Friday, August 31, 2007

Giving up

A commenter to my recent post on depression asked, "Is the diagnosis good for anything?" Referring to Asperger syndrome as a "crude label", the writer states that it has "zero explanatory value" and describes a set of qualities that are really nothing new. No argument there, I suppose AS by any other name would smell as weird. Of course it's nothing new. People like us have always existed. What's new, relatively speaking, is the way these traits are construed as a disorder or quasi-medical condition.
Sometimes when I discuss autism with people not familiar with the idea of disability as a cutural construction, someone will start talking about labels. "Why do you feel a need to label yourself?" is a question I've heard a few times. "What's the point of diagnosis at your age?" is another one. A satellite to the labelling conversation is the accusation that I have somehow "given up" since accepting the truth of my autism.
I've written about labels before, and how having a name for the seemingly separate mysteries of my existence has allowed me to experience life more fully and view myself as unbroken. To be able, finally, to answer the many questions I've asked myself and those that others have asked of me has been the most meaningful gift I could have received. Why do I walk the way I walk, and why do I have such problems with talking? Why don't I understand small talk, why do I always seem to have some all encompassing obsession? Why do I get so irritable with noises other people don't notice? Why do I love repeating words and phrases? Why do I seem to misunderstand others so often? On and on and on.
Having a name for this, seeing that it might all fit together, rather than being a large collection of independently weird traits, helped me make sense of my life and stop blaming myself and get on with the business of living. Stigma happens, yes. My experience is that is happens with or without a diagnostic label. The labels "weird", "lazy", "crazy", etc. seem to be sufficient excuses to ostracize others, if one is inclined to do that.
Yesterday, I had the opportunity to speak to a group of about 50 special education teachers. I had been invited to share information on a social club I coordinate for Asperger teens. I included some general information about autism and Asperger syndrome, both from literature and personal observation. I was able to stand up in front of this group and tell them that we are not broken and do not need training to behave more "normally" so much as we need acceptance for our different ways of being. Several people approached me afterward, asking if I'd like to speak at their schools or other groups. I am happy to be able to make these small attempts at changing attitudes, little by little.
This is something I would never have been able to do a few years ago. I could barely talk at all if more than one other person was in the room with me. As I told the group of teachers, I have always been that kid in the back row, trying very hard to become invisible. I've changed a lot.
Part of the change has resulted from accepting a "label" that gave me a lens through which to view previously inexplicable behaviors, perceptions and preferences. The bigger part of it, I think is the result of what's been called "giving up". I stopped trying so hard to do things "the right way" and started accepting the ways that I could do things. Now when I speak, I don't worry that I'll forget something like the word for "puppy" or that I'll be rocking back and forth a bit or that I'll throw in too many "umm"s and "ahh"s.
I don't worry anymore. I know I will do these things. They are a part of me, not affectations to be eliminated, but a part of the presentation, a part of the message. Form and function, acceptance in action. Just one of the things I couldn't do before, but now I can, now that I've finally "given up".

18 comments:

  1. Insightful and helpful as always. Accepting the label sounds very much like admitting powerlessness in 12 step. It is having the serenity to accept what we cannot change... One of my readers asked me a question about labels, so they have been much on my mind as I prepare to blog about them today. Thanks for the food for thought.

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  2. A diagnosis and a label are, or should be, two separate things. Whether or not it is appropriate to construe a set of traits as a disorder is one question; whether it is helpful to have a label that identifies a group of people who have such traits is an entirely different question.

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  3. I will bookmark this post and try hard to remember some of the way you phrased things, the next time someone "helpfully" tries to talk to me about labels.

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  4. A couple months ago I heard on the radio that David Byrne (of Talking Heads fame) had been diagnosed with Asperger's. He was quoted as saying it wasn't so much a diagnosis to him as an explanation. I can see how getting a "label" at any age could be helpful.

    karen in ca

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  5. Hi, Bev. I'm the OP on that.

    I'm glad the name has been helpful to you. To me, it still looks nonexplanatory and hence not useful. Yes, I'm clumsy, I have trouble marshalling coherent speech sometimes, I walk in some distinctive bouncy way I don't seem to notice myself, on and on. The thing is, though, there was already a unity to these things, and that unity was, and is, me. I don't and never have needed permission to be who I am. I'm sure that there was pressure, probably still is pressure, to be some other way, but fortunately I seldom feel it. When I do, I feel it lightly, because the idea that I could conceivably be elsewise makes about as much sense as, I don't know, saying that if I just tried harder I could be germanium-based. (Something I hadn't thought or wanted to be in the first place.)

    To me, accepting the _utility_ of a solely descriptive label is akin to saying "Now I have permission to be who I am, by way of this medicalized list of qualities that describes some of me." It's the abjectness that disturbs me. I don't mean to set up as a Nietzschanon, but who says you need permission? I don't see that you do.

    As far as the "is it my fault" question, I found some relief in the idea of a neurological condition for about two days, and then I realized it doesn't make any difference outside of, say, law. One, other people are going to misjudge you no matter what, and no matter who you are. Two, the only thing that most people want to know, in most social situations I can think of, is some form of "Can you do ______?" Can you do this job, entertain me while I drink my martini, drive this car, chew gum and walk, etc. At the end of the day, I still need to make X dollars per month, avoid getting into legal trouble, do certain things for my kid, and so on. If I take care of these things, the world is largely uninterested in the rest of my life. And if I don't, it's not so interested in the reasons why. They'll decide whatever suits them on that score.

    It occurs to me, by the way, that attempting to teach people what "neurotypical" and "neurodiversity" mean -- assuming you can get any consensus -- is probably tilting at windmills. I go through something that should be much easier than that every Christmas. So does nearly every Jew in America outside major cities. For about three weeks, wellmeaning people want to be thoughtful about Chanukah, and they want to be enlightened. I avoided this for a long time, but now that I've got a child it's unavoidable.

    I have found it to be nearly impossible to communicate the very existence of a non-Christian point of view to even the most ecumenical, areligious American Christian-by-default. It's as if you're trying to take them on a walk in the sixth dimension. They don't know how. They don't know what it means.

    The kindly American response is to hope that at bottom, all religions mean the same thing, and all the views are the same. They don't and aren't. If the windowshade does manage to roll up a crack, the response is swift and violent, as well it should be. Most people, I think, do not want to know that other people are walking around their neighborhood with essentially alien beliefs and experiences. It's a threatening thing. You'll recall that in science fiction, the first question about aliens is "What do they want?" At heart it's about power. Same applies to "neurodiversity". What can it mean to them if -- to them -- ASishness a way of perceiving the world they can't sense? And as they're in the majority, why do they have to care?

    If you actually manage to communicate some sense of what an Aspergerish life is like (assuming that we're not all jumping the gun in agreeing that there is such a thing), my guess is you'll freak the shit out of people. They will (accurately) perceive it as a threat, and perceive you as making a bid for social power, at their expense. Which you are. And I don't think you want that. You will not, however, have managed to communicate a rich sense of it to many people at all. So here is my question to you: Would you rather be left alone and viewed as weird, or would you rather spend your days attempting (almost entirely futilely) to correct massive misperceptions, which will mean in the end getting people to mouth formulas they don't understand, and fighting diversity politics? And being viewed as weird? To me, it looks like a tar baby.

    Another delightful fork for this to take is for this majority party to look heavily at you and say, "OK. You want us to set up an entire separate apparatus that counts as 'able' and let you go play in it instead of doing what the rest of us have to do. What do we get?" Well, you already hear the noises. AS people are savants. They have special talents. Special powers of concentration. They're geniuses. We need what they've got. Now if you want to be farmed -- and ultimately disappoint the farmers, but somehow keep having them on, which is more or less how liberal arts faculties work -- groovy. But it doesn't sound so good to me.

    Personally, I think "disabled" is probably the best you'll do in terms of awareness for a long, long time. Note that this has to do with performance, not reasons for performance -- again, because that's what people can understand and care about. Can you do. No? You're not just weird or different, you're disabled. We know what to do with that.

    Anyway. What I'm saying, in the end, is that I think having the label make a personal difference speaks to insecurities that are only bypassed with the label. And I don't think it's usefully explanatory to the rest of the world unless you need that disability ticket. It's nice as a secret handshake, though, online.

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  6. Anonymous...I totally disagree with you. I completely agree with Bev.
    My daughter has Asperger's. The diagnosis explained her - it didn't really define her. It gave me a point of reference from which I could try and understand her.

    If most of the criteria to become diagnosed is based on how a person relates socially, there has to be a label. Your explanation of Jewish holidays is perfect. There is a big social "island" for people who are Christians, then smaller social "islands" for people who have other beliefs. If you don't want to be a bridge to help people understand your social island, that's ok. But don't expect people to understand how not to offend you, and to ask you questions about your island at other times...that is not the way societies work. There has to be some bridge to go back and forth to the different islands for there to be any real communciations.
    I tell my daughter that her way of seeing the world is like an island. She can stay on the island all by herself most of the time, but she has to know how to get over to the bigger island where most of the people, so she can work, live, eat, all that stuff. For me to help, she has to make that bridge, and I have to make one over to her. The only way the bridge-making can work is to identify the islands.
    Bev, I think what you are doing is important and well worth any energy you expend to do it. You are helping other people with the bridge-building, and it's very helpful.

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  7. Anonymous,
    Thank you for taking the time to write this lengthy comment. I do understand your point of view better now, and appreciate your experience. You make a lot of interesting points here, and you are correct that insecurity has a lot to do with this. Insecurity and self hatred are important parts of my history, and my joy at having put those, for the most part, behind me, accounts for much of my exuberence and outspokenness at this point in my life. Most likely, this will lessen as the time since my diagnosis increases. For now, I can only speak from the places I've been myself, as much out of gratitude for this newfound ability to act as anger toward those who would squash the spirits and individuality of younger and/or more vulnerable autistic people.

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  8. I just wanted to say that I also disagree, respectfully, with the anonymous commenter. Bev, what you are doing helps. Maybe just one person at a time, but I think that's really important.

    Just this morning, I was thinking about how coming across your blog and others in the webring have helped to enlighten me in ways that no therapist or professional in sp ed EVER could have. I just made the decision to move my son from a cross-categorical class (with WAAAYYY to much noise and chaos, it's making him nuts) to a class specifically designed for students with "high functioning autism." A year ago, that would have been really hard for ME because I was afraid to give him a label of any kind (he is actually not diagnosed with anything that has a name).

    Now I can see the label for what it is, thanks to your insights. So I can say without a doubt that you have educated ME. And with this education, I can be a better parent to my son, not to mention that I have a big mouth when it comes to advocacy for the disabled so your message is reaching others who do not read your blog. In fact, I just explained to my neighbor last night what "neurotypical" means.

    Sorry that got so long-winded. I know you don't need my remarks to affirm what you're doing matters. I just saw an opportunity to share what your words have meant to me and I took it.

    karen in ca

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  9. ohgoodmorelabels/anonSeptember 2, 2007 at 3:19 PM

    With respect to other posters whose children have been diagnosed with AS, and who find life better now:

    Good. That's unquestionably good. But I would caution strongly against construing that as meaning that AS "explains" anything. What it's done is given you a way to re-construe what's in front of you.

    Is it accurate? That's where I'd put the caution.

    I am very wary when people say, "Aha, I have learned about a recently-defined syndrome, so now I understand the specific person in front of me much better." No, you probably don't. You understand the definition of the recently-defined syndrome. There may be enough overlap with the specific person in front of you that there's some real help there, but at some point -- if your aim is to understand the person -- you'll have to forget everything the experts have said and pay attention to the person, letting his or her reality take the lead, and being patient. And knowing that in the end your understanding will be very partial at best, as it is of any other person.

    The very last thing I want, as someone who is likely diagnosable should she bother, is for the wellmeaning to believe, "Now I understand you, because I have these expert guidelines." Apart from the creepiness of having someone look at you and see a list of traits, that list is almost certainly going to be profoundly wrong in various ways. The last thing I want is to be at the mercy of someone applying wrongheaded expert guidelines. And confident in their rightness. I sure don't want to be at the mercy of it while the wellmeaning await refinement of the expert guidelines, which are also likely to be wrong somehow. What I'd like most of all is to be left alone to get by as I do. I've found it works pretty well.

    Unlike Bev, I'm not on a mission to educate the world about AS, in part because I suspect it's as various as people. I think there's a much simple, if much more difficult, approach: Pay genuine attention to the person in front of you. Be quiet and enter that reality as far as you can. Test for yourself; see what can connect, and in general be generous-minded about it.

    There's an analogy with people who come into English lit classes wanting to understand novels via classifications and expert interpretations. In my experience, what such students walk out with is a firm grip on the idea that Jane Austen was a Victorian writer and wrote on various themes, whose meaning has been defined in various ways. That's all very nice, and perhaps somehow useful, but it allows people to avoid reading her stories. They read the words, all right, but they never have to enter the story's world. Apparently to some people this is a frightening thing.

    I used to have a very rewarding time, back before I calculated the hourly wage for teaching community college, pulling students off the safety of that scaffold. Nothing to memorize about a book for a test, no genre labels, no author slotting, no scholarly interpretations. The resistance and frustration were big at first. And then -- after several weeks -- they'd get it. They'd see. Forced to take a novel on its own terms, many of them became readers, if only for a little while. I'll never forget the girl who woke up while reading Babbitt and saw it in the world around her. I was lucky, of course, in that I didn't have real English lit students, who would've given me a much harder time.

    g wrote:

    "But don't expect people to understand how not to offend you, and to ask you questions about your island at other times...that is not the way societies work."

    g, I don't expect people to understand how not to offend me. I haven't asked for that. And I understand that asking is what some people will do. It's exhausting to be a perennial ambassador when there's no real point to playing along beyond avoiding offense. It's also clear that the askers are only trying to do the right thing.

    I understand the point you're making about bridge building. I can also say fairly confidently -- for myself only -- that I would rather not have people attempt to build bridges to me on the basis of abstractions about a general set of traits with a diagnostic label attached. I don't like the feel of it and -- strictly personally -- I would rather not have to accommodate the well-meant misperceptions. It's just tiring and painful. To me.

    I also hear the urgency in your description of how your daughter will need to work, eat, etc. I'm reminded though of a conversation I had with my ex-husband some time ago, when we were talking about the kinds of jobs we would be willing to take. I told him I wouldn't take a job where I had to wear pantyhose, because I'd never stick to the dress code, and that kind of thing causes trouble. This struck him as egregious, and he was actually pretty offended. I couldn't get across to him the idea that no, this wasn't a matter of stubbornness or fatalism or thinking I was too good for office jobs. I just know myself pretty well, and I know that after a little while I'd just stop complying. That this, based on 20 years' experience as an adult, seems to be how I work. I don't wear pantyhose. I could be trained professionally to wear pantyhose, forced through pantyhose therapy, etc., and after four or five days on the job, I'd still go to the ladies' and take them off.

    There was a good long while when he wanted me to go for various kinds of therapy to fix things like this. It was pointless to try to explain to him that this was not only futile, but from my POV, perverse. There were other solutions that suited better: for instance, finding jobs that suit me, building a financial life that accommodates uneven cash flow, etc. Going with the grain. (I don't mean to imply that that's the right idea for your daughter; just to point out that attempting to manually override nature doesn't work so well in all cases.)

    And that's the thing, you know, going against the grain. I'm reminded of how brains rewire after damage, how muscles rewire after polio. I suspect that's some of how I've gotten along. Haven't gone against the grain, but where necessary, I've made alternate connections. Most of them, I think, are not robust. But they serve for a while. That's really all that's needed.

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  10. You know, it occurs to me this "systematizing preference" diagnostic tick-off may be a distraction. Systematizing is what people do when confronted with some organic reality they don't understand intuitively. It's why we have taxa and diagnostic criteria for Asperger's. If social worlds are built according to some widely-felt set of rules -- something most people feel, but some people don't -- then able people who don't have that intuitive sense are going to try to systematize.

    If that's the case, I hope current therapies don't discourage it or try to pull children away from pattern-seeking and fascination with patterns. It may well be an adaptation, even where it appears to be dead-end. If it's so, a helpful thing instead may be to make the kid aware that there is more to the story. It may take decades for the kid to respond, but then synthesis is not something people do well consciously.

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  11. Anyone who underestimates me because of AS.....who labels me disabled........had better never, ever enter contractual negotiations with me.

    It will not be kind. To say I will 'eat their lunch' would be an understatement.

    No one who has ever gone through an auction or contract process with me when I am advocating for a client would think of me as disabled.

    Last night I raised about $1,000 in 15 minutes; for the Susan Komen cancer foundation when I ran a charity auction. Many people there know I am an Aspie. None of them see me as disabled. I have been asked to run another charity auction for them though.

    Life is not always beautiful, but it is a beautiful life.

    ~Sarah

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  12. Extremely interesting discussion. I especially appreciate Bev's comment about writing about where she currently is in her journey of self acceptance. I also needed to read the comments of anonymous and ohgoodmorelabels to show me other ways of understanding where I am, have been and could be in this journey of self discovery that I only recently started as an adult of apparently simliar age to most of the contributors. Mary P Jones, thanks too. I have only recently understood that I do not need to be omnipotent. Now that I am able to accept myself as not having to be perfect, it is a huge relief to myself and I am sure to those that share my life. As always, there is some personal validity/relevance of every person's viewpoint. Thanks to all contributors!
    MSA

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  13. Follow on on previous posting: Re the brave statement of being released from the need to be perfect: I see I made a spelling mistake. This is TERRIBLE! I should be over the shock in a week or two. Progress. I think....
    MSA

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  14. i think labels are only bad when people use them to limit themselves or other people. if you can take pride in these "labels" or identities and use them to connect with people similiar to you and build community, then they are positive right? or do you think "labels" are different from identities?

    i realized today that every single thing i take to school on a daily basis has something about disability on it... my AAPD bookbag, pride buttons on my handbag, a banner on my med. equipment bag, my pride tshirts... hehe :)

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  15. I am glad you are more accepting of your self.

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  16. ohgoodmorelabels - I don't see this as a "labeling" thing. I don't label my daughter as anything. Except maybe stubborn, because she is very very stubborn. She got it from me though, so I can't really complain.
    And I cannot build the bridges for my daughter, nor would I presume to do so. She has to do it on her own. But until I understood that she was coming at me from a completely different place than I had ever dreamed possible, I didn't even realize that she had no idea how to make those bridges. I didn't realize I had to make a bridge out to her either.
    Maybe this analogy is better: For good bad or whatever, society puts people in boxes. Male, female, black, white, Republican, Democrat, Yankee, Southern. Whether we like it or not, people have expectations on how we are to behave based on those boxes.
    I never knew there was an Asperger's box. And that people who are diagnosed with this thing called Asperger's will most likely behave in certain ways. But because I know this, I can understand why my daughter rubs her hands on her pants (stims) and I know it's no biggie and don't try to get her stop - like I did before when I thought she was just in the other boxes. I understand now why she behaved in ways that were so odd ... she was just being herself.
    But because I (the person receiving all her social cues) didn't have a way to decode the social signals she was giving me (because I didn't know about the Asperger's box), I caused her and myself so much unnecessary grief trying to make her act like a normal little girl.
    She does not allow this so-called label to define her. But it is one of the many, many boxes she comes from. That's really the key I think...we live in this society that expects everyone to fit into one tidy little box. You know, if you aren't with us you are against us type of mentality. So I understand the fear of getting labeled. My daughter lets me know about that fear all the time - she even hates getting academic awards from the disabilities dept at her university for that very reason. She doesn't want to be known as the smart disabled kid, she wants to be known as the smart kid.
    I think the way to change it is to let everyone know about all of the different types of boxes that are out there. Bring some more understanding, so it won't come as a shock to people that there are all sorts of boxes out there.
    As far as therapy to fix her..I don't think she is broken. I think she has to know how to communicate with people that don't understand her differences or she is going to get ripped off/treated like crap/miss out on opportunities that she should have. But I have faith in her...she is very stubborn after all.

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  17. One of my dad's co-workers a few years ago, after he mentioned my diagnosis, just couldn't believe that he'd let me get the label, and was absolutely confounded that he'd told me. Luckily for me, or else I would not be able to go to the school I'm going to, as it takes me past my breaking point. In a good way, though, although there are times when I get negativity, but it's from the adult school staff, not my peers.

    Also aside from needed accomodations, it helped me to solidify the understanding that I had been throughout my life discriminated against. I knew that there had been more going on than I could chalk up to being female or poor or gay. It helped me understand myself and get in touch with the community, and reading blogs such as yours and the others I read have provided me with an English translation of things I've been trying to express for years.

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  18. For me my diagnosis is very personal. I use it as a cornerstone to my own understanding. It provides rhyme and reason to my observations about myself and a good launch point from which I continue to evolve. A catalyst for my evolution is this understanding. I don't expect others to understand and to avoid being pigeonholed or type-cast I avoid sharing my diagnosis except with people I truly trust which are far and few in between.

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