13 September, 2010

I have to admit that I'm super disingenuous in the way I write about autism. Well, super is a strong word. But sometimes I feel that I tilt stuff.

Okay, so I think this is a somewhat arguable position: autism is not especially related to social impairment. Certainly people with ASD are socially impaired, but:

1. Some of this social impairment comes from being developmentally delayed in various areas, which include but definitely aren't limited to social skills (other stuff would be self-care, and so on). Which is to refer to my previous framing of ASD as being "intellectual disability without the intellectual disability"--i.e., having all the same impairments and differences from the norm that people with ID have, but not being affected in areas that are purely intellectual. I really like this frame, because it's obvious that many people with ID have social impairments, but it's not pathologized in the same way that is for people with ASD. However, this doesn't hold up as an entire characterization of autism, especially because it erases people who have both ASD and ID, which I don't want to do.

2. Some of this "social impairment" is not really social impairment and just comes from being different, or having impairments that aren't immediately connected to socialization, but affect socialization. For example, a person with schizophrenia may have trouble making friends because their speech is very difficult to understand--loosely connected, and full of references and word choices that only make sense to the speaker. This person's problem wouldn't be characterized first and foremost as "social impairment." However, when an ASD person has trouble making friends because they talk in an unusual way, or only like to talk about certain things, this is characterized as social impairment. It might make sense to say that the person talks in an unusual way because they have language problems, or because they get stuck on talking in a certain way; and that they only talk about certain things because they dislike change and transition. But these ways of looking at the situation are ignored.

I really think that if professionals who characterize large parts of autism as being about "social impairment" would actually look at the discrepancies between the way they characterize ASD people, and the way they characterize people who have somewhat similar disabilities like ID and schizophrenia, they would either have to admit that autism isn't as much about social impairment as they claim it is, or they would have to start characterizing a lot of disabilities as being primarily about social impairment.

Oh right. But about me being disingenuous. I guess I feel like when I talk/write about stuff that is going on with me, I try really hard to avoid looking at things through the "I'm socially impaired" lens? Even though, for whatever reason, that is obviously a part of my life. But I try to call it anxiety, or disabled/non-disabled person clash, and so on, partly because I guess I am just so angry about all the time I spent ignoring all these things I had problems with because I had been fed really incorrect ideas about autism, and I thought that my impairments could only be social, this really pure kind of social impairment that I sometimes imagine doesn't even exist. So I feel like I have a tendency to ignore my part in conflicts when I explain them to myself, or something like that.

It sort of reminds me of how I don't always engage very well with people who are being like "BUT WHAT ABOUT THE PARENTS!! BUT SOME KIDS HIT THEIR HEADS!!" And I mean, I really should--not everyone should, but I enjoy that kind of baseline conversation sometimes, and I think I can be good at it. But I'm just so tired of it that I just tend to be sort of a bitch. And maybe that is bad because the person on the other side can't see that the things they're saying are really cliched, and they don't see most of what I'm reacting to, so they're just upset or confused. I feel like sometimes I frame my life, and ASD in general, in a certain way almost as a political act or a way of creating new narratives that give ASD people more room? Does that make sense?

Please don't take any of this post out of context and try to say that I'm going around lying all the time. I mean we all have frames I'm just honest about it.


  1. Well, it's good if you feel you don't have major social problems, except for society's intolerance.

    I can't say I feel the same way. I've had too many people get mad at me irrevocably for things I didn't know I did or things I was supposed to pick up on and didn't to not think social skills are something I lack.

  2. LOL that's not what I was saying at all :)

  3. Okay, I wildly misinterpreted it then. Sorry. I think I'm having a crappy night.

  4. or, to try to be more clear: obviously all disabilities are a result of what most people can do, and/or what people are expected to do. If no one could hear, not being able to hear wouldn't be a disability. So I don't mean that I don't have social problems, but just that because disability is relative, I try to look at it from a less obvious perspective because I think that most people overfocus on the perceptive of "oh, the Autistic person can't do such and such."

    I mean, I am just bothered by the fact that people always characterize and describe autism by saying it's a social disability and they think that's the main area of impairment--even though plenty of other disabilities can lead to someone not fitting in socially. And this snowballs into saying things like "ASD people don't understand that other people have feelings," etc. So I try to frame things in other ways.

    I mean, there's no problem with you thinking of it as "I lack social skills." Most people are not the same as you so the most practical thing for you to do is to try to do what other people do.

    But there are other ways to think of it and frame it than that you lack something. Maybe you lack the ability to identify the parts of a situation that are supposed to be relevant. And other people lack the empathy, or life experience, or critical thinking skills, to understand that you didn't mean what they would have meant by doing the same thing.

  5. part two (aaargh I know will I ever stop): one time about 9 months ago my friend started telling me some stuff about how I acted, especially how I acted when we were first friends, when we were first-years in college (we're seniors now). he said that:

    1. I would always apologize and ask if I was talking too much, but I would basically keep saying what I wanted to say anyway
    2. if I was fixed on having someone be my one-on-one friend, I would make it hard for them to talk to someone else when we were together (he said that once he asked someone to eat with us who he wanted to get to know, and, without being conscious of it, I basically kept him from being able to talk to her by overfocusing on him the whole time)
    3. he said "you get anxious about not offending people, but it seems like you have an idea of how all normal people think and you think we're all the same, so you get anxious about things that aren't an issue for everyone, and then you don't think about the specific unusual things that will upset a particular person."

    he wasn't mad at me for these things (I know, he's a weird kid; he's just really mellow and thinks all this is interesting/funny) but I was really upset after we had this conversation and started trying to focus a lot more on these things. And in terms of just thinking/talking to myself about them and trying to fix them, there's no reason to call them anything more fancy than "social impairment," but I could also call them a ton of other things, like things that come from anxiety, and not liking transitions or complicated situations, and wanting everything to be the way I expect it to be, and passing as ethics.

    I mean...I'm seriously not trying to talk about myself and say that I'm less socially impaired than you or someone else. I'm just trying to deconstruct the notion of "social impairment" because I don't think it's good for Autistic people if everyone always looks at all our problems through a "social impairment" lens. does that make sense?

    and I'm sorry for talking too much. although as my dad says, "Don't be sorry, change the behavior!"

  6. and I'm sorry about your crappy night. I felt so terrible about your mirroring stuff that you talked about in the livejournal community. I wanted to say something. I'll try to sometime. I mean, I understand why you have to do it but I feel like at some point in a relationship/friendship you have to stop doing that because you're not getting everything you should be if you have to follow rules/an act. It's obviously none of my business what you do. But I feel like I know what that mirroring stuff feels like and it just has made me depressed, and very anxious, in the past to try to do it.

  7. Thanks.

    That's okay. I realize mirroring is a coping strategy with some pretty serious flaws. It's really best for dealing with acquaintances/people you don't know very well; it's very good for that actually. But you're right, it's not something one should feel they have to use with close friends.

    I've begun to realize that I need to identify specific scenarios in which not mirroring is okay. Like writing a program and refining the algorithm so that it considers more than one expression. (Sorry, I'm a programmer, so I think that way.)

    But I'm sorry if my talking about it made you feel depressed and anxious, because that sure wasn't my intent.

  8. Oh yeah and in response to your other comments: your whole post made a lot more sense to me once I read it over. I think I must have had a very strong emotional reaction to it that sorta wooshed my brain and made me not really comprehend it properly the first time around.

    Either that, or I just read it too fast.

  9. 'although as my dad says, "Don't be sorry, change the behavior!'

    Oh man, that just strikes me a such a stupid guy thing to say. *eyeroll*

  10. I seem to have a tendency to sometimes alienate people without meaning to, in part because I have a bad habit of using somewhat formal language in informal situations, and sometimes I take things a bit more literally than they were intended to be taken. I think of myself as socially impaired because of stuff like that, but I get why it could fall under other categories.

  11. Okay, I'm chewing on this post because being socially impaired is a big part of my identity, and if people view me through that lens it helps us get closer. So I don't think that the idea of social impairment should go away entirely, because it has helped me personally.

    I do agree that it's obnoxious when people emphasize social stuff in autism and then leave out sensory/executive function/movement/anxiety/cognitive issues. But I don't see anything wrong about pointing out when social issues exist. I mean I personally have a lot of social problems that are caused by inability to read or understand people, and not indirectly by other autism things.

    Actually, you're probably not saying that people shouldn't point out their own social issues, just that you don't want to frame your life that way. I think that's fine and agree with you that it's politically important to create new ways to talk about autism. This comment kind of ate itself but I'll post it anyway.

    I don't think you're lying.

  12. yeah no that's super fair. I think something that I wanted to say in this post (but ended up never actually saying) is that like...maybe that basic stuff, not being able to understand/read people or whatever, could just be going on with me but I would just refuse to say it. which is something that annoys me about myself.

    gosh I so shouldn't be saying this on the Internet.

  13. dude, I really don't even know though. I mean, I feel like everything that's held up as "not being able to read people" could be characterized in a different way. and it would have nothing to do with saying the problem's not real or the person's not disabled etc.

    I mean, sure I assume other people are just like me and I don't allow for their feelings. But like...that's what straight people and non-disabled people do to me it's just not obvious when they do it because most people are like them. I think that's called original sin or self-centeredness or something.

    I mean, what do you mean by saying you can't understand or read people?

    (Also I do identify as socially impaired when I'm just navigating the universe, because we can only change ourselves so saying "ohh well social impairment is socially constructed" doesn't make things go better for me. Thinking of myself as impaired, and working around that, has better results. I just don't know if I think it's Actually Real.)

  14. There is assuming other people have the same thoughts but I was more referring to:

    -having problems interpreting people's tone of voice or facial expressions
    -not understanding some commonly-used ways of speaking such as meta-irony and instant agreement
    -Being unable to "fit in" by making an effort to do so
    -perceiving a lot of NT social traditions as roundabout, dishonest, or cruel
    -Not knowing unspoken social rules or picking up on unspoken social cues

    I think a lot of this is socially constructed. I mean, if people were taught to verbalize their emotions and codes of conduct instead of hinting at them, I would have a lot less trouble. My friends have learned to do that around me and we have less trouble.

    I do also have some social problems that come from other things, like people thinking I'm weird because I wear headphones all the time, etc. But the majority of it comes from not knowing "the rules." Whether I'm wrong or the rules are wrong, in society the way it's set up I'm socially disabled.

    Would you prefer "disabled" to "impaired", here?

  15. Zoe, what do you mean by "instant agreement?"

  16. I wouldn't prefer disabled to impaired. I mean, it's not so much that I'm trying to be like "but remember! social impairment is socially constructed!" because, duh, but...well, I am, but the reason I'm saying that is because I'm trying to question things like theory of mind and empathy deficits as being the root of these problems. I'm trying to see if they can all be at the root be framed as either impairments that are basically non-social, or just things that aren't exactly impairments but just differences that make interaction hard. I mean, expecting people to say what they literally mean could be about language and not socializing right?

    It is the case that I don't have trouble reading people's facial expressions, though. So I don't know what that would be like.

  17. I have this book called Can the World Afford Autistic Spectrum Disorder: Nonverbal Communication, Asperger Syndrome, and the Interbrain by Digby Tantum. His actual theory seems kind of off the wall--basically he's saying that non-ASD people have an "interbrain," which is like the Internet, but for brains...yeah, I haven't finished reading the book, we'll see where the fuck he's going with this. But what I've read of the book, just in terms of how he talks about people he's worked with, is unusually individualistic and compassionate. And I think that makes sense given what he believes--he thinks that most people are sort of naturally set up to be able to access each other, that they sort of plug into each other. So he doesn't have some silly Autism Pop Culture idea that ASD people just are lacking a piece of information or a skill that can be taught like "reading expressions," "knowing that other people aren't interested in trains," etc. He thinks that for ASD people, other people are like doors where the handle turns in the opposite way from what you would expect. He thinks that even for ASD people who are extremely skilled and know everything intellectually, it's just not possible to completely sync up. I enjoy him a lot.

  18. So like I said before: you want to recast problems you have that people would call "social impairment" as coming from some other ASD thing, and that's fine. But when I say I do have social problems, and you try and reinterpret mine... that's not so fine, I think.

    I totally agree that people need to back off the theory of mind/lack of empathy thing. But I don't see why "this is a social impairment" automatically translates to "this is caused by a lack of empathy." The two don't relate to each other.

    The interbrain thing does seem odd but I have often felt that other people were "linked up" in some way that I couldn't access. I agree with the door thing -- often, when other people explain their thoughts, it seems really counter-intuitive to me.

    [Mtthw, I guess I was using "instant agreement" as shorthand to refer to those times when NT people misreprestent themselves in order to avoid confict. Like, person A expresses an opinion, person B says "Sure, I can see why you think that," and then later person B tells person C how person A's opinion is absolute crap. Or, person D says, "I'm a friendly person, right?" and person F replies "Of course you are!" for fear of offending person D.]

  19. but when I try to say that anything can be framed differently, I'm not trying to say what anything Really Is. Because life is confusing and we don't know what anything Really Is. And if you said that you think you're a zombie I would say that I don't think that's true and if I said that I think I'm a werewolf I don't have a problem with you saying that I'm not a werewolf, either. I'm sorry if I'm offending you but what I was saying in the first place is that I think I twist my experiences and other people's experiences in order to make a point. So you have been warned.

    The reason I connect social impairment with that stuff (theory of mind/lack of empathy) is that it becomes a huge pop culture meme that autism is A Social Disability and then professionals start trying to find fancy, catchy ways to describe it instead of saying "hey, autism is blah blah, and by the way lots of people who have it are socially impaired." Because it could just as well have turned out that way. "Executivedyfunctionistic people sometimes have trouble fitting in, but we're not going to do a study on that because it's not interesting."

    I know I'm pissing you off. I'm sorry. I'm sort of like a bulldog when I get interested in ideas. And I do mean it about the zombie/werewolf thing, I don't think that anything I'm saying objectively is any more true than what you're saying.

    And to be a zombie for a minute: syncing up is a huge thing for me, I mean a huge missing thing. I can't imitate other people's body movements. I also can't imitate the way other people speak (and I could claim that's a language production problem, but I know ASD people who have really good language skills, but can't stop talking in their particular big-vocabulary-good-speaker way of speaking, even in situations where no one else is talking that way). I noticed that when I talk I tend to trail off and leave out a lot of words, which I think is partly out of a tendency to imagine that other people know things that I know (which is really scary when I think about it because it seems so detached from reality), but I think it's also a way to avoid saying the wrong words and sort of let people fill in their own stuff.

  20. Whoa, that "interbrain" idea is weird! (Please blog about that book when you finish it; I hadn't heard of it, though I have heard of Digby Tantam). The internet, for brains ... like a hivemind?

    Feminists are supposed to have one of those ... doesn't seem to stop us from disagreeing with each other all the time, though.

    Back on topic, I don't think you're disingenuous at all. I think you're just trying to counteract the usual frame of "autism = underdeveloped social skills" by emphasizing other areas autistic people are different and could use understanding and accommodation. I never thought you were saying we *DON'T* have social problems.

    Actually, for me, a lot of the other cognitive, sensory, perceptual etc. differences help explain our troubles relating to other people --- it's a lot harder to empathize with someone who reacts to things differently than you do than it is to empathize with someone like yourself. (Ian Hacking has written about that --- I blogged about his essay, and how it links up with what I think, and have read other autistic authors saying, about empathy in autism).

    Anyway, no, I don't think you're being disingenuous, or misrepresenting the role of social impairment in autism. I think all you're doing is pointing out that there's more to autism, and to social interactions between autistic and non-autistic people, than is contained in the phrase "autistic people lack empathy/are unable to relate to others."

  21. I like your post that you linked to, and the other thing you linked to (although not being super bright I didn't read it all). I just woke up from a semi-nap, and while I was falling asleep I was thinking about the fact that I often think of people with profound disabilities as being like whales. I'm hesitant to say this, since I am part asleep and it may come off dehumanizing or something. But the reason I like the whale analogy is that it means someone is very real and very complicated, but we may not be able to communicate very well. C.S. Lewis was trying to cope with his wife's death and he said that maybe the two of them were like spheres and their relationship in this life was like two spheres touching at one point, so he didn't really know her very well. I know you're not religious but I don't really mean to quote that analogy and use it to mean the same thing. I just really love the image of two very big things intersecting in a very small area.

    It always really surprises me when people think that someone who doesn't talk, write, look at people, or react in an obvious way is someone who just doesn't know what's going on. Although I'm sorry to say that I sometimes am a little intimidated by people who don't seem to be reacting to me, it tends to be more because I feel like they probably are dealing with a lot of challenging experiences that aren't obvious to me, and/or have really interesting thoughts and ideas that they are absorbed in. That's probably not always true but I do think it's a more respectful assumption, even though I should work on not making assumptions at all.

    I always think the word "profound" is funny as part of a medical diagnosis. But I like having it there because it ties into the fact that everyone is profound even if they can't express it in a way other people can understand. Maybe that's why the term low-functioning grosses me out so much because it seems like a huge assumption. Really, there's no functioning going on? How do you know?

  22. I think the biggest test of the idea of whether or not autistics' social problems are socially constructed or not is whether autistics have social problems with *each other*. Of course, nobody ever bothers to do a study on things like that.

  23. that's an extremely good point.

    and in my experience...well, it's complicated. my exchanges with Zoe above are a pretty good example of a social impairment which is about the way I get stuck on things and can be sort of heartless/numb to the way my being stuck can affect someone else.

    but the more "zombie" stuff, like not being able to sync up--I think I can and have been able to sync up very well with some people who have autism and other DDs.

  24. I think it's important to separate out 'normal conflict' with 'social impairment'. I'm not sure how to judge which category your thing with Zoe belongs in; I'd have to give it more thought and probably read through it more carefully. Another big question is where you draw the line between the two.

    Whether or not I have an ASD myself, I do tend to feel more relaxed around them, as my tendency to be blunt and straightforward becomes an asset rather than a liability, and if I want clarification about something, I can just ask, and it's unlikely they're going to expect me to 'take hints' or otherwise read their mind. All the stuff about me that might mark me as 'odd' (like not making eye contact or stimming) is also a total non-issue.

    On the other hand, I do run into conflict with my nephew a lot, because he has an ASD but he's very, very different from me; very extroverted and often gets angry at things that either strike me as illogical or don't make sense at all. I think he's not as verbally fluent as I am, plus he's only 11, so it's a lot harder for him to figure out what's really wrong and be able to explain it, and we're so dissimilar that I can't really make a good guess.

    Though oddly enough, he's really, really attached me to, where his mom says he doesn't get easily attached to anyone, so that's interesting.

    Uh, sorry for rambling.

  25. I don't know whether my dad has ASD, but he is sort of the stereotype of someone with Asperger's. and we have a ton of conflict.

    I guess I would identify my less than stellar behavior in this thread as a result of being very single-minded and objective and sort of getting incredibly drawn to ideas and forgetting other things about what I need to do when I'm thinking and talking about people's lives. So I consider that to be an ASD thing and it has been a problem for me with people with and without ASD.

    At the same time, I guess I don't know a lot of ASD people who have that problem so can I call it an ASD problem? We're all so different. It's weird when you think about it. But I guess I think I can.

    (sorry, I'm kind of out of it, shouldn't be posting right now. I do think it's really cool that you and your nephew are so close.)

  26. (or, well I guess it doesn't feel like closeness to you as much? but it's really cool that he's so attached to you. maybe you feel like home to him even if you don't know it.)

  27. Oh, it's totally cool that my nephew and I are close. I just wish I knew how to deal better when he gets really upset.

  28. G'night people (like the pun?), I see the big picture. And almost all the people I know think I'm silly. I admit I have a problem, it's not cutting it for the fantasy world. I "live" in the real world, not the "real" world, I'm a solipsist, the "real" world, that's the world we live in, but the real world, the real reality, well, that's beyond the world we live in; and subjectivism is non-believable to anyone who thinks objectivity is real, I can safely say I ain't wasting my time with subjectivism, and with solipsism, I wouldn't dare talk in hypotheses, the logic for the sake of argument, nor would I make a single word conditional, it's like this, things are different for all of us, through thorough study of a definition of each word in a dictionary, it's dead easy, what's lying within our essence, whatever's within our perception, the ultimate, real or individual nature of a thing, its existence, well I can safely say some people like it autistic and some like it on the "normal" side. I conclude autism is a problem, and I admit I have it, and I can very very easily live a simple life, and have been epicurean, and I admit I solved most of my "problems". And got happier as I became agnostic (not atheist). So the optimism is required, and philosophy is required, and I enjoy my modest pleasure (not luxury, wine, and fine chocolates, but simple food, water, and very few material possessions to keep myself happy). I'm literally like Rene Descartes (a French philosopher): I talk in a philosophical fashion and I'm not hypothetical.

  29. "overdo it" is a fluke title, I haven't got a clue as to how to get rid of "overdo it".