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.
Just as there is no known cause of autism, there are no known cures and mostly experimental treatments: learning approaches, biomedical approaches (i.e., drugs), dietary approaches, “complementary” approaches, and “nontraditional” approaches (like maybe putting your kid in an RV and hitting the road?). I learned that what is currently called “autistic spectrum disorder,” or ASD, includes a bewildering range of expanding, dividing, subdividing, and poorly understood conditions. The whole ASD morass is layered in thick jargon, and because experts like to say that each case is different, there is no consensus about how to treat an autistic child. A father might be lost in this labyrinth forever with only one thing he could count on: that doctors would cash his checks. It was agreed, though, that early intervention was essential to maximize my son’s abilities — just as soon as my army of experts and I figured out how to intervene.
My wife had medical insurance because she was working for the state, but our son wasn’t covered by it, so we enrolled him in a Nebraska program called Kids Connection, which included both Children’s Health Insurance Program coverage and Medicaid funding. I’d never accepted any sort of government assistance, not even unemployment, but having medical insurance for my son seemed a godsend considering that our upcoming trip to the pediatrician in Scottsbluff might be the first of many.
Tom loved to travel and was eager to meet Dr. Mahavey. He liked doctors and remembered every one who had ever examined him. He could also recall the names of my wife’s entire family in Mexico after having met them only once, two years earlier. But an excellent memory is another red flag of autism, isn’t it?
Dr. Mahavey wasn’t the pediatrician the school staff had recommended — that doctor was booked for the next several years — but Mahavey was in the same practice, and I liked him. He listened, looked me in the eye, and answered all my questions for close to an hour. Tom was weighed and probed and interviewed. I had prepared a series of explanations for Tom’s behaviors, and as I tested them on the doctor, I saw that they carried little weight. Even so, they seemed to me like more than just rationalizations designed to ameliorate my feelings of helplessness: The boy was barely five. He had just begun school, seven hours a day, five days a week. He was from a bilingual household. His father was a late-blooming stumbler who had only recently met with modest success. His mother was not social and often had to labor to feel empathy. She and I were both hypersensitive: she to pain, I to loud sounds and nonsense. Tom was an only child, accustomed to interacting with adults. If he rejected his peers, it was probably because they bored him and because they didn’t know who Fatboy Slim was.
I told Mahavey all of this, and he nodded the way the detective nods at the man holding a bloody knife who insists he’s not the murderer: another irrational, emotional parent who can’t face reality.
To my surprise, however, Dr. Mahavey agreed that my son was probably not autistic. (He commented on the fact that Tom pointed to objects and made good eye contact, two key behaviors lacking in most children with ASD.) But, Mahavey said, he did not have the authority or the expertise to make a determination. (So why was I here? If I’d been paying for this myself, I would’ve been annoyed.) Still, he thought the “red flags” noted by the school staff were enough to warrant a visit to a psychologist who specialized in ASD. He made a referral and emphasized the importance of “early intervention.” I pointed out that if there was no cure, it seemed at best a wistful proposition. Dr. Mahavey offered a sympathetic smile.
Whenever my son and I went to Scottsbluff, it was our tradition to go to McDonald’s for a small order of fries and a small chocolate shake (no variations on this). And on the way home we would stop in Crawford, a crumbling old railroad-and-uranium town of a thousand. My boy likes the city park there, a regal expanse with rusting swing sets and obsolete tractors and giant trees and a dry fountain and an icy spring that snakes its way under two bridges.
On this cold day Tom ran to a jungle gym — better than any in our town — and began to climb. I had to pee, but the restrooms were locked, so I told my son I’d be back in a minute and headed for the trees. About halfway there I stopped to look back and saw him staring after me as if I might never return. One day, of course, I will not, I thought, but before I do, I’m going to make sure that you’re squared away.
For many years I had feared that I would die young of one imagined ailment or another, but now this self-absorption had to end. A life was depending on me. If I died, Tom would be sucked into a medical black hole and saddled with so many acronyms and prescriptions that he’d never have a chance to find out who he was or what he could do; he would probably end up shooting a bunch of people at the university so that he could get on CNN, after which all the psychologists would scratch their heads and note that he hadn’t been taking his medications.
With a heavy heart I made an appointment with Dr. Weld, the PhD psychologist in Casper, Wyoming. The process was going to be long and complicated: a preliminary session without the boy; many forms, surveys, and questionnaires to fill out; at least two visits at $175 an hour. But the cost would be defrayed by Kids Connection. If not for that and my promise to the school to follow through and get a diagnosis, I would’ve taken my chances with Mother Nature and the Ben Franklin School of Self-Reliance.
During the month-long wait to see the shrink, many friends comforted me with stories of their own children’s early developmental problems and mystery symptoms that had amounted to nothing. One of the children had had severe “processing” problems. Another had been so antisocial that he would spend hours in the basement, and if the rest of the family came down there, the child would move back upstairs. None of these children had fulfilled the dire predictions of teachers and doctors. I was also often comforted with the story of Einstein (probably autistic), who spoke slowly and seldom as a young boy. I preferred the story of Truman Capote (probably not autistic), who as a child was deemed mentally retarded and even as an adult could not say his ABCs.
I also learned that under educational reform — especially the current administration’s No Child Left Behind program — the blame for a student’s poor performance was being placed on the teacher. If a child was diagnosed with a disorder, however, the teacher was relieved of all responsibility. And a diagnosis often came with a medication (whatever happened to “Just say no to drugs”?), which made the child easier to manage in the classroom.
I have trouble keeping a straight face in front of any psychologist. The entire field, which lays claim to an area called “the mind,” is not so much scientific as theoretical. The psychologist enjoys the seat once occupied by the priest, who replaced the witch doctor, and they are all full of beans, in my opinion. But we need a mumbo-jumbo artist to recite incantations and exorcise demons and cast spells as a tonic for those of us who would prefer not to go it alone. To compound my problems with psychologists, our specialist on ASD, Dr. Weld (my son still speaks of him fondly), had not examined any of the forms, surveys, or questionnaires I’d filled out. He had not talked with the school staff nor reviewed any of their written observations. He hadn’t even spoken with Dr. Mahavey, the pediatrician who’d referred us. Weld had no documentation of my child’s behavior whatsoever. All he knew about Tom was what he learned that day from me. It didn’t help either that the psychologist was ten minutes late.
By now I’d explained my son’s situation so many times I was in recitation mode. Dr. Weld, who had a cynical, half-lidded gaze, met my spiel with the now-familiar bland and patient sympathy of one who’s listening to a meritless position. At least there was no pretense here about not using the word autism. As I explained certain aspects of Tom’s behavior, the psychologist would nod or raise his brows. I was starting to see how almost any unusual behavior might fit under the broad umbrella of ASD. I’d say, for example, “He threw a lot of things when he was three years old,” and Weld would nod and make a note. And I’d say, “I’m not really a witch, of course, but I do like toads and pointy shoes,” and he would nod and make a note. He could’ve been determining on the spot that I was autistic myself. (The father is a bit slow, has trouble focusing on things that don’t interest him, is taking longer than the usual time to develop. Every morning he gets up, makes coffee, sits in a chair, and taps for hours on a keyboard, a glazed look in his eyes. He is hypersensitive to stimuli and inclined to withdraw, a constructor of secret worlds. And he wears these pointy shoes.)
Scribbling on an envelope, Dr. Weld gave me an overview of the vast, largely unmapped, heavily wooded, and ever-changing continent of ASD. After I insisted (once again) on my son’s warmth, imagination, good eye contact, relationship with his cousins, ability to point, great coordination, and so on, Weld allowed that my son might be borderline. Asperger’s syndrome, a mild, functional form of autism, seemed plausible. He also stated the likelihood of various attention-deficit disorders, which were often associated with autism but which, unlike autism, were manageable with drugs. If you diagnose my son with an attention disorder, I thought, that will be the last you ever see of him and me. I knew from watching Tom that, whatever his bugs or quirks, he did not need to be medicated for an inability to pay attention.
Dr. Weld gave me a warm handshake and four copies of a personality inventory designed to determine the presence of Asperger’s syndrome. These questionnaires were to be filled out by Tom’s mother, his teacher, another school staff member acquainted with Tom’s behavior, and me. I promised to return with my son in three weeks. During the cold, three-hour drive home on an empty highway, I commended myself for having been civil. I felt bad, but I was getting used to it, and I was glad to have some uninterrupted time in the car to think.
No matter how eloquently or logically I stated my case, I seemed unable to convince anyone that my child was not autistic. The only professional in my corner was Dr. Calvin, who had supervised Tom’s prenatal care, delivered him into the world, and watched him grow. He insisted that my son’s problems amounted to little more than being too young for kindergarten. But he had no authority in the matter, and, as the saying goes, “If ten men tell you you’re a horse, you’d better turn around and look for a tail.” I officially began to prepare for the prospect of raising an autistic child, consoled by the fact that he might be only mildly afflicted, maybe even highly functioning. But I also feared that he might regress. The annals were full of such cases: bright-eyed boy one minute; rocking and inconsolable the next.
I vowed to keep a positive attitude, having noted that when my spirits went down, Tom’s went with them, and when I treated him as needy and weak, he became needy and weak. The literature on autism is rich in ambiguity but also rich in strategies. One author stresses that accepting the child’s circumstances should be no different from accepting that he or she is left-handed. In many cases the autistic child is exceptional, especially in the areas of math and science. Judging by the exponential growth of this malady since the 1980s — either in actual numbers or due to better means of detection and increased reporting — I imagine we are seeing the rapid evolution of a new human species: beings qualified for difficult intellectual tasks, enamored of timelines and computers, and undistracted by emotion, humor, or social customs; a new nation of Mr. Spocks.
Three weeks later I returned to Casper, my brave and curious child in tow. As he had been the first time, Dr. Weld was late. My son played with a toy car in the lobby while we waited. (Note: autistics are fascinated with parts of things, not the whole.) Three aggressive boys, apparently brothers, entered the room, bustled around, and then took away Tom’s car. I was pleased to see Tom distressed. I whispered in his ear: “Never start a fight with the mentally ill.” The boys’ embattled father managed with some difficulty to get them to take off their jackets.
When Dr. Weld appeared, I introduced Tom, who shook hands with him. Weld had gone over the inventories, had talked with Mahavey and the school staff, and had tabulated the scores. Tom had not scored high enough to qualify for Asperger’s syndrome. Weld speculated that if my son was autistic, it would turn out to be an extremely mild form, a speck of pepperoni on a veggie pizza. Somewhat relieved, I left my son with the psychologist for three hours of tests, interrupted by breaks for chocolate-flavored graham crackers, which I knew Tom would not eat.
I waited in the lobby, where the less fortunate shuffled in and out of the offices of the four or five other psychologists who shared the building. One patient chewed gum madly. Another tromped about the waiting room, gasping, rearranging pamphlets, and trying to converse with the receptionist behind the curved wall of shatterproof glass. A third, whose purple sweat pants matched her lipstick, dozed in her chair, hair braided in the pattern of a crop circle. The autistic/hyperactive/ADD children tore the waiting room’s magazines and boxes of Legos to pieces.
When, after three hours, I was summoned down the hall to see how everything had gone, I found Dr. Weld and Tom playing with a ball. The psychologist was down on his knees and in a good mood, his cynical eyelids lifted. He called my son “delightful” and seemed to mean it. I could not help but agree. He also said that there was no sign of the mysterious plague, but he would like to see my boy again. Tom had scored low on what were once called “intelligence” tests but are now called “cognitive-performance” tests. This meant my son wasn’t too bright. Or maybe he didn’t take tests well. Or maybe his goodies hadn’t kicked in yet. Or maybe he knew exactly what was going on but didn’t feel like playing the game.
Dr. Weld made us an appointment on his computer and gave me what was left of the bag of chocolate graham crackers, which he said my son had enjoyed. I put them in my jacket pocket and shook the psychologist’s hand and thanked him once again. Afterward Tom and I went to McDonald’s for fries and a shake; then we drove to the general hospital, where we rode the “elvegators” for a while. On the way home we stopped at the park in Crawford. As I watched Tom play on the jungle gym, I felt certain that my wife would agree that no more long-distance trips to visit the psychologist were necessary. Whatever Tom’s ailments or limitations might be, we had our diagnosis — or nondiagnosis. It wouldn’t be easy (Tom would have to repeat kindergarten, and though his “fine-motor-coordination” issues are subsiding, he is still curiously asocial), but I knew that somehow, without the help of experts, we would get him through these dark woods called life.
“Look at me, Daddy!” Tom shouted as he raced down the slide.