Sunday, August 21, 2011


Trading Traits for Wholeness

My son Bud has Asperger’s Syndrome, which is a type of Autism. He also has Anxiety, in the form of free-floating nervous agitation that can attatch itself to any random event on a given day. He has OCD, too; Obsessive Compulsive Disorder, ‘of the mind,’ as I think of it; a rigidity of thinking, as in, don’t mess with his concept, don’t ever try to play him for a fool. And he has Tourette Syndrome, which makes him twitchy, when he’s nervous, which is often; lots of eye bugging and elbow jolting. My husband and I did not know that any of the oddball, difficult behaviors Bud always had comprised a conditional name, until Bud went into kindergarten and had a nervous breakdown; we had a family breakdown, too. We removed him from the mainstream school and began a fractious, panicked odyssey with the medical, behavioral, and educational professionals who would give us that name, Autism, which would in turn get Bud into a wonderful, life-altering school.

My son is Bud, and I like him a lot.

Finding The (Special) School in Brooklyn was not like deliverance; it was the real deal. I don’t ‘believe’ in stuff, like philosophies or gods, in fact sometimes I can barely make sense of objects and people in front of my face; but starting Bud at Special, where his intellect is respected, his struggles are met with compassion, and he has lots of time in the gym, transported us all from chaos to peace.

By February, he was settling in there with antennae-raising ease; when would the other shoe fall? It didn’t (for the most part.) Bud was happy, for the first time in months, and as Bud goes, so go the rest of us. Now I had a little time to catch up on Autism and disability readings (oh, super.) As I searched for my own son among the blogs, articles, and social media posts, I often found him, and that rattled my cage but good. Quirky and singular to be sure, Bud also conforms to whole rosters of traits for which Autism spectrum kids are famous; that’s good news, and bad news.

Good news; Oh, my kid has Autism! Well now things are starting to make sense, and we can work with him. Progress! Cool.

Bad news; Oh, my kid really does have Autism. He’s not a supreme being from outer space. Shit.

The emotional roller coaster of the Autism parent’s learning curve could drive a mother back to smoking (what?) However, I also discovered the phrase ‘neurodiversity,’ which was different kind of revelation all together, but I’ll get to that.

Jimmy, my X-husband, a deeply valued if rarely seen friend, had been keeping up with me via email during all this, which was a lifeline at the time. My birthday was the nostalgic reason for his most recent message; the Internet is the best relationship we’ve had. Unlike our marriage, we now share and laugh, from the safe distance of wholly other boros and lives. It’s perfect for him, a social-phobe who keeps his feelings and artistic gifts hidden from the world. We share a Zodiac sign, so it was his birthday, too; a chance to taunt each other about the rapid approach of old age, and death, which Jimmy liked to say couldn’t come soon enough.

We embrace dark humor, Jimmy and I, like many Pisces, yet are both given to sentimentalism; it’s that kind of Piscean thing that made us wrong for each other in the real world; no balance. Dramatic, self-pitying, we’re also paranoid; but I don’t believe in stuff, right? I mean, just because two people with the same birthday are morbid and excessive doesn’t make the Pisces profile true, does it?

The thing about the Zodiac though, as something akin to a guiding principle, is that its trait-based premise is a little compelling, because of the annoying frequency with which it’s spot-on.

A Zodiac website’s description of Pisces as otherworldly… lonely in a crowd… struggles with reality… creative… deep… a tendency to be the cause of your own unhappiness… fits me, and Jimmy, so snug it hurts.

And take, for example, Gemini Bud and his Gemini grandpa, Papa (or take them for an afternoon… or a weekend… I’ll pay… I’m kidding!... sort of…) who are by turns gallant, rude, kind, combative, gentle, abrasive, sullen, charming, broken, and strong. They are, like Gemini itself, The Twins.

The website describes Gemini as people who may think too much or over-analyze… enjoy companionship and dislike being alone… need constant excitement and stimulation… tendency to become bored...

Replace ‘companionship’ with ‘audience,’ and you’ve got Bud, and Papa, to a ‘T.’

I haven’t spent lots of time looking at other signs’ traits, because as a typically navel-gazing Pisces, I’m too interested in me and mine. But if feels meaningful to me that I have lots in common with other Pisces women I’ve known, that man-Pisces share stuff with Jimmy, that the Gemini are all a bunch of hard cases, and it made me start to wonder, as I came out of my post-diagnosis fugue, about the constellation of people I love, the central star of which at that moment was Bud...

What do traits mean?

Jimmy doesn’t deal with people, which I thought at first was a tough-guy act, and later realized is central. He barely ever makes eye contact, and in fact I knew he really wanted to be close to me when he started forcing himself to look into my face over the many, many drinks we had in many bars, which he needed, to be able to talk to me at all. Jimmy’s also a musician, completely self-taught because he detests teachers and suffered in school. He plays guitar, banjo, and mandolin, and has catalogued in his mind the lyrics to thousands of rock, country, and bluegrass songs. He’s memorized pages, whole scenes, of Shakespeare, just because he likes it. He loves animals, and forests, and had the nickname ‘Finder of All Things Lost,’ for his uncanny ability to locate any misplaced object, any where, any time, instantly; suffice it to say, Jimmy is a weird guy.

Or he just has Asperger’s Syndrome, like Bud.

You see where I’m going with this? I’m in no way qualified to diagnose somebody, but hang with me. Because what I’m proposing is that the traits don’t make the man, or the little boy, for that matter; I think it’s the other way around.

Jimmy kind of cares about Bud, in that creepy telepathic way that hermits love, by tasting the air, smelling with their hearts. A false extrovert compensating for social terror myself, I understand this deeply; I feel it when my far-flungs are falling, and call or email at the right moment, like Jimmy does. It was a psychic salve to get messages from him because for months, I hadn’t spoken to anyone except doctors, evaluators, and administrators, many of whom I never actually saw; it was like talking into a buzzing, sinister hive of disembodied voices about what, exactly, was wrong with my little boy, and what I was going to do about it. My husband, Bruce, was so busy diving into the fray with Bud, and Moopy, our 4 year old girl, the moment he’d get home from work so I could hurl myself back into the storm of researching schools and coordinating appointments, that I never even got a chance, those months, to keep him in the loop of what I was going to do about it. I was just trying to do it, as fast as humanly possible, or faster. Telling Jimmy about it all was like an affirmation; I wrote it, and Jimmy read it, and that felt real.

First and foremost, I told Jimmy, I was going to get Bud into a school with real teachers and children if it killed me, because the only other choice was home-school, which was no choice at all, though Bud’s traits, taken out of context, might have made him seem the perfect candidate for it. After all, his anxiety went into overdrive around new people and surroundings; his fear manifested as hyperactivity, which, when criticized or suppressed, could morph into animal-spirit-driven violence like a Power Ranger gone to the dark side. We had seen what happened to Bud in a classroom; what I had to hang on to was the conviction that last time, it was the wrong classroom. I believed, and I was correct, that in the right one, all of Bud’s traits, some powers, some fears, could come together, and carry him forward.

Context is everything. Here’s me; I know tons of people in the neighborhood. I can’t gab on my cell while walking the dog or unpack groceries from the car without encountering pals who brighten on sight of me because I am a fun yenta! I am! I love to yak and chat and bitch and gossip and I am funny! And I’m a good listener. I remember everything and I ask all the right questions. Everybody’s kids are happy to see me. And astonishingly, I’m never in a rush… outside.

But indoors? I can’t even be with people I like and have no gripe with for more than a few minutes (without booze,) because my anxiety takes the form of something like claustrophobia; call it cabin fever. I start to have trouble breathing, I get irritable, nervous, even depressed, and I start pacing around looking for chores that need to be done because if I stop moving I will choke like a shark. So the prospect of being stuck inside, with just one person, my passionately beloved, totally unregulated, demanding, irritating, brilliant, button-pushing, and at the time of the school search, still traumatized son, charged with the tasks of teaching him to write, spell, add, subtract, cut with scissors, color in the lines, and not strangle people, by myself, in our apartment, FOREVER, was terrifying.

A school with not more than six children in the classroom, with at least two adults, and no bells, and no getting on line, and no command-delivered directives, no large-scale lunch rooms, no no-recess (good lord,) no no-gym, and no punishment, would have to be found; it would have to. Because as much as new-everything scares the crap out of Bud, he also gets cabin fever like I do, and he was losing his marbles, stuck home every day, and he had to get out of the house and so did I because I am also a person. I am one person. And I can’t show him that he is a person who can cope with the world by hiding him from it.

Special School, I told Jimmy, was practically made to order. “He takes a little bus all the way to Brooklyn every day,” I wrote, “and he has his little classroom of five kids and two teachers, and it’s all very orderly and routine, which he loves, and nobody calls to tell me my kid is weird and bad, because he goes to weird-bad-kid school now, and that’s just the way it is.”

I know it’s glib to say that’s just the way it is. It isn’t that there’s nothing wrong with Bud; of course he is at odds with the majority of the world we know, here, in an urban enclave literally overrun with children; he doesn’t fit in. The traits that make him startling, like being hyper-verbal, intense, demanding, and extremely imaginative, also make him lonely. Most people are doing and thinking things a certain way and he isn’t. We can call that something wrong or we can call it a ham sandwich. But in the right circumstances, Bud can have peace and learning and fun like everybody else. He takes his traits wherever he goes, but in the right context, those traits comprise a thriving child, not an alienated one.

For my part, I know Bud’s not bad (though I do think he’s weird... kidding! Again!.. sort of…) I said it that way to Jimmy for a reason; I have a deep need to appropriate words that threaten me and then wave them around menacingly at other people, even people I love. During Bud’s crisis at, and then removal from, the mainstream kindergarten, nobody actually said the word ‘bad,’ about him to me (they wouldn’t have dared,) it just saturated every conversation; it was the only trait other than compliant that school believed in. By now, I’ve come to learn that Bud is almost never bad, even when his behavior is atrocious; at those times, what I am seeing is balking, not volition. So I speak of Bud and badness to people I trust as shorthand, a code, to get my bearings, and I speak of his badness to people I don’t trust so that I’m the one that gets to own the word.

But I seem to be putting the word aside these days. Bud lives in a blessedly mixed world now, reasonably protected but not isolate, and should stay there for as long as possible. He is learning at Special, to read and spell, math comes easy, puzzles, coloring; the kindergarten gamut. The real work for Bud isn’t the material, anyway; it’s the ability to sit at a desk for four minutes, ten minutes, twenty some day… and get something done. But until then, when he does struggle, Miss Sharon tells me things like, “He needed a break, so I gave it to him, and then he needed another break, and he ended up needing to finish the work during recess, so he saw that he lost some recess time, and next time, I’ll try to help him remember how that wasn’t what he wanted.”

Wouldn’t it be something if all kids could learn the progress of consequences with integrity, could be taught to identify their own private feeling of loss, rather than just be punished? Imagine a childhood without humiliation, how unwounded a person could be.

I told Jimmy about all this, about the gym at Bud’s school, the swimming and the karate, the therapy dogs that visit, and the photography walks, the trips to the library with pizza on the way back. I told him about the OT, Occupational Therapy, as in, how to hear and feel your own body and manage it a little better, with help, with that damn sensory swing. I told him about Speech Pragmatics, as in learning how to talk to people rather than prattling in a panic and finding yourself alone on the playground, or hitting, or being hit, again.

“He has counseling once or twice a week with a psychologist,” I wrote, “where he does get to be his full-bore Asperger’s self, making up prehistoric animals and pacing the office while giving a lecture on the Mesozoic Periods. The psychologist told me she has to get coffee before her sessions with him so she can keep up, that she’s always afraid there will be a quiz.”

“Man,” I went on, “Autism is the best thing that ever happened to that kid.”
Jimmy wrote back, without irony or additional comment, “I wish I could have gone to that school.”
I responded, “Me, too.”

I wish that Jimmy and I both could have. My own childhood style of anxiety and loneliness was obsequiousness to adults, avoidance of other kids, compulsive overeating, and failing a lot. For his part, Jimmy chose truancy. All we can do now is chalk it up to less being known about the way kids struggle, back in the 70’s, and less still in the 60’s, when Jimmy was a kid.

And speaking of kids who struggle, somebody else who turned out pretty ‘special’ in adulthood but who ‘passed,’ as they say, as a kid, is my husband.

Talk about traits; Bruce was a great student, had few friendships, studied hard. Who had time to play? The two kids he did like spent their time with him painting painstakingly accurate Star Wars murals on their bedroom walls and making 16 mm films about cowboy gangs or alien abductions. As a teen Bruce did not party, and it served him well. He went to UC Berkeley for architecture for a while, then graduated from San Francisco State in filmmaking; not too shabby.

He also went on NO dates during those years, and made NOT ONE new friend in college, not least because he chose to live off campus, with his elderly aunt in her cluttered San Francisco home. Despite a reasonably successful career in cable television that unfolded with mounting promotions and awards, he became increasingly socially awkward as time passed. He married the first woman who would date him and then they divorced; he followed a subsequent failed romance across the country to NYC; and then he found himself alone, well employed, at the prime of his life, emotionally paralyzed.

Asperger’s? Maybe. He was much more than shy, to be sure. He cultivated highly specialized gifts that allowed for an isolate lifestyle and sought the comfort of the familiar at the cost of human interactions; poor eye contact, even what I call poor ear contact; Bruce, Jimmy, and Bud all never hear me (but maybe I’m just annoying.)

As a group, what I really notice about these guys is not only that I love them, but that they share traits, to greater or lesser degrees (and they’re three different Zodiac signs!) So…

What do traits mean?

I’m not a wacko. I’m not proposing that the Zodiac is as relevant an evaluative tool as the research and tests central to the study and treatment of Autism Spectrum Disorders. It’s just that I think we’re not done; and by ‘we’ I mean the everybody who thinks about Autism. Traits are just traits. They mean themselves, no matter how typical, or not, the possessing individual.

But Autism is, every time, a consummate, unique gestalt.

As is a human being.

And that brings me back to neurodiversity.

Todd Drezner, Brooklyn dad of a child with Autism and filmmaker behind the documentary “Loving Lampposts: Living Autistic,” gives us to understand neurodiversity as a way of thinking about people that includes different kinds of minds, akin to the phrase ‘differently abled.’

For example, a person with Autism might enjoy the lampposts, or the benches, in a park, almost exclusively, whereas a person with more generally familiar thinking might love the great big sprawling park as all of a piece. Similarly, a person who is blind might use his hands to learn about a face, rather than his eyes; and while it seems harder, to a seeing person, to learn a face by hand, to a non-seeing person, it’s just his way.

Drezner agrees with me when I add that there’s no real reason to destabilize the non-seeing person by fixing (changing, medicating, altering) his eyeballs. His hands work well. In fact, why not give the non-seer five extra minutes to feel your face? Maybe you’ll like it! Maybe you and your special person can put on blindfolds some evening and feel each other’s faces for a while and see what happens… (Whoops, did I say that?)

Many writers, on the topic of neurodiversity, quote Harvey Blume and Judy Singer with regard to Autism, on evolution’s necessity of difference. Definitions of this relatively new term are legion, but they all seem to me to boil down to what neurodiversity isn’t; discrimination.

And that’s good, but not enough.

I believe, and I’m hope I’m right, that neurodiversity is the relatively simple idea of accepting the wholeness of persons, specifically ones with Autism. It’s not, as some bloggers and advocates fear, about ignoring it, or abandoning therapies that help people with Autism feel more comfortable, capable, and connected. It’s not about forgoing enrichment. In fact, it’s the validation of help. It’s the strangely obvious notion of just including, in our comprehension of people not ourselves, all the kinds of thinking represented on the Autism spectrum as belonging to individuals, and investing them with equal value to kinds of thinking belonging to other individuals.

Like, We’re here, we’re Autistic, fish.

Or, catapult. Meat loaf. Ramphoryncus (it’s a prehistoric ancestor to… never mind.) Choose your non sequitur.

And I like that.

Okay, maybe I do believe in something. For me, neurodiversity is the revelation of something I thought was just appropriate behavior. I’m baffled by the newness of that, but if respect needs heralding, what the hell.

“Bud lives in such a gray, dovetailed zone,” I wrote to Jimmy, “where the traits that earn him a diagnosis overlap so much with aspects of his personality that are just very out there, but also very deep. He actually reminds me of you.”

Ever reliable to lighten the mood, Jimmy responded, “The righteous rule the day!”

And when I tell my husband about Bud spending a solid hour in the corner of his room with his hundred plastic bugs laying out and reenacting, complete with English accent, a ten-minute BBC film narrated by Sir David Attenborough on the life cycle of the cicada, over and over, Bruce smirks, apologizes, and smirks again, because he gets it, maybe more than I ever will. Bruce spends his days mercifully alone behind a galactic digital editing console, tweaking minutia and organizing visual information within a lexicon so erudite that he literally can’t talk about it to me because I don’t speak ‘Edit.’ His work as a video editor and animator is an Aspie dream come true.

For Jimmy, it was dealing with customers in the copy shop where he worked; it’s client meetings for Bruce; and it’s lots of situations for Bud; eye contact gives them headaches and makes them depressed; it’s hard for them to filter noise, and listen. The ‘people problem,’ the ‘noise problem,’ the ‘always a beat behind’ dilemma, are experiences Jimmy, Bud, and Bruce have often; fortunately for Bud, a 21st century child, all the problems taken together have a name, and a very special school, with a teeny tiny classroom in it for just a few lucky ducks.

Bud, Bruce, and Jimmy are not fluid or pliant. They are also not selfish, or unloving, nor cruel. They relish information. They love a few people, passionately. They don’t like interference. They never bully. They stand out, and aside, and that stance says, I want you to be in my world, my way, or, no hard feelings, later for you.

These are their traits. There’s no reason to change them.

For the first time in my life I find myself consciously filled with gratitude for the law. F.A.P.E., Free Appropriate Public Education, for Students With Disabilities, Section 504 of the Rehabilitation Act of 1973, means there’s a good chance Bud will be able to stay in supported, protected school till at least the age of 18, and possibly 21. With a childhood and adolescence of fortification and a hard won tool belt of coping skills, adulthood will be up to him. I’m optimistic, mostly, that he’ll find a safe, tolerable, legal way to make a living, and people to love him other than us.

For children whose Autism restricts them to a narrower set of skills and options, I want more from neurodiversity; more good laws, more money, more humanity, more love.

My son has some quirks, difficulties that show up, several at a time, in other sons, and daughters; it’s good to name this collection of descriptives for the sake of making the sons and daughters known to the world. To be known is to see yourself reflected back in the eyes of others, to be sure that you exist, and that is what a child with Autism needs more than anything else. That is what every person needs more than anything else.

My son has Autism. He is a force. He is a person. My son is Bud.