These Dark Woods

WHEN MY SON Tom was born, I was surprised that there was nothing physically wrong with him. I suppose this is the reaction of many first-time older parents. Proud and relieved to have a “normal” child, I had no aspirations for my son to become an artist or to graduate from Harvard or to conquer India. All I wanted for him was good health, sanity, and a shot at being whatever he desired to be.

Over the next few years Tom rolled over, crawled, walked, and talked largely on schedule — slower in some cases, faster in others. He walked like a little sailor: erect, chest out, arms swinging. He was cheerful as a rule and quick with a smile, and when the music came on, he danced. He feared nothing, not dogs nor darkness nor perfect strangers. He had clear eyes and a steady gaze. He was curious, alert, and independent. I had hoped that his disparate genetic code — my wife is Mexican; I am of Irish-Polish-Cherokee mongrelry — would give him what geneticists call “hybrid vigor.” (My later reading would reveal that the human gene pool is too shallow for this to occur, and that the whole notion of hybrid organisms as healthier or stronger is in doubt.)

But despite his swaggering charm, it was clear early on that my son was different. He did not seek out the company of other children. He was fascinated for a long time with the moon, a fixation that would later be replaced by one with fire exits. He could never figure out how to ride a tricycle. He’d been rocking — or “bouncing,” as he came to call it — since he could sit. He’d bounce for hours if you let him. If you impeded his efforts, he might laugh, but he wouldn’t stop. At mealtimes he was the most finicky child I’d ever known, his list of acceptable foods numbering no more than seven, almost all of them falling into the smoked-pork category. If he ate a doughnut, it could be only glazed. Melted cheddar cheese only, please, and never on anything but a hamburger, no bun. He approved of only one type of potato chip: Boulder Canyon hickory-barbecue flavor.

At first I was delighted to see that other children’s taunts or molestations had no effect on Tom. My own childhood had been a study of getting pounded into the dirt. He was tough, I thought, a cool customer. He didn’t give a damn. (Isn’t that a quality we all admire?) He preferred adult music to children’s tunes and would listen to certain songs over and over: “The Rockefeller Skank (extended dance remix),” by Fatboy Slim; “Mr. E.’s Beautiful Blues,” by the Eels; “Lips like Sugar,” by Echo and the Bunnymen. He asked a great deal of questions about the wind. He understood little about his surroundings (where he lived, for example) but knew where east, west, south, and north lay at most any given time. Once, at age four, as a storm was blowing in and the sky was growing dark, Tom looked out the window and remarked, “I think that storm is coming from the northwest.”

His eccentricities were more a pleasure to me than a concern. I was not afraid that he might take a different road than most. His mother still would prefer he become a lawyer or a doctor, but I had already accepted the prospect that he might not finish school, that he might wander, that he might educate himself through experience rather than books — in other words, that he might turn out like me. I never seriously entertained the possibility that there could be something wrong with him. True, when he began to rock, the possibility of autism entered my mind, but after I’d read a bit about it, it was plain that my son did not fit the description.

Nevertheless, his language and social development were slow. He also refused to become potty trained, though he was four. Dr. Calvin, his pediatrician, was concerned about this. He raised his eyebrows when I explained how Tom “bounced.” We talked about the dreaded a-word, but Dr. Calvin dispelled the notion for the same reasons I had. My son possessed many encouraging and endearing social qualities, including a hug for the doc on each visit. Dr. Calvin proposed that Tom’s developmental delays might be remedied by placing him in day care.

Though my wife and I both worked, we were opposed to day care; we wanted to raise Tom ourselves. For a few months, when I’d been forced to take two jobs to pay the hospital bills for my son’s birth, we had put him in several home day cares, where he’d gotten sick and developed aggressive tendencies and a vocabulary we didn’t think he would need until he joined the navy or a motorcycle gang. Meanwhile I was making five and a half dollars an hour decorating cakes at Safeway, while paying two dollars an hour for day care, thus netting about three dollars an hour — without benefits. So I quit that job. My wife and I adjusted our work schedules so that one of us was always home to watch Tom, and my sister, who had recently gotten divorced and moved into a house a few blocks away, was able to help.

But, in spite of these past qualms, we now agreed to put Tom into a classroom child-care setting for eighteen hours a week, in hopes of accelerating his verbal and social growth. My wife was working as a janitor for the local college, which had an excellent day-care program with a large, competent staff and a clean facility. After a few weeks there Tom began to show improvement in his language skills, and he was potty trained. My wife and I were pleased — until the staff at the center “alerted” us to some of Tom’s unusual behaviors: his reluctance to play with others, his refusal to eat what was served at meals, and his “repetitive behaviors.” Though he sometimes (as I had as a boy) stepped in to arbitrate conflicts between other children and didn’t hesitate to speak to an authority figure, he was an aloof child, and whenever I picked him up from the day care, he would be standing off by himself on an elevated place from which he might observe the wind. And though his classmates looked out for him and often gleefully called his name (one little girl would maul him with affection), he rarely responded.

Each time a qualified stranger had a chance to observe my child for any length of time, I was sent back to the literature on autism, and each time I read about the nebulous ailment, I felt reassured that Tom didn’t have it. Though there were some indicators, the majority of the symptoms — lack of eye contact, refusal to point (protodeclaration), avoidance of touch, repetition of words (echolalia) — did not apply to Tom. He smiled readily. His imagination was strong. (We played a game where we “flooded” the house and filled it with multicolored sharks and then swam to Spider Island or had to report to the Jungle Hospital for attention after a shark bite.) Though our conversations were sometimes strange (what do you expect from a preschool-age child?), he was warm and affectionate with me and played well with my sister’s children. And he was, after all, a very small and immature human being.   

ALMOST FROM THE first day that Tom began attending kindergarten, his teacher drew my wife and me aside to ask questions: Was he getting enough sleep? Was he distracted by an upsetting event? Was there a problem at home? His “focus,” she explained, was poor. He had several “tactile obsessions.” There were some “fine-motor-coordination” issues. Had we noticed that he was hypersensitive to certain stimuli? (Well, yes, of course, but . . .) He stared off into space. At nap time, instead of sleeping, he would beat his foot rhythmically on the floor. He was behind the other students in almost every category except for ability to count. A week into school, he had already been assigned to an occupational therapist (ot), who echoed the teacher’s concerns.

I was invited to observe Tom in class. Finally, I thought, a chance at exoneration, an opportunity to straighten out this misunderstanding. If there was a “hypersensitivity” problem, it was on the part of the educators. Whatever troubles Tom had were explicable, amenable. He and I enjoyed each other’s company for hours without his attention drifting. He slept soundly in his own bed without beating his foot. There was simply a breakdown somewhere in the transition between home and the institution. If anything, the boy was healthy in this regard. It was natural not to want to get up early and spend seven hours in a place with funny-smelling carpets and vomiting children, where old ladies grabbed your ear and the days were marked off by ringing bells. He would learn eventually, like all of us who understand the contradictions of life in a free society, the necessity of compromise. In the meantime, you couldn’t possibly expect a child not quite five years old to be acclimated to school in one month.

I arrived in the late morning and watched Tom for an hour and a half from the teacher’s desk. There were seventeen students: mostly bright, handsome children; some of them already six. (We had considered keeping Tom back, because he was on the young side for kindergarten, but the school system had convinced us to enroll him on schedule.) The teacher was impressed that my son’s behavior did not change with my arrival, that he felt no need to act out, that he wasn’t self-conscious or shy. Nonetheless, to my distress, he was not with the program. His attention wandered, and he struggled with anything in hand: crayon, pencil, scissors. For a week now the teachers had been trying to come up with a device that would make the pencil more comfortable in his grip. Tom was agreeable and sweet, but not at all social at playtime. For the most part he treated his classmates as if they were ghosts. In other words, he was exactly as the teacher and the ot had described him.

A meeting was called among Tom’s teacher, the principal, the ot, the school counselor, and us. Tom played with blocks on the floor, and my wife and I listened to each staff member give his or her report. The counselor had noted Tom’s inability to graduate from playing beside other children to playing with them. There was a general lack of “affect” (emotion), a refusal to participate, a tendency toward “nonconstructive” play. (As if to support this, Tom made nothing with the blocks, and if I tried to build something for him, he would knock it down.) Tom had an attention problem. The repetitive behaviors were referred to repetitively. The import of all this was not lost on me. Without actually using the word, they were describing the symptoms of autism. (It was not their place to “diagnose,” I would be told later.) They urged that we pursue the matter with a pediatrician in Scottsbluff, Nebraska, about a hundred miles away.

After the meeting I grew depressed. My wife refused to believe there was anything wrong with her son and insisted that the educators were seeing things, fabricating, meddling. But it was impossible for me to refute their observations, because I had seen the evidence with my own eyes. And despite their misguided belief in the authority of modern psychology, this group of professionals seemed to have only my child’s welfare in mind. At the meeting their expressions had brimmed with sympathy bordering on sorrow. I figured there probably was something “cognitively” wrong with my son, and that he would need drugs and years of costly therapy and many trips to the Mayo Clinic, all of which would put me in the poorhouse. Imagining raising a damaged child — lost to the world, and to me — I became desperate and thought of taking him out of school and teaching him myself. My wife wanted to put him into a religious school: Catholic, Lutheran, Seventh-Day Adventist — it didn’t matter, as long as he was out of the hands of what she perceived to be an oppressive and overzealous secular administration.

For a time I assuaged myself with the genius-artist argument. Look at all the famous people who may have been autistic: van Gogh, Mark Twain, Jane Austen, Beethoven, Mozart. So what if Tom was different from other children? That was a good thing, right? Why should he be punished for being special? Why should he be parsed and probed and picked to pieces? What could this early labeling do but set him even farther apart from his peers and take away whatever chance he might have for a normal life?

At the same time, I feared for his future. Would he go through life without friends, without ever understanding another’s feelings? How would he get a job, find love, learn to tell a good joke? I’d be lucky if he was functional enough to spend the rest of his days living with us, obsessing about Star Trek and freaking out about the asymmetry of his shoelaces. I was despondent and certain that it was my fault. Despite my core belief that my boy would come through somehow — as I had, even with my eccentricities — I decided to surrender him to the experts, hoping that the pediatrician the school had recommended would have something useful to say.

In the meantime I researched autism. If my son had been dealt a dark card that was his to keep forever, I wanted to understand its meaning. As always, I was astounded and disconcerted by how little anyone really knows, even in this scientific age. There are hundreds of proffered theories, credible and otherwise, about the cause of autism: genetics (no autism on either side of our family), atypical brain development (autistics seem to have larger brains), immune deficiency, food allergies, ultrasound, satellite towers, malnutritious diet, vaccinations (thimerosal, the ethylmercury compound used as a preservative in vaccines, is a popular culprit), environmental toxins (including pesticides and the flame retardant in pajamas), maternal antibodies, viral infections, heavy metals, amygdala neurons, mother stress, vitamin d and/or b insufficiency, television, the thunder of migrating butterflies, and the dust from dying stars — all of which left me in the dark and offered no consolation.

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