How to talk about autism respectfully(coda.io)
coda.io
How to talk about autism respectfully
https://coda.io/@mykola-bilokonsky/public-neurodiversity-support-center/how-to-talk-about-autism-respectfully-84
154 comments
> “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.
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.
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.
I've been impressed sometimes by examples of good diplomacy in HN threads. I've found them instructive for my own conversational skills.
No, that's not what I'm trying to say. I think it's hard to assume good intentions sometimes.
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.
It's frustrating because I think it prevents some really interesting and important conversations, especially on difficult topics.
Yeah, I agree. I have to admit that I've probably been on both sides of that. It's human nature I suppose.
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.
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.
> 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.
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.
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.
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.
> 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?
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?
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.
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.
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?
> 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?
Yes, thank you for sharing.
One point where I think we are in strong agreement: no behavior is unmotivated. I have had a number of frustrating experiences where I've brought my son to the hospital when he was in distress and struggled to get them to take it seriously. In one example, after I made a big fuss, they finally took an abdominal x-ray and realized he was severely constipated. It's heartbreaking because he had no way to communicate that other than hurting himself, and to think about how long he must have been in pain.
The thing that is unique to my son's situation, and it really core to him, is his struggle with communication. It's not just that he can't articulate things, there's some more fundamental blocker for him. He has a talker (for those that aren't familiar, an iPad with special software that displays picture icons). He's a whiz at navigating to familiar things he wants, like asking for potato chips, but he struggles with more abstract concepts like how to say he's uncomfortable. We've spent a lot of time working on body parts with him, and he's pretty good at it, but it doesn't seem to occur to him to use it to talk about what is happening for him.
I know how frustrated I can feel when I'm trying to communicate with someone and they just aren't getting it, but I can't fathom how terrifying it must be for him to have nobody understand him. And, I would assert that you probably can't either. So, while you may have some perspective and ability to speak about aspects of my son's experience, I would respectfully submit, there are many things that you cannot know or speak for him about. And while I can't say what it is like for him, I can share our experience, and advocate for him the best I can.
I'd also say I don't think we are completely misaligned. I agree that the current ways people talk about this are not ideal, and are doing harm to a lot of people. But I think we need to find a balance between being more accepting of neurodiversity while letting people like my son have the dignity to get the care they need. I don't have the answer yet, I'm afraid. But I'm encouraged by this discussion.
One point where I think we are in strong agreement: no behavior is unmotivated. I have had a number of frustrating experiences where I've brought my son to the hospital when he was in distress and struggled to get them to take it seriously. In one example, after I made a big fuss, they finally took an abdominal x-ray and realized he was severely constipated. It's heartbreaking because he had no way to communicate that other than hurting himself, and to think about how long he must have been in pain.
The thing that is unique to my son's situation, and it really core to him, is his struggle with communication. It's not just that he can't articulate things, there's some more fundamental blocker for him. He has a talker (for those that aren't familiar, an iPad with special software that displays picture icons). He's a whiz at navigating to familiar things he wants, like asking for potato chips, but he struggles with more abstract concepts like how to say he's uncomfortable. We've spent a lot of time working on body parts with him, and he's pretty good at it, but it doesn't seem to occur to him to use it to talk about what is happening for him.
I know how frustrated I can feel when I'm trying to communicate with someone and they just aren't getting it, but I can't fathom how terrifying it must be for him to have nobody understand him. And, I would assert that you probably can't either. So, while you may have some perspective and ability to speak about aspects of my son's experience, I would respectfully submit, there are many things that you cannot know or speak for him about. And while I can't say what it is like for him, I can share our experience, and advocate for him the best I can.
I'd also say I don't think we are completely misaligned. I agree that the current ways people talk about this are not ideal, and are doing harm to a lot of people. But I think we need to find a balance between being more accepting of neurodiversity while letting people like my son have the dignity to get the care they need. I don't have the answer yet, I'm afraid. But I'm encouraged by this discussion.
So, I think we've found some common ground here. I'm going to say two things, offer a simple apology and then make you an offer.
1. You assume that I don't know what it's like not to be able to communicate or make myself understood. While I don't have a comorbid intellectual disability, which it sounds like your son probably has, I have had one particular period of "Autistic Burnout" in my adult life where I was reduced to a shell of my former self. I couldn't articulate complex thoughts, couldn't take care of myself, didn't bathe, didn't eat, could not make myself understood to the people I lived with, etc. I've recovered in some ways, but in some ways I likely never will -- I no longer have the capacity I had when I was younger. I understand that that's not exactly the same thing as your son, who has gone his whole life without the comfort of a mutually intelligible conversation; but I hope you can hear that as an Autistic adult I have had experiences that would allow me to understand your son better _in some limited ways_ than a neurotypical person ever could.
2. The thing with the comorbid intellectual disability is really important. I'm not a huge fan of the DSM, but at least here it's how people get medically diagnosed and the DSM is very careful to say "Autism is NOT intellectual disability, though they do co-occur frequently". From what you've described, your son sounds like an "extremely high support needs autistic person with a comorbid intellectual disability" most technically. I get that "severe autism" can be shorthand for that, but the chilling effect on the global discourse around Autism is that people don't understand the distinction, and conflate intellectual disability (or speech-impairing apraxia) with autism itself.
3. I've reflected here a bit and I apologize for my defensive reaction to your original post. I didn't appreciate the intention behind using quotation marks around the term "severe", I read that differently than you intended it and I apologize.
4. You need help and support and I'm splitting hairs over word choice over here, I get that we're coming at this from two very different perspectives and I'd like to further apologize for not being as empathic as I'd like to have been towards your first post. I'd like to offer you my help and support if there's anything I can do or any insights I can provide or any introductions I can make to other folks in the neurodiversity movement -- or even if just a conversation outside of this kinda hostile environment would be of interest, please let me know. My email address is my username here at gmail.
Thanks, and have a great night!
1. You assume that I don't know what it's like not to be able to communicate or make myself understood. While I don't have a comorbid intellectual disability, which it sounds like your son probably has, I have had one particular period of "Autistic Burnout" in my adult life where I was reduced to a shell of my former self. I couldn't articulate complex thoughts, couldn't take care of myself, didn't bathe, didn't eat, could not make myself understood to the people I lived with, etc. I've recovered in some ways, but in some ways I likely never will -- I no longer have the capacity I had when I was younger. I understand that that's not exactly the same thing as your son, who has gone his whole life without the comfort of a mutually intelligible conversation; but I hope you can hear that as an Autistic adult I have had experiences that would allow me to understand your son better _in some limited ways_ than a neurotypical person ever could.
2. The thing with the comorbid intellectual disability is really important. I'm not a huge fan of the DSM, but at least here it's how people get medically diagnosed and the DSM is very careful to say "Autism is NOT intellectual disability, though they do co-occur frequently". From what you've described, your son sounds like an "extremely high support needs autistic person with a comorbid intellectual disability" most technically. I get that "severe autism" can be shorthand for that, but the chilling effect on the global discourse around Autism is that people don't understand the distinction, and conflate intellectual disability (or speech-impairing apraxia) with autism itself.
3. I've reflected here a bit and I apologize for my defensive reaction to your original post. I didn't appreciate the intention behind using quotation marks around the term "severe", I read that differently than you intended it and I apologize.
4. You need help and support and I'm splitting hairs over word choice over here, I get that we're coming at this from two very different perspectives and I'd like to further apologize for not being as empathic as I'd like to have been towards your first post. I'd like to offer you my help and support if there's anything I can do or any insights I can provide or any introductions I can make to other folks in the neurodiversity movement -- or even if just a conversation outside of this kinda hostile environment would be of interest, please let me know. My email address is my username here at gmail.
Thanks, and have a great night!
No worries, and thank you!
I'm an autistic parent of a kid with severe disabilities caused by a chromosome difference. Cerebral palsy was an afterthought diagnosis, a side effect, as it were, rather than the core issue. We could not get her diagnosed as autistic although she checks all the boxes, but the communication issues hit home. Several things:
1. Has he had microarray chromosome analysis done? Sometimes kids with chromosome differences have specific issues that affect language development, which can be mitigated to a degree with supplements, but which supplements depend on which genes are involved. There's a strong push that most kids who have profound language/developmental difficulties should get chromosome analysis done, in part because some of these issues can be helped through supplementing. Not a cure, but something to help ease the processing of language, the physical discomforts.
2. Has he had any metabolic testing done?
3. Are you familiar with choice hands?
Your situation resonated with me, because my kiddo has a deletion at 4q 21.1-21.3 which is associated with a complete failure of the expressive language system. It turns out that one of the biggest pieces of that is the COQ2 gene, which affects the body's production of CoQ10. A double recessive in that gene is associated with symptoms much more severe than my kid has, and supplementing CoQ10 and other supplements that work with the CoQ10 brought her language issues from profound to severe. Basically the CoQ10 deficiency was causing mitochondrial issues by mucking up the Kreb cycle. Now the Kreb cycle is an incredibly complex mitochondrial function, which can go wrong in a zillion different ways, but which is incredibly essential to the kinds of energy production that allow for complex motor control necessary for speech. Some knock-on effects of CoQ10 deficiency-caused mito dysfunction include constipation, low muscle tone, neurological problems, poor hunger/satiation signaling, poor sleep cycle signaling (for us, she would never ask to eat, then would eat until she physically couldn't, would not go to sleep without help, would then sleep until woken up...)
Anyway we were told when she was a baby that it was unlikely she would develop language, and by age 2 she had what I called a "roving 5 word vocabulary" where every time she learned a new word she'd lose an old word. Supplements helped her build vocabulary, other supplements to make those supplements work better improved her language in sudden bursts, one particular supplement I gave her an initial dose and her speech efforts went from a couple per hour to more than I could keep track of in 10 minutes.
We knew the language issues were coming, so we started with sign language very early, and sign language videos (Signing Time) taught her to read, sneakily, which we discovered by accident. Most of the non speaking people I've ever known could read. She needed adjustments for a visual deficit, but could definitely do it. She also had a talker, and PECS, and at one point, plastic versions of a bunch of foods that she could trade for the real thing. At 16 she now uses hard-to-understand speech reinforced with hard-to-understand sign most of the time, but we have conversations with her on the regular.
When there's a problem she doesn't have the words for, we use choice hands. "Are you hungry (present one flat hand) or something else? (present the other hand.) If she picks something else, we say, "Are you hurt, or is it something else" And so on, running through the usual suspects like "are your clothes bothering you, are you thirst, do you have to go to the bathroom" quickly. If she picks hurt, we start by figuring out where, then hone in on the specific problem. She can talk about frogs all day long but things like "I can't find my show on netflix" are harder to pin down.
At one point she stopped enjoying the things she normally liked, and that's communication, too. We added lecithin, in that case, and fish oil, to help her inflammation levels and neurotransmitter production (choline and omega 3s are very helpful for brain stuff.) And it helped.
Anyway, this is about mitigating the problems, not curing the kids of who they are. We've always been all about maximizing her ability to communicate and get her needs met safely.
We were able to use a combination of magnesium and vitamin c to ease the constipation down to something tolerable. A lot of laxatives can really mess with other systems, we just found the amount of mag and c that seemed to get her to a point where it wasn't hurting her. Magnesium, especially, can help a lot of systems work better.
1. Has he had microarray chromosome analysis done? Sometimes kids with chromosome differences have specific issues that affect language development, which can be mitigated to a degree with supplements, but which supplements depend on which genes are involved. There's a strong push that most kids who have profound language/developmental difficulties should get chromosome analysis done, in part because some of these issues can be helped through supplementing. Not a cure, but something to help ease the processing of language, the physical discomforts.
2. Has he had any metabolic testing done?
3. Are you familiar with choice hands?
Your situation resonated with me, because my kiddo has a deletion at 4q 21.1-21.3 which is associated with a complete failure of the expressive language system. It turns out that one of the biggest pieces of that is the COQ2 gene, which affects the body's production of CoQ10. A double recessive in that gene is associated with symptoms much more severe than my kid has, and supplementing CoQ10 and other supplements that work with the CoQ10 brought her language issues from profound to severe. Basically the CoQ10 deficiency was causing mitochondrial issues by mucking up the Kreb cycle. Now the Kreb cycle is an incredibly complex mitochondrial function, which can go wrong in a zillion different ways, but which is incredibly essential to the kinds of energy production that allow for complex motor control necessary for speech. Some knock-on effects of CoQ10 deficiency-caused mito dysfunction include constipation, low muscle tone, neurological problems, poor hunger/satiation signaling, poor sleep cycle signaling (for us, she would never ask to eat, then would eat until she physically couldn't, would not go to sleep without help, would then sleep until woken up...)
Anyway we were told when she was a baby that it was unlikely she would develop language, and by age 2 she had what I called a "roving 5 word vocabulary" where every time she learned a new word she'd lose an old word. Supplements helped her build vocabulary, other supplements to make those supplements work better improved her language in sudden bursts, one particular supplement I gave her an initial dose and her speech efforts went from a couple per hour to more than I could keep track of in 10 minutes.
We knew the language issues were coming, so we started with sign language very early, and sign language videos (Signing Time) taught her to read, sneakily, which we discovered by accident. Most of the non speaking people I've ever known could read. She needed adjustments for a visual deficit, but could definitely do it. She also had a talker, and PECS, and at one point, plastic versions of a bunch of foods that she could trade for the real thing. At 16 she now uses hard-to-understand speech reinforced with hard-to-understand sign most of the time, but we have conversations with her on the regular.
When there's a problem she doesn't have the words for, we use choice hands. "Are you hungry (present one flat hand) or something else? (present the other hand.) If she picks something else, we say, "Are you hurt, or is it something else" And so on, running through the usual suspects like "are your clothes bothering you, are you thirst, do you have to go to the bathroom" quickly. If she picks hurt, we start by figuring out where, then hone in on the specific problem. She can talk about frogs all day long but things like "I can't find my show on netflix" are harder to pin down.
At one point she stopped enjoying the things she normally liked, and that's communication, too. We added lecithin, in that case, and fish oil, to help her inflammation levels and neurotransmitter production (choline and omega 3s are very helpful for brain stuff.) And it helped.
Anyway, this is about mitigating the problems, not curing the kids of who they are. We've always been all about maximizing her ability to communicate and get her needs met safely.
We were able to use a combination of magnesium and vitamin c to ease the constipation down to something tolerable. A lot of laxatives can really mess with other systems, we just found the amount of mag and c that seemed to get her to a point where it wasn't hurting her. Magnesium, especially, can help a lot of systems work better.
wrnr(2)
Person with Asperger's here.
The one thing that bothers me more than neurotypical people writing about autism without actually speaking with people with autism are people with autism who think that they can speak for the "community"
The first rule is always "if you have met one person with autism, you've met one person with autism". There is no "us" in the sense that we have something in common which distingushes us from all neurotypical people. So I don't agree with large parts of this article.
E.g I prefer person-first language, but that's not because I think, that autism is a pathology. I do identify myself with autism, but I don't think that this is the largest aspect of my personality, so I don't like to be called "autist" (as much as I don't want to be called "bigfoot" because I have 13 shoe size).
Yes, the author says, that there are people with autism who might disagree. But if he knows this, why is he talking about "we" and "us" all the time?
The first rule is always "if you have met one person with autism, you've met one person with autism". There is no "us" in the sense that we have something in common which distingushes us from all neurotypical people. So I don't agree with large parts of this article.
E.g I prefer person-first language, but that's not because I think, that autism is a pathology. I do identify myself with autism, but I don't think that this is the largest aspect of my personality, so I don't like to be called "autist" (as much as I don't want to be called "bigfoot" because I have 13 shoe size).
Yes, the author says, that there are people with autism who might disagree. But if he knows this, why is he talking about "we" and "us" all the time?
Hi, I'm the author, I'd love to help clarify this.
When I say I'm speaking for "the community" I mean very specifically that I'm a member of the community and I'm speaking about us. I went to great lengths repeatedly throughout the piece to make sure I was very explicit that I was only one voice.
I made a minimum of claims about Autism and what it is. Mostly what I argued was about what it isn't. I use the phrase "If you have met one person with autism you have met one person with autism" literally in the essay, so the fact that you would trot it out as a sort of correction is a bit confusing to me.
I don't think you disagree with me, I think you're a bit upset to see nuances that you don't agree with put forward -- even when they insist that disagreement is also valid. Is that right?
When I say I'm speaking for "the community" I mean very specifically that I'm a member of the community and I'm speaking about us. I went to great lengths repeatedly throughout the piece to make sure I was very explicit that I was only one voice.
I made a minimum of claims about Autism and what it is. Mostly what I argued was about what it isn't. I use the phrase "If you have met one person with autism you have met one person with autism" literally in the essay, so the fact that you would trot it out as a sort of correction is a bit confusing to me.
I don't think you disagree with me, I think you're a bit upset to see nuances that you don't agree with put forward -- even when they insist that disagreement is also valid. Is that right?
>I mean very specifically that I'm a member of the community and I'm speaking about us.
I still have problem with the word "us". What do you mean by "community"? If you mean a certain organization you should say so.
In the Asperger's forum in which I participate we agreed, that everyone should speak only for themselve, which means to use "I" and "me" instead of "us" and "we".
I still have problem with the word "us". What do you mean by "community"? If you mean a certain organization you should say so.
In the Asperger's forum in which I participate we agreed, that everyone should speak only for themselve, which means to use "I" and "me" instead of "us" and "we".
Great! That's a valid perspective and you should keep it!
In the autistic twitter community where I and a lot of other advocates spend our time we are inclusive and speak frequently about ourselves as a culture -- not as a monolith, mind you, but as a culture. We disagree frequently about everything from IFL/PFL to whether or not Autism should be considered a disability, but we recognize that we're all Autistic and we're all doing our best to make the world a safer place for all of us.
In the autistic twitter community where I and a lot of other advocates spend our time we are inclusive and speak frequently about ourselves as a culture -- not as a monolith, mind you, but as a culture. We disagree frequently about everything from IFL/PFL to whether or not Autism should be considered a disability, but we recognize that we're all Autistic and we're all doing our best to make the world a safer place for all of us.
> twitter community
This is where the disconnect is coming from. Twitter 'communities' are a tiny minority of persons. They do not represent the everyday person. This is particularly so with autism, as autism frequently entails social difficulties that get people ostracized from the communities they attempt to join. Twitter, in particular, is quick to ostracize, and you should therefore consider that "Autism Twitter" contains only the subset of autistic persons who can socially pass as conversant, and who choose to be vocal on social networks.
This is where the disconnect is coming from. Twitter 'communities' are a tiny minority of persons. They do not represent the everyday person. This is particularly so with autism, as autism frequently entails social difficulties that get people ostracized from the communities they attempt to join. Twitter, in particular, is quick to ostracize, and you should therefore consider that "Autism Twitter" contains only the subset of autistic persons who can socially pass as conversant, and who choose to be vocal on social networks.
I agree with that sentiment 100%, which is why I went to great lengths to encourage readers to make sure they check in with other Autistic people, that my voice is only one voice, that we are not a monolith, that I don't speak for everyone, etc.
Hell there's even a line near the end where I say that there are Autistic people who would disagree with every single line I have written, and that they are worth listening to as well.
So like... what's the problem?
Hell there's even a line near the end where I say that there are Autistic people who would disagree with every single line I have written, and that they are worth listening to as well.
So like... what's the problem?
I don’t get it either. You don’t even use “us” or “we” in the sense that’s being complained about, as far as I could find scanning the article.
How much more defensive can you be without not writing an article? And we do need _somebody_ to write about what is a fairly pressing problem in coverage of autism?
How much more defensive can you be without not writing an article? And we do need _somebody_ to write about what is a fairly pressing problem in coverage of autism?
"Different things are obvious to me than are obvious to you."
I think this observation, while correct, is a bit too generic, since it's something which can be said about all people.
I have close relative who's on the autistic spectrum. I notice that what I find obvious, he may not find obvious. And what he finds obvious, I may not neccesarily find obvious.
I've spent many, many years pondering over it, and I've narrowed it down to the social communication. I've come to realize that a certain part of inter-human communication is of the "non spoken" kind. This includes facial expressions, body language, tone of voice, etc., but also tiny, tiny differences in how things are said or phrased.
I think "neurotypicals" will observe and accumulate these small, small signals, and they will use the accumulated values when they pass judgement on a social situation. At least that's how I perceive the differences between me and my relative. Whenever I judge a social situation differently from him, I find that the difference usually comes down to these fine-grained cues and signals. He passes judgement without taking them into account, because he simply does not observe them. And I pass judgement taking them into account.
From his side, his conclusion is correct, because of what he sees. And from my side, my own conclusion is also correct, based upon what I see.
I think this observation, while correct, is a bit too generic, since it's something which can be said about all people.
I have close relative who's on the autistic spectrum. I notice that what I find obvious, he may not find obvious. And what he finds obvious, I may not neccesarily find obvious.
I've spent many, many years pondering over it, and I've narrowed it down to the social communication. I've come to realize that a certain part of inter-human communication is of the "non spoken" kind. This includes facial expressions, body language, tone of voice, etc., but also tiny, tiny differences in how things are said or phrased.
I think "neurotypicals" will observe and accumulate these small, small signals, and they will use the accumulated values when they pass judgement on a social situation. At least that's how I perceive the differences between me and my relative. Whenever I judge a social situation differently from him, I find that the difference usually comes down to these fine-grained cues and signals. He passes judgement without taking them into account, because he simply does not observe them. And I pass judgement taking them into account.
From his side, his conclusion is correct, because of what he sees. And from my side, my own conclusion is also correct, based upon what I see.
That stood out to me as well - "We Are Not A Monolith [...] and we will read your coverage accordingly" just seems odd.
FWIW, I have some disabilities (OCD, some physical difficulties), and I just don't care about "person-first"/"identity-first"[1] language. Intent matters _so_ much more. I've had people who've obviously been trained to use person-first language be actively unpleasant (often the classic "you don't look disabled" and questioning the authenticity of my documents), and people who've used clumsy, borderline-offensive language go miles out of their way to help me (and the other way around). It's not really a useful indicator about someone's attitudes.
I will say "disabled person" stands out to me less, as "person with disabilities" can come across as a little forced. That's probably specific to individuals though, as I've just heard the former used much more during my life, and, as the article says, I'm sure many will disagree with any point I've made here.
[1] This feels like something of a misnomer as it's a descriptor, not your entire identity
FWIW, I have some disabilities (OCD, some physical difficulties), and I just don't care about "person-first"/"identity-first"[1] language. Intent matters _so_ much more. I've had people who've obviously been trained to use person-first language be actively unpleasant (often the classic "you don't look disabled" and questioning the authenticity of my documents), and people who've used clumsy, borderline-offensive language go miles out of their way to help me (and the other way around). It's not really a useful indicator about someone's attitudes.
I will say "disabled person" stands out to me less, as "person with disabilities" can come across as a little forced. That's probably specific to individuals though, as I've just heard the former used much more during my life, and, as the article says, I'm sure many will disagree with any point I've made here.
[1] This feels like something of a misnomer as it's a descriptor, not your entire identity
> There is no "us" in the sense that we have something in common which distingushes us from all neurotypical people.
Would you mind expanding on that a bit?
I'm probably misunderstanding, but it seems to me that by definition an attribute like "on the Asperger spectrum" is the kind of partitioning you're saying doesn't exist.
Would you mind expanding on that a bit?
I'm probably misunderstanding, but it seems to me that by definition an attribute like "on the Asperger spectrum" is the kind of partitioning you're saying doesn't exist.
Of course there is the autism spectrum. But it is a spectrum, it is not something that goes from mild to severe or where people have every symptom on the list in a certain degree. The spectrum is diverse - so it is wrong to make any general assumption about it.
(Note: I am not talking about "autism spectrum disorder" diagnosis according to DSM V or ICD-11. These diagnoses have a defined set of required symptoms. But the spectrum is far bigger than that).
(Note: I am not talking about "autism spectrum disorder" diagnosis according to DSM V or ICD-11. These diagnoses have a defined set of required symptoms. But the spectrum is far bigger than that).
> The first rule is always "if you have met one person with autism, you've met one person with autism"
https://en.wikipedia.org/wiki/Anna_Karenina_principle
https://en.wikipedia.org/wiki/Anna_Karenina_principle
I thought it was clear they wanted to speak for a smaller group. Are there words they could have used to do that without you feeling like they wanted to speak for you?
I have to agree with blueflow, here: this type of activism is really irksome.
Honestly, I can't think of anything more counterproductive than Aspies trying to create more rules and further complicate discourse...
He hasn't been chosen by us, doesn't represent our views, and yet still feels like he can talk on our behalf.
I've heard the same thing from trans people before. We need to stop listening to these people.
Honestly, I can't think of anything more counterproductive than Aspies trying to create more rules and further complicate discourse...
He hasn't been chosen by us, doesn't represent our views, and yet still feels like he can talk on our behalf.
I've heard the same thing from trans people before. We need to stop listening to these people.
After reading this, I'm even more confused about what autism is than before.
Sure, my current knowledge may be wrong, but tearing down any generalizations "if you met one person with autism, you met one person with autism" just makes it impossible to define as a thing separate from non-autism.
Yet the author tries to create generalizations later? Autistic people experience the world in a different way than non-autistic people.
Okay, let's let this inconsistency slide. So to what extent? Are they trying to say that all non-autistic people perceive the world exactly the same way? Nonsense, so where's the line?
From the article, there's no line: some are like this, some are the opposite.
I feel the points about the form of communication are valid, but the ones describing the actual subject of communication are not helping.
Sure, my current knowledge may be wrong, but tearing down any generalizations "if you met one person with autism, you met one person with autism" just makes it impossible to define as a thing separate from non-autism.
Yet the author tries to create generalizations later? Autistic people experience the world in a different way than non-autistic people.
Okay, let's let this inconsistency slide. So to what extent? Are they trying to say that all non-autistic people perceive the world exactly the same way? Nonsense, so where's the line?
From the article, there's no line: some are like this, some are the opposite.
I feel the points about the form of communication are valid, but the ones describing the actual subject of communication are not helping.
> Autistic people experience the world in a different way than non-autistic people
I don't think this is a generalization. In fact, it is the opposite of a generalization.
> all non-autistic people perceive the world exactly the same way
They aren't trying to say this. The first statement doesn't imply the second.
I don't think this is a generalization. In fact, it is the opposite of a generalization.
> all non-autistic people perceive the world exactly the same way
They aren't trying to say this. The first statement doesn't imply the second.
> I don't think this is a generalization. In fact, it is the opposite of a generalization.
Maybe "generalization" is the wrong word, but it's still a way to carve out a niche, which was previously denied.
> The first statement doesn't imply the second.
True, but this leaves us with "where is the line?" as the crucial but unanswered question.
Maybe "generalization" is the wrong word, but it's still a way to carve out a niche, which was previously denied.
> The first statement doesn't imply the second.
True, but this leaves us with "where is the line?" as the crucial but unanswered question.
>I'm even more confused about what autism is than before.
There's a full list of diagnostic criteria you can look up, but in short Autistic people lack the "hardware acceleration" that neurotypicals have to assist them with social interaction (and, in the more extreme cases, language).
In childhood, this usually shows itself as a deficit in theory of mind (ie, the child will assume that the other people know what they know).
In adulthood, it usually means that people struggle to maintain the types of cognitive dissonance that smooths over interpersonal interactions (I suspect this is because neurotypicals run multiple systems to simultaneously process the concrete reality and socially agreed-upon "ostensible reality", whereas Autistics rely on a single system to process both).
Just like any other group, this does come with shared experiences. Just like any other group, though, just because there are some shared experiences it doesn't mean everybody is the same.
There's a full list of diagnostic criteria you can look up, but in short Autistic people lack the "hardware acceleration" that neurotypicals have to assist them with social interaction (and, in the more extreme cases, language).
In childhood, this usually shows itself as a deficit in theory of mind (ie, the child will assume that the other people know what they know).
In adulthood, it usually means that people struggle to maintain the types of cognitive dissonance that smooths over interpersonal interactions (I suspect this is because neurotypicals run multiple systems to simultaneously process the concrete reality and socially agreed-upon "ostensible reality", whereas Autistics rely on a single system to process both).
Just like any other group, this does come with shared experiences. Just like any other group, though, just because there are some shared experiences it doesn't mean everybody is the same.
> Honestly, I can't think of anything more counterproductive than Aspies trying to create more rules and further complicate discourse...
Please do not blame Aspies for something that is clearly not their doing. This is just Twitter being Twitter, pretending that they can talk on anyone's behalf. Just ignore the noise.
Please do not blame Aspies for something that is clearly not their doing. This is just Twitter being Twitter, pretending that they can talk on anyone's behalf. Just ignore the noise.
1. I'm not an Aspie. I'm Autistic. The language choice matters.
2. I'm not talking on anyone's behalf and spend half the words in the text validating people who disagree with any of my claims.
3. Oh, I see, Autistic people are like Trans people in that we aren't worth listening to. I wish I'd seen that line before I started responding, but here you go!
2. I'm not talking on anyone's behalf and spend half the words in the text validating people who disagree with any of my claims.
3. Oh, I see, Autistic people are like Trans people in that we aren't worth listening to. I wish I'd seen that line before I started responding, but here you go!
why was this flagged...? This was a perfectly reasonable comment...Was it the snark in the 3rd point? I feel like that was completely justified...
AussieWog93(1)
I like this headline: "Key Takeaway: No Behavior is Unmotivated"
I was looking at a circa 1980 conference proceeding on vandalism which had a quote from this notorious character
https://en.wikipedia.org/wiki/Philip_Zimbardo
to the effect that "vandalism is unmotivated" because vandals don't obviously add to their utility function the way thieves do. The response was "No behavior is unmotivated."
Also in general I think the inability of neurotypicals to have empathy for autists is much more profound than the converse. I remember as a kid on the schoolyard playing with autistic kids whose I could relate to a lot more easier than bullies who would torment me. Looking back I think "what's so strange about kids running around and making noises?"
I was looking at a circa 1980 conference proceeding on vandalism which had a quote from this notorious character
https://en.wikipedia.org/wiki/Philip_Zimbardo
to the effect that "vandalism is unmotivated" because vandals don't obviously add to their utility function the way thieves do. The response was "No behavior is unmotivated."
Also in general I think the inability of neurotypicals to have empathy for autists is much more profound than the converse. I remember as a kid on the schoolyard playing with autistic kids whose I could relate to a lot more easier than bullies who would torment me. Looking back I think "what's so strange about kids running around and making noises?"
unrelated to the topic, but it's always amazed me that Zimbardo made his career on an unethical study that would never pass a review board now (the Stanford Prison experiment)
Wow, this is amazingly well written. I have a disability (but not autism) and can't help but be like... well, yeah, unquestionably correct.
I would go out on a fairly safe limb and say that this problem generalizes to most disabilities pretty well. Even in the way that I use the word "disability" there with the same caution and intent of the author, it's more complicated than that. But also in some ways more general I suspect.
I would go out on a fairly safe limb and say that this problem generalizes to most disabilities pretty well. Even in the way that I use the word "disability" there with the same caution and intent of the author, it's more complicated than that. But also in some ways more general I suspect.
While I agree that there is some potentially useful insight buried in here, I disagree stongly on "amazingly well written" - the signal-to-noise ratio was dreadful.
Thank you so much, I agree with you. That's why I started with disability as the first subject -- because "Nothing About Us Without Us" isn't just about Autism, it comes from the disabled community in general.
It's 100% true that a lot of what I've written generalizes to many other disabilities.
It's 100% true that a lot of what I've written generalizes to many other disabilities.
I had difficulty parsing the "Double Empathy Problem" because it's written with so much meta commentary and qualifiers.
So what is the Double Empathy Problem? I'm still not sure what the article says after reading it twice.
Is it something like this?
The limitation of empathy, for those who understand why it is useful to practice it, and who try to practice it, is that unless you know how the other person thinks, just putting yourself in their shoes won't help. You also have to be able to model how their thoughts will go - not how your thoughts would go if you were in their situation.
So, if you want to treat people with autism empathically, first, investigate and learn how to model how they think. Once you have some model of that, you can practice empathy with them. If you try to practice empathy before you have a model, it won't be empathy - it will be misunderstanding.
So what is the Double Empathy Problem? I'm still not sure what the article says after reading it twice.
Is it something like this?
The limitation of empathy, for those who understand why it is useful to practice it, and who try to practice it, is that unless you know how the other person thinks, just putting yourself in their shoes won't help. You also have to be able to model how their thoughts will go - not how your thoughts would go if you were in their situation.
So, if you want to treat people with autism empathically, first, investigate and learn how to model how they think. Once you have some model of that, you can practice empathy with them. If you try to practice empathy before you have a model, it won't be empathy - it will be misunderstanding.
Yes, something like that! Maybe put differently, we all interact with people expecting those interactions to go a certain way. When they don't go as we expected, we often see it as a failing either of the speaker or of the listener; and complicating things, we trade those two roles constantly during any interaction.
The "double empathy problem" simply says that the fault doesn't have to be assigned strictly to one party, just as how it's unproductive to blame the intern who deleted the production database by accident. There's a systemic failing that should be understood instead.
Complicating matters is that folks with a disability are often pathologized, as the article notes, so it's far more likely that any fault will be assigned to them -- by both parties! (Internalized guilt is a hell of its own.)
The "double empathy problem" simply says that the fault doesn't have to be assigned strictly to one party, just as how it's unproductive to blame the intern who deleted the production database by accident. There's a systemic failing that should be understood instead.
Complicating matters is that folks with a disability are often pathologized, as the article notes, so it's far more likely that any fault will be assigned to them -- by both parties! (Internalized guilt is a hell of its own.)
I had to google around a bit to figure this out, too - I think it's more that in the same way autistic people often have trouble empathizing with others, neurotypical folks have trouble empathizing with them. That's the "double" part - recognizing it's a two-way street rather than just a deficiency/obligation of the autistic individual.
There's a lot of history of doctors/educators saying that autistic people have trouble empathizing with others, that they're just less equipped for empathy or emotional connection in general.
This turns out to be (for many autistic people) just not true; they empathize just fine but their experiences of the world and the way they express empathy and read empathy are different enough from neurotypical people that it's like a bridge that needs to be crossed, it's hard to connect the feelings in a way they can understand, or to know what's going on and when/why someone is feeling upset about something.
What double empathy does is it rephrases that problem as a mutual problem; the issue is not that autistic people are incapable of emotion (for some autistic people it's actually the opposite problem, some autistic people struggle with hyper-emotions and hyper-empathy). The problem is one of communication and understanding. Both neurotypicals and autistic people struggle to understand, read, and communicate with each other.
Double empathy is an attempt to take something that was historically a burden that autistic people had to handle entirely on their own, and to instead rephrase it as a communication problem that can be overcome by both parties learning more about each other and learning to relate to each other.
Or, TLDR:
1. People who are different from each other generally have trouble communicating with and empathizing with each other.
2. Autistic people are often different from neurotypical people.
3. Therefore, autistic empathy is often a problem of communication and understanding, not a one-sided moral or emotional defect within the autistic individual.
This turns out to be (for many autistic people) just not true; they empathize just fine but their experiences of the world and the way they express empathy and read empathy are different enough from neurotypical people that it's like a bridge that needs to be crossed, it's hard to connect the feelings in a way they can understand, or to know what's going on and when/why someone is feeling upset about something.
What double empathy does is it rephrases that problem as a mutual problem; the issue is not that autistic people are incapable of emotion (for some autistic people it's actually the opposite problem, some autistic people struggle with hyper-emotions and hyper-empathy). The problem is one of communication and understanding. Both neurotypicals and autistic people struggle to understand, read, and communicate with each other.
Double empathy is an attempt to take something that was historically a burden that autistic people had to handle entirely on their own, and to instead rephrase it as a communication problem that can be overcome by both parties learning more about each other and learning to relate to each other.
Or, TLDR:
1. People who are different from each other generally have trouble communicating with and empathizing with each other.
2. Autistic people are often different from neurotypical people.
3. Therefore, autistic empathy is often a problem of communication and understanding, not a one-sided moral or emotional defect within the autistic individual.
That was my take-away from the "double empathy problem" too - and I agree that the point was hard to extract from the text.
Thanks for this feedback, I'm hearing that that part of the essay was confusing. I'll try to revisit it and simplify it.
The TLDR is that there is an assumption dating back to the beginnings of Autism research that Autistic people have a "communication deficit".
The point of the Double Empathy Problem is that it shows that that's not true -- that when you have an Autistic Person and a Neurotypical Person interacting they each struggle to understand the other.
In other words, it's not a deficit on the part of the Autistic person -- it's a mismatch between communicators and should be recognized as a systemic failure mode not an error on the part of the Autistic. I hope that helps! :)
The TLDR is that there is an assumption dating back to the beginnings of Autism research that Autistic people have a "communication deficit".
The point of the Double Empathy Problem is that it shows that that's not true -- that when you have an Autistic Person and a Neurotypical Person interacting they each struggle to understand the other.
In other words, it's not a deficit on the part of the Autistic person -- it's a mismatch between communicators and should be recognized as a systemic failure mode not an error on the part of the Autistic. I hope that helps! :)
I have a question that's probably related to the Double Empathy Problem that I've never really been comfortable asking, but this seems like as good a place as any.
Anyone that's been on HN or Reddit or Twitter or Facebook or any other place on the internet where strangers interact has likely seen a situation where people are arguing about something but clearly talking right past each other. Most of the time when I care to pay attention it's clearly pride or stubbornness or rage blindness that's causing the disconnect. However, there are also times where I can't make sense of it at all, either the person is laser focused on a small detail or tracking their own issue through an unrelated conversation or any other number of confusing interactions that tend to agitate people immensely.
Embarrassingly it just occurred to me last year that there are millions of autistic folks that use the Internet, and it's entirely possible that these disconnects are just an impedance mismatch in how our minds work.
So, after all of that, I think my question is if there is any tactful way to approach the question of whether or not someone on the internet is autistic. I'm pretty sure the answer is 'no' and that we just need to remember that's a possibility and to have some grace online.
Anyone that's been on HN or Reddit or Twitter or Facebook or any other place on the internet where strangers interact has likely seen a situation where people are arguing about something but clearly talking right past each other. Most of the time when I care to pay attention it's clearly pride or stubbornness or rage blindness that's causing the disconnect. However, there are also times where I can't make sense of it at all, either the person is laser focused on a small detail or tracking their own issue through an unrelated conversation or any other number of confusing interactions that tend to agitate people immensely.
Embarrassingly it just occurred to me last year that there are millions of autistic folks that use the Internet, and it's entirely possible that these disconnects are just an impedance mismatch in how our minds work.
So, after all of that, I think my question is if there is any tactful way to approach the question of whether or not someone on the internet is autistic. I'm pretty sure the answer is 'no' and that we just need to remember that's a possibility and to have some grace online.
I would not ask someone on the Internet if they were autistic except in extremely rare instances. There's just so much connotation behind that, I have no idea how I would ever approach it.
What I will say is: I don't think that this is purely a problem that autistic people struggle with, I think that neurotypical people (and neurodiverse people who aren't autistic) fall into the same traps, so it makes more sense to me to attack the specific problem when you see it, rather than to try and identify a cause every time.
I have had limited success in the past walking back arguments and trying to get at the root of what people actually disagree with, and sometimes it works and sometimes it doesn't work, but generally I don't feel like I need to categorize someone to try it. It's often enough to say, "hold on a sec, are you upset with claim X or are you specifically upset about just claim Y?" And if that on its own won't work, then I doubt that saying someone is autistic would make it more likely to succeed.
It is generally good practice to try really hard to stay on topic and to stay very specific when arguing with people. Step back from details occasionally and think about what you're actually claiming, and keep just going back to that. Avoid tangents as much as possible, avoid equating disagreements over details with disagreements over philosophy/broad claims. I will not claim to be good at this: quite the opposite, I struggle with it a lot and I regularly fall into petty arguments with people online that I regret later. But when I am conscious enough to think about it, it tends to make my conversations with people online (outside of rare bad-faith actors) happier and more respectful.
What I will say is: I don't think that this is purely a problem that autistic people struggle with, I think that neurotypical people (and neurodiverse people who aren't autistic) fall into the same traps, so it makes more sense to me to attack the specific problem when you see it, rather than to try and identify a cause every time.
I have had limited success in the past walking back arguments and trying to get at the root of what people actually disagree with, and sometimes it works and sometimes it doesn't work, but generally I don't feel like I need to categorize someone to try it. It's often enough to say, "hold on a sec, are you upset with claim X or are you specifically upset about just claim Y?" And if that on its own won't work, then I doubt that saying someone is autistic would make it more likely to succeed.
It is generally good practice to try really hard to stay on topic and to stay very specific when arguing with people. Step back from details occasionally and think about what you're actually claiming, and keep just going back to that. Avoid tangents as much as possible, avoid equating disagreements over details with disagreements over philosophy/broad claims. I will not claim to be good at this: quite the opposite, I struggle with it a lot and I regularly fall into petty arguments with people online that I regret later. But when I am conscious enough to think about it, it tends to make my conversations with people online (outside of rare bad-faith actors) happier and more respectful.
This is great advice, thank you.
You should look into the MBTI types, and specifically the "cognitive functions". A lot of people say they are nonsense, but I think they are valuable (and likely represent an underlying cognitive difference) precisely they explain these kind of situations in way that nothing else. The key thesis of the MBTI is that there is not 1 "standard" way in which we think, but 8 different ones.
You could also use the more general theory that people think differently to each other to explain this scenario. But such a theory is much less practical in terms of resolving the disputes, whereas the MBTI is excellent at this.
This link isn't ideal, but it's a decent considering it's concise and freely available on the internet https://personalityjunkie.com/functions-ni-ti-fi-si-ne-te-fe...
You could also use the more general theory that people think differently to each other to explain this scenario. But such a theory is much less practical in terms of resolving the disputes, whereas the MBTI is excellent at this.
This link isn't ideal, but it's a decent considering it's concise and freely available on the internet https://personalityjunkie.com/functions-ni-ti-fi-si-ne-te-fe...
OK so just thinking about it this way made me realize it doesn't matter if the person is autistic or not, the problem is the communication breakdown, not the underlying cause of it.
Saying 'I'm sorry but I don't think we're having the same conversation, ...' and then resetting context might be all it takes. It certainly would be less horrifically offensive haha.
Saying 'I'm sorry but I don't think we're having the same conversation, ...' and then resetting context might be all it takes. It certainly would be less horrifically offensive haha.
> A lot of people say they are nonsense
They are about 50% nonsense.
But you could read about Big 5 personality traits, which are not nonsense being pushed for commercial reasons like MBTI.
They are about 50% nonsense.
But you could read about Big 5 personality traits, which are not nonsense being pushed for commercial reasons like MBTI.
> But you could read about Big 5 personality traits, which are not nonsense being pushed for commercial reasons like MBTI.
From what I know of the Big 5, it's not very useful for explaining these kind of miscommunications. You can't explain people misunderstanding each other by saying that one is more agreeable and the other less agreeable, because the Big 5 doesn't say much of anything about why those people have those observed traits.
On the other hand, you can explain people misunderstanding each other using the MBTI by for example saying that one is Fe dominant, while the other is Te dominant, as this model posits distinct underlying cognitive processes which cause the person to literally perceive and interpret the world differently (especially in cases where the stimulus (or language) is ambiguous).
From what I know of the Big 5, it's not very useful for explaining these kind of miscommunications. You can't explain people misunderstanding each other by saying that one is more agreeable and the other less agreeable, because the Big 5 doesn't say much of anything about why those people have those observed traits.
On the other hand, you can explain people misunderstanding each other using the MBTI by for example saying that one is Fe dominant, while the other is Te dominant, as this model posits distinct underlying cognitive processes which cause the person to literally perceive and interpret the world differently (especially in cases where the stimulus (or language) is ambiguous).
Anything (and much more!) you can explain (justifiably) with MBTI you can explain with Big 5 because (1) the only actual empirical merit MBTI has is that a couple of its divides are strongly correlated with Big 5 traits, and (2) there is lot of research on practical implications of Big 5 traits on interpersonal interactions.
It's possible that there are some “just so” stories with no empirical basis you can build around the woo that is the MBTI dimensions that don't correlate well with validated personality measures and the unvalidated narratives constructed around both the coincidentally useful and totally invalid MBTI dimensions, but that's of equivalent value to “explanations” drawn from astrology or theory of humors.
It's possible that there are some “just so” stories with no empirical basis you can build around the woo that is the MBTI dimensions that don't correlate well with validated personality measures and the unvalidated narratives constructed around both the coincidentally useful and totally invalid MBTI dimensions, but that's of equivalent value to “explanations” drawn from astrology or theory of humors.
As an Autistic person who recognizes that many friends and interlocutors are also Autistic I can tell you that I have yet to discover a way to so much as suggest people look into it without terrifying and offending them.
A large part of the reason why I do what I do is to offset that reaction and let people recognize themselves in descriptions of the Autistic experience.
A large part of the reason why I do what I do is to offset that reaction and let people recognize themselves in descriptions of the Autistic experience.
Yeah as I was typing it out I knew my 'approach' was horrific, but I still wanted to talk it through.
The strategy you're applying is brilliant and completely sidesteps that defensive reluctance response that seems to stymie so many difficult conversations.
The strategy you're applying is brilliant and completely sidesteps that defensive reluctance response that seems to stymie so many difficult conversations.
The attempt to transform autistic people into a marginalized identity group is incredibly off-putting.
The point of the article is for the author to assert his authority based on nothing but his proclaimed identity. He gets to lecture us (or "journalists") about the "right way" to think and write about his identity group. What could be more "neurotypical" than this kind of power game? Also some new tortured neologisms are introduced ("neuroqueerness").
The point of the article is for the author to assert his authority based on nothing but his proclaimed identity. He gets to lecture us (or "journalists") about the "right way" to think and write about his identity group. What could be more "neurotypical" than this kind of power game? Also some new tortured neologisms are introduced ("neuroqueerness").
Autistic people die before age 60, are subjected to electrical shocks in the US that are illegal to use on dogs, and have their entire subjective experience erased in the name of conversion therapies that cause CPTSD but are fully covered by insurance.
If that doesn't describe a marginalized identity group I'm not sure that the phrase has any meaning?
If that doesn't describe a marginalized identity group I'm not sure that the phrase has any meaning?
Hi! I'm the author of this piece, and I really appreciate the feedback I'm seeing from some folks. Thank you for helping me make this the best essay it can be, this is obviously important to me.
I see and understand that there are some other autistic folks commenting. That's awesome! You should definitely also listen to the people who disagree with me, after all that was a central theme of the article. But do try to make sure that they're disagreeing -- I see a handful of folks here angrily trying to insist that I'm saying the opposite of what I said, and I think some reflection might be helpful.
My overall point is that nobody can speak for all of us, but right now the ONLY people speaking for ANY of us are neurotypical, and that's a problem.
Thanks for the discussion! :)
I see and understand that there are some other autistic folks commenting. That's awesome! You should definitely also listen to the people who disagree with me, after all that was a central theme of the article. But do try to make sure that they're disagreeing -- I see a handful of folks here angrily trying to insist that I'm saying the opposite of what I said, and I think some reflection might be helpful.
My overall point is that nobody can speak for all of us, but right now the ONLY people speaking for ANY of us are neurotypical, and that's a problem.
Thanks for the discussion! :)
Unfortunately I don't have the time to read the full thing, but the part about ""severe autism"" was very insightful! Thank you for writing it! I'll be sure to check out the rest later :)
also, hello fellow ADHD person!
also, hello fellow ADHD person!
blueflow(3)
> I’m not a doctor or a researcher. I’m a 38 year old Autistic and ADHD software engineer. That means that I have 38 years of lived experience navigating Autistic and ADHD life. No neurotypical expert who has studied Autism or ADHD has a better window into the lived experience than I do, and no non-Autistic person can understand or relate to our culture in the ways that I can.
If you are a software engineer and are able to blog, you are really at the high spectrum of functioning. My guess is that the gulf between the author and people with autism who are less functional is greater than between a "neurotypical" and the author.
Neurotypical and autism isn't binary. It is a spectrum and even within autism, there is a huge spectrum. The author speaking on behalf of all people with autism seems not that much different than "neurotypical" people speaking on behalf of people with autism.
If you are a software engineer and are able to blog, you are really at the high spectrum of functioning. My guess is that the gulf between the author and people with autism who are less functional is greater than between a "neurotypical" and the author.
Neurotypical and autism isn't binary. It is a spectrum and even within autism, there is a huge spectrum. The author speaking on behalf of all people with autism seems not that much different than "neurotypical" people speaking on behalf of people with autism.
> My guess is that the gulf between the author and people with autism who are less functional is greater than between a "neurotypical" and the author.
Your guess is wrong. Research shows that people like me still die before 60 from heart attacks and suicide, largely because people like you make assumptions about what may or may not be true about me and then try to hold us accountable to those assumptions.
Further: there is no "high end" of the spectrum, that's not what spectrum means. You're thinking of a gradient, which measures a specific value from 0 to 100 in some normalized sense.
A Spectrum is a gradient of gradients, and "Autism Spectrum" does not refer to the range of "severity" (which as established does not actually exist) but rather to the diversity of presentations.
Your guess is wrong. Research shows that people like me still die before 60 from heart attacks and suicide, largely because people like you make assumptions about what may or may not be true about me and then try to hold us accountable to those assumptions.
Further: there is no "high end" of the spectrum, that's not what spectrum means. You're thinking of a gradient, which measures a specific value from 0 to 100 in some normalized sense.
A Spectrum is a gradient of gradients, and "Autism Spectrum" does not refer to the range of "severity" (which as established does not actually exist) but rather to the diversity of presentations.
Unfortunately clear that most people commenting did not read the article.
[deleted]
I have distaste for the author speaking on behalf of autistic people. Also i have a distaste of the author listing their "disabilities" in their twitter bio.
Its probably some kind of US identity politics thing. I don't think defining yourself via your diagnoses is socially acceptale where i live.
Its probably some kind of US identity politics thing. I don't think defining yourself via your diagnoses is socially acceptale where i live.
> I have distaste for the author speaking on behalf of autistic people
The author's entire point, and the entire point of phrases like "nothing about us without us" is to get neurotypical people to stop talking on behalf of autistic people and to give them their own voices.
I think the author spends a lot of time pointing out that everyone in the autistic community is unique, and I think they spend a lot of time pointing out that even areas where there is broad consensus like identity-first language will still have some detractors among the community. I am unsure what else they could possibly do to make it more clear that the autistic community is not a monolith. They literally have a section titled "Key Takeaway: We Are Not a Monolith".
It feels like a really uncharitable/shallow reading to me to say that the author is pretending to represent anyone when they spend so much of their time going out of their way to specifically avoid causing that perception.
----
> Also i have a distaste of the author listing their "disabilities" in their twitter bio.
Come on, people list far more trivial stuff in their Twitter bios than this. Sometimes it's nice to be able to find other people who are like you online, and self-labeling can help with that.
People being comfortable enough to talk about aspects of their identity in public is not something that's worth being mad about. And autism is 100% an aspect of people's identity, it's a really wild claim to say that a condition that affects people's brains basically from birth and for the entirety of their lives wouldn't be a part of their identity; your brain is a big part of what makes you you.
The author's entire point, and the entire point of phrases like "nothing about us without us" is to get neurotypical people to stop talking on behalf of autistic people and to give them their own voices.
I think the author spends a lot of time pointing out that everyone in the autistic community is unique, and I think they spend a lot of time pointing out that even areas where there is broad consensus like identity-first language will still have some detractors among the community. I am unsure what else they could possibly do to make it more clear that the autistic community is not a monolith. They literally have a section titled "Key Takeaway: We Are Not a Monolith".
It feels like a really uncharitable/shallow reading to me to say that the author is pretending to represent anyone when they spend so much of their time going out of their way to specifically avoid causing that perception.
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> Also i have a distaste of the author listing their "disabilities" in their twitter bio.
Come on, people list far more trivial stuff in their Twitter bios than this. Sometimes it's nice to be able to find other people who are like you online, and self-labeling can help with that.
People being comfortable enough to talk about aspects of their identity in public is not something that's worth being mad about. And autism is 100% an aspect of people's identity, it's a really wild claim to say that a condition that affects people's brains basically from birth and for the entirety of their lives wouldn't be a part of their identity; your brain is a big part of what makes you you.
> I’m coming to you now as an ambassador of that culture
Then why did the author make this mistake? They are not my ambassador. I didn't vote for them. He shall stop talking on my behalf.
This arrogant form of patronizing should be called out, and this is what i just did.
Then why did the author make this mistake? They are not my ambassador. I didn't vote for them. He shall stop talking on my behalf.
This arrogant form of patronizing should be called out, and this is what i just did.
Seriously? Read the very next sentence after that one:
> I’m not here to present you with an authoritative definition of Autism — I’m here to complicate your narratives in a way that makes room for me and people like me to finally be included in the conversation.
Pulling sentences out of context is not making your case. If you're going to call out people for being patronizing, then you need to understand that people are also going to call you out for misrepresenting the tone and substance of the article.
Here's what the author actually says:
> I really appreciate you taking the time to read this — but I am only one Autistic voice. What I hope you’ll walk away with is an understanding that every Autistic person you interview will give you a unique perspective into what Autism is, how it manifests and what kinds of challenges it’s associated with. Each of these perspectives is as valid as any other.
You are picking apart something to represent it in a way that is not backed up by the entirety of the text. The author spends a huge amount of time specifically calling out the thought process that says autistic people are a monolith. Using the word "ambassador" in one sentence does not change that fact, especially when the author immediately afterwards very clearly specifies what they mean by that phrasing.
> I’m not here to present you with an authoritative definition of Autism — I’m here to complicate your narratives in a way that makes room for me and people like me to finally be included in the conversation.
Pulling sentences out of context is not making your case. If you're going to call out people for being patronizing, then you need to understand that people are also going to call you out for misrepresenting the tone and substance of the article.
Here's what the author actually says:
> I really appreciate you taking the time to read this — but I am only one Autistic voice. What I hope you’ll walk away with is an understanding that every Autistic person you interview will give you a unique perspective into what Autism is, how it manifests and what kinds of challenges it’s associated with. Each of these perspectives is as valid as any other.
You are picking apart something to represent it in a way that is not backed up by the entirety of the text. The author spends a huge amount of time specifically calling out the thought process that says autistic people are a monolith. Using the word "ambassador" in one sentence does not change that fact, especially when the author immediately afterwards very clearly specifies what they mean by that phrasing.
Here’s a quote where the author clarifies what culture they are referring to:
“In the autistic twitter community where I and a lot of other advocates spend our time we are inclusive and speak frequently about ourselves as a culture -- not as a monolith, mind you, but as a culture. We disagree frequently about everything from IFL/PFL to whether or not Autism should be considered a disability, but we recognize that we're all Autistic and we're all doing our best to make the world a safer place for all of us.”
I don’t think it’s unreasonable for people to object to this Twitter culture being represented as some more general autistic culture.
I think it would have been vastly better if this sentence had been left out. Or, instead of saying “Ambassador of that culture”, they had qualified it and said “Ambassador of a Twitter autism advocacy community.”
“In the autistic twitter community where I and a lot of other advocates spend our time we are inclusive and speak frequently about ourselves as a culture -- not as a monolith, mind you, but as a culture. We disagree frequently about everything from IFL/PFL to whether or not Autism should be considered a disability, but we recognize that we're all Autistic and we're all doing our best to make the world a safer place for all of us.”
I don’t think it’s unreasonable for people to object to this Twitter culture being represented as some more general autistic culture.
I think it would have been vastly better if this sentence had been left out. Or, instead of saying “Ambassador of that culture”, they had qualified it and said “Ambassador of a Twitter autism advocacy community.”
Yup - they could have easily said “I am a single autistic voice offering my view. You should listen to more autistic people and fewer neurotypical people when trying to understand autism”.
They literally did say that!
> I really appreciate you taking the time to read this — but I am only one Autistic voice. What I hope you’ll walk away with is an understanding that every Autistic person you interview will give you a unique perspective into what Autism is, how it manifests and what kinds of challenges it’s associated with. Each of these perspectives is as valid as any other.
> I really appreciate you taking the time to read this — but I am only one Autistic voice. What I hope you’ll walk away with is an understanding that every Autistic person you interview will give you a unique perspective into what Autism is, how it manifests and what kinds of challenges it’s associated with. Each of these perspectives is as valid as any other.
Yes, which would have stood well on its own, but was negated by “I’m coming to you now as an ambassador of that culture.”
If that single sentence was removed, would you still have a problem with the article?
I'm trying to understand how one sentence negates an entire article that says the opposite of that sentence. I can understand that sentence rubbing you the wrong way, but you do understand that regardless, the author isn't arguing for homogeneity?
We're discussing phrasing right now, and it's fine for a piece of phrasing to hit someone the wrong way or for it to get under their skin, that happens to me all the time. There's nothing wrong with getting hung up on an offhand comment or sentence that hits the wrong way. But it's important to understand that we are only talking about phrasing right now. The entire text of the article as a whole makes it abundantly clear that when the author uses the word "ambassador" they are not thinking of themselves as an anointed leader of a monolithic culture, they are using that word in a much looser sense to say, "I'm a member of this community asking for more representation from the community."
We're not really talking about the author's character or overall argument right now, because it's just not true that their argument is that they speak for all autistic people.
I'm trying to understand how one sentence negates an entire article that says the opposite of that sentence. I can understand that sentence rubbing you the wrong way, but you do understand that regardless, the author isn't arguing for homogeneity?
We're discussing phrasing right now, and it's fine for a piece of phrasing to hit someone the wrong way or for it to get under their skin, that happens to me all the time. There's nothing wrong with getting hung up on an offhand comment or sentence that hits the wrong way. But it's important to understand that we are only talking about phrasing right now. The entire text of the article as a whole makes it abundantly clear that when the author uses the word "ambassador" they are not thinking of themselves as an anointed leader of a monolithic culture, they are using that word in a much looser sense to say, "I'm a member of this community asking for more representation from the community."
We're not really talking about the author's character or overall argument right now, because it's just not true that their argument is that they speak for all autistic people.
mbilokonsky(1)
I do still have objections to the use of the phrase “Ambassador of that culture”. It comes way earlier in the document than the later qualification, and I am not of the view that the equivocation renders it moot.
The entire piece is about taking care with how one communicates about autism, and who gets to represent it.
It’s not surprising that the way it does so is under scrutiny.
The word ambassador isn’t the only word in that phrase. The word ‘culture’ is also there. There is certainly an implication of two cultures in play.
The later part talks about a diversity of autistic voices of which the author is only one, but that doesn’t eliminate the ‘two cultures’ idea that has already been introduced.
The two cultures idea is definitely not universally held by autistic people. I suspect that this is at the root of a lot of the reactions.
It’s not surprising that the way it does so is under scrutiny.
The word ambassador isn’t the only word in that phrase. The word ‘culture’ is also there. There is certainly an implication of two cultures in play.
The later part talks about a diversity of autistic voices of which the author is only one, but that doesn’t eliminate the ‘two cultures’ idea that has already been introduced.
The two cultures idea is definitely not universally held by autistic people. I suspect that this is at the root of a lot of the reactions.
At least for me, it's not about whether it's "socially acceptable". When everyone around you tells you you're morally inferior because you can't do the things they can, the way they can, you (I) internalize a hell of a lot of guilt and trauma.
A diagnosis doesn't have to be a badge of dishonor. It can help you recognize that, no, you're not morally broken -- there are factors at play that just make some things harder to reach. That doesn't mean it's not worth working on some of those things -- it's not an excuse -- but it can help avoid some of the feelings of "you can't do it because you're a terrible broken person who's just not trying hard enough".
So it's actively not about what's acceptable in the eyes of society, because in the eyes of society you're already inferior. Claim some ground for yourself, is the feeling.
What's wrong with listing disabilities? I don't even know what identity politics is, so maybe I'm just not predisposed by the concept?
A diagnosis doesn't have to be a badge of dishonor. It can help you recognize that, no, you're not morally broken -- there are factors at play that just make some things harder to reach. That doesn't mean it's not worth working on some of those things -- it's not an excuse -- but it can help avoid some of the feelings of "you can't do it because you're a terrible broken person who's just not trying hard enough".
So it's actively not about what's acceptable in the eyes of society, because in the eyes of society you're already inferior. Claim some ground for yourself, is the feeling.
What's wrong with listing disabilities? I don't even know what identity politics is, so maybe I'm just not predisposed by the concept?
> you (I) internalize a hell of a lot of guilt and trauma.
If working through internalized guilt and trauma requires externalizing that guilt and trauma, have you really worked through it?
> A diagnosis doesn't have to be a badge of dishonor.
Honestly, I dislike that I received an autism diagnosis in the first place. The dishonor inherent in a diagnosis arises from the almost inevitable propensity to incorporate that diagnosis as an excuse within one's own internal monologue.
> It can help you recognize that, no, you're not morally broken
That is achievable without a diagnosis.
If you have to work harder than the majority of others to achieve something, that doesn't mean you're morally broken, it just means that particular thing is harder for you to achieve.
Do you feel morally broken for other areas in which you do not have a natural talent?
Why do you allow others to make you feel that way about this area?
> Claim some ground for yourself, is the feeling.
You can only claim ground for yourself through achievement, not through a diagnosis.
> What's wrong with listing disabilities? I don't even know what identity politics is, so maybe I'm just not predisposed by the concept?
In general, what is the purpose of listing disabilities outside of requesting specific, personally necessary accommodations?
If working through internalized guilt and trauma requires externalizing that guilt and trauma, have you really worked through it?
> A diagnosis doesn't have to be a badge of dishonor.
Honestly, I dislike that I received an autism diagnosis in the first place. The dishonor inherent in a diagnosis arises from the almost inevitable propensity to incorporate that diagnosis as an excuse within one's own internal monologue.
> It can help you recognize that, no, you're not morally broken
That is achievable without a diagnosis.
If you have to work harder than the majority of others to achieve something, that doesn't mean you're morally broken, it just means that particular thing is harder for you to achieve.
Do you feel morally broken for other areas in which you do not have a natural talent?
Why do you allow others to make you feel that way about this area?
> Claim some ground for yourself, is the feeling.
You can only claim ground for yourself through achievement, not through a diagnosis.
> What's wrong with listing disabilities? I don't even know what identity politics is, so maybe I'm just not predisposed by the concept?
In general, what is the purpose of listing disabilities outside of requesting specific, personally necessary accommodations?
I don't think I could have made my point as strongly without your contributions. Much appreciated.
> Also i have a distaste of the author listing their "disabilities" in their twitter bio.
There's a long history of silencing and rendering invisible the identities of disabled people, to avoid discomfort on the part of the abled, and to divide and prevent the formation of community amongst the disabled. Putting one's disabilities up-front in a profile bio challenges both of these norms, and announcing one's "distaste" reinforces them.
There's a long history of silencing and rendering invisible the identities of disabled people, to avoid discomfort on the part of the abled, and to divide and prevent the formation of community amongst the disabled. Putting one's disabilities up-front in a profile bio challenges both of these norms, and announcing one's "distaste" reinforces them.
> There's a long history of silencing and rendering invisible the identities of disabled people
I've been diagnosed with both ADHD and autism. You would call that an identity; I would not, and find the idea patently offensive.
> Putting one's disabilities up-front in a profile bio challenges both of these norms, and announcing one's "distaste" reinforces them.
There's an inherent pathology in cataloguing your potential limitations (or your self-image of them) as a form of public introduction.
I've been diagnosed with both ADHD and autism. You would call that an identity; I would not, and find the idea patently offensive.
> Putting one's disabilities up-front in a profile bio challenges both of these norms, and announcing one's "distaste" reinforces them.
There's an inherent pathology in cataloguing your potential limitations (or your self-image of them) as a form of public introduction.
I don't have a problem with anyone who doesn't want to think of ADHD or autism as a part of their identity. I don't have a problem with anyone who feels strongly about it. People who don't like that kind of categorization should be respected.
But I do have a problem with saying that other people can't view those categories as a part of their identity or talk about them, or that it's a pathology or weakness for someone to view something that has affected their brain their entire lives as being a contributing factor to who they are. Live and let live, people's understanding and internalization of disability can often be drastically different from other people's. This is something that pops up in almost every community of people with disabilities; just off the top of my head, I've seen fierce debate about this from deaf communities.
If it upsets and offends you to hear someone call ADHD/autism a part of your identity, it also upsets and offends people who have come to terms with themselves in different ways than you to be told that they have a pathology for thinking of themselves differently. Identity itself is a fuzzy word that different people approach in different ways; it isn't rigorously defined, and it is actually possible to give both sides of the identity/attribute debate space to breathe and to consider their identity in the way that's most helpful for them personally. I think it's unhelpful to punch down on people for having different experiences.
But I do have a problem with saying that other people can't view those categories as a part of their identity or talk about them, or that it's a pathology or weakness for someone to view something that has affected their brain their entire lives as being a contributing factor to who they are. Live and let live, people's understanding and internalization of disability can often be drastically different from other people's. This is something that pops up in almost every community of people with disabilities; just off the top of my head, I've seen fierce debate about this from deaf communities.
If it upsets and offends you to hear someone call ADHD/autism a part of your identity, it also upsets and offends people who have come to terms with themselves in different ways than you to be told that they have a pathology for thinking of themselves differently. Identity itself is a fuzzy word that different people approach in different ways; it isn't rigorously defined, and it is actually possible to give both sides of the identity/attribute debate space to breathe and to consider their identity in the way that's most helpful for them personally. I think it's unhelpful to punch down on people for having different experiences.
> There's a long history of silencing and rendering invisible the identities of disabled people, to avoid discomfort on the part of the abled, and to divide and prevent the formation of community amongst the disabled.
Where is the history that supports the idea that there was a goal to prevent the formation of community amongst the disabled?
Where is the history that supports the idea that there was a goal to prevent the formation of community amongst the disabled?
Deaf culture, for example, was deliberately undermined and suppressed for centuries to prevent its emergence as a distinct identity. Alexander Graham Bell, a central figure in the establishment of deaf education, opposed teaching sign language to children and insisted upon oral education, to push pupils to assimilate into the hearing world. He also argued against intermarriage between deaf people, to avert the "great calamity" of "the production of a defective race of human beings".
That seems like advocacy for eugenics, and integrated education, neither of which are good, but it’s not obvious how it would prevent the formation of community amongst the deaf.
> opposed teaching sign language to children and insisted upon oral education, to push pupils to assimilate into the hearing world
would go a long way to making it hard for deaf people to communicate with each other or form their own communities outside of hearing spaces. One of the first things you do if you want to integrate a community or break up a culture is you invalidate their language.
would go a long way to making it hard for deaf people to communicate with each other or form their own communities outside of hearing spaces. One of the first things you do if you want to integrate a community or break up a culture is you invalidate their language.
> would go a long way to making it hard for deaf people to communicate with each other or form their own communities outside of hearing spaces.
True.
> One of the first things you do if you want to integrate a community or break up a culture is you invalidate their language.
This is affirming the consequent once again. You assume the goal is to break up a culture, and claim this is a tactic for that purpose, but that doesn’t actually tell us this is the intention.
As a counterpoint, it is hard for autistic people to get accommodations in workplaces especially without strong legal support.
Is this because bosses ‘want to break up a culture’? I would say not. I would say it’s because management culture has a ludicrously simplistic idea of what humans are in general, and what I’d like to think are false beliefs about cost/benefit of making accommodations.
True.
> One of the first things you do if you want to integrate a community or break up a culture is you invalidate their language.
This is affirming the consequent once again. You assume the goal is to break up a culture, and claim this is a tactic for that purpose, but that doesn’t actually tell us this is the intention.
As a counterpoint, it is hard for autistic people to get accommodations in workplaces especially without strong legal support.
Is this because bosses ‘want to break up a culture’? I would say not. I would say it’s because management culture has a ludicrously simplistic idea of what humans are in general, and what I’d like to think are false beliefs about cost/benefit of making accommodations.
Sure, I'll concede that theoretically all of this could happen accidentally.
I'm not sure that changes much about the experience of the communities it's happening to though. Bell could have had perfectly innocent reasons for making it harder for people to learn sign language, but the end result still kind of ends up being the same, and it seems reasonable to me for people in those communities who do feel isolated to push back and to argue that they have a right to exist and that they aren't being given full voices[0].
----
[0]: no pun intended with the deaf community, except yes pun sort of intended because sign language itself can be described as a voice that allows deaf people to more easily communicate and advocate for themselves, and I think that labeling is kind of accurate. So pun partially intended.
I'm not sure that changes much about the experience of the communities it's happening to though. Bell could have had perfectly innocent reasons for making it harder for people to learn sign language, but the end result still kind of ends up being the same, and it seems reasonable to me for people in those communities who do feel isolated to push back and to argue that they have a right to exist and that they aren't being given full voices[0].
----
[0]: no pun intended with the deaf community, except yes pun sort of intended because sign language itself can be described as a voice that allows deaf people to more easily communicate and advocate for themselves, and I think that labeling is kind of accurate. So pun partially intended.
I don’t think it helps to call the reasons ‘innocent’. Your description of Bell makes him sound like a eugenicist. Most people wouldn’t regard that as particularly innocent today.
I think it matters a lot whether communities have the wrong idea of why things are happening to them, and what other people’s intentions are. It seems profoundly disempowering to not have this understanding. I understand that you don’t.
I think it matters a lot whether communities have the wrong idea of why things are happening to them, and what other people’s intentions are. It seems profoundly disempowering to not have this understanding. I understand that you don’t.
If someone is stepping on my face it doesn't much matter to me if they're doing it on purpose or if they just don't realize I'm there -- the goal is to make them stop stepping on my face.
What you're describing is a very privileged perspective that doesn't really map cleanly to many peoples' lived experience. It's not the case that I need to check whether the person stepping on my face really means to hurt me or not -- it may be the case that I need to object to the entire system that makes it easy for others to step on my face.
Of COURSE the face-steppers would rush to assure me that nobody means me any harm, it's just how the world works, etc.
Why on earth would that matter to me?
What you're describing is a very privileged perspective that doesn't really map cleanly to many peoples' lived experience. It's not the case that I need to check whether the person stepping on my face really means to hurt me or not -- it may be the case that I need to object to the entire system that makes it easy for others to step on my face.
Of COURSE the face-steppers would rush to assure me that nobody means me any harm, it's just how the world works, etc.
Why on earth would that matter to me?
Nobody is stepping on anyone’s face and privilege is not a prerequisite for clear thinking.
I really don’t know why you insist on portraying people as cartoon victims, whether we are talking about autistic people or deaf people. There is no justification for assuming that an autistic person or a deaf person is either incapable or uninterested in reasoning about people’s motivations. This is especially true when we are being harmed. Many autistic people have excellent systematizing skills, and as you have yourself taken pains to point out - no deficits when it comes to understanding other people.
Once again you seem to have anointed yourself speaker for large groups of people who you know little about. This time to claim that they cannot think for themselves because their faces are being stepped on.
We here now are just having a discussion. This is also something many deaf and many autistic people can do. Acting as if someone is stepping on your face during a discussion is not going to lead you to any good conclusions.
I really don’t know why you insist on portraying people as cartoon victims, whether we are talking about autistic people or deaf people. There is no justification for assuming that an autistic person or a deaf person is either incapable or uninterested in reasoning about people’s motivations. This is especially true when we are being harmed. Many autistic people have excellent systematizing skills, and as you have yourself taken pains to point out - no deficits when it comes to understanding other people.
Once again you seem to have anointed yourself speaker for large groups of people who you know little about. This time to claim that they cannot think for themselves because their faces are being stepped on.
We here now are just having a discussion. This is also something many deaf and many autistic people can do. Acting as if someone is stepping on your face during a discussion is not going to lead you to any good conclusions.
> Nobody is stepping on anyone’s face
I mean, this just isn't true though, Bell was hurting people. I don't think these communities are making this stuff up; oppression is real.
I also don't think anyone is saying you personally are stepping on people's faces, what people like me are saying is that discrimination and anti-community policies/actions against disabled communities exist. I'm not sure why that statement is controversial.
Bell was advocating for eugenics. I actually don't think he got up in the morning and thought he was doing something bad, I think he probably thought he was trying to help deaf people. But he was doing something bad, he was contributing to deaf cultural suppression and advocating for eugenics. Separating people's actions from their intentions can be good, but only if we don't allow the intentions to completely override their actions.
And I've read enough accounts of people who have gone through BMT to know that there is actual harm that's happening around these communities, they're not making it up.
> to claim that they cannot think for themselves because their faces are being stepped on.
I think you might possibly be reading some intentions into the author that aren't there. No one is claiming this, it's your own leap of logic. People are pointing out there there are policies (intentional or not) that suppress communities and hurt people. GP isn't saying you're part of those policies, nor are they saying they speak for everyone about what that oppression looks like, the comment you're replying to never uses the words "we" or "us", only "I" and "me".
This seems relatively uncontroversial to me. We can agree that suppressing sign language or performing electroshock therapy on autistic kids is wrong -- regardless of what anyone's intentions are.
I mean, this just isn't true though, Bell was hurting people. I don't think these communities are making this stuff up; oppression is real.
I also don't think anyone is saying you personally are stepping on people's faces, what people like me are saying is that discrimination and anti-community policies/actions against disabled communities exist. I'm not sure why that statement is controversial.
Bell was advocating for eugenics. I actually don't think he got up in the morning and thought he was doing something bad, I think he probably thought he was trying to help deaf people. But he was doing something bad, he was contributing to deaf cultural suppression and advocating for eugenics. Separating people's actions from their intentions can be good, but only if we don't allow the intentions to completely override their actions.
And I've read enough accounts of people who have gone through BMT to know that there is actual harm that's happening around these communities, they're not making it up.
> to claim that they cannot think for themselves because their faces are being stepped on.
I think you might possibly be reading some intentions into the author that aren't there. No one is claiming this, it's your own leap of logic. People are pointing out there there are policies (intentional or not) that suppress communities and hurt people. GP isn't saying you're part of those policies, nor are they saying they speak for everyone about what that oppression looks like, the comment you're replying to never uses the words "we" or "us", only "I" and "me".
This seems relatively uncontroversial to me. We can agree that suppressing sign language or performing electroshock therapy on autistic kids is wrong -- regardless of what anyone's intentions are.
I'm not sure where you're from. I'm from the UK and it feels more generational than location based.
And "not socially acceptable" doesn't feel like the right way to describe it. More that people younger than me are comfortable with things that feel like over-sharing to me.
And "not socially acceptable" doesn't feel like the right way to describe it. More that people younger than me are comfortable with things that feel like over-sharing to me.
Germany.
I meant it like, "not socially acceptable" = being made fun of. Its seen like an excuse to be special even if you have no skills to demonstrate.
I meant it like, "not socially acceptable" = being made fun of. Its seen like an excuse to be special even if you have no skills to demonstrate.
I am a disabled person (U.S. based). I've had trouble holding jobs over the last two years. I can't reliably spend 40 hours a week in front of a desk. Hypothetically, an employer is required to provide a disabled individual with "reasonable accommodations" to complete their work tasks in the U.S., but because the only recourse a disabled individual has is legal in many cases companies are willing to risk it as they have far more legal resources than their employees.
I appreciate very much when a disabled individual speaks openly about their disability. It puts social pressure on everyone to appropriately accommodate the needs of their disabled employees. For me, it means that someday I might be treated with dignity and respect in my work again, like I was before I was disabled.
I appreciate very much when a disabled individual speaks openly about their disability. It puts social pressure on everyone to appropriately accommodate the needs of their disabled employees. For me, it means that someday I might be treated with dignity and respect in my work again, like I was before I was disabled.
I think like many of the current wave of "illiberal left" trends, it is a function of both space and time. I suppose the UK adopts US woke ideas because young people here are less likely to have religious conservative views than the EU average - reserving their prejudice for simple xenophobia.
Throughout the post the author emphasizes that anyone writing about autism should get perspectives from multiple different autistic people with different backgrounds. I don't think you and him differ in that perspective.
1. Your distaste is of course your prerogative! But I'd encourage you to read the piece and recognize that I go to great lengths to encourage people to seek out views beyond mine -- I even say that plenty of Autistic people disagree with me, and that their perspectives are valid. So your distaste is up to you, but I feel like you're misunderstanding my point
2. When you put "disabilities" in quotation marks you publicly assert that I'm faking my disabilties, or that something about being open about having disabilities makes those disabilities somehow less than real. Please don't do that, I work really hard.
3. I am intentional about my twitter bio, and there's a reason those terms are there. I'm working to dismantle oppressive neuronormative cultural norms that tell people like me we should be ashamed of ourselves and hide the things about us that make us different. Your distaste here isn't some sort of moral high ground, it's literally just an uncritical embrace of dominant cultural norms. Again, though, your distaste is your prerogative.
4. I "define myself" through a number of things on my twitter bio. Why are you focusing on two of them and then insisting that I'm defining myself via those two things? Further, why do you assume that what I choose to put in a twitter bio is what defines me as a person? That's a weird choice.
5. Finally, my project is literally about changing what's socially acceptable. I expect this kind of writing to make people who are committed to oppressive status quo uncomfortable. I literally don't care if me being who I am is "socially acceptable" where you live, or if it's "socially acceptable" where I live. That's the point. Fuck social acceptability, I'm a human being.
I hope that clears some of that up for you!
2. When you put "disabilities" in quotation marks you publicly assert that I'm faking my disabilties, or that something about being open about having disabilities makes those disabilities somehow less than real. Please don't do that, I work really hard.
3. I am intentional about my twitter bio, and there's a reason those terms are there. I'm working to dismantle oppressive neuronormative cultural norms that tell people like me we should be ashamed of ourselves and hide the things about us that make us different. Your distaste here isn't some sort of moral high ground, it's literally just an uncritical embrace of dominant cultural norms. Again, though, your distaste is your prerogative.
4. I "define myself" through a number of things on my twitter bio. Why are you focusing on two of them and then insisting that I'm defining myself via those two things? Further, why do you assume that what I choose to put in a twitter bio is what defines me as a person? That's a weird choice.
5. Finally, my project is literally about changing what's socially acceptable. I expect this kind of writing to make people who are committed to oppressive status quo uncomfortable. I literally don't care if me being who I am is "socially acceptable" where you live, or if it's "socially acceptable" where I live. That's the point. Fuck social acceptability, I'm a human being.
I hope that clears some of that up for you!
If somebody talking about their disability triggers you into such a strong political reaction, then maybe consider the possibility that you have let your own identity politics take too much control over your life.
> Also i have a distaste of the author listing their "disabilities" in their twitter bio.
People generally prefer disabled people not to talk about their disabilities or be public about them. But this sort of openness is incredibly useful. It's the internet and it's almost 2021. Let people talk about what they want to without being the internet police.
> Also i have a distaste of the author listing their "disabilities" in their twitter bio.
People generally prefer disabled people not to talk about their disabilities or be public about them. But this sort of openness is incredibly useful. It's the internet and it's almost 2021. Let people talk about what they want to without being the internet police.
People talking about things is good, but people adopting their atypical traits as their whole persona (even if just online) surely can't be healthy?
Is it hard to get citizenship where you live? Asking "for a friend". ;-)
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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.