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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 Autisti

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.
- mbilokonsky 5y ago
  With respect: 1. I'm not talking over anyone. I'm expressing that I found the use of the phrase 'severe autism' in a response to an article explaining why 'there is no severe autism' to be a problematic use of language that felt disrespectful to me. I'm allowed to have feelings about the words people use, and the author expressly stated that he was trying to be respectful so I wanted to provide the feedback that I didn't perceive it that way. 2. I absolutely understand that this is a parent concerned over "who will take care of my son when I'm gone". Let me ask you this: what does that question have to do with the essay? The point this parent was making is that the essay shouldn't be listened to because the reality on the ground is that it's too hard to be careful of language when you need to communicate urgency. That's a take, but it's one I disagree with it. That's fine. 3. Thanking a parent for being invested in their kid's future isn't patronizing or inappropriate. Many parents of Autistic kids aren't. I was speaking sincerely, and if you're reading sarcasm or passive aggression in my tone I'd suggest you reflect on what you know about Autistic tone and stop projecting onto me. 4. I can't control anyone's words or behavior. All I said was that I found the comment disrespectful. That's not me forcing anyone to change, and far, far worse has been said to me in these comments. I can see that I've upset you, but I'd like to suggest that you're reading things into my words that aren't there and projecting interpretations that I don't intend. Thank you.
  - teakettle42 5y ago
    > I'm expressing that I found the use of the phrase 'severe autism' in a response to an article explaining why 'there is no severe autism' to be a problematic use of language that felt disrespectful to me. What does "problematic" mean here, exactly? As for "disrespectful"; how is it disrespectful of anything other than your opinion? Why is your opinion deserving of more respect, here? You do not have "severe autism" and cannot speak from their child's experience; if anything, it's disrespectful to pretend that you have more authority on the subject than the actual parent and caregiver. > 2. I absolutely understand that this is a parent concerned over "who will take care of my son when I'm gone". Let me ask you this: what does that question have to do with the essay? ... That's a take, but it's one I disagree with it. That's fine. What moral or intellectual authority do you have to dictate the appropriate conversations people may independently have in response to your essay? You're welcome to disagree, in which case you can post a rebuttal. Moral disapproval is not effective disagreement. > 3. Thanking a parent for being invested in their kid's future isn't patronizing or inappropriate. Many parents of Autistic kids aren't. I was speaking sincerely, and if you're reading sarcasm or passive aggression in my tone I'd suggest you reflect on what you know about Autistic tone and stop projecting onto me. In this context, it implies you have standing as a recipient or beneficiary of their actions, such that you're in a position to express or deny them your gratitude. If you don't see why that's inappropriate, I'd "suggest you reflect on what you know" about the social expression of gratitude, and consider why expressing gratitude for something very personal to someone else — and entirely external to yourself — could be an inappropriate, patronizing co-opting of what they've shared. > 4. I can't control anyone's words or behavior. All I said was that I found the comment disrespectful. You're certainly trying to, by claiming a form of moral authority instead of using reasoned debate to convince other people of the validity of your point of view. You've disagreed with me across the board, and used terminology I find offensive when applied to me — why is that not disrespectful by your own metric? If I told you "that's disrespectful", would it convince you of my position? If we both say "that's disrespectful", do we have to toss a coin to decide who wins?
throwaway93754 5y ago
Thanks Mykola, I used the phrase in quotes to indicate that I also think it is not a great description. I will try to elaborate below. > 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. Can you clarify what you mean? Are you referring to my use of that phrase, or something else? This statement feels like it leaves no room for me to make any comment on Autism, but I don't think that is what you mean. > I see you saying that you can't possibly advocate for your son's needs without using that phrase I don't think that's what I said. Your description of "current support needs" in particular is one that I'm having trouble reconciling. Specifically, you wrote "acknowledges that sometimes we do need support, acknowledges that our support needs can be variable, and doesn’t define us or our autism in a deficit-centered way." My son needs 24-7 support, and will for the rest of his life. His highest functioning day still makes him incapable of self care. He cannot use the bathroom himself or tell someone he has a stomach ache. And I don't say all of this because I don't believe in his potential, or as someone who hasn't been and doesn't continue to do everything possible to help him find ways of communicating. But, at his age of almost 15 years old there are realities that I have to accept and plan for. I guess I'm saying, I feel the phrase "high support need," which technically true, doesn't really accurately convey what needs to be in place for him, and tends to group him with a lot of other people who have very different needs from him. > All I'm asking is that you take the time to listen to Autistic adults, as well. I don't know any other way to say this without sounding patronizing, but listening is not the same as agreeing. I did read your article, there is a lot I agree with, and I appreciate you sharing your perspective, but I respectfully disagree with this point. I think minimizing my son's level of need is harmful to him.
- mbilokonsky 5y ago
  Thanks for the measured response, I hear where you're coming from. > Can you clarify what you mean? I can try. When I say that non-Autistic people shouldn't speak over Autistic people I am referring to decades of behavior. Everyone from doctors to caregivers to parents make assumptions about what Autism is and what Autistic people need, but it's so infrequent to have those assumptions validated by other Autistic people. Let me give you an example. In Doctor Gupta's CNN special about Autism and Marijuana he shows extensive footage of a teenage Autistic girl hitting herself and screaming while in a car. To any Autistic person watching it's obvious that this girl is in extreme distress, that she's hitting herself for _some reason_ because it's somehow better than the experience of not hitting herself. That's what I mean when I say that no behavior is unmotivated. When Doctor Gupta interviewed a distinguished scholar of neurology about this girl, he actually asked "Do we know WHY she's hitting herself?" and the answer that he received was a few seconds of confused silence followed a mumbled comment about "rigid and repetitive behavior". Nothing about distress. Nothing about sensory needs. No suspicion that something is causing her to need to express or stimulate herself in that manner. If he had chosen to interview an Autistic adult -- even a "high functioning" Autistic adult, like me -- that conversation would have gone very differently. We would have gotten into the ways that non-speaking Autistic people communicate, the ways that environmental factors that would seem harmless to NT folks can be traumatic for Autistic people, and the ways that many perfectly healthy Autistic adults learn and engage in less-harmful forms of self-harm in healthy ways to help regulate themselves. So in that one example, do you see why choosing to interview the NT "autism expert" was a poor choice? Do you see how it perpetuated stereotypes of Autistic people in distress as "that's just Autism"? Do you see how it treated the girl as an object, instead of as a subject? When you made your original comment here, choosing to use the phrase "severe autism" without interrogating or even acknowledging the arguments I made about that phrase, it made me feel the same way I felt when watching that interview. It's not necessarily that you're wrong, it's not that you have to agree with everything I say, it's not that your insights into your own kid's life aren't really valueable. It's that this turned into one more instance where an Autistic person did his absolute best to say "please don't use this phrase, it hurts us" and you went ahead and used it anyway. And that's what really bothered me, because it's the same as that doctor using the phrase "rigid and repetitive behavior". It terminates all inquiry and moves on. And to see this comment voted near the top of the discussion, well, can you see why that's frustrating to someone like me? > My son needs 24-7 support, and will for the rest of his life. Many people with high support needs do. That's what "High Support Needs" means. I understand that to your ear it may not have the urgency of "severe autism", but can you at least acknowledge the many arguments I made as to why that phrase is not only harmful but inaccurate? I don't know your son, I don't know what co-occurring conditions he has. I do know that there is probably a lot of insight to be offered from the Autistic community at large about how to deal with a lot of his challenges, and that's what I mean when I say listen to Autistic Adults, as well. I'm not saying you have to agree with everything we say -- I'm saying we have a perspective that is deeply relevant to your situation, and if you're like most parents of Autistic kids you're not really benefiting from that perspective because too many of the interactions around this point become acrimonious, to your point. I'd like to offer you one more bit of context that may help you to contextualize why that happens: a shit ton of us have massive CPTSD. We grew up raised by the best-intentioned parents who made a lot of mistakes because they didn't know any better, and we suffered for those mistakes. Many of us in our adult lives have turned around and tried to talk to people like our parents, to offer our insights into things that may not be obvious to them. And that would be great -- except that often, when parents push back, they do so in a way that puts us right back into powerless childhood memories and triggers that horrible emotional flashback experience. I think the real problem here is that people like you need WAY MORE HELP than you're able to get. I am here for you and WANT to help you, I want your kid to have the best life possible, I mean that with all my heart. But when we come to try to offer that help we're often seen as scary, weird, angry and confusing. I get it, I really do -- and I can see why my reaction here, and calling your piece "disrespectful", may have added to that problematic stereotype. I'm doing my best to build bridges, but I'd be lying if I said that some of the comments on this thread didn't put me into a defensive state, so I'm sorry if I splashed any of that on you. Does this help explain where I'm coming from?

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.

mbilokonsky 5y ago
With respect: 1. I'm not talking over anyone. I'm expressing that I found the use of the phrase 'severe autism' in a response to an article explaining why 'there is no severe autism' to be a problematic use of language that felt disrespectful to me. I'm allowed to have feelings about the words people use, and the author expressly stated that he was trying to be respectful so I wanted to provide the feedback that I didn't perceive it that way. 2. I absolutely understand that this is a parent concerned over "who will take care of my son when I'm gone". Let me ask you this: what does that question have to do with the essay? The point this parent was making is that the essay shouldn't be listened to because the reality on the ground is that it's too hard to be careful of language when you need to communicate urgency. That's a take, but it's one I disagree with it. That's fine. 3. Thanking a parent for being invested in their kid's future isn't patronizing or inappropriate. Many parents of Autistic kids aren't. I was speaking sincerely, and if you're reading sarcasm or passive aggression in my tone I'd suggest you reflect on what you know about Autistic tone and stop projecting onto me. 4. I can't control anyone's words or behavior. All I said was that I found the comment disrespectful. That's not me forcing anyone to change, and far, far worse has been said to me in these comments. I can see that I've upset you, but I'd like to suggest that you're reading things into my words that aren't there and projecting interpretations that I don't intend. Thank you.
- teakettle42 5y ago
  > I'm expressing that I found the use of the phrase 'severe autism' in a response to an article explaining why 'there is no severe autism' to be a problematic use of language that felt disrespectful to me. What does "problematic" mean here, exactly? As for "disrespectful"; how is it disrespectful of anything other than your opinion? Why is your opinion deserving of more respect, here? You do not have "severe autism" and cannot speak from their child's experience; if anything, it's disrespectful to pretend that you have more authority on the subject than the actual parent and caregiver. > 2. I absolutely understand that this is a parent concerned over "who will take care of my son when I'm gone". Let me ask you this: what does that question have to do with the essay? ... That's a take, but it's one I disagree with it. That's fine. What moral or intellectual authority do you have to dictate the appropriate conversations people may independently have in response to your essay? You're welcome to disagree, in which case you can post a rebuttal. Moral disapproval is not effective disagreement. > 3. Thanking a parent for being invested in their kid's future isn't patronizing or inappropriate. Many parents of Autistic kids aren't. I was speaking sincerely, and if you're reading sarcasm or passive aggression in my tone I'd suggest you reflect on what you know about Autistic tone and stop projecting onto me. In this context, it implies you have standing as a recipient or beneficiary of their actions, such that you're in a position to express or deny them your gratitude. If you don't see why that's inappropriate, I'd "suggest you reflect on what you know" about the social expression of gratitude, and consider why expressing gratitude for something very personal to someone else — and entirely external to yourself — could be an inappropriate, patronizing co-opting of what they've shared. > 4. I can't control anyone's words or behavior. All I said was that I found the comment disrespectful. You're certainly trying to, by claiming a form of moral authority instead of using reasoned debate to convince other people of the validity of your point of view. You've disagreed with me across the board, and used terminology I find offensive when applied to me — why is that not disrespectful by your own metric? If I told you "that's disrespectful", would it convince you of my position? If we both say "that's disrespectful", do we have to toss a coin to decide who wins?

throwaway93754 5y ago

Thanks Mykola, I used the phrase in quotes to indicate that I also think it is not a great description. I will try to elaborate below. > 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. Can you clarify what you mean? Are you referring to my use of that phrase, or something else? This statement feels like it leaves no room for me to make any comment on Autism, but I don't think that is what you mean. > I see you saying that you can't possibly advocate for your son's needs without using that phrase I don't think that's what I said. Your description of "current support needs" in particular is one that I'm having trouble reconciling. Specifically, you wrote "acknowledges that sometimes we do need support, acknowledges that our support needs can be variable, and doesn’t define us or our autism in a deficit-centered way." My son needs 24-7 support, and will for the rest of his life. His highest functioning day still makes him incapable of self care. He cannot use the bathroom himself or tell someone he has a stomach ache. And I don't say all of this because I don't believe in his potential, or as someone who hasn't been and doesn't continue to do everything possible to help him find ways of communicating. But, at his age of almost 15 years old there are realities that I have to accept and plan for. I guess I'm saying, I feel the phrase "high support need," which technically true, doesn't really accurately convey what needs to be in place for him, and tends to group him with a lot of other people who have very different needs from him. > All I'm asking is that you take the time to listen to Autistic adults, as well. I don't know any other way to say this without sounding patronizing, but listening is not the same as agreeing. I did read your article, there is a lot I agree with, and I appreciate you sharing your perspective, but I respectfully disagree with this point. I think minimizing my son's level of need is harmful to him.

mbilokonsky 5y ago
Thanks for the measured response, I hear where you're coming from. > Can you clarify what you mean? I can try. When I say that non-Autistic people shouldn't speak over Autistic people I am referring to decades of behavior. Everyone from doctors to caregivers to parents make assumptions about what Autism is and what Autistic people need, but it's so infrequent to have those assumptions validated by other Autistic people. Let me give you an example. In Doctor Gupta's CNN special about Autism and Marijuana he shows extensive footage of a teenage Autistic girl hitting herself and screaming while in a car. To any Autistic person watching it's obvious that this girl is in extreme distress, that she's hitting herself for _some reason_ because it's somehow better than the experience of not hitting herself. That's what I mean when I say that no behavior is unmotivated. When Doctor Gupta interviewed a distinguished scholar of neurology about this girl, he actually asked "Do we know WHY she's hitting herself?" and the answer that he received was a few seconds of confused silence followed a mumbled comment about "rigid and repetitive behavior". Nothing about distress. Nothing about sensory needs. No suspicion that something is causing her to need to express or stimulate herself in that manner. If he had chosen to interview an Autistic adult -- even a "high functioning" Autistic adult, like me -- that conversation would have gone very differently. We would have gotten into the ways that non-speaking Autistic people communicate, the ways that environmental factors that would seem harmless to NT folks can be traumatic for Autistic people, and the ways that many perfectly healthy Autistic adults learn and engage in less-harmful forms of self-harm in healthy ways to help regulate themselves. So in that one example, do you see why choosing to interview the NT "autism expert" was a poor choice? Do you see how it perpetuated stereotypes of Autistic people in distress as "that's just Autism"? Do you see how it treated the girl as an object, instead of as a subject? When you made your original comment here, choosing to use the phrase "severe autism" without interrogating or even acknowledging the arguments I made about that phrase, it made me feel the same way I felt when watching that interview. It's not necessarily that you're wrong, it's not that you have to agree with everything I say, it's not that your insights into your own kid's life aren't really valueable. It's that this turned into one more instance where an Autistic person did his absolute best to say "please don't use this phrase, it hurts us" and you went ahead and used it anyway. And that's what really bothered me, because it's the same as that doctor using the phrase "rigid and repetitive behavior". It terminates all inquiry and moves on. And to see this comment voted near the top of the discussion, well, can you see why that's frustrating to someone like me? > My son needs 24-7 support, and will for the rest of his life. Many people with high support needs do. That's what "High Support Needs" means. I understand that to your ear it may not have the urgency of "severe autism", but can you at least acknowledge the many arguments I made as to why that phrase is not only harmful but inaccurate? I don't know your son, I don't know what co-occurring conditions he has. I do know that there is probably a lot of insight to be offered from the Autistic community at large about how to deal with a lot of his challenges, and that's what I mean when I say listen to Autistic Adults, as well. I'm not saying you have to agree with everything we say -- I'm saying we have a perspective that is deeply relevant to your situation, and if you're like most parents of Autistic kids you're not really benefiting from that perspective because too many of the interactions around this point become acrimonious, to your point. I'd like to offer you one more bit of context that may help you to contextualize why that happens: a shit ton of us have massive CPTSD. We grew up raised by the best-intentioned parents who made a lot of mistakes because they didn't know any better, and we suffered for those mistakes. Many of us in our adult lives have turned around and tried to talk to people like our parents, to offer our insights into things that may not be obvious to them. And that would be great -- except that often, when parents push back, they do so in a way that puts us right back into powerless childhood memories and triggers that horrible emotional flashback experience. I think the real problem here is that people like you need WAY MORE HELP than you're able to get. I am here for you and WANT to help you, I want your kid to have the best life possible, I mean that with all my heart. But when we come to try to offer that help we're often seen as scary, weird, angry and confusing. I get it, I really do -- and I can see why my reaction here, and calling your piece "disrespectful", may have added to that problematic stereotype. I'm doing my best to build bridges, but I'd be lying if I said that some of the comments on this thread didn't put me into a defensive state, so I'm sorry if I splashed any of that on you. Does this help explain where I'm coming from?