Mindblindness goes both ways.
August 26, 2018 12:40 PM Subscribe
The ‘double empathy problem’ The author asks other authors and their readers to realize that most portrayals of this minority are from the outside and "research" done on characters use the equivalent of the orientalist gaze. Never allowed to speak for themselves, their behaviours are itemised, but not actually understood. The observer, meanwhile, is assumed to be neutral, authoritative and wise. This creates a simulacrum of the Orient, packaged for the consumption of the West. If it happened only once, it would barely be a problem; but reproduced endlessly, each skewed representation gives life and context to the next. The literary trope of autism has that same kind of memetic contagion.
When I come across instances of this folk understanding of autism, I am reminded of Edward Said’s 1978 description of the orientalist gaze, in which the exoticised subjects endure a kind of fascinated scrutiny, and are then rendered ‘without depth, in swollen detail’.
...
I am taught by books, films and TV that people have hidden depths, that their reactions do not always portray exactly what they’re feeling; I understand that people’s behaviour can be influenced by a whole range of factors that I know nothing about, and that I should not assume that they are ignorant, or stupid, or defective just because their responses do not match mine. What I ask is that the same courtesy is shown to autistics.
I’m not arguing that neurotypical writers should never create autistic characters (that would lead to even greater invisibility than we have at the moment). I’m suggesting that it’s time those characters reflected reality, based on careful research, and contact with real, autistic people. In the course of that research, writers might come across the occasional Don or Christopher, but they’ll also find far more diversity than they ever imagined; people brimming with creativity, empathy, wisdom and good humour; and people facing physical, sensory and intellectual challenges far greater than fiction has portrayed. The psychiatric literature is playing catch-up here, to the extent that it’s not a useful source of reference.
When I come across instances of this folk understanding of autism, I am reminded of Edward Said’s 1978 description of the orientalist gaze, in which the exoticised subjects endure a kind of fascinated scrutiny, and are then rendered ‘without depth, in swollen detail’.
...
I am taught by books, films and TV that people have hidden depths, that their reactions do not always portray exactly what they’re feeling; I understand that people’s behaviour can be influenced by a whole range of factors that I know nothing about, and that I should not assume that they are ignorant, or stupid, or defective just because their responses do not match mine. What I ask is that the same courtesy is shown to autistics.
I’m not arguing that neurotypical writers should never create autistic characters (that would lead to even greater invisibility than we have at the moment). I’m suggesting that it’s time those characters reflected reality, based on careful research, and contact with real, autistic people. In the course of that research, writers might come across the occasional Don or Christopher, but they’ll also find far more diversity than they ever imagined; people brimming with creativity, empathy, wisdom and good humour; and people facing physical, sensory and intellectual challenges far greater than fiction has portrayed. The psychiatric literature is playing catch-up here, to the extent that it’s not a useful source of reference.
The author's description of what it's like to navigate a room of neurotypicals makes her larger point crystal clear.
posted by kozad at 2:22 PM on August 26, 2018 [7 favorites]
posted by kozad at 2:22 PM on August 26, 2018 [7 favorites]
I like the character Townes — who is autistic — on the YouTube show Impulse,but I'm curious to know how autistic folks feel about the portrayal.
I've seen some positive commentary from people with autistic family members, but I haven't seen anything from anyone who themselves identified as autistic.
posted by thedward at 2:30 PM on August 26, 2018
I've seen some positive commentary from people with autistic family members, but I haven't seen anything from anyone who themselves identified as autistic.
posted by thedward at 2:30 PM on August 26, 2018
This is of course part of a broader problem, which is the tendency to describe normal human behavior in terms of pathology. "He's super OCD" or "she's so bipolar" are things that people routinely use as a sort of descriptive shorthand, even when those people fall far short of anything like a pathological condition.
What is especially consternating is that we see this tendency nowhere as frequently as we do among clinical psychologists (with whom I interact quite frequently). Rather than being professional arbiters who hold the line against public ignorance, clinicians are trained to parse apart symptoms and syndromes in their professional life and then persist in applying those filters to the "normal" (read: non-pathological) social interactions they observe in the rest of their lives. So, as experts, clinicians more or less give tacit permission to society at large to engage in armchair diagnosis.
That's a gross generalization, of course, and some clinicians are much more professional in this respect than others. I don't mean to paint the whole field with a single brush. But the fact that this kind of behavior persists in even a subset of clinicians is concerning. Imagine if an MD routinely described pale people as "tuberculotic," or some with a beer belly as having a "tumor." I think most people would agree that such characterizations would be insensitive and unprofessional. But for some reason, we are socially much more accepting of throwing around clinical diagnoses.
posted by belarius at 3:19 PM on August 26, 2018 [9 favorites]
What is especially consternating is that we see this tendency nowhere as frequently as we do among clinical psychologists (with whom I interact quite frequently). Rather than being professional arbiters who hold the line against public ignorance, clinicians are trained to parse apart symptoms and syndromes in their professional life and then persist in applying those filters to the "normal" (read: non-pathological) social interactions they observe in the rest of their lives. So, as experts, clinicians more or less give tacit permission to society at large to engage in armchair diagnosis.
That's a gross generalization, of course, and some clinicians are much more professional in this respect than others. I don't mean to paint the whole field with a single brush. But the fact that this kind of behavior persists in even a subset of clinicians is concerning. Imagine if an MD routinely described pale people as "tuberculotic," or some with a beer belly as having a "tumor." I think most people would agree that such characterizations would be insensitive and unprofessional. But for some reason, we are socially much more accepting of throwing around clinical diagnoses.
posted by belarius at 3:19 PM on August 26, 2018 [9 favorites]
Thank you for sharing this. I agree with kozad that her description of how neurotypicals "must be" was really enlightening in realizing how much the common descriptions of autistic people's behavior and emotions (or lack of emotions) are just projection.
posted by lazuli at 3:31 PM on August 26, 2018 [1 favorite]
posted by lazuli at 3:31 PM on August 26, 2018 [1 favorite]
Nailed it.
posted by Quackles at 3:35 PM on August 26, 2018 [1 favorite]
posted by Quackles at 3:35 PM on August 26, 2018 [1 favorite]
I have seen "autistic" used as a slur in the same way that I remember "retarded" being used as a slur in the 1980s, when I think the r-word was losing the last vestiges of its validity as a technical term. It makes me sad.
I thought that Curious Incident was brilliant, but I like to think I was smart enough to realize that one depiction didn't encapsulate every person's neurodiversity.
posted by fantabulous timewaster at 4:06 PM on August 26, 2018 [3 favorites]
I thought that Curious Incident was brilliant, but I like to think I was smart enough to realize that one depiction didn't encapsulate every person's neurodiversity.
posted by fantabulous timewaster at 4:06 PM on August 26, 2018 [3 favorites]
This was great. I’m gonna be digesting it for a while.
I’ve been told that, if the diagnostic criteria for girls had existed when I was a kid, I might have ended up with an autism spectrum diagnosis, but that the ways I present as maybe on the spectrum are also things that can result from developmental trauma. Which: again, with the framing.
I’ve never fit entirely into a clear diagnostic box, although developmental trauma and sensory processing problems seem like the best fit. But I know I’m not the only one wandering around wondering what they are, and how my inner world compares to others. I’ve come up with my own metaphors and things to try to explain myself to people, and whether or not people treat that as the invitation it is has become kind of a good litmus test, for me. And if I had to pick two characteristics that I think I have in excess, and that explain how my experience often differs from others, it would be sensitivity (or an inability to filter input) and earnestness.
But I’ll always wonder. Books, and essays like these, help.
posted by schadenfrau at 5:01 PM on August 26, 2018 [11 favorites]
I’ve been told that, if the diagnostic criteria for girls had existed when I was a kid, I might have ended up with an autism spectrum diagnosis, but that the ways I present as maybe on the spectrum are also things that can result from developmental trauma. Which: again, with the framing.
I’ve never fit entirely into a clear diagnostic box, although developmental trauma and sensory processing problems seem like the best fit. But I know I’m not the only one wandering around wondering what they are, and how my inner world compares to others. I’ve come up with my own metaphors and things to try to explain myself to people, and whether or not people treat that as the invitation it is has become kind of a good litmus test, for me. And if I had to pick two characteristics that I think I have in excess, and that explain how my experience often differs from others, it would be sensitivity (or an inability to filter input) and earnestness.
But I’ll always wonder. Books, and essays like these, help.
posted by schadenfrau at 5:01 PM on August 26, 2018 [11 favorites]
This was so fucking spot-on for me:
To an autistic viewer like me, neurotypical life can seem astonishingly unemotional. ... From my end of the conversation, the constant chatter seems colourless and dry. Instead of discussing their driving passions, my companions prefer to gossip about near-strangers, or to compete for airtime at the expense of listening and perhaps learning something useful. They are endlessly obsessed with their status and their identification with their tribe. As the conversation moves on to current affairs, people stumble over themselves to agree with the most influential person at the table. They seem able to assimilate news stories that I find too tragic to digest, and to flip them glibly into humour, finding glee in the kind of interpersonal politics that make the air feel thick to me. To me, their company seems superficial, blunt, emotionless.
I, too, was diagnosed as "on the spectrum" in my late 30s. The more I've learned about my "condition" and the way people view it, the more I feel as though qualities such as emotionless or inability to relate to others is the dominant symptom of neurotypicals, not autistic people.
Also like this author, I've almost never found any supposedly "autistic" characters in pop culture very relatable: not Rain Man, not Sheldon from Big Bang, not whoever that kid is in that new sappy drama The Good Doctor. The only autistic character that I ever identified with was Abed from Community; in fact, it was watching Community and Abed that made me start to think that I might be on the spectrum in the first place.
posted by Saxon Kane at 5:19 PM on August 26, 2018 [21 favorites]
To an autistic viewer like me, neurotypical life can seem astonishingly unemotional. ... From my end of the conversation, the constant chatter seems colourless and dry. Instead of discussing their driving passions, my companions prefer to gossip about near-strangers, or to compete for airtime at the expense of listening and perhaps learning something useful. They are endlessly obsessed with their status and their identification with their tribe. As the conversation moves on to current affairs, people stumble over themselves to agree with the most influential person at the table. They seem able to assimilate news stories that I find too tragic to digest, and to flip them glibly into humour, finding glee in the kind of interpersonal politics that make the air feel thick to me. To me, their company seems superficial, blunt, emotionless.
I, too, was diagnosed as "on the spectrum" in my late 30s. The more I've learned about my "condition" and the way people view it, the more I feel as though qualities such as emotionless or inability to relate to others is the dominant symptom of neurotypicals, not autistic people.
Also like this author, I've almost never found any supposedly "autistic" characters in pop culture very relatable: not Rain Man, not Sheldon from Big Bang, not whoever that kid is in that new sappy drama The Good Doctor. The only autistic character that I ever identified with was Abed from Community; in fact, it was watching Community and Abed that made me start to think that I might be on the spectrum in the first place.
posted by Saxon Kane at 5:19 PM on August 26, 2018 [21 favorites]
I find myself in the 'desribe my family' tightrope because I married someone who is disabled (by that I mean the US definition of being unable to work and on disability benefits) due to issues related to autism but not just that. And I'm constantly having to explain how someone can be utterly brilliant AND capible of loving relationships AND able to be a great mom but NOT able to work a full time job in the traditional sense.
Actually I just avoid it because there isn't a great popular culture reference point for this situation. It's too nuanced and there is so much judgement. But she is my family and I love her to pieces.
It's easier to not explain my family at all or state she's a stay at home mom, without getting into all of the details of what impacts her daily life performance (i wish I had a better term,
but I don't at the moment!) and what she does well and what she needs support with. But we all do some things well and need support in other areas. Her just aren't the neurotypical 'expected' areas. We definitely have ways to cope, adapt and it works for us.
But there isn't a good way to communicate that experience without a long essay.
posted by AlexiaSky at 6:12 PM on August 26, 2018 [6 favorites]
Actually I just avoid it because there isn't a great popular culture reference point for this situation. It's too nuanced and there is so much judgement. But she is my family and I love her to pieces.
It's easier to not explain my family at all or state she's a stay at home mom, without getting into all of the details of what impacts her daily life performance (i wish I had a better term,
but I don't at the moment!) and what she does well and what she needs support with. But we all do some things well and need support in other areas. Her just aren't the neurotypical 'expected' areas. We definitely have ways to cope, adapt and it works for us.
But there isn't a good way to communicate that experience without a long essay.
posted by AlexiaSky at 6:12 PM on August 26, 2018 [6 favorites]
I was especially taken by this paragraph, discussing the book To Siri With Love, which was heavily criticized by autistic people, to whom the author responded that the "book wasn't really written for an autistic audience":
And yet the cover of To Siri with Love brims with praise for the author’s emotional intelligence, calling it ‘moving’, ‘touching’, ‘warm’ and ‘wise’, telling us that it ‘will make your heart brim, and then break it’. These are the words of a neurotypical society talking to itself, and praising its own ability to love the strange creature portrayed in this book. Here, we glimpse the space where discussions about autistic people take place: a closed shop, in which we are subjected to intrusive and patronising comment, while being explicitly excluded from the discourse ourselves.posted by Halloween Jack at 6:28 PM on August 26, 2018 [15 favorites]
As a person with ASD, I loath these kinds of articles.
It's a well written essay, to be sure. And it's one that expresses very real criticisms of some of the books that purport to deal with ASD. _The Curious Incident of the Dog in the Night Time_ deserves to die in the fires of history. But so do many of the narratives she thinks are representative of the real ASD experience.
It's also an essay that -- by its nature -- wants to present a contrast of "us" vs. "them". There is 'neurotypical society' and there is (presumably) 'autistic society', and those of us with ASD presumably are outside the first and inside the other. Those of us with ASD find our neurotypical coworkers' conversations dull and uninteresting. Instead, we sit in the break room together and talk about the nuances of mathematic calculations or baseball statistics or some such. (Both me and my former mentor -- both on the autism spectrum -- are fond of gossip. He was particularly dangerous, because he never talked unless he liked you, in which case he could tell you everything.) We read each other like the backs of our hands, and we form some sort of stupidly close kinship group. We act, in short, just like the Deaf community, which is what inspired disability theory to come up with this ridiculous narrative in the first place.
I exaggerate, of course, but the ideas are still implicit in these kinds of articles. (And I mean "these kinds." There are so goddamn many of them, and I don't go out seeking them.) It's annoying, and it makes me want to pull my hair out.
The same goes for the resources the author points you to. All of them are memoirs written by people with ASD who identify as people with ASD and who see having ASD as being a big part of themselves. (*) That's lovely, and it certainly reflects the experiences of some people with ASD, but they're as illustrative of the ASD experience as a bunch of coming-out narratives are of the year-to-year experience of being queer.
Off the top of my head, I can name you a handful of characters who almost certainly have ASD in fiction works -- Anya from Buffy, Seraphina from Hartman's Seraphina, Renarin from The Stormlight Archives, Jeremy from Thief of Time. None of them in context have been diagnosed, because, hey, fantasy novels. In two of the cases, I'm not even sure the authors intended it. But another reason none of the characters have been diagnosed is because we're about ten years from books being published about characters with ASD which aren't simultaneously about ASD. We're still in that phase where every single goddamn narrative needs to involve coming out, as it were.
It sucks, but it will be over eventually. As will the endless memoirs that May and others seem to feel the need to publish. Good riddance to all of it.
(*) Just as history can't be understood in the moment, revelations about oneself take time to digest. Lots of time to digest. It took me a good ten-plus years after being diagnosed to understand what having ASD did and didn't mean for me. May has been diagnosed for three years now. She has less authority to speak about what ASD means than I do, which is probably why she feels like she has any authority to speak about it at all.
posted by steady-state strawberry at 8:15 PM on August 26, 2018 [24 favorites]
It's a well written essay, to be sure. And it's one that expresses very real criticisms of some of the books that purport to deal with ASD. _The Curious Incident of the Dog in the Night Time_ deserves to die in the fires of history. But so do many of the narratives she thinks are representative of the real ASD experience.
It's also an essay that -- by its nature -- wants to present a contrast of "us" vs. "them". There is 'neurotypical society' and there is (presumably) 'autistic society', and those of us with ASD presumably are outside the first and inside the other. Those of us with ASD find our neurotypical coworkers' conversations dull and uninteresting. Instead, we sit in the break room together and talk about the nuances of mathematic calculations or baseball statistics or some such. (Both me and my former mentor -- both on the autism spectrum -- are fond of gossip. He was particularly dangerous, because he never talked unless he liked you, in which case he could tell you everything.) We read each other like the backs of our hands, and we form some sort of stupidly close kinship group. We act, in short, just like the Deaf community, which is what inspired disability theory to come up with this ridiculous narrative in the first place.
I exaggerate, of course, but the ideas are still implicit in these kinds of articles. (And I mean "these kinds." There are so goddamn many of them, and I don't go out seeking them.) It's annoying, and it makes me want to pull my hair out.
The same goes for the resources the author points you to. All of them are memoirs written by people with ASD who identify as people with ASD and who see having ASD as being a big part of themselves. (*) That's lovely, and it certainly reflects the experiences of some people with ASD, but they're as illustrative of the ASD experience as a bunch of coming-out narratives are of the year-to-year experience of being queer.
Off the top of my head, I can name you a handful of characters who almost certainly have ASD in fiction works -- Anya from Buffy, Seraphina from Hartman's Seraphina, Renarin from The Stormlight Archives, Jeremy from Thief of Time. None of them in context have been diagnosed, because, hey, fantasy novels. In two of the cases, I'm not even sure the authors intended it. But another reason none of the characters have been diagnosed is because we're about ten years from books being published about characters with ASD which aren't simultaneously about ASD. We're still in that phase where every single goddamn narrative needs to involve coming out, as it were.
It sucks, but it will be over eventually. As will the endless memoirs that May and others seem to feel the need to publish. Good riddance to all of it.
(*) Just as history can't be understood in the moment, revelations about oneself take time to digest. Lots of time to digest. It took me a good ten-plus years after being diagnosed to understand what having ASD did and didn't mean for me. May has been diagnosed for three years now. She has less authority to speak about what ASD means than I do, which is probably why she feels like she has any authority to speak about it at all.
posted by steady-state strawberry at 8:15 PM on August 26, 2018 [24 favorites]
In this anaerobic environment, the qualities routinely assigned to autistic people – lack of empathy, unworldliness, humourlessness, the inability to love – are the exact inverse of the qualities that a neurotypical society most prizes.
They are also the exact inverse of the qualities I've ever discerned in anybody I've met face to face who has either described themselves or been described by their parents as being on the spectrum.
posted by flabdablet at 10:32 PM on August 26, 2018 [6 favorites]
They are also the exact inverse of the qualities I've ever discerned in anybody I've met face to face who has either described themselves or been described by their parents as being on the spectrum.
posted by flabdablet at 10:32 PM on August 26, 2018 [6 favorites]
We need more books by all kinds of non-neurotypicals, so that we relatively neurotypical sorts can be helped to understand what it's like, or how many different flavors of "what it's like" there are. To carry on with the Said parallel, being able to read writers like Césaire, Fanon, Ngugi, Napa, al-Saadawi, and so forth (not that the experience of any of them can stand for that of all colonized people everywhere), helps. I don't think anyone sensitive to others' suffering and attached to justice wants to remain ignorant of how different lives feel from the inside. But we need as good testimony on the matter as language and imagery can afford.
posted by homerica at 1:46 AM on August 27, 2018 [2 favorites]
posted by homerica at 1:46 AM on August 27, 2018 [2 favorites]
It's also an essay that -- by its nature -- wants to present a contrast of "us" vs. "them". There is 'neurotypical society' and there is (presumably) 'autistic society', and those of us with ASD presumably are outside the first and inside the other.
In part, OK, maybe. It's hard to argue that May doesn't indulge in a fair bit of that. But she also suggests a much subtler and more productive model: "If we see social situations as dynamically constructed between the participants, rather than defined by static, universal rules, it is impossible for one person to have a social ‘deficit’; the failure lies in the mutual creation of a social reality."
That right there is an insight I can take away with me, and apply usefully to all sorts of situations. It also happens to dovetail pretty nicely with the more-or-less power-based, Foucauldian read on "aberrant" behaviors and individuals I tend to unconsciously gravitate towards.
I dunno. I don't mind admitting that I've been the "sociologist" in the anecdote she opens with, and I found the essay helpful.
posted by adamgreenfield at 3:04 AM on August 27, 2018 [18 favorites]
In part, OK, maybe. It's hard to argue that May doesn't indulge in a fair bit of that. But she also suggests a much subtler and more productive model: "If we see social situations as dynamically constructed between the participants, rather than defined by static, universal rules, it is impossible for one person to have a social ‘deficit’; the failure lies in the mutual creation of a social reality."
That right there is an insight I can take away with me, and apply usefully to all sorts of situations. It also happens to dovetail pretty nicely with the more-or-less power-based, Foucauldian read on "aberrant" behaviors and individuals I tend to unconsciously gravitate towards.
I dunno. I don't mind admitting that I've been the "sociologist" in the anecdote she opens with, and I found the essay helpful.
posted by adamgreenfield at 3:04 AM on August 27, 2018 [18 favorites]
I dunno, steady-state-strawberry, but your reaction reads to me as an ASD version of "F you, I got mine". As in, perhaps you have come to terms with your diagnosis after a decade or so, and live in a comfortable enough environment, but that is a passing narrative, not a coming-out one.
posted by mneekadon at 3:42 AM on August 27, 2018 [1 favorite]
posted by mneekadon at 3:42 AM on August 27, 2018 [1 favorite]
I mean, you act like this topic has been done to death, when in fact, most NTs have never even thought about it for a second. You can't just skip to the part where visibly neurodiverse people are actually treated as people, because we're not there yet.
posted by mneekadon at 3:57 AM on August 27, 2018 [7 favorites]
posted by mneekadon at 3:57 AM on August 27, 2018 [7 favorites]
As in, perhaps you have come to terms with your diagnosis after a decade or so, and live in a comfortable enough environment, but that is a passing narrative, not a coming-out one.
Yes. That's my point. Her narrative -- the only narrative she knows -- is one that involves coming out.
The day to day narrative that involves living with neurotypicals involves passing. It's the one shared by the ones in my gaming group, the mentor I've had (in his 70s, almost certainly undiagnosed), the professors I've met, the classmates and coworkers and friends and enemies and acquaintances I've had who are all pretty much instantly diagnosable with ASD. To live involves passing, as it were, because the vast majority of people you meet don't and shouldn't care about what your diagnosis is, and because locking yourself in an online ghetto only works for people who don't mind the lack of face to face contact and who fit into the groups that exist online.
I talk about this topic like it's been done to death because I've seen it be done to death. I've seen it be done to death for the past decade, and it's never going to stop being done to death so long as memoirs like May's are written and published and pointed to as some sort of experience that ought to be seen as insightful.
posted by steady-state strawberry at 4:11 AM on August 27, 2018 [4 favorites]
Yes. That's my point. Her narrative -- the only narrative she knows -- is one that involves coming out.
The day to day narrative that involves living with neurotypicals involves passing. It's the one shared by the ones in my gaming group, the mentor I've had (in his 70s, almost certainly undiagnosed), the professors I've met, the classmates and coworkers and friends and enemies and acquaintances I've had who are all pretty much instantly diagnosable with ASD. To live involves passing, as it were, because the vast majority of people you meet don't and shouldn't care about what your diagnosis is, and because locking yourself in an online ghetto only works for people who don't mind the lack of face to face contact and who fit into the groups that exist online.
I talk about this topic like it's been done to death because I've seen it be done to death. I've seen it be done to death for the past decade, and it's never going to stop being done to death so long as memoirs like May's are written and published and pointed to as some sort of experience that ought to be seen as insightful.
posted by steady-state strawberry at 4:11 AM on August 27, 2018 [4 favorites]
I've seen it be done to death for the past decade, and it's never going to stop being done to death so long as memoirs like May's are written and published and pointed to as some sort of experience that ought to be seen as insightful.
Forgive me, but this strikes me as awfully unfair.
I don't personally care in the slightest about what "ought to be seen as insightful," but I am right here actually telling you that yes, I found May's offering insightful, helpful and potentially practically useful. I hope you're not implying that I'm somehow propagating an injustice in doing so.
posted by adamgreenfield at 4:28 AM on August 27, 2018 [9 favorites]
Forgive me, but this strikes me as awfully unfair.
I don't personally care in the slightest about what "ought to be seen as insightful," but I am right here actually telling you that yes, I found May's offering insightful, helpful and potentially practically useful. I hope you're not implying that I'm somehow propagating an injustice in doing so.
posted by adamgreenfield at 4:28 AM on August 27, 2018 [9 favorites]
I'm sorry this topic bores you so. I've read many similar articles, but this one in particular does a great job of summarizing and debunking the weird combination of condescension and colonialist awe with which autistics are regarded in poplar culture, and describes some of her actual experience, which is clearly foreign to many readers who don't have any clue what it feels like.
While there has been an increase in diagnosis, for most of us passing is exhausting and imperfect. Congrats, I am glad "Suck it up, buttercup" works for you.
posted by mneekadon at 4:29 AM on August 27, 2018 [7 favorites]
While there has been an increase in diagnosis, for most of us passing is exhausting and imperfect. Congrats, I am glad "Suck it up, buttercup" works for you.
posted by mneekadon at 4:29 AM on August 27, 2018 [7 favorites]
Mod note: A couple deleted. Sorry, but pursuing a discussion of businesses as autistic or neurotypical is actually a derail here, despite the author opening with this example of hurtful or frustrating unexamined chatter.
posted by taz (staff) at 6:54 AM on August 27, 2018 [1 favorite]
posted by taz (staff) at 6:54 AM on August 27, 2018 [1 favorite]
That's lovely, and it certainly reflects the experiences of some people with ASD, but they're as illustrative of the ASD experience as a bunch of coming-out narratives are of the year-to-year experience of being queer.
Yeah, as a queer person, I either don't get the point you're trying to make here or the comparison isn't a good one, because I still find coming-out narratives to be incredibly relevant to my ongoing experiences, because that is not a process that ever ends. You are always having to deal with new people in your life who don't know. You're always having to deal with people in your life who have known for basically forever and are still idiots about it. I'm not actually thinking autism is that different, but I don't get where you're coming from on this idea that these things stop being relevant. Totally get the point that there should be more variety of narrative, but you've gotten way past calling for variety here. Please don't compare this to queerness and then paint passing as some kind of desirable alternative end state. Suspect that there are similarities here, though, in that not everybody is likely to want that to be the end state, and that for those who don't, "coming out" is not some kind of historical event you eventually outgrow.
posted by Sequence at 7:27 AM on August 27, 2018 [12 favorites]
Yeah, as a queer person, I either don't get the point you're trying to make here or the comparison isn't a good one, because I still find coming-out narratives to be incredibly relevant to my ongoing experiences, because that is not a process that ever ends. You are always having to deal with new people in your life who don't know. You're always having to deal with people in your life who have known for basically forever and are still idiots about it. I'm not actually thinking autism is that different, but I don't get where you're coming from on this idea that these things stop being relevant. Totally get the point that there should be more variety of narrative, but you've gotten way past calling for variety here. Please don't compare this to queerness and then paint passing as some kind of desirable alternative end state. Suspect that there are similarities here, though, in that not everybody is likely to want that to be the end state, and that for those who don't, "coming out" is not some kind of historical event you eventually outgrow.
posted by Sequence at 7:27 AM on August 27, 2018 [12 favorites]
Those with an interest in these topics might find some worthwhile further reading under the hashtag #TakeTheMaskOff.
posted by shenderson at 10:23 AM on August 27, 2018 [2 favorites]
posted by shenderson at 10:23 AM on August 27, 2018 [2 favorites]
It’s hard to imagine any other situation in which a group of educated, liberal adults would conjure a marginalised group as a shorthand for awful. Imagine describing an organisation as institutionally black, institutionally female or institutionally Muslim.
Asperger syndrome has replaced schizophrenia and bipolar disorder as the weapon of choice for the amateur diagnostician.
In the closed shop, autistic offence doesn’t yet carry the same mainstream clout as, say, racist or homophobic offence.
These comments are disquieting and inaccurate. When talking about one's own struggles, there's no need to hold up those of other groups as some kind of ruler in order to establish legitimacy and urgency. I don't mean to police the way other people talk about their oppression, but these statements are harmful.
posted by typify at 10:29 AM on August 27, 2018 [4 favorites]
Asperger syndrome has replaced schizophrenia and bipolar disorder as the weapon of choice for the amateur diagnostician.
In the closed shop, autistic offence doesn’t yet carry the same mainstream clout as, say, racist or homophobic offence.
These comments are disquieting and inaccurate. When talking about one's own struggles, there's no need to hold up those of other groups as some kind of ruler in order to establish legitimacy and urgency. I don't mean to police the way other people talk about their oppression, but these statements are harmful.
posted by typify at 10:29 AM on August 27, 2018 [4 favorites]
> These comments are disquieting and inaccurate. When talking about one's own struggles, there's no need to hold up those of other groups as some kind of ruler in order to establish legitimacy and urgency. I don't mean to police the way other people talk about their oppression, but these statements are harmful.
I recall an anecdote shared by an activist, wherein several actually autistic activists were at the table with a few Parents of Autistic People.
They were discussing how autistic people should be referred to. The actually autistic persons at the table were overwhelmingly in favor of "autistic person" because that is what we are. The PAPs held out, insisting that "person with autism" was better, more appropriate, more polite.
"It's just," said one mother, after several autistic persons had explained why they preferred 'autistic person,' "When I hear people call my child autistic, I just get so upset!"
Who would you side with, in that anecdote, I wonder?
posted by a power-tie-wearing she-capitalist at 11:04 AM on August 27, 2018 [5 favorites]
I recall an anecdote shared by an activist, wherein several actually autistic activists were at the table with a few Parents of Autistic People.
They were discussing how autistic people should be referred to. The actually autistic persons at the table were overwhelmingly in favor of "autistic person" because that is what we are. The PAPs held out, insisting that "person with autism" was better, more appropriate, more polite.
"It's just," said one mother, after several autistic persons had explained why they preferred 'autistic person,' "When I hear people call my child autistic, I just get so upset!"
Who would you side with, in that anecdote, I wonder?
posted by a power-tie-wearing she-capitalist at 11:04 AM on August 27, 2018 [5 favorites]
I think the point is, more explicitly, that no parent would ever be upset about "African person" vs. "person of African descent." That the anecdote points out that it is so abhorrent to be autistic in mainstream society to the extent where naming it is offensive to some people's sensibilities.
But to me this argument is disanalogous. 1) This argument seems to relate to visibility; it is abhorrent to be black and/or Muslim in American society. People skirt around Blackness and naming it. 2) Most importantly, this doesn't address why we have to compare the oppression of autistic people to other groups in some linear fashion.
posted by typify at 11:47 AM on August 27, 2018 [2 favorites]
But to me this argument is disanalogous. 1) This argument seems to relate to visibility; it is abhorrent to be black and/or Muslim in American society. People skirt around Blackness and naming it. 2) Most importantly, this doesn't address why we have to compare the oppression of autistic people to other groups in some linear fashion.
posted by typify at 11:47 AM on August 27, 2018 [2 favorites]
I don't mean to police the way other people talk about their oppression,
Then don't.
posted by Homo neanderthalensis at 11:51 AM on August 27, 2018 [2 favorites]
Then don't.
posted by Homo neanderthalensis at 11:51 AM on August 27, 2018 [2 favorites]
typify, do you believe that autistic people are a marginalized group?
posted by a power-tie-wearing she-capitalist at 12:23 PM on August 27, 2018 [1 favorite]
posted by a power-tie-wearing she-capitalist at 12:23 PM on August 27, 2018 [1 favorite]
aptwshc, of course. I just think this rhetoric has been employed so many times and is harmful every time, because it's reductive and unempathetic.
I sense a derail flag coming up.
posted by typify at 12:40 PM on August 27, 2018 [1 favorite]
I sense a derail flag coming up.
posted by typify at 12:40 PM on August 27, 2018 [1 favorite]
What, exactly, is reductive and unempathic about stating that autistic people are routinely framed as Other and dismissed and autism used as a negative descriptor in ways we would never tolerate people speaking about other marginalized groups - unless you feel that autism is not a marginalized group, or our marginalization is not as severe as it could be, and therefore we shouldn't make comparisons?
posted by a power-tie-wearing she-capitalist at 12:45 PM on August 27, 2018 [3 favorites]
posted by a power-tie-wearing she-capitalist at 12:45 PM on August 27, 2018 [3 favorites]
It’s hard to imagine any other situation in which a group of educated, liberal adults would conjure a marginalised group as a shorthand for awful. Imagine describing an organisation as institutionally black, institutionally female or institutionally Muslim.
Has this author talked to anyone black and/or Muslim? These comments are not true and undercut pain that people have experienced in order to use other marginalized groups as a rhetorical bludgeoning tool, which I find unempathetic.
in ways we would never tolerate people speaking about other marginalized groups
We *do* tolerate this. For instance, when talking about cat-calling or sexism, people put on vocal blackface and adopt AAVE. Many liberal people do not blink. Or when talking about representation in media, black people are often used as some sort of metric in comparison in East Asian people.
I'm not opposed to comparisons, like if one wants to point out that autistic people non-Asians in America are more likely to be economically disadvantaged compared to non-autistic Asians. It's not that I believe that the oppression of autistic people are not as severe as it could be; it's just that the comparisons are so whole-sale and dimensionless. Like, no side-mention that ASD diagnoses are made mostly on white bodies, but let's compare the comments that one group faces vs. those of another, like these groups are not intersecting.
posted by typify at 1:20 PM on August 27, 2018 [5 favorites]
Has this author talked to anyone black and/or Muslim? These comments are not true and undercut pain that people have experienced in order to use other marginalized groups as a rhetorical bludgeoning tool, which I find unempathetic.
in ways we would never tolerate people speaking about other marginalized groups
We *do* tolerate this. For instance, when talking about cat-calling or sexism, people put on vocal blackface and adopt AAVE. Many liberal people do not blink. Or when talking about representation in media, black people are often used as some sort of metric in comparison in East Asian people.
I'm not opposed to comparisons, like if one wants to point out that autistic people non-Asians in America are more likely to be economically disadvantaged compared to non-autistic Asians. It's not that I believe that the oppression of autistic people are not as severe as it could be; it's just that the comparisons are so whole-sale and dimensionless. Like, no side-mention that ASD diagnoses are made mostly on white bodies, but let's compare the comments that one group faces vs. those of another, like these groups are not intersecting.
posted by typify at 1:20 PM on August 27, 2018 [5 favorites]
yes i welcomed the discussion of autistic people in fiction and the double empathy problem but was also less keen on the analogies with racism etc
imo one problem with using analogies to other oppressions to make clear the ways autistic people are oppressed and how normalised that oppression is, is that it inadvertently reinforces the idea of the autistic person as eg white, not subject to the orientalist gaze. there's a couple of articles on this as a broad topic though not specific to autism
if people were interested in the discussion of autistic representation in fiction, i liked this article which discusses similar topics
posted by mosswinter at 1:35 PM on August 27, 2018 [2 favorites]
imo one problem with using analogies to other oppressions to make clear the ways autistic people are oppressed and how normalised that oppression is, is that it inadvertently reinforces the idea of the autistic person as eg white, not subject to the orientalist gaze. there's a couple of articles on this as a broad topic though not specific to autism
if people were interested in the discussion of autistic representation in fiction, i liked this article which discusses similar topics
posted by mosswinter at 1:35 PM on August 27, 2018 [2 favorites]
Like, no side-mention that ASD diagnoses are made mostly on white bodies, but let's compare the comments that one group faces vs. those of another, like these groups are not intersecting.
Are you implying only white people are autistic? Because that is racist as hell.
posted by Homo neanderthalensis at 1:45 PM on August 27, 2018 [1 favorite]
Are you implying only white people are autistic? Because that is racist as hell.
posted by Homo neanderthalensis at 1:45 PM on August 27, 2018 [1 favorite]
I assume he's saying that white people are more likely to get a diagnosis. Which is pretty much the case in most places.
posted by ambrosen at 1:47 PM on August 27, 2018 [4 favorites]
posted by ambrosen at 1:47 PM on August 27, 2018 [4 favorites]
Are you implying only white people are autistic?
Not to speak for typify, but I don't believe they are -- there is well-documented racism at work in that white people get *diagnosed* at higher rates than POC, in the same way that boys get diagnosed at higher rates than girls, due to this stereotyped perception of autism being something that primarily affects white males. Obviously this isn't at all true, but it's a harmful perception reflected in diagnosis rate and access to support.
posted by Cheerwell Maker at 1:56 PM on August 27, 2018 [5 favorites]
Not to speak for typify, but I don't believe they are -- there is well-documented racism at work in that white people get *diagnosed* at higher rates than POC, in the same way that boys get diagnosed at higher rates than girls, due to this stereotyped perception of autism being something that primarily affects white males. Obviously this isn't at all true, but it's a harmful perception reflected in diagnosis rate and access to support.
posted by Cheerwell Maker at 1:56 PM on August 27, 2018 [5 favorites]
For instance, when talking about cat-calling or sexism, people put on vocal blackface and adopt AAVE.
whut
posted by adamgreenfield at 2:01 PM on August 27, 2018 [1 favorite]
whut
posted by adamgreenfield at 2:01 PM on August 27, 2018 [1 favorite]
For instance, when talking about cat-calling or sexism, people put on vocal blackface and adopt AAVE.
whut
We see it on MetaFilter. More often with sexist stuff than racist stuff, but people will adopt a very ironic tone and do a sort of double-twist like "This is what the oppressors think that the people they are oppressing are thinking/saying" and it can be interesting in a seven dimensional chess sort of way but to people who are just sort of reading the word on a screen it can come across as pretty insensitive. I'm not sure if this is what typify is talking about but I think i t may be.
posted by jessamyn at 2:05 PM on August 27, 2018 [3 favorites]
whut
We see it on MetaFilter. More often with sexist stuff than racist stuff, but people will adopt a very ironic tone and do a sort of double-twist like "This is what the oppressors think that the people they are oppressing are thinking/saying" and it can be interesting in a seven dimensional chess sort of way but to people who are just sort of reading the word on a screen it can come across as pretty insensitive. I'm not sure if this is what typify is talking about but I think i t may be.
posted by jessamyn at 2:05 PM on August 27, 2018 [3 favorites]
I interpreted them as saying — typify, please correct me if I've misunderstood — that white people, when describing street harassment, will put on "black" voices in ostensible imitation of the harasser, and that the other white people witnessing this behavior will accept or allow it.
In all my travels among white liberals, long and taxing though they may surely have been, I've never seen any such thing, and I would have to question the judgment of anyone who asserted that this is common or unremarkable behavior. But then, maybe I live in a bubble.
posted by adamgreenfield at 2:20 PM on August 27, 2018
In all my travels among white liberals, long and taxing though they may surely have been, I've never seen any such thing, and I would have to question the judgment of anyone who asserted that this is common or unremarkable behavior. But then, maybe I live in a bubble.
posted by adamgreenfield at 2:20 PM on August 27, 2018
Examples:
https://youtu.be/lUJ24mblCLY
https://youtu.be/p8uOErVShiE
https://youtu.be/2XvOis5EDhM
These videos pop up on my FB feed occassionally. Someone will adopt AAVE when acting as an aggressor.
posted by typify at 2:47 PM on August 27, 2018
https://youtu.be/lUJ24mblCLY
https://youtu.be/p8uOErVShiE
https://youtu.be/2XvOis5EDhM
These videos pop up on my FB feed occassionally. Someone will adopt AAVE when acting as an aggressor.
posted by typify at 2:47 PM on August 27, 2018
Maybe this would be a helpful perspective?
Here's a description of the author: Mrs. Kerima Çevik is currently a blogger for disability rights, autistic inclusion, accommodation, communication rights, and representation. A parent activist, editor and contributing writer who consults on Autism and Ethnicity, she blogs on topics of critical race, intersectionality, autism and social justice. An independent researcher, she focuses on shining a light on disparities in quality of life for marginalized intersected disabled populations and their families through grassroots community building activities and pay it forward activism models. She is a married mother of two children, and world traveler currently homeschooling her adventurous son Mustafa, who is intensely Autistic and nonspeaking. [more at the link in the About Mrs. C page]
She is pretty passionate about both intersectionalities [in addition to a few others]. Maybe she can shed light on some of what has been discussed here?
posted by RuvaBlue at 11:32 PM on August 27, 2018
Here's a description of the author: Mrs. Kerima Çevik is currently a blogger for disability rights, autistic inclusion, accommodation, communication rights, and representation. A parent activist, editor and contributing writer who consults on Autism and Ethnicity, she blogs on topics of critical race, intersectionality, autism and social justice. An independent researcher, she focuses on shining a light on disparities in quality of life for marginalized intersected disabled populations and their families through grassroots community building activities and pay it forward activism models. She is a married mother of two children, and world traveler currently homeschooling her adventurous son Mustafa, who is intensely Autistic and nonspeaking. [more at the link in the About Mrs. C page]
She is pretty passionate about both intersectionalities [in addition to a few others]. Maybe she can shed light on some of what has been discussed here?
posted by RuvaBlue at 11:32 PM on August 27, 2018
Sorry for posting x2 in a row but another part of her self description may further encourage people commenting here to read her blog:
Mrs. Çevik’s professional and personal experience spans several countries, continents, and cultures, and includes work in translation and localization, project management, language instruction, and information systems management. She insists on the title 'Mrs.' after a series of encounters with school staff and administration at her son's former educational placements. These individuals continually marked paperwork and made comments erroneously indicating she was not married to her son's father, and promoting the idea that their son was conceived outside of marriage based on of the presumption that all women her skin color produced children outside a formal union. In this case 'Mrs.' is a protest action word.
Also sorry that I don't know how to get the special character 'C' for her name Çevik to label her self description page more properly [where I put "more at the link in the About Mrs. C page" in brackets].
In addition: For the visually impaired or blind she does a good job of describing her photos or pictures on the blog. So, that could make her page that much more accessible. I really want to encourage people to look over her blog! (obviously)
posted by RuvaBlue at 11:59 PM on August 27, 2018
Mrs. Çevik’s professional and personal experience spans several countries, continents, and cultures, and includes work in translation and localization, project management, language instruction, and information systems management. She insists on the title 'Mrs.' after a series of encounters with school staff and administration at her son's former educational placements. These individuals continually marked paperwork and made comments erroneously indicating she was not married to her son's father, and promoting the idea that their son was conceived outside of marriage based on of the presumption that all women her skin color produced children outside a formal union. In this case 'Mrs.' is a protest action word.
Also sorry that I don't know how to get the special character 'C' for her name Çevik to label her self description page more properly [where I put "more at the link in the About Mrs. C page" in brackets].
In addition: For the visually impaired or blind she does a good job of describing her photos or pictures on the blog. So, that could make her page that much more accessible. I really want to encourage people to look over her blog! (obviously)
posted by RuvaBlue at 11:59 PM on August 27, 2018
Congrats, I am glad "Suck it up, buttercup" works for you.
Isn't it lovely how discussions of intersectionality assume people with ASD have shared experiences? This conversation is very much proving that we don't.
posted by steady-state strawberry at 3:52 AM on August 28, 2018 [2 favorites]
Isn't it lovely how discussions of intersectionality assume people with ASD have shared experiences? This conversation is very much proving that we don't.
posted by steady-state strawberry at 3:52 AM on August 28, 2018 [2 favorites]
The divergence of autistic perspectives is a crucially important point -- and also a really difficult one to come to terms with. By way of evidence, I submit: this thread.
But this does get us back to the bolded quote in the OP, about how "the psychiatric literature is playing catch-up here." I subscribe to Google Scholar alerts on autism, and while I don't always manage to read everything that comes through, I'd say easily more than 90% of the currently-being-published scholarship, even in the "best" journals, is based on the implicit assumption that autistic people have more in common with each other than with non-autistic people (e.g. vast numbers of studies continue to be published that simply compare an ASD group with a "typically developing"/NT reference group, which unsurprisingly tends to yield extremely muddled results).
That assumption seems to flourish in psychiatry -- even though the "spectrum" metaphor and associated truisms like "if you've met one person on the spectrum" have been around for almost as long as the term itself, and even though the diagnostic criteria have heterogeneity baked in ("has either too much or too little sensitivity to sensations, talks and stares either too much or too little, has either too much or too little focus on specific things and activities") -- but it can't withstand any prolonged contact with the various autistic discourses online.
Whether or not there are "shared" autistic experiences, we can only grapple with the nature and scope of neurodivergence through the sharing of those experiences (which, being social in character, are inseparable from their political implications) -- a process that is inevitably difficult, clumsy, and prone to misunderstandings, as this thread and countless others help to show.
posted by shenderson at 10:05 AM on August 28, 2018 [6 favorites]
But this does get us back to the bolded quote in the OP, about how "the psychiatric literature is playing catch-up here." I subscribe to Google Scholar alerts on autism, and while I don't always manage to read everything that comes through, I'd say easily more than 90% of the currently-being-published scholarship, even in the "best" journals, is based on the implicit assumption that autistic people have more in common with each other than with non-autistic people (e.g. vast numbers of studies continue to be published that simply compare an ASD group with a "typically developing"/NT reference group, which unsurprisingly tends to yield extremely muddled results).
That assumption seems to flourish in psychiatry -- even though the "spectrum" metaphor and associated truisms like "if you've met one person on the spectrum" have been around for almost as long as the term itself, and even though the diagnostic criteria have heterogeneity baked in ("has either too much or too little sensitivity to sensations, talks and stares either too much or too little, has either too much or too little focus on specific things and activities") -- but it can't withstand any prolonged contact with the various autistic discourses online.
Whether or not there are "shared" autistic experiences, we can only grapple with the nature and scope of neurodivergence through the sharing of those experiences (which, being social in character, are inseparable from their political implications) -- a process that is inevitably difficult, clumsy, and prone to misunderstandings, as this thread and countless others help to show.
posted by shenderson at 10:05 AM on August 28, 2018 [6 favorites]
The Educational Tyranny of the Neurotypicals
posted by homunculus at 8:38 AM on September 12, 2018 [2 favorites]
posted by homunculus at 8:38 AM on September 12, 2018 [2 favorites]
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This thread has been archived and is closed to new comments
The framing of autism as implicitly in contrast to majority behaviour does warp the way we define it — relentless external, judging what it appears to “lack”, explaining the image in terms of its negative space. As the author suggests, from a certain point of view it’s as fair to describe neurotypicals as “numb” as it is to talk about autists being “overwhelmed” or “sensitive.”
Of course it does indeed make sense to explicate rare behaviour in terms of its deviations from common behaviour...because the audience is more likely to be composed of common types than rare types, and communication works best when you play to your audience.
But it is frustrating sometimes when the stereotypes are reified by armchair experts.
posted by Construction Concern at 1:31 PM on August 26, 2018 [12 favorites]