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For some context: there is an unfortunate phenomenon where discussions between parents of autistic children and adult autistics tend to turn very acrimonious. I

For some context: there is an unfortunate phenomenon where discussions between parents of autistic children and adult autistics tend to turn very acrimonious. I am a parent of a child with, for lack of a better term, "severe" autism, but I hope I can provide a respectful viewpoint. One of the thoughts that gives me the most anxiety is who will take care of my son when I'm gone. Who will make sure his needs are being met and that he's not being abused, or hurting himself. The unfortunate reality is that services for people like my son are desperately missing. It's very easy for politicians to cut funding for services even as the need for them quickly grows. It's discriminatory. As a parent, I feel a deep responsibility to advocate for increasing these services, for doing everything I can to hold the decision makers to account. And so I will unapologetically fight for my son until my last breath. And I also understand and care about the need to be respectful. But the reality is that, the careful language advocated for here is at odds with trying to clearly convey how dire the situation is for people like my son to people who don't have experience in this area. Also, these public forums often devolve into infighting, muddying the message even more.

wrnr 5y ago
- enchiridion 5y ago
  This kind of comment doesn’t fly here. Judging by you account age I think you know that. I take your point, but there are nicer and more constructive ways to put it.
- wonnage 5y ago
  I think this guy needs a time-out (and/or permanent ban): https://news.ycombinator.com/item?id=29554182 https://news.ycombinator.com/item?id=29554182
CoastalCoder 5y ago
IIUC, you're saying that we can't express strong feelings without acrimony. Is that correct? I've been impressed sometimes by examples of good diplomacy in HN threads. I've found them instructive for my own conversational skills.
- throwaway93754 5y ago
  No, that's not what I'm trying to say. I think it's hard to assume good intentions sometimes.
  - CoastalCoder 5y ago
    I see. Yeah, it's a vexing problem. Occasionally I make a comment on HN with the best of intentions, and despite that I'm accused of not discussing in good faith. I haven't found a good way of persuading them otherwise once that happens. It's frustrating because I think it prevents some really interesting and important conversations, especially on difficult topics.
    - throwaway93754 5y ago
      Yeah, I agree. I have to admit that I've probably been on both sides of that. It's human nature I suppose.
mbilokonsky 5y ago
This feels really weird to me. My whole point in the piece was that non-Autistic people shouldn't be given unilateral leave to talk over and in place of Autistic people, but that's exactly what you're doing. I had a whole section in the article that explains why the phrase "Severe Autism" is inappropriate, and does more harm than good to Autistic people. I see you saying that you can't possibly advocate for your son's needs without using that phrase, and I don't understand why you're saying that. Surely "High Support Needs" conveys everything you mean to say without misrepresenting what Autism actually is? Like, I hear that you are worried about and love your son. Of course you do, and you seem like a parent who is invested in their kid's future. Thank you. But this comment was really disrespectful. I made a reasoned argument as to why that phrase was hurtful and you didn't address it at all except to say that you didn't respect it. I want to stress that I absolutely understand that you are dealing with a lot. Raising Autistic kids is really hard, and scary, and often the only support you get is people who don't know what they're talking about. But some of them have doctorates, and so you listen to them, and that makes sense. All I'm asking is that you take the time to listen to Autistic adults, as well.
- teakettle42 5y ago
  > This feels really weird to me. My whole point in the piece was that non-Autistic people shouldn't be given unilateral leave to talk over and in place of Autistic people, but that's exactly what you're doing. You're literally giving yourself leave to "talk over and in place of" a "severely autistic" child, and their care-giving parent. This is a parent concerned over "who will take care of my son when I'm gone." Do you really believe that by arguing "Severe Autism" vs. "High Support Needs", you're improving their situation, improving general state of discourse, or even raising an issue that matters at all relative to their serious concern? > Of course you do, and you seem like a parent who is invested in their kid's future. Thank you. This is inappropriate and patronizing. You're not in a position to approve, disapprove, or thank a parent on behalf of their autistic child. > All I'm asking is that you take the time to listen to Autistic adults, as well. As an now-adult who was also diagnosed with ADHD and autism, all I'm asking is that you take the time to listen to other Autistic adults when we strenuously disagree with your using a DSM diagnosis, which we just so happen to share, as some sort of bludgeon to police and coerce other people's words and behavior.
RcouF1uZ4gsC 5y ago
> “Nothing About Us Without Us.” I feel this phrase really introduces selection bias. This selects for people with autism who can communicate and live independently. However, this also suppresses the experiences of parents and other care takers of people with autism who are unable to communicate or live independently. Thus people with the most severe autism are not heard at all since they don't have the ability to speak for themselves, and their parents/caretakers are excluded.

wrnr 5y ago

enchiridion 5y ago
This kind of comment doesn’t fly here. Judging by you account age I think you know that. I take your point, but there are nicer and more constructive ways to put it.
wonnage 5y ago
I think this guy needs a time-out (and/or permanent ban): https://news.ycombinator.com/item?id=29554182 https://news.ycombinator.com/item?id=29554182

CoastalCoder 5y ago

IIUC, you're saying that we can't express strong feelings without acrimony. Is that correct? I've been impressed sometimes by examples of good diplomacy in HN threads. I've found them instructive for my own conversational skills.

throwaway93754 5y ago
No, that's not what I'm trying to say. I think it's hard to assume good intentions sometimes.
- CoastalCoder 5y ago
  I see. Yeah, it's a vexing problem. Occasionally I make a comment on HN with the best of intentions, and despite that I'm accused of not discussing in good faith. I haven't found a good way of persuading them otherwise once that happens. It's frustrating because I think it prevents some really interesting and important conversations, especially on difficult topics.
  - throwaway93754 5y ago
    Yeah, I agree. I have to admit that I've probably been on both sides of that. It's human nature I suppose.

mbilokonsky 5y ago

This feels really weird to me. My whole point in the piece was that non-Autistic people shouldn't be given unilateral leave to talk over and in place of Autistic people, but that's exactly what you're doing. I had a whole section in the article that explains why the phrase "Severe Autism" is inappropriate, and does more harm than good to Autistic people. I see you saying that you can't possibly advocate for your son's needs without using that phrase, and I don't understand why you're saying that. Surely "High Support Needs" conveys everything you mean to say without misrepresenting what Autism actually is? Like, I hear that you are worried about and love your son. Of course you do, and you seem like a parent who is invested in their kid's future. Thank you. But this comment was really disrespectful. I made a reasoned argument as to why that phrase was hurtful and you didn't address it at all except to say that you didn't respect it. I want to stress that I absolutely understand that you are dealing with a lot. Raising Autistic kids is really hard, and scary, and often the only support you get is people who don't know what they're talking about. But some of them have doctorates, and so you listen to them, and that makes sense. All I'm asking is that you take the time to listen to Autistic adults, as well.

teakettle42 5y ago
> This feels really weird to me. My whole point in the piece was that non-Autistic people shouldn't be given unilateral leave to talk over and in place of Autistic people, but that's exactly what you're doing. You're literally giving yourself leave to "talk over and in place of" a "severely autistic" child, and their care-giving parent. This is a parent concerned over "who will take care of my son when I'm gone." Do you really believe that by arguing "Severe Autism" vs. "High Support Needs", you're improving their situation, improving general state of discourse, or even raising an issue that matters at all relative to their serious concern? > Of course you do, and you seem like a parent who is invested in their kid's future. Thank you. This is inappropriate and patronizing. You're not in a position to approve, disapprove, or thank a parent on behalf of their autistic child. > All I'm asking is that you take the time to listen to Autistic adults, as well. As an now-adult who was also diagnosed with ADHD and autism, all I'm asking is that you take the time to listen to other Autistic adults when we strenuously disagree with your using a DSM diagnosis, which we just so happen to share, as some sort of bludgeon to police and coerce other people's words and behavior.

RcouF1uZ4gsC 5y ago

> “Nothing About Us Without Us.” I feel this phrase really introduces selection bias. This selects for people with autism who can communicate and live independently. However, this also suppresses the experiences of parents and other care takers of people with autism who are unable to communicate or live independently. Thus people with the most severe autism are not heard at all since they don't have the ability to speak for themselves, and their parents/caretakers are excluded.