Fathermucker (11 page)

Asperger's: A Chronology

R
OLAND WON'T SLEEP WITH US
. H
E'S BEEN CRYING FOR A SOLID
hour,
lolling his tongue over Stacy's breast, not hungry, just upset. We bring him to the bed, a double because anything bigger won't fit in our miniscule apartment, not particularly roomy but more than adequate for man, woman, and child. We lay him down between us. We pat his head, his back. We sing him lullabies. We sing “Silent Night” and “Little Drummer Boy” and “Greensleeves,” because he was born on Christmas.

He flails around. He punches. He kicks. He cries. He won't sleep with us. We want him to share the bed, want this glorious product of our love between us. But he'll only sleep in the crib, by himself.

He's four months old.

Martin Luther, the famed theologian, encounters a twelve-year-old boy who cannot speak, shuns contact with other people, and is chronically stricken with odd compulsions to twitch his body this way and that. The great Christian leader determines that the afflicted child is a victim of demonic possession and recommends immediate suffocation.

Soon after, Johannes Mathesius, Luther's biographer, will publish the account in his
Table Talk
of Martin Luther—
the first recorded course of treatment for an autistic child. It is 1540.

Roland is in the driveway. His fat-diapered bottom is perched on a railroad tie, legs extended into the bed of mauve-toned rocks some artless landscaper has dumped on the side of the house. He leans over, picks up a rock. He flicks the edge with his thumb. He holds it up to me.

“Is rock?”

I'm sitting Indian-style on the asphalt, zoned out, enjoying the warm sun on my face and arms, the soft breeze blowing through the leafy trees all around us. We've just moved here; country living is still a novelty. I don't say anything. He repeats himself, with more urgency. “Is rock?”

“Yes,” I tell him, for at least the ninetieth time. “That's a rock.”

He flings the rock across the driveway, almost to the tire of the newly leased Honda Odyssey. There are many rocks scattered about the driveway. More rocks on the driveway than in the bed of rocks, where the black plastic liner is visible beneath the dirt. Later I will rake up the rocks and replace them. Again.

He leans back into the bed, picks up a new rock, holds it up to me. “Is rock?”

“Yes, that's a rock.”

He flings it toward the minivan.

He is sixteen months old.

In a village in the Scottish Stewartry of Kirkcudbright, Hugh Blair, scion of a well-to-do family, is sued by his younger brother John, on the grounds that he, Hugh, is unfit for marriage and land ownership.

As the testimony plays out, Blair's eccentricities come to light:

He does not answer questions, instead looking away to avoid eye contact. On those occasions when he does reply, he repeats the question rather than supplying an answer.

He is religiously religious, sporting a perfect attendance record at church. He always sits in the same pew—he cannot abide someone else taking his seat—and recites the entire Mass verbatim, from memory, but without inflection.

He is closer to animals than people.

He enjoys futile activities such as gathering stones in a pile, moving the pile, and then returning the stones to the river bed, or watching water drip from his wet wig.

Hugh Blair is stripped of his wife and his inheritance when his eccentric patterns of behavior are found by a magistrate to be evidence of insanity.

It is 1797.

A hippie friend of Stacy's who lives in a yurt outside of Arcata, California—a crunchy town similar to New Paltz, albeit with the advantage of medicinal marijuana—gifts Roland a book called
Zen ABC
. Written and illustrated by a mother-daughter team who live not far from here, the book, as the title suggests, pairs letters of the alphabet with matching Buddhist words. A is for Awareness, B is for Buddha, C is for Cadence, and so forth.

Zen ABC
is one of Roland's favorite books. He knows all the letters, and he knows the matching Buddhist words. Point to “O” and he will say, in his high-pitched, cherubic voice, “One
Mind
.” This delights my mother, who announces that he is a genius.

He is eighteen months old.

In 1797, a feral boy emerges from the woods outside of Saint-Sernin-sur-Rance, in the Aveyron
département
of southern France.

Victor, the Wild Boy of Aveyron—as he is called in the press—has lived for ten of his twelve years in the woods. Although he is not mute as such, he does not speak, and is more comfortable among animals than people.

A medical student named Jean Marc Gaspard Itard adopts Victor, working with him as a deaf-mute. During the Age of Enlightenment, Victor is hailed as a “noble savage,” and is known the world over.

He likes to spin things. Bottle caps, Tupperware containers, lids, Frisbees, quarters. Anything that can be spun. A flick of the wrist and he whirls them around like tops. He hovers over his spinning objects like Samantha Ronson at the DJ booth.

I've tried to duplicate the feat. I can't. It's much more difficult than it looks.

He can even make square objects spin. I didn't think that was possible in the realm of physics, but Roland can do it.

He sits on the ceramic tiles in the kitchen, presiding over his round plastic lids, while his newborn sister sleeps in her detachable carseat. We don't find anything unusual with his uncanny knack for spinning. We're proud that he's so good at it.

He is twenty months old.

The term
autism
, a derivation of the Greek
autos
, or
self
, first appears in a paper on the symptoms of mental illness by a Swiss psychiatrist named Eugen Bleuler. It is 1910. The term is used to describe the lack of empathy in certain of his patients—an “autistic withdrawal of the patient to his fantasies, against which any influence from outside becomes an intolerable disturbance.”

Autistic
is adopted as a synonym of
schizophrenic
.

Roland started preschool. He's the youngest child there. When they go outside to the playground, the other kids run around, play tag, climb on the playground equipment. He sits in a corner, picking up stray woodchips and rubbing them on his cheek.

“He groks that,” Stacy jokes.

We still joke. We still see nothing unusual, only the seeds of genius, just like my mother said.

He groks that.
Stranger in a strange land.

He just turned two.

A research paper called “The Schizoid Personality of Childhood” presents a study of six boys with eccentric patterns of behavior and unusual and rigid habits. It is 1926. Because this paper is written in Russian, and is published in the Soviet Union at the time of Stalin's ascendancy—and by a
woman
, no less; a neurologist's assistant named Eva Sucharewa—its findings, which comprise the first record of patients with what will be called Asperger's syndrome, are ignored.

Jess Holby brings her daughter Maddie, whom Roland has known most of his life, to our house for a playdate. Usually they get along swimmingly, but not this time. Roland is mean to her. When Maddie tries to play with one of his Thomas trains, he attacks her. He hits her. He pulls her hair. He tries to bite her, but Stacy separates them in time.

Subsequent playdates are even worse.

We stop organizing them.

“All kids go through that phase,” friends of ours, parents of older children, assure us. “All kids hit and bite. Don't worry; he'll outgrow it.”

But other kids don't hit, other kids don't bite. Not like that.

We don't see Jess or Maddie for months.

He is twenty-eight months old.

At preschool, he misbehaves. He's difficult, the teachers tell us. Prone to tantrums. Prone to hitting. He likes to knock over towers that other kids have made of blocks. He'll race across a crowded room just to knock over a big stack of blocks some other kid has spent fifteen minutes carefully constructing. He circles the room like an eagle, looking for towers to knock over. He taps other kids on the head. He makes other kids cry. He doesn't get upset when they cry. He just retreats to a corner and spins things.

All kids go through that phase. Don't worry; he'll grow out of it.
We cling to this like a nun to her rosary beads, repeat it as a novena. But we don't believe it anymore.

Despite his shortcomings, the other kids seem to like him. Or so we're told.
He wants to play with the other children, but he doesn't know how.
The teachers seem to like him.
He has a pleasant personality. He's such a nice boy
. They try and feed his brain.
We have to get puzzles from the Blue Room. He can already do all the puzzles here
.

“You should really get him evaluated,” his primary teacher, Gina, tells us. “He might have to go to a special school. He might need services.”

The thinking is that he might have a sensory integration issue, but nobody really knows for sure.

Hans Asperger of the Vienna University Hospital borrows Bleuler's
autistic
coinage to describe a specific neurological disorder that would eventually bear his name. It is 1938.
Autistic psychopathics
, he writes, demonstrate a pattern of bizarre behavior, including “a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements.”

He calls these children “little professors.”

During the summer, we visit friends and family. Short day trips.
Fun car rides
, is how we bill them, to sell Roland on the concept, although he's always enjoyed the Sunday drive. We hit the neighboring states: Connecticut, New Jersey, Pennsylvania. When we arrive at my brother-in-law's house, my mother's house, Laura's house, Roland follows the same routine. First, he walks the perimeter of the building, hand-in-hand with me or Stacy, taking careful note of window placement. Then he tours the inside of the house, matching the windows on the inside with the corresponding windows on the outside. Then he circles the house again from the outside, and has us tell him which rooms the windows belong to.

“That's the kitchen,” I'll tell him. “And that's the dining room. And that little window is the bathroom.”

He takes this all in.

He can do this for hours. He'd do this all day if we obliged.

“See? I told you—he's a genius,” my mother says.

He is two and a half.

Leo Kanner, a Ukraine-born doctor at Johns Hopkins University Hospital and the world's first child psychiatrist, publishes the landmark study “Autistic Disturbances of Affective Contact.”

It is 1943. This is the first modern use of the term
autism
.

Roland has invented a game. He pokes you in the eye with his index finger,
Three Stooges
' style, and yells, “Boook!”

Boook
rhymes with
spook
. It's a word he invented. He often invents words. For example, when he wants to express
no
emphatically, he will say
nokes
, or, sometimes,
nars
.

I mention this at the special ed meeting.

There are more people in this meeting than there were at the closing on our New York co-op. All here for a kid who won't be three till December. In attendance are the district psychologist, who doubles as chair of the Committee on Preschool Special Education; the Ulster County Department of Education representative; Gina, his teacher from his first preschool; a “parent advocate”; the therapist who evaluated him at the Saint Francis Hospital Preschool program; and of course Stacy and I.

We mention his use of the word
boook
. The county rep laughs. She says, “Kids don't make up words. They get them from someplace else.”

“Well, our kid does.”

We talk about the diagnostic report. About a delay in social play skills. In fine motor skills. In pragmatic language development. In articulation. Stacy mentions his sensory integration issues. She can barely get the words out. She's already starting to cry. I take her hand under the table, squeeze it tightly, as if this can make the issues go away, as if love were enough.

He can't be autistic
, Stacy says.
He's a big mush. He loves physical contact.

We want this to be sensory, something he'll grow out of, something we can repair. We don't want it to be something else. Something we don't even want to utter.

He can't be autistic
, Stacy says.
He has a sense of humor. He tells jokes.

“We know he needs services,” the psychologist says, evading the A-word. “We just don't know which services he needs. Does he need speech? Does he need OT? Does he need a SEIT? We don't know.”

He recommends we see a diagnostic pediatrician. He recommends further evaluation. Stacy leaves in tears.

Hans Asperger argues that his “little professors” should be spared from Dachau-style extermination, on the grounds that their unique genius might be useful to the state. It is 1944.

“We are convinced, then,” he writes in
Die “Autistischen Psychopathen” im Kindesalter
, his doctoral thesis, “that autistic people have their place in the organism of the social community. They fulfill their role well, perhaps better than anyone else could, and we are talking of people who as children had the greatest difficulties and caused untold worries to their care-givers.”

Before bed, Roland sits in my lap in the glider, and we work our way through one of his astronomy books, all of them written for elementary or middle schoolers:
Stars & Planets
, with its mythological renderings of the planet names; the
The Usborne Complete Book of Astronomy and Space
, complete with maps of the various constellations;
The Solar System
, which, despite the finite title, is about the whole of the universe.