11 April, 2010

A flawed but I think useful model of ASD

I want to make a post about being intellectually disabled without the intellectual disability. Which is related to my whole thing of preferring to call myself developmentally disabled instead of any autism-related word.

This is partly, as I said, because I hate the word autism. Sometimes I wonder what is wrong with me that no one else seems to hate it as much as I do. I feel like the word is very intimately tied in with the kind of mistreatment that ASD people receive from professionals. If despite all evidence to the contrary people continue to think of autism as primarily a social disability--a disability of dislocation and indifference--then the obvious way to treat people with autism is to MAKE THEM SOCIAL! But how do you do that? How do you look at a person and make them social?

Well, you try to make them act more normal. You make a list of normal things to do. And then you try to train the person with autism to do those things.

You also make a list of things not to do, like moving wrong. And if you know any people with intellectual disabilities, maybe a bit of doubt is starting to creep in, because...don't a lot of intellectually disabled people move wrong, too? NO NO NO NO. Autism is not about that! Autism is about BEING OBSESSED WITH YOURSELF! Kids with autism just move wrong because--well, it's like, the whole thing where they flap their hands over and over is kind of like how they have really strong interests! It's basically the same thing, because they don't...because they don't switch from one thing to another, they just always do the same thing!

(Except some intellectually disabled people have really strong interests. Shit.)

When I started realizing I wanted to work with DD people--I mean, not when I started wanting to do it, but when I became sure that I was going to do it--it was mainly because I realized that I'm not a person who can batter through a lot of really exhausting things, like moving right, and trying to pick up on things really fast, and then, when it still doesn't work and everyone rolls their eyes or gets mad at me or thinks I'm a lot younger than I am, then, pretending that I don't even care--it was mainly because I realized that for my own health I needed to aspire to a career where I would be spending a lot of time with people whose ways of moving and thinking were not extremely different from my own.

And eventually I narrowed that down to wanting to work with intellectually disabled people, not ASD people--not because of any particular difference between ID and ASD people, but because of the extremely different attitude in the staff who work with them. A particular ID guy, who I think and write about a lot, likes to collect fliers. The people who work at his workshop and group home try to keep him from grabbing entire stacks of fliers and putting them in a bag, but the general reaction to his excitement about fliers is amusement and affection. He was recently Consumer of the Month at his workshop; if you mention him to a staff person, they light up and say, "Oh, he's hilarious, he's great. Did he show you his fliers?"

Think about what would happen if an ASD person, in a school, group home, or workshop specifically for ASD people, expressed that level of excitement about collecting a certain kind of object. And flapped their hands and jumped around (which he also does). The reaction would not be "you're great" because ASD is conceptualized as a disorder that has to do with not caring about people or not knowing how to be with them. So the reaction would be, "There you go, doing your repetitive, antisocial behaviors."

This is why I can't work in most places for ASD people because I can't really suppress my positive reaction to "repetitive, antisocial behaviors" like stimming and being really interested in things. Also, I am prone to such behaviors myself, so it would just fuck me up spiritually and in terms of self-esteem.

I know this is a total crock of shit, what I'm about to say, because some ASD people aren't like this. But this is how I think of ASD in myself: intellectual disability without the intellectual disability. Which means, a lot of the same movements and emotional reactions as ID people, and a similar way of being slow to pick up on things and sometimes slow to get out the words I want to say, and trouble with looking after my best interests in various ways. But academically, when all the other stuff doesn't get in the way, I'm not actually intellectually disabled.

Or you can say it like this: I have an anti-learning disability. Instead of being affected only in terms of academics, I'm affected only in terms of everything else.

For a while, weren't they mostly calling us PDD instead of ASD? I really like that better. ASD is so focused, just because of the name, on this ONE THING. And I feel like sometimes I understate the social stuff, because it does exist probably, but I feel like it's not that much more social trouble than a lot of people with intellectual disabilities experience, just by virtue of being different and maybe not picking up on things as fast. It's definitely not the core issue in my experience, I don't think.

I feel like if autism wasn't thought of as being this inherent state of selfishness and indifference, life would be totally different and better for people who have it. There is a tremendous and awful amount of prejudice directed at people who have intellectual disabilities, but I feel like it isn't quite as acceptable to say that it's "heartbreaking" or "a nightmare" to raise a child with an ID. And I'm not being disingenuous because I seriously think that a lot of people with ASD are loving in a lot of ways, but people don't see it because that's not what they're taught to expect. And they also don't see joy and nonverbal communication and stuff when they look at stimming because they've been taught what to believe stimming is.

ETA: I guess I feel required to state once again that I think this characterization of autism is totally full of holes--however, I do sometimes want to wrench out some kind of narrative that will fit me, and it does fit me, even though there are lots of ASD people it doesn't fit. Rather than putting out this model to be judged as correct or incorrect, when it's clearly somewhat incorrect, I'm more trying to stake out an opposite pole from the selfishness model of autism, to turn that model on its head. I believe the anti-learning disability model makes more sense than the selfishness model, and is somewhat closer to whatever the truth is.


  1. I was thinking about this in class today sort of. I was just hating that I feel intellectually disabled because I can't have an intelligent conversation in class that requires any sort of quick response but yet I can whip out a 4 page paper on the atomic bomb and surprise myself at how good it is. How do you explain that to people?

    I can understand why you want to work in an environment that isn't negative, but you could really be a good example to those misinformed ASD educators. Maybe we feel connected to stimming behaviors because to us it's just another form of communication and we can read that they way other people read eye contact or something. When typical people observe stimming, maybe they just have a total disconnect reaction and have no idea how to read it. I think that the communication errors among ASD people go both ways and even though that's not an excuse for ignorance I can see how the misunderstandings develop.

  2. p.s. I have to take a communications class for school and I'm pretty much betting on failure unless I can get some sort of assistance. Do you have any experience having to do this?

  3. The thing is I just couldn't get a job at a place like that, I don't think they have enough respect for ASD people to care what ASD people say. Because if they did, they would probably have already listened to someone.
    I know someone who was working at an ABA school, undercover ASD (the person in question sometimes reads this blog, so hi person, I hope you don't mind me using you as an example). Anyway she basically got in trouble for pointing out that the teachers did things like swinging their legs and that it wasn't fair to do that and be anti-stimming. So it's not like they're just waiting for someone reasonable to explain to them that stimming isn't wrong--because it's already unreasonable to think that. Their belief is just supported by tons of ableism/passing-as-ethics and can't be eroded by logic.
    I don't think that you'll be able to get any assistance if you're still undiagnosed (are you still? I guess I should know that). I mean, maybe in an informal way you could describe your problems to the teacher. But if your teacher is a jerk I think you'd have to go to the disabilities office and bring official diagnostic material etc.

  4. So I really like this.

    I've mentioned before, I think, how I *hate* the word "autism". I use it, yes. Identify with it, even. But I really do hate it. It gets it ALL WRONG. Autism isn't about, literally, autism--utter self-centerdness. It's about pervasive developmental differences in communication, sensation, and cognition.It gets interpreted as autistic self-focus by neurotypical people. But it's not. Not at all.

    I would MUCH rather be PDD. I wish there was a label for someone like me. I wish I wish I wish...

    I don't know. But I agree.

  5. oh ya. diagnosis. my favorite word. i have been semi-snooping around the disabilities information and they state that if you claim a disability but don't have medical proof they will help you attain it. This class may end up being the deciding factor after all, especially since I may need it when I transfer to State college.

    I know a psychologist who specializes in these types of diagnosis and she said she would work with me on cost but I still go into complete panic mode just thinking about calling her and making an appointment. I think to myself, this is the kind of stuff grown ups are supposed to do - make appointments for their kids- but I am a freakin grown up. sigh.

    I'll talk to my teacher too if nothing else pans out. If they are a jerk I'm planning on getting some type of tutor.

  6. "When I write what I know, what I remember, I am told that mine is a magical reality. I listen and talk to animals and rocks, time is both action and peace, both a living thing and a thing that stopped before my own red birth. In a word grown cool after the making I feel a profound duty to admit the illusion of my distinctness and I object to the freezing properties of objectivity. Knowing there is much illusion in the world I feel sure that my way of being is only a disability of context, that what have been labeled symptoms of autism in the context of my culture are inherited gifts of insight and action."

    --Dawn Eddings Prince, Independent Scholar

  7. todd, that is so Shiny. I don't approve.

    (even though I like your little "jamming" or whatever picture.)

  8. i am still pretty murky on what "shiny" means and what's wrong with it.


  10. "To me, anthropology is the practice of trying to understand other things that share one's own experience, and the greater experience of being things of a like kind. Anthropology is seeking a mirror for one's personal experiences. As anthropologists, we can only speak for ourselves, ultimately, and by speaking about what we see and what makes sense to us we pass forward our personal legacy. We are all trying to understand our place in relation to where we are, where we may end, and, perhaps most importantly, who we are in relation to our beginnings, the links in a long chain.

    "As anthropologists we knowingly pass on the synthesis of who we are, what we see, and the sense we make of it to future generations. I have always known that and reflected on it with the engaging humility the task demands, but even more so now that I know I am shaping a world in which the many sensitive living things include my son.

    "To me, there is no difference between anthropologist and living world, anthropologist and autistic person, anthropologist and primate, anthropologist and mother. There is no difference associated with these parts of myself in the responsibility I have to be part of and to observe the world I shape for others and the love and responsibility I have for my own child.

    "I believe that this larger picture is what anthropology was in the beginning and I yearn to understand beginnings; not only the big beginnings, like where the universe started and where we all came from, but also small beginnings, like what comes between 0 and 1 and the ways spirit takes shape. A natural anthropologist, I have always tried to make sense of the primates around me, so different from me in so many ways. A natural archaeologist, I have always been interested in everything old. In the past I find a context in which I am not disabled by hearing everything, by seeing everything, by feeling everything.

    "It was only a few years ago that I was told that there was a name--Asperger's Syndrome, a form of high functioning autism--for what made me the kind of anthropologist I am and what leads me to ignore traditional definitions and delineations."

  11. "My struggles with school and its reflection as a training ground for disconnection started early in my life. From the din and pain of kindergarten to the time I quit high school and was then homeless for many years. People would tell me I "wasn't cut out" for school and normal life and now I know it was because I wasn't cut out at all. I was just connected. I invoke these particular memories here to begin to reflect on how that connectedness, and antidote to all the cutting and dismembering we are taught through formal education, eventually led to my being an anthropologist, a person, a mother without seams."

  12. "I still relate to humans best and hold the best hope for my son when I think of them as primates who are capable of bridging the same kind of gap that the gorilla mother bridged, capable of reaching out to people different from them and finding value there to save. I want them to reach out to people like me, like my son, and people different from either of us.

    "We are all strange and broken and beautiful in our own ways. We are each so afraid of disconnection and yet it can't be easily escaped; some say it is an inevitable state of being and, perhaps, the price of consciousness. That fact makes our connections to other living things all the more important to cultivate. There is beauty in our difference and also beauty in our sameness: sameness with other animals, sameness with one another. We feel the loss of so many things: falling forests, disappearing animals, the loss of each other as we move far and fast in our culture.

    "I think back to our original ancestors. If they were, as I believe, like me in their way of being, their needs were simple after the eating and drinking: to be loved, to be appreciated for their special abilities, to want to leave something meaningful behind them.

    "When I, and then my son, take in our last breaths, reversing our first loud inhale with a quiet exhale, when our naked bodies shake, slick with sweat in place of that first wetness when we came into the world, when we have been delivered through that tight, black hole that marks the end and signals the beginning, I hope we will be welcomed back to be a part of memory itself.

    "The old ghosts will celebrate."

    Prince, Dawn Eddings. "An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives." ETHOS, Vol. 38, Issue 1, pp. 56-68.

    (Ethos is the Journal for the Society for Psychological Anthropology.)

  13. sushipie, that's awesome that your school can help you get a diagnosis!

  14. I just discovered your blog today and love this post! The reason is that I am working toward similar goals, but focusing on adults and teens on the autism spectrum. I've been feeling disheartened lately because I'd like to see perspectives change and attitudes toward AS improve, but it's not likely to anytime soon. People will still be focusing only on social skills and behaviour without addressing anything that is worthwhile or beneficial to the person in question.

    Your comment "I feel like if autism wasn't thought of as being this inherent state of selfishness and indifference, life would be totally different and better for people who have it." really hit home for me since I blogged about something similar just today. :^)

    I think you are absolutely right.