March 12, 2012

The Gift of a Label

Posted in Marginalization, Reality, Uncategorized tagged , , , at 12:28 pm by chavisory

The last several weeks have brought a series of unfortunate articles, op-eds, and blog posts trivializing or dismissing the validity of or need for the Asperger’s Syndrome diagnosis—usually in some kind of misconstrual of what it means that the designation is being removed from the DSM-V in recognition that it’s redundant with “high-functioning” autism.  These pieces often contain, or inspire in the resulting comments and letters to the editor, a raft of responses to the now widespread recognition of Asperger’s Syndrome—along with other invisible disabilities, learning disabilities, and subtler neurodevelopmental conditions—along these lines:

“Why do we have to pathologize everything?”

“Why can’t we just appreciate people for who they are?”

“I don’t want to label my child.”

“Labels are for soup cans.”

“But everyone has quirks.”

“Didn’t we just use to have a broader conception of normal?”

“Aren’t we all just human?”

I want to explain why these make me violently annoyed.

And there was a time when I might even have said the same things.  When I would have given a lot just to be treated like everyone else.

But eventually I realized that is not what people mean when they say that.  What they really mean is usually one of two things:  First, that “I don’t, can’t, and shouldn’t have to try to understand how things are truly different for you.”  They don’t want to, or can’t, recognize that other people’s experiences, needs, or abilities can be very different from their own and yet equally real.

It says they’d rather deal with the superficial and they’d rather you be superficial.  Preferably in ways that make them comfortable.  It’s an alternate take on “but you don’t look disabled.”

Or, second, it means they don’t understand that it isn’t the label that makes someone different, or makes other people treat them differently; that it is the underlying condition itself that makes someone different, that is the reason they function differently, and that makes you know you are different.

And I did know it, at a very early age, and even when no one else would admit it.  Don’t kid yourself that we don’t know we’re different if no one tells us.

It’s the label for a condition that confers the knowledge that what we’re going through is known and recognized and survivable.  That we are within the realm of human experience.  That there even is such a thing as we.

*****

To be denied a name means having your very existence as a person who has a certain experience undermined, denied, and even disallowed.

The fact that we have words for things is an acknowledgement that those things are real, that they are part of our world.  George Orwell knew this when he wrote 1984, in whose dystopic language system, Newspeak, words for concepts that Big Brother doesn’t wish people to be able to describe are systematically stricken from the English language, so, for instance, without a word for “freedom,” no one will be able to conceive of the thing itself.

I also find it striking that in so much literature concerning magic, magical ability turns on a wizard’s, elf’s, or magician’s knowledge of true names, or true language.  To know the true names of things is to have mastery over your world.

It’s not just what you are, but how the world works for you.

Try going through your life every day, being able to tell that things simply don’t work for you like they do for everyone else.  That you can try to do everything exactly the same way that normal people seem to, and yet somehow it just doesn’t work for you like everyone says it should.  From the way shoes fit to the way sales clerks treat you, how food tastes and feels, how your brain organizes information and how medications work (or don’t) to the color saturation of the natural world to the essential nature of reasoning, time, and memory; to the fact that no one ever quite understands anything you say.  Then tell me you don’t need an explanation.  Then tell me that you wouldn’t give anything for one word to tell you why.

Or imagine the single most true thing about yourself.  Whatever that is for you.  The most true word that springs to mind when you think “this is what I am in the world.”

Now imagine that everyone in your life denies that it’s real, or even possible, yet finds a way to punish you every day of your life for functioning in accordance with it.

I know what it is to be told day after day, in ways large and small, “real people don’t work that way.”

Since I have a label, I know the world I belong to is real, and the people I belong to are real.

That there are people I can go to for support and advice, and they know what in the hell I’m even talking about.

That somebody else’s child doesn’t have to do what I did thinking they’re alone in the world.

I doubt I can make you feel what a miracle it is, if you’ve never lived without that.  If you’ve never been without the ability to hear another person say “I know,” and know it was true.

That’s what it is for me to have a label.

*****

And then there’s this rationalization being thrown around that all of these people who shouldn’t really be labeled with an ASD—regardless of whether all of their characteristics do add up to autism—can be re-classified and receive services for all of their various subordinate learning disabilities and other issues, which just have other names like “non-verbal learning disorder,” or “social communication disorder,” etc.

But here’s the problem:  I am not simply an amalgamation of all of my various quirks, disabilities, and learning/perceptual/emotional/physical differences.  I’ve made that list.  There’s not another category that even could better account for what I have.  I knew all of the various traits that made me hopelessly different, but without being able to know why, and it had me actually formulating hypotheses of how I was really a fairy being and not human at all—some highly unlikely genetic throwback to an unknown species, older and distinct from modern humans—of which I was the only one left.  (Kind of like how if you backcross zebras for long enough, you get something that looks a lot like a quagga.  I identified with Henry the quagga for a long time—a creature that wasn’t supposed to exist anymore, but somehow, sort of, did.)  I literally, seriously believed that I was the last fairy on earth because it was the only remotely coherent explanation I could come up with on my own.

The word “loneliness” doesn’t really begin to name that way of existing.

So, yes, you can just like and appreciate me for who I am.

What you cannot do is treat me as a whole person by trying to remedy separately all of the difficult traits that come with what I am.  Because that is what turns a person into nothing but a collection of flaws.

No, you cannot “just accept someone for who they are” if you have no intention of acknowledging what that actually is.  You cannot do that while you deny and belittle what somebody is actually experiencing.  You cannot do that if you see acknowledging disabilities as a shameful thing.

No, you cannot just accept someone for who they are, if what you mean by that is the exact opposite.

*****

“But imagine the effect on a child of being told your brain works in a way it doesn’t.”

“I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.”

I don’t want that either, and I don’t have to imagine.  I was constantly being given a description of my mind that wasn’t true.  It is a terribly alienating and disheartening experience.  We should obviously endeavor not to misdiagnose people.  I was misdiagnosed with some other things: being able to speak but just not wanting to, depression, dysthymia, and being a control freak perfectionist who just didn’t want to admit I wasn’t unique and whose standards for humanity were too high.  I know firsthand the harm of misdiagnosis.  I am not denying that misused labels can be damaging and prejudicial.

But there is no evidence that ASD’s are systematically over-diagnosed by professionals.  What I do see happening is that mainstream pop-culture does not truly understand what ASD’s are, and so misinformed laypeople speculate baselessly about odd personalities like Al Gore, Warren Buffet, Bill Gates, etc., based on shallow (and frequently false) stereotypes.  When these writers wrongly conflate this cultural trivialization and misappropriation with rampant over-diagnosis to argue that Asperger’s Syndrome (or any invisible disability) is a dubious and unnecessary designation, they contribute to the very trivialization they claim to be opposing.

*****

In my last production, a character says with sad resignation near the end of the play, “There is no word for what I am.  I have looked.”

And that’s what you perpetuate when you deny or scoff at the use of a word for what someone is, or what they have, or what they identify with.  You say “you don’t need a word for what you are.”  You say that your wish for denial takes precedence over theirs for self-knowledge, acceptance, practical information, treatment, or however they need to deal with the truth.

And If you’ve never needed a label, needed a word, needed a name, and not had one—or as Emily Willingham wrote last week, “If you have not lived a life like that, one that has been bereft of an emotional glue that groups you with others who feel as you do—then you are privileged indeed.”

If you have not lived my life, you do not get to decide that I don’t need language for the experience of it.  You do not get to say “there is no word for what you are,” that “there is no word for what you share with other people,” when there is.

Because there is.

Advertisements

16 Comments »

  1. Beautifully said, Chavisory!!
    After 65 years of knowing I was different, I finally discovered there is a name for this difference and a community of like-minded people to whom I could relate.
    Now they want to fragment not only our “group,” but our very selves into an array of splinter diagnoses? We don’t need people, who do not understand us, telling us who we are.

    • chavisory said,

      Agreed, Bruce. And the worst part is–I mean, apart from scientists not understanding Occam’s Razor–from what I’ve read, it seems like the major motivation for doing this is NOT that it’s actually more clinically or empirically correct, but either with an ulterior motive to bring down the number of people diagnosed with ASD’s and thus halt the panic over the “epidemic,” or because of the unsubstantiated belief that people are being rampantly diagnosed who are really “just awkward,” or “just geeky.” (i.e. “but you don’t look disabled”) I mean, the author of one of the Times op-ed pieces actually cited as evidence for Asperger’s being over-diagnosed that *there was a South Park episode about it.*

      I really lucked out, even considering that I chased referrals for 8 months, that I landed a knowledgeable and sensitive psychiatrist…I could just as easily have wound up with one who might’ve said “No, you got through school, you’re employed, you have friends. You can’t have AS,” without any accounting of the struggle that those things have been.

      I’m very much of the mindset that “if we do not hang together, we will surely hang apart,” as far as people with different kinds of autism sticking together and standing up for each other. It’s true that not every awkward or strange person is autistic…but MOST of those people do not have an ASD diagnosis.

  2. jaynn said,

    “I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.”

    Yet by denying that autism exists, or at least avoiding the label of it, they are doing just that. Once I got over the initial disappointment of having it confirmed that yes, something was indeed wrong with me (no, I don’t think that anymore), having the label was incredibly comforting, because it took all those little weirdnesses that I’d noticed over the years and put them into a working framework. It gave me a way of assessing myself in a way that didn’t set me up for failure. 24 years of trying and failing to be ‘normal’, is it any surprise I became depressed?

    • chavisory said,

      Yup. This writer shouldn’t have been misdiagnosed, and I wish it hadn’t happened to him, but then for him to turn around and say “we need to severely restrict who can have an ASD diagnosis,” he’s asking us to do the exact same thing to kids with milder ASD’s.

  3. […] great post on this subject here. Share this:TwitterFacebookLike this:LikeBe the first to like this […]

  4. Sheila said,

    I just found you through Brenda’s blog post “15 questions” and I am so glad I did. My son Aidan is 10, soon to be 11 and has a variety of diagnosis, HFA, Auditory Processing Disorder (true dx IMO), Anxiety, anyway he loves all things musicals, plays etc. My son lives for BROADWAY-declared 3 years ago he wants to live “in the city”-we live in southeastern CT, so that is not happening. I take him to see a Broadway play at least once a year and then to see tour productions closer to home more often. My question-how did you get involved in the theater, this is something he would love to do! If you have any suggestions I would be grateful. If I am overstepping my bounds, please accept my apologies!

    • chavisory said,

      Hi Sheila–not at all!

      I’d always enjoyed doing class plays when I was younger, but I got seriously involved in theater in high school when I started working on the scenic crew for the school productions. I decided to major in drama in college, and that’s where an instructor introduced me to stage management. (I loved acting, too, but realized it probably wasn’t a sustainable career for me.)

      I love that Aidan loves theater so much! He’s probably seen more Broadway shows than I have…I’m always busy and don’t have time to go. ; )

      • Sheila said,

        Thanks so much for responding! Aidan goes to a school for children with LD, so theater/drama classes not an option. I am looking into local productions, classes etc., but with his “specialness” I am not sure they will accept him. I will keep trying though!! You are an inspiration and I can’t thank-you enough for sharing yourself with all of us. I’ll let you know the next time we head to NYC, and maybe……

  5. chavisory said,

    Totally!

    It would break my heart to think a drama class wouldn’t take a student with disabilities…grrr. You might also look into community theater in your area, whether they have open auditions or other ways for people to be involved or volunteer.

    There was literally nothing better for my learning communication skills than being trained in theater.

  6. Ada said,

    Oh, lord, I thought I was a fairy, too. I wonder if that’s common for autistic girls of a certain bent?

    • chavisory said,

      Ha! Right, like some people automatically think “alien.” But…I always felt like I belonged to the natural world, among other things, so “fairy” presented itself instead.

      But also…autistic children used to actually be believed to be fairy children or changelings in some cultures, so it makes sense that the trope of the fairy took on implied traits of autism, and then when encountered centuries later by autistic girls of a certain bent, of course recognize ourselves….

  7. waggermama said,

    Reblogged this on Waggermama and commented:
    I need to dog this to remind myself why I’m trying to get some sort of diagnosis.

  8. waggermama said,

    Thank you. I may need to print this out and give it to my mum to read. It’s this kind of denial that most often make me doubt myself (I’m currently seeking diagnosis)

  9. cambriaj1977 said,

    I was diagnosed at age 3, clarified at age 7/8. My mother gave me what I needed: mainstreaming BEFORE mainstreaming was a big treatment. Also, consider this: “But you don’t seem autistic” is as damaging and prejudicial as “You’re not black enough.” (Seriously, what is race? What is an autistic’s potential?)

  10. Jen said,

    Thank you. All of these reasons you so eloquently stated are exactly why I fought for so long to get my son properly diagnosed. Precisely because we were treating each individual challenge separately, and I just *knew* there was more to it that would explain the missing piece. Having the label hasn’t really changed what we do, or how we do it, but it helps knowing that our struggles are legitimate, and it makes explaining to others so much easier.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: