X parents. Puppy parents. Teenager parents. Autist parents. All in an attempt to establish some sort of identity that can be displayed to the society at large.
<< Children with autism have a right to an appropriate education, to accommodations, changes in the classroom to help them succeed; we have sensory-friendly days at the zoo.
Sure, but at the expense of the non-autistic kids? What does that statement actually mean?
<< I don’t care if my child ever pays taxes
In case there is any kind of doubt, the society does. If the registry is not intended as an intentionally bad thing(tm) by RFK jr himself, you can rest assured it is absolutely seen as a way to ensure that more taxpayers exist ( and this is the charitable parsing of that registry ).
<< She did not destroy my family,
This is an interesting one. There are people who do derive meaning from service such as this, but they do not strike me as a majority of the population. At best, it puts a heavy strain on the familial ties.. and for a very obvious reason.. it is not a light cross to bear. And we do like easy mode. But to actively deny that it is a strain is silly.. because while it did not break the author, the same issue definitely took some families down.
<< I want to know why regressive autism happens
I think most of us on this forum can agree that knowledge can be useful.
Why is a comment like this downvoted? I found value in it since I likely wouldn't have come across this information otherwise.
The comment is simply sharing an article from someone directly affected. What happened to intellectual curiosity? Diversity of opinion? It's comments like this we need more of on HN, not less of.
To start with, someone directly affected by autism is someone experiencing it themselves. Parents, educators, and caregivers have historically been granted primacy in these discussions, largely because so many autistic people cannot effectively advocate for themselves, either at all or in the current systems that exist for it. That doesn't change our obligation to center the experiences of autistic people, who are having the most direct one possible.
Parent- and caregiver-focused approaches are how we've ended up with things like ABA¹ being fairly mainstream, and sympathy for parents pursuing experimental or simply crank treatments to "cure" their children, frequently with extremely harmful results. Support and advocacy groups run by autistic people are absolutely full horrific stories of abuse in this vein.
Which is, I believe, a large part of RFK's interest² in it. I think he wants to make more ad hoc, extreme, and experimental and frankly abusive "treatment" supported for parents of autistic children.
So the comment you're responding to isn't a curious or "diverse opinion", it is basically the standard view of this up until the last 10-15 years or so. Autistic people had to fight very hard to have our own views and experiences taken seriously. RFK's focus here is part of an even-more-recent backlash against that.
¹ Essentially conversation therapy for autism. It can be effective at teaching us how to behave like "normal" people which can be comforting for parents of autistic children. But autistic people overwhelmingly experience it as extremely distressing or worse.
² He has also signaled that he will use it as a justification to ban vaccines. I don't have enough of a read on the guy to reckon which of these is a bigger motivation to him. There's also an understudied but impossible-to-deny correlation between transness and autism. A lot going on here.
https://en.wikipedia.org/wiki/Applied_behavior_analysis#Crit...