Comment by theartfuldodger | Hacker News Reader

Comment by theartfuldodger | Hacker News Reader

Parent Full thread

theartfuldodger

It didnt, It was a list of wishful thinking. I have more exposure to families with previously called "low functioning as it relates to children, and plenty of adults who are very capable and high functioning.

What I do not see people willing to discuss

Parent getting called to school 3-4x a week, causing issues with work

Child running from school or aide and requiring a tracker program

Police/CPS involvement from "runners"

Destruction of marriage from constant state of stress

Violence to siblings

Inability to give attention equally in the family

Incredible high divorce rates, parents and any non a to a pairing.

RFK's speech had some issues, but if you read the transcript it does not match the sound bytes

All of his references to negative autism behaviors/impacts were in regards to the 25% of profound autism.

As I said, I know at least a dozen families where the above is their experience. Single moms breaking down on FB because they have no support and stressed to the max, Dad losing out on projects and sales because it cant be trusted he'll be in the office when needed. Siblings hiding away, sick of outbursts,yelling, non stop activity.

It is a disservice to all of those people to act as if the spectrum does not have a far range of activities.

That sure as hell doesnt mean we need to start trying to end "autistic people" and I think it is manipulation to say RFK's prevailing theme has ever been "autism", it has been a belief that the weaknesses in our food and drug systems are increasing chronic illnesses, mutations etc. Some headlines travel longer, the AIDS/HIV denial and Faucci hate should have got way more attention.

Its not RFK's words, its the media's practice of hyperbolic language that causes any real or perceived damage to the community.

I dont believe there is a connection to find, but maybe this will end the snipe hunt and that funding can just go towards creating spaces and education that allow for a range of interaction and social styles after September. But to ignore both sides of the experience is disingenous and is certainly a slap in the face to the families experiencing real hardship from their child's divergence.

I am not even a fan, I just despise the lazy characterizations that get slung around in all emotional spaces, he is mostly a careful speaker, especially compared to the norms now.

It's interesting because that list you provide ("Parent getting called to school 3-4x a week" etc.) is a good summary of my household growing up. Me, my sister, and my father are neurodivergent and on the spectrum.

But we are people that others would not consider to be in the 25% RFK is referring to. Yet, at some point in our lives we were. Growing up I was less verbal than I am now, and I was often paired to play with other autistic kids who were totally non verbal and died early because of their autism. So I'm well aware of the extent of the spectrum.

So I agree with this:

> It is a disservice to all of those people to act as if the spectrum does not have a far range of activities.

However I find it is RFK and not the poster you are replying to who fails to recognize autism as a spectrum. Indeed, if you read the transcript of his speech he does not refer to autism as a spectrum until the end, when a reporter frames it in those terms as part of a question. Instead, he very clearly keeps referring to autism as a binary of "profound" versus I suppose "regular" autism, which is not at all how autistic people experience autism.

What RFK does is juxtapose debilitative autistic behavior (nonverbal) with very normal autistic behavior (toe walking) and he lumps it into a category he calls "profound autism" which is not recognized as a category of autism, nor is it precise or descriptive enough to have a clear meaning. I'm already in an argument with another poster about that, I don't want to open up another front on that issue, you can read my thoughts about that in my comment history.

> Its not RFK's words

For me, it is his words. I've read the transcript free of any media filtering and the actual words he uses are causing real damage to the autistic community.

> snipe hunt and that funding can just go towards creating spaces and education that allow for a range of interaction and social styles after September. But to ignore both sides of the experience is disingenuous

You frame their concerns as a "snipe hunt" -- the opposite of genuine; yet characterize refusing to entertain them as being disingenuous and a slap in the face of autistic people. I don't understand, wouldn't dragging autistic people into a farcical excuse to prove some nonsense about the food system be far more damaging to autistic people and their families? Why can't we just not do the snipe hunt and use the money right now for creating spaces and education?

> lazy characterizations that get slung around in all emotional spaces, he is mostly a careful speaker, especially compared to the norms now.

I think this is a lazy characterization because you don't support it with any evidence. In my post history I highlight several examples from the transcript in which RFK is not careful with his language, and instead paints autistic people with a broad brush and engages in strange conspiracy theorizing in his official capacity as HHS director. Again, this is free from any media bias as it is the direct transcript from this press conference.

Reply on news.ycombinator.com