21 December, 2009

ASD Savants/Disability Redemption transcript

Hey, so I wanted to talk about the idea of redemption--I'm not trying to convert you to Christianity, it's a completely different kind of redemption. I think the idea of redemption is around in the conversation about Asperger's and high-functioning autism. And what I mean by redemption is the idea that if someone has a disability, if they're good at something else, it's okay that they have a disability.

And the kind of things you can be good at, it's a very narrow thing, it's the kind of things that are considered to be good by, like, intellectuals or something. Or I shouldn't say that--like, let's say you're really good at playing soccer, that would probably be okay. Or if you're really good at killing cows, or music criticism. Anything like that. If you have an ASD but you're good at something like that, then it's okay that you have an ASD, and you shouldn't even call it a disability, because all the trouble that you take up is canceled out by the fact that you do such and such good thing.

Well, this just isn't a point of view that I want to be part of, because I think it's kind of messed up and offensive. And the whole idea that people who take extra work to take care of, or people who have a disability--even people who are just kind of different and need a different thing from the world--we live in a culture that sees that as such an awful thing, like such people are such a huge burden and you should be really freaked out about them. And into the middle of that come people like Temple Grandin who will try to argue that people with Asperger's and HFA are, like, super special smart at certain things, and because of that, it's not really a disability, or it's okay, or "a dash of autism creates a genius" or whatever stupid recipe thing she's been saying lately--I just think that's really ableist. If you think, "well, it's okay to have this, because it creates a genius"--I mean, the whole idea that being a genius is such an important and valuable thing--well, it's not the most important thing in life and that's not the only kind of valuable people that there are.

It's weird for me, because I guess I'm a "high-functioning" person, but really, the reason I think of myself as a high-functioning person is just because people don't perceive me as having a disability most of the time. But it's funny because I don't feel that I'm a genius or that anyone perceives me that way. I definitely don't feel like a fucking savant--I mean, I'm good at some things, but it's not anything big, and I think when people meet me, there's very little sense of me being a genius--I mean, to the extent that anyone thinks anything about me in terms of disability or difference, it's probably that I'm kind of out of it, or that I seem like kind of an asshole, or just that I'm kind of stupid. So I don't relate to the genius thing. I guess I relate more to people who are intellectually disabled, because I feel like people give them the same kind of impatience and weird looks that they give me.

So those are the people that I feel the closest to, and it's upsetting to see other Asperger's people, like, throw intellectually disabled people under the bus--I just see so much writing by people with Asperger's, who if they see themselves grouped with people who are 'retarded,' they'll be like, "Oh, I'm not retarded, it's not the same thing, people think it's the same thing!" and it's like, okay buddy, it's not exactly the same thing, but there's some overlap, just calm down, there are similar things about the way retarded and autistic people move, and the way we sometimes process things, and the way people treat us.

Like, okay, I get that it's not exactly the same thing, but don't fall all over yourself trying to distance yourself from another group of people with a disability because it just makes you look like an asshole. And I really feel like this idea that people with ASDs are valuable only as long as we have these particular amazing talents is just kind of bad in the long run. And I feel bad when I think about any particular person who's achieved some measure of success because they're seen as being so super talented and their ASD is some adorable quirk because they're so talented it's okay--what if that person goes through something really bad and their speech kind of shuts down? Or, like, I used to be really good at reading and now I have a lot of trouble reading--that skill is just not really there for me anymore. And, if you've spent so much time arguing that you're okay because you're so good at such and such, what do you do if you stop being good at such and such? What does that make you? Does it make you not okay anymore?

I don't think that it does. I don't think anybody should have to redeem themselves for their disability by being a genius, you know?

I think people can act like this with all kinds of minority groups that make them uncomfortable. I mean, you can see it so much in Queer Eye for the Straight Guy--the whole fact that all the gay guys in public and on television are guys who have these particular skills that are supposed to be useful for straight people (I know, and they don't have any lesbians because we're not good at anything, I guess) but it's just like, they're trying to say, "Look, you have to accept gay guys--yeah, they're gay, and it's weird, but look at this other stuff they can do! Look how they can help YOU!" and it's like, why do you have to be so fucking selfish and think that other people only matter if they can contribute something in a way that you think is an appropriate way to contribute? I mean, what's wrong with someone being just a regular gay person who's kind of mediocre? You'd be okay with a straight person being mediocre.

And like, the average nondisabled person that I meet, I don't usually think that they're super great and they're going to cure cancer or something, but all of the sudden you're supposed to think that people with Asperger's are okay but a person with Down Syndrome isn't okay because a person with Asperger's might cure cancer?

Kind of stupid, and also, most of the time, not true. Lots of people with Asperger's, like me for example, are pretty dumb, not particularly great at anything, and I don't think that affects my value as a human one bit. That's all. I just wish that people wouldn't talk about ASDs this way, because I feel that while it may enhance the social status of a small group of people with ASDs who have special talents, it really insults and hurts a lot of other people with disabilities, and in the long run can even have a negative affect on the people who are considered to be savants.

14 comments:

  1. On the other hand:

    A partial list notes that autistics have, on average, superior pitch perception and other musical abilities, they are better at noticing details in patterns, they have better visual acuity, they are less likely to be fooled by optical illusions, they are more likely to fit some canons of economic rationality, they solve many puzzles at a much faster rate, and they are less likely to have false memories of particular kinds. Autistics also have, to varying degrees, strong or even extreme abilities to memorize, perform operations with codes and ciphers, perform calculations in their head, or excel in many other specialized cognitive tasks. The savants, while they are outliers, also reflect cognitive strengths found in autistics more generally. A recent investigation found, with conservative methods, that about one-third of autistics may have exceptional skills or savantlike abilities.

    Autistic people usually have a superior desire and talent for assembling and ordering information. Especially when they are given appropriate access to opportunities and materials, autistics live the ideal of self-education, often to an extreme.


    (http://chronicle.com:80/free/v55/i41/41cowenautism.htm)

    And, notwithstanding all problems we see with Attwood, my instinct is that he's right that "the unusual profile of abilities that we define as Asperger’s syndrome has probably been an important and valuable characteristic of our species throughout evolution." (The Complete Guide, p. 12)

    Also, while your humility is admirable, it seems to me that not only are you not "pretty dumb," you're positively brilliant. I just finished grading the papers of 54 undergraduates at a top-tier university. Trust me on this one.

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  2. I really appreciate this post. Lately, I've been thinking about the different strains of the neurodiversity movement that have been developing. There seems to be a rights-oriented neurodiversity, which is where I feel most at home, and a neurodiversity oriented more around highlighting the different cognitive profiles, including strengths, present in different neurologies. I think this tends to be the focus of Tyler Cowen's most recent book and some of the Autistic employment efforts, like Specialisterne. I don't think there is anything wrong with that, mind you. Just that it is grounded in a different approach than the rights-oriented strain of the neurodiversity movement, which has more in common with traditional disability rights philosophy.

    I think that both strains are making interesting and important points, but I'm not of the opinion that the latter type of case for neurodiversity can alone serve as justification for what we're fighting for. Rights shouldn't be dependent on special abilities. The "don't cure us because we might be the next Einstein" argument is one that I indulged quite a bit when I was a teenager. If memory serves, I said something to that effect in some of the earlier speeches and articles I wrote. Nowadays, I tend to think there are better, more inclusive cases we can make for why our movement is important, necessary and on the right side of history.

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  3. Hey Ari,

    Congratulations on the announcement! I just found out yesterday, and I'm thrilled.

    On the two strains, I haven't read anything else by Tyler Cowen, but it seems to me that the strains aren't mutually incompatible. (Then again, I somebody who describes his politics as "conservative-liberal-socialist-radical," so maybe what seems very possible to me seems otherwise to other people.)

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  4. But Todd, I can do almost none of the things on your list and I suspect that maybe only boy ASD people can do those things. Recently I was examining my latest diagnosis (from when I was 14) and it said that my ability to copy shapes was the ability of an 8-year-old, and my verbal IQ was 122 but my visuospatial IQ was only 100. I cannot find my way around anywhere at all, either. I used to be able to add up a bunch of numbers in my head, but for ten years now I find adding numbers to be extremely difficult and have to write it out or use a computer. Also, how can ASD people be good at assembling and ordering information when we can't figure out how to do things, or talk or write about things? Where's my assembling and ordering information facilities when I am forced to produce Bullshit Close Readings for all my classes because I can't synthesize all that stuff into something bigger?

    Even though it is nice for you to say I'm brilliant, I have to ask if you can give me an example of any brilliant thing I've ever done. I couldn't even get into the classes you grade papers for, I bet, and even if you fuck around and pretend that my verbal IQ is my "real" IQ (which is what my diagnostician wrote, apparently to make my parents feel better) it's a pretty ordinary one.

    Hi Ari Ne'eman! It's kind of endearing to think of you "indulging in" the Einstein line of thinking when you were in high school. Like, walking around in a big coat, grumbling to yourself, is my mental image--although I guess you were probably more productive than that. That's sort of what I was like, though. I wanted to someday completely shock everyone with what a genius I was, and then I though I was going to be a National Merit Scholar and then I missed the New York cutoff by like two points and I was SO PISSED OFF and I realized that I'd just have to try to be a nice person, instead.

    "Highlighting the different cognitive profiles" just really isn't something I can feel comfortable about because so many people I care about don't have any "strengths" (as Alison Singer charmingly put it), and as soon as you start talking about "strengths," that leaves them out of the conversation altogether, and separates me from them. I think it's kind of interesting rhetorically, with the way ASD people are demonized, to think about the fact that non-ASD people could be seen as not having any interests, or being obsessed with the way people's faces look, or whatever--like Aspergia--but it's nothing really solid, in my opinion. I'm sorry if I'm just spieling and not really responding to what you said.

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  5. Todd, I don't consider them to be mutually incompatible - but they are most likely in tension, like so many other conflicting values and themes within a particular movement or set of ideas. I'm not yet sure how we can reconcile them - I do think though, that if we can't, that I'd much sooner give up the part where we make the argument for our special skill sets than give up the part where we believe that all Autistics deserve rights and to be considered equal citizens in society.

    To me, the civil rights component should be considered more central to Autistic self advocacy and neurodiversity than the special abilities part. I'm not sure we have to give either up though - just come up with a framework that places civil rights at the center, and that recognizes that Autistic strengths represent an "on average/tendency" that isn't necessarily present in every person and that doesn't necessarily always manifest in the same way. I think Tyler Cowen's writing, the Specialisterne example and some of the new research on Autistic strengths may be heading in this direction. We still need to find a way of constructing it all into a larger theoretical and practical framework. I'm hoping to give that a lot of thought in the near future. Both Disability and GLBTQ Studies may provide us with some useful tools and theoretical constructs.

    Amanda, it tended to come up in the speeches and writing I was doing in high school. I think I first started doing any of that when I was 16, so I had a lot of time to mature and have my perspectives evolve as I was doing it. Amusingly, I did have a big coat - I still do. It's huge and brown and was often referred to as "Ari's bear coat" when I was in high school. I used to joke that the coat could safely absorb a bullet. Though the way things are going lately, I might want to try and get that feature added in! ;)

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  6. "...and I suspect that maybe only boy ASD people can do those things."

    Way, way problematic. I like your posts, but can you steer clear of essentializing and sexism?

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  7. At various times, I've been active in mental health consumer/survivor movement, brain injury advocacy/self-advocacy, and cross-disability advocacy. Have friends who are involved in our Australian equivelent of People First - ie self-advocacy for people with intellectual disabilities. And it's always got to me, this need to dissociate from people with other disability labels, this "I'm not crazy", "I don't have an intellectual disability", "it's totally different, we need to train people about that, raise awareness", "don't write things in Plain English, that's talking down to people" etc etc etc.

    I used to have some of the talents often associated with Aspergers/autism (I was one of the extremely rare people diagnosed in the mid 80s!). I also had epilepsy. Over the years, I've fried my brain with too many seizures. I don't have those "autistic talents" any more. And - partly because I think slowly - my IQ tests low. Do those things make me any less of a person?

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  8. can you steer clear of essentializing and sexism?

    I'm mostly kidding but I guess that's an inappropriate thing to kid about, so I apologize. I was referring a bit to studies about ASD women being less likely to have science/machine/math-related obsessions and more likely to be into fiction and animals, and also AS boys being "little professors" and girls being "little philosophers." (The "What Autistic Girls Are Made Of" New York Times article is an example; sorry I'm having trouble copying and pasting for some reason, but it's the first hit if you google it.)

    It's probably stupid of me to invoke this stuff since I am not fond of "women are like this, men are like this" in general, but the first time I read the "What Autistic Girls Are Made Of" article it really changed my life, and I fit into that profile so much that it's difficult for me not to get carried away. At the same time, I know tons of ASD guys are very gentle and have issues with anxiety, and aren't running around telling everyone about engines, so it's true, I don't really apply those ASD female vs. ASD male stereotypes to my real life; it just wouldn't make sense.

    I don't know if that's a particularly clear explanation for why I made that comment, though. I shouldn't make comments that I can't explain.

    strongria, I think Plain English is wonderful and I wish everyone would just be straightforward to each other all the time because it seems like it would help everyone. The only people it hurts are people who are offended that someone thinks they might have difficulty with language.

    It's interesting that you have experience with this distancing phenomenon in so many different communities. One time this woman with an intellectual disability told me that most of the people who worked in a particular section of her workshop were autistic. She made a snarky face and I think she made the crazy sign with her finger. I found myself wishing some of the ASD people who act so contemptuous of intellectually disabled people could see that she was equally contemptuous of them.

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  9. I totally agree with this post, and am really pleased that someone has written it - i've been wanting to do a very similar one for a long time, called something like "I Am Not Your Shiny Aspie". There is a deeply disablist* ideology underneath the whole "AS/HFA is OK because of the extra-special talents" line that quite possibly isn't even percieved by most of the people spouting it. It's also a line of argument that can be used by curebies and "autism advocates" against the autistic advocacy movement by saying that those of us who are verbal enough to speak out are "not really autistic (or "developmentally disabled", or whatever)", have totally unproblematic lives, and therefore don't have the "right" to "speak for" the "really disabled autistic people".

    *using the UK term cos i can't quite bring myself to use the US "ableist" - it just doesn't look right to me...

    (Amanda Baggs has written on this subject far better than i could, as probably have several other autistic bloggers. I think what you say here ties perfectly into it.)

    I've seen the same sort of line used with regard to other impairments as well - for example, people touting the (supposed) sociability and "niceness to everyone" of people with Down's (popularly regarded as roughly opposite in "cognitive profile" to Aspies - i've noticed a sort of binary opposition between "social skills" and "IQ"/"language skills" in a lot of discussion about cognitive impairments, which those 2 conditions tend to get upheld as opposing exemplars of) as "redemptive" to their intellectual impairment (which also shades into the "sweet, innocent, angelic" stereotype of developmentally disabled people in general, of course...)

    I will say i really don't think "pretty dumb" describes you accurately based on your writing, but also that i deeply empathise with you on that aspect. I also used to be really good at maths (got an A* at GCSE, for what it's worth), but now find mental arithmetic extremely difficult and have to resort to a calculator (although, having said that, mental arithmetic was never really my strong suit, and certainly wasn't particularly important in the exam), and am pretty sure i am nowhere near the reader (either in speed or comprehension) that i was as a kid. (Tho i have a feeling this is fairly common, not only in autistic people, but in people all across the neurological spectrum.)

    (And as someone who is to Christianity roughly as Picard is to the Borg, i have to say i laughed out loud at your first sentence. ;) )

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  10. Forgot to comment on the gender essentialising bit. I don't tend to buy into the "autistic boys are like this, autistic girls are like that" stuff (and i think it's very telling that they nearly always talk about "boys" and "girls" rather than "men" and "women" here, as it's also an infuriating trend that so much autism research is focused on autistic kids to the near-total exclusion of autistic adults, so much so that you might think we all either die or get miraculously cured on our 18th birthdays), largely because such a high proportion of the autistic people i know are either trans, genderqueer or otherwise gender-variant, or just don't identify with concepts of sex or gender at all (and that's not even mentioning those with physical intersex conditions, which seem very strongly associated with neurodiversity of one sort or another).

    I think it *can* be true that autistic boys and autistic girls present very differently in childhood, but i think the reasons for it are much more likely to be social than biological - the different expectations that parents, teachers, doctors, therapists (etc) have of "normal" boys vs girls, as well as cultural stereotypes about autism itself (eg. the whole "extreme male brain" bullshit spouted by the likes of Baron-Cohen - which i think is amply disproved by the fact that all autistic girls very obviously don't grow up to be trans men), as well as the different social messages that boys and girls get and internalise and their different behavioural responses to that (for instance, i consider myself to be "agendered", or not feeling like i have a gender identity at all, but even so, i'm pretty sure my autistic traits would have been expressed differently if i had been percieved to be, and "raised as", a girl rather than a boy).

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  11. Although it's obviously not the majority, I do get the impression that more XX ASD kids grow up to be trans guys, than non-ASD XX kids. I'm sort of curious if ASD people are more likely to be trans or same-sex-attracted--it feels that way anecdotally, but at the same time, I feel like maybe ASD people are just more tuned into themselves and more likely to understand that they're trans or SSA whereas a non-ASD person has trouble thinking outside of the life they're told they're going to have, even if it is pretty obviously not working for them. (I know that's a Shiny Aspie thing to say and I'm sorry! But it wasn't all that Shiny in practice, for me, so maybe it's a legit observation to make.)

    Simon Baron-Cohen is sort of a trial; I liked when he said that ASD girls are more likely to get along with non-ASD guys than they are with any other group, because that's true for me. But I think he just hit on that by chance because I think he mostly imagines that ASD girls just don't exist. I remember being really frustrated by that Newsweek article when I was 14 about "Why Most Autistic Children Are Boys," because it didn't even talk about girls. I mean, even pretending there's no underdiagnosis problem, we're an exception of like 20-25% which is a pretty big exception. How could you write an article about ASD and gender and not mention girls at all? We're not like 1% of the ASD population!

    Do you think you were a stereotypical ASD boy when you were a kid? What were you like?

    I think being a girl is something I had to learn (I don't really have a deep emotional pull to any gender identity, but if I didn't have one I feel it would make me confused and be a lot of trouble, so a while back I chose to sort of dig out an identity for myself as cis, just because it's easier); when I remember being a kid, I kind of remember thinking of myself as a boy a lot of the time. And I think part of the reason I am attracted to women is that even though I'm super close with guys, I always feel like I'm doing my "female persona;" with women, I don't really feel like the persona is convincing, which makes it hard for me to feel comfortable with them, but in a serious relationship I think it would be a good thing.

    But anyway, despite my identity not really being female for that long, I was always all about the Animorphs books and self-injury and shutdown when I was a kid and a teenager, never jet planes or carrying on at length to strangers. And I don't know, that feels innate to me, not something I've been taught. At the same time that just may be a particular type of ASD--"passive and odd" instead of "active and odd," or whatever--not XX ASD or "girl ASD" as I was facetiously calling it. I definitely know XY people, both men and women, who are my kind of ASD.

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  12. Honestly, I agree with Shiva: I think a lot of it is NT researchers and psychologists trying to project their understanding of gendered NT behavior onto behavior that they really DON'T understand in order to invent some kind of neat framework for it. I, too, have met people with Amanda's kind of ASD and people with the more visible, well-known type, and they identify all sorts of different ways.

    On the other hand, I don't really understand what's wrong with valuing people for their particular talents, as long as you don't write them off as "freak" or "savant" talents just because they have a disability (which sort of has a connotation of being worth less than "normal" talents, doesn't it?). NT/currently able bodied people are valued for the same reasons--for being competent, or creative, or witty, or an expert on a particular topic. At least in the circles I tend to associate with.

    Also, Amanda: You're not dumb. You're a very good writer and musician from what I've seen. Your words are very incisive and valuable.

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  13. Yes, i also think that autistic spectrum people are more likely to be trans or otherwise non-gender-normative than NT people: i've touched on that in several long blog posts (notably here and here). I think there are probably both biological and social components to that, but it's worth noting i know as many autistic/otherwise neurodiverse trans women as trans men.

    (IME autistic women also seem a *lot* more likely to be either lesbian or asexual than NT women, to the point that under a third of the autistic women i know are at all attracted to men, but i think that might just be a sampling issue.)

    I was a *very* stereotypical autistic boy, even to the extent of fulfilling some of the stereotypes that are now often regarded as wholly negative and untrue (such as not caring at all about other human beings, unless they had information that was interesting to me; i genuinely don't think i had the capacity to love another human being before puberty). Reading fluently at age 3, knowledge-obsessed, "special interests" in birds and animals, rocks, fossils and evolution, memorising whole books, hand flapping, speech absolutely without inflection, screaming and sobbing meltdowns when other kids came anywhere near me... the astonishing thing is that i wasn't diagnosed until adulthood, frankly. I have no idea at all how the many school counsellors and child/educational psychologists i was sent to missed it.

    ERJ: I don't think there is anything wrong with valuing people's talents either; it's the whole implicit devaluing of people who don't have some sort of "special" talent that i find problematic, especially when the presence of a talent seems to be what's being used to justify the acceptance or tolerance (or even the existence, given that this sort of argument is often used in implicitly or explicitly eugenic contexts) of disabled people.

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  14. But Amanda, I've already given you an example of a brilliant thing you've done: "Castle Raincoat."

    Your writing shows brilliance too.

    A few months ago I found an old letter from my Dad in which he said he was honoring my request for him not to give me any compliments. I don't remember having done that but I'm sure it was because of how intensely irritated I can get by compliments that I feel are made up or untrue. So maybe that's how you feel. But I don't give compliments I don't mean, and judging writing is something I feel I am pretty good at.

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