The Gift of a Label

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.

If you can’t…

I think I never intended to write this post.  It’s personal, and it’s a hissy fit, but one I felt a certain responsibility, the more I reflected on it, to transcribe.

I was diagnosed with Asperger’s Syndrome last year, which most of you probably know because I talk about it on Facebook enough, because I decided that it was part of my life that I wasn’t going to make any particular effort to hide, because I had nothing to be ashamed of.  (I’d known the truth for several years before I sought out a correct diagnosis; a few people knew, but I didn’t talk about it much, for fear of a lot of things.)  I really have no idea what people think of me as a result, because I stopped concerning myself at a pretty early age with what people think of me.  Because living in thrall to the opinions of people who don’t have to live your life is no way to live at all.

Anyway, so I’d started to think of it as old news that I was autistic.  I’d started to settle in to living as a whole person, without an emotional double life.  Then last night, I was rather emphatically asking my mother not to describe a young relative, currently in the process of being evaluated for autism himself, as not having a personality, because such language is often used to justify all kinds of mistreatment and prejudice against us, besides not being true.

“But you’re not autistic.”

Which is where my brain froze up.  Because honestly?  I don’t know what else I am.  Everything comes home to that.  Everything. Before I understood what AS really was, I didn’t know what I was at all, except for lost and completely alone in the world.

“I don’t think of you as really autistic.”

This is everything I didn’t have it together enough to say at the time.  This is what I’d say going forward:

If you can’t see me as autistic, then you need to revise your view of autism.

I am “not like that kid” you saw who runs around screaming, or who can’t communicate at all, because I grew up.  And because we’re all different, because we’re all different people, who cope with unique profiles of challenges and gifts in individual ways.  I am “not like that kid,” because, to be perfectly literal, I am not that kid.

We are as unique as the stars.  They say autism is a spectrum, but I don’t think that really describes its variety and complexity well.  It’s not a simple progression from mild to severe.  I often say it’s more like a constellation, or galaxy (which, another blogger pointed out to me today, has the added metaphorical benefit of being a 4-dimensional construct; it changes through time for every person as well).  There are people with far more severe problems with independent living than I have, who are smarter, better writers, incredible artists or just incredible people.

I am far more fortunate than many, and not as lucky as others.  I know this; you don’t need to rub my nose in it.

If you can’t think of me as autistic because I have so much personality…actually, we usually do.

If you can’t think of me as autistic because you see me as a competent adult, you didn’t know me as a child.

If you can’t think of me as autistic because I’m verbal and communicative…read more about AS.  Those things are features of the condition.

If you can’t think of me as autistic because I’m so good at my job…please consider that it’s a job that largely entails “keeping track of everything that no one else wants to” (to paraphrase the college instructor who introduced me to stage management as a career option), organizing, color-coding, and working with a collection of people who are also socially marginalized, passionate, obsessive, highly sensitive, and reliant on consistency and repetitive and ritualized behavior.  (Actors, I adore you all so much.)

If you think I can’t be autistic because I’m so good at multitasking, well, I’m not.  Good at multitasking, that is…I can’t do it at all.  I know I’m taking a certain risk in telling you this.  What you see when you see me do my job is the result of copious amounts of planning, mental choreography, scripting, queuing, pre-thinking, mapping out scenarios like computer flowcharts, making Excel spreadsheets, preparation and learning from experience, and excellent assistants being good at their jobs, too.  (Stage management and life with Asperger’s are both centered around dealing with a quantity of data that a single human being is not truly equipped to handle.)

You get good at anything you do for a long time.  I got good at my life when I stopped trying to live one that I realized I could never have.

If you can’t believe I’m autistic, what on God’s green earth do you think I am?  Because I sure as hell failed at being normal.

I’m autistic.  There’s not another or a better word for what I am.  It’s one I searched long and fought hard for.

If you can’t think of me as autistic, it’s not so much for my sake that I care, but watch out that it’s not because you can’t believe that autistic people can be intelligent, kind, good-humored, good friends, good at our jobs, capable of love, highly-skilled or talented, complete human beings.  Because if your prejudice is that autistic people can’t be these things, you take chances for jobs, education, friendships, and quality of life away from autistic people who are a whole lot less lucky than I am.

Reality: Ur doin’ it wrong.

On Fantasy

 Fantasy is silver and scarlet, indigo and azure, obsidian veined with gold and lapis lazuli. Reality is plywood and plastic, done up in mud brown and olive drab. Fantasy tastes of habaneros and honey, cinnamon and cloves, rare red meat and wines as sweet as summer. Reality is beans and tofu, and ashes at the end. Reality is the strip malls of Burbank, the smokestacks of Cleveland, a parking garage in Newark. Fantasy is the towers of Minas Tirith, the ancient stones of Gormenghast, the halls of Camelot. Fantasy flies on the wings of Icarus, reality on Southwest Airlines. Why do our dreams become so much smaller when they finally come true?

We read fantasy to find the colors again, I think. To taste strong spices and hear the songs the sirens sang. There is something old and true in fantasy that speaks to something deep within us, to the child who dreamt that one day he would hunt the forests of the night, and feast beneath the hollow hills, and find a love to last forever somewhere south of Oz and north of Shangri-La.

-George R. R. Martin, author

**********

I feel much the same way as GRRM about fantasy—that it connects us to a deep internal knowledge and history of our own psyches, and recalls something huge and eternal in us.  Epic fantasy, when I was in middle and high school, assured me that there was so much more worth living for than my schools and community were trying to tell me.

But I’m not sure about his dim view of reality…as opposed to the disposable and shallow nature of much of what is sold to us as “reality,” and told we have to accept as the scope of our adult lives.

May I suggest, that if strip malls, plastic and plywood define your reality, and you don’t like it…you’re doing reality wrong.

Because reality is all that stuff, George, but reality is also—

The whistle and rumbling murmur of an early-morning train.

Reality is the first pale green shoots of peppermint pushing up through the dirt in March.

Reality is the guy who plays Simon and Garfunkel’s “El Condor Pasa” on Peruvian pan pipes in the Times Square subway station.

Reality is the stunning silence of a great blue heron taking flight.

Reality is the old Hispanic men in my neighborhood who sit outside in the summertime, playing an eternal sidewalk game of dominos with their boomboxes turned up loud.

Reality is sunset over the Hudson River.

Reality is moonlight, starlight, candle light, lantern light.

Reality is creaky old bookstores, and the thrill of reading a forbidden book hidden between the shelves.

Reality is the feel of sand as soft as cake flour under your feet.

Reality is the smell of wood smoke on the first cold night of fall.

Reality is stained glass, dark coffee, red wine, rosewood incense.  The brush of a fat cat around your ankles, the way evening light moves over the Brooklyn Bridge and tops of the sycamore trees, rooftop Fourth of July parties with the sky on fire around you, waking up on a foggy morning in the Catskill mountains, the sound of the concertmaster tuning an orchestra, tiny cemeteries behind old churches, hidden waterfalls, thunder in a snowstorm, the way deer’s eyes shine in the dark in a flashlight beam.

Nurture magic, wonder, and beauty wherever they occur in your life.  They are real—far more real than strip malls, suburban office parks, and Disneyland—whatever anyone tells you.

What we’re doing instead

I so, so wanted to like this article from the Times, about what some recent graduates of prestigious universities are doing with their lives during the economic downturn instead of the stable, decently-paying jobs in their career field that just aren’t available.  (Generation Limbo: Waiting It Out)  I so, so almost did like it a lot.  Obviously, we didn’t get past the headline without another cute moniker for the latest crop of highly-educated youth left aimless and adrift by the recession (how many names have we had?  Gen Y, Gen Why?, The Millennials, the Peter Pan generation…I’ve had a couple of ciders and I’m losing track.  What are we now?), but it came so close to hitting a mark of sorts concerning how young adults are coping with this economy, without a heavy dose of the condescension and belittlement that so often accompanies Times articles about the generation that supposedly just won’t grow up.

It’s not the subject matter of this article that I find objectionable, because I’m very interested in what young adults and especially the newest graduates are finding to do right now.

It’s the slight tone of amazement and false levity that’s a little annoying.  A summary of the article could almost have read “Some graduates without corporate jobs decide to not be miserable, live lives anyway, do something creative.”

Lions and tigers and bears, oh my.

Some of the subjects profiled are Stephanie Kelly, who has two underwhelming part-time jobs, but sort of enjoys the spare time she has to cook and write; Amy Klein, who took up a friend’s offer to join a punk band when it was clear that a career in publishing wasn’t going to be forthcoming anytime soon; and Sarah Weinstein, who manages a bar while doing media relations for an animal shelter as a volunteer.

“No career? No prospects? No worries!” chirps the author in summation of the outlook of these graduates who are taking their situation in stride, or doing something unconventional instead.  But this is simplistic and patronizing.  No, there are plenty of worries associated with having no job stability, an irregular income, little affordable housing, no health insurance, and no idea when the economy might really turn around or how long you might be jerry-rigging a life this way.  But you can let them terrify you into paralysis and submission and mope around your parents’ house sending out resumés that may get looked at sometime around 2015, or you can go out and do something–anything–anyway.

“They are thinking more in terms of creating their own kinds of life that interests them, rather than following a conventional idea of success and job security,” says Klein.

This is sort of how it’s always been for people who, for many reasons, can’t find a place in the mainstream or corporate job market.  And I feel for the younger grads who are finding themselves not able to have the kinds of lives they were brought up to believe they should.  And there are definitely bigger problems of economic justice when a significant portion of a highly educated generation just can’t make money.  But that so many are relearning what they can and can’t do without, and what really matters to them, and questioning what kind of life they really want as opposed to what they once just assumed they’d have, I believe has the potential to be a great thing for America in the long run.

“They are a postponed generation,” intones Cliff Zukin, author of a study from Rutgers on the economic situation of recent graduates.  But people profiled in the article like Kelly and Klein…well…they’re not.  Just because they’re not doing what they might’ve been in a different economic climate doesn’t mean they’re waiting around with their lives on hold, as if the only life worth working for is comprised of traditional job stability, marriage, kids and home ownership.

Life doesn’t get postponed, though certain goals might; life gets lived, one way or another.  Bad economies don’t stop time.

Why should writing, cooking, taking a punk band on the road or doing whatever paid job you can stand to do while you work as a volunteer or activist for another cause be considered stalling on the life path?  Just because it’s a life path that doesn’t take for granted what the upper middle class used to, in the same time frame?  Why is this necessarily considered being stuck in neutral rather than just in uncharted territory?

I’d be willing to bet, for instance, that the day will come when Ms. Klein, whatever she ultimately ends up doing, will be glad for the creative and organizational lessons that she learns on the road with her band, as well as feeling artistically fulfilled.  Because life is funny and resonant and meaningful like that if you’re paying attention.

So godspeed to the young graduates who don’t see a reason to give up and stop living just because their expectations have been knocked around.  I prefer their attitude to that of the experts telling us how stalled and postponed they are.

All you have to do

I am in love with this passage I came across from Sugar, who is consequently my new favorite advice columnist.  She writes in The Rumpus.

“You don’t have to get a job that makes others feel comfortable about what they perceive as your success. You don’t have to explain what you plan to do with your life. You don’t have to justify your education by demonstrating its financial rewards. You don’t have to maintain an impeccable credit score. Anyone who expects you to do any of those things has no sense of history or economics or science or the arts.

You have to pay your own electric bill. You have to be kind. You have to give it all you got. You have to find people who love you truly and love them back with the same truth.

But that’s all.”