Chapter One: Strange New World
I am watching Jonah play. He is a boy of three, with hair like a ripe
wheat field, blue lakes reflecting in his eyes. He sits peaceably on
the smooth pale carpet of our home, putting small balls and toy parts
into a little bus. The alabaster forehead above his pink cheeks is furrowed
with concentration.
“Put it in there, take it out of there,” he says, as if
conversing with an invisible twin.
Again I note his perfect enunciation, often remarked upon by grocery-store
strangers. Jonah smiles, the crescent of a dimple in one cheek, and lifts
the bus. He spins its wheels, and my heart plummets, afraid to see the
evidence of a mechanical fascination. Just as I start to label his fingers
on the spinning wheels an autistic behavior, he pushes the bus into a
wall. A measure of joy leaps in me.
“You can get it out,” he encourages himself. His strong
little hand opens the bus window and grasps the cluster of balls like
a handful of loose change. The bus trundles off, Jonah pushing it like
a devoted mechanic. His narrative floats down the hall, the short declarative
sentences of a much younger child, and I am grateful.
Autism. Pervasive Developmental Disorder. What does it matter what they
call it? On a darkened afternoon three months ago, these words
enveloped my mind like a killing cloud, but now they mean nothing. His
outcome is unpredictable. He might end up alone in his room, zoning out
before a television. Or he could become an engineer in a cubicle, with
sketchy social skills and an exasperated wife.
I can’t see him anymore. “Jonah!” I call. I hear the
odd rise and fall of his voice. My son doesn’t care about the nuance
of his sounds, he simply enjoys them, with an exuberant release. Since
he’s only just turned three, no one has done more than lift an
eyebrow at them, but he grows taller every day.
“Jonah!” I call again. I rise from my swath of carpet
by the fireplace and track him down the hall.
Autism is a strange and elusive word, soft, almost hollow in sound.
It only becomes ugly when you find out what it means. Autism is a neurobiological
disorder that affects social connection and intellectual comprehension,
becoming apparent by age three, although many people are diagnosed years
later. People with autism have unusual and repetitive behaviors, and
absent or peculiar speech. They’re often plagued by sensory overload,
during which competing streams of thoughts, sounds, lights and noises
flash simultaneously through the brain. It can be like living in a casino,
multiplied by fifty. It has no known cause, and no cure. Autism is a
spectrum disorder, ranging from mild to profound disability, and we have
no idea where Jonah will end up. The Childhood Autism Rating System (CARS)
questionnaire I filled out scored him as moderate, with a scattering
of traits both better and worse.
It’s unreal that this is now our world.
Jonah was an early talker. “Dog,” he said expertly at nine
months, after the requisite “mama” and “dada,” then “neck” for
necklace as he played with my dangling beads on an Alaskan cruise ship
that same month. He could recite the alphabet by eighteen months, count
to twenty by way of skipping fifteen. He was the bright child my husband
Jack and I silently assumed we would have.
From the baby book in my bad handwriting:
You had a vaccine at two months, and when we took you back to the
doctor for your six-month shots, you reacted when you saw the needle. “Look,
he remembers the needle,” said the doctor. “How smart are
you?” she told you.
After Jonah turned eighteen months, Jack, a soft-spoken lawyer, and
I saw nothing unusual. We were too busy chasing him around the house.
How quickly our once-calm child could fill a bathtub and drown three
hand-signed music posters in the brimming waters—I’d just
taken a moment to brush my hair. For nearly an hour, he’d placidly
empty and refill cups at his sink, then suddenly squeeze toothpaste onto
the marble counter, dump out three bottles of shampoo, put sunscreen
in his hair and festoon the toilet with rolls of paper. He refused to
watch videos, scampering up to the massive television of Jack’s
bachelor days and shutting off the flickering images. Impulsively, he’d
dash off to empty the linen closet, ransack the cleaning supplies, or
pillage my make-up drawer.
At night in the rocker, nestled in my arms, he stared at my face with
adoration as I sang to the tune of an old Mexican lullaby: “I love
my Jonah, I love my boy. I love my Jonah, he’s my little joy.” We
thought he was bright, intense. His personality was not unlike our own.
What did we know, first-time parents with no family around to balance
our observations? Jack’s parents were deceased, his Midwest-raised
brothers scattered around the country. I’d left my family in the
mountains of Virginia for a career in Washington, D.C., seven days after
college graduation. So at night, while Jonah played with water or paged
through his books, I would sit in my white nightgown in his bedroom,
poring over the simple-Simon parenting books offered by bookstores. I
had checked that, yes, he could use a pincer grip to grasp a raisin between
his two fingers. I noted his timely sit-up, his grasp of a spoon, his
taste for Plums ‘n Chicken baby food. I knew he could run into
our outstretched arms, use a two-word phrase, dance to music. And it
was clear that he loved us; from his big smile when we walked into a
room, to his delight in Peek-A-Boo and other baby bonding games, his
affection was evident in a hundred ways.
None of the books stacked by the changing table listed pointing as a
milestone.
Pointing is a joint attention behavior, designed to share the object
of one’s interest with another person. Babies do it before they
can even speak.
True: he never pointed. Also true: he cuddled, laughed, talked and played.
So how could the lack of a tiny pointing finger change his life?
He defied the odds from the beginning. While pregnant, I’d learned
about the wobbly heads and developing necks of babies, how they can’t
be expected to lift their heads for some time. But the moment he was
born, to my surprise, he quite naturally lifted his head from my shoulder
and looked straight into my eyes. He smiled the smile of my father when
he was six days old. At four months old, his first big laugh filled the
terminal of Atlanta’s airport as neon lights caught his eye. At
five months, his laugh pealed like fairy-bells at the sight of carrots
dropping into a bag.
When Jonah was nine months old, I asked the doctor if the allergies
and diabetes intertwined in our family trees indicated he should be on
soy or non-milk formulas. She said no, so I kept the milk-based formula
and added cheese and ice cream to his diet, in love with watching him
eat foods that would strengthen his bones and fill his mouth with pleasure.
At twelve months old, the pediatrician plunged a needle into his thigh.
This time it was the MMR vaccine, for measles, mumps and rubella. At
fifteen months, he went back for his fourth DTP/HIB vaccine, as recommended
by the vaccine schedule, to protect him from diphtheria, tetanus, pertussis,
and influenza. The doctor was charmed by his activity and the grin he
flashed her as he looked into her eyes. The baby book remembers:
“He’s obviously bright,” she said. “You
might want to start toilet training right away.” She said to
get you a potty-training video for boys.
Is a vaccination the stigmata of an autistic child?
Pointing, a hallmark of developing social interaction, often appears
around one year of age. Did the MMR vaccine kill his chance to point,
by injecting too many viruses at once into his immature immune system? In
the years of Jonah’s vaccinations, his other vaccines contained
thimerosal, a preservative composed of nearly fifty percent mercury. Was
this enough to rob him of a predictable future?
As I walk, I hear him singing somewhere down the hall. “Happy
birthday to you,” Jonah sings. “Happy birthday to you. Happy”—he
pauses and I hear the plastic bus window click close—“birthday,
dear Jonah, happy birthday to you.”
Or was it just some elusive swirl of genes? Or the strange rash
during his first course of antibiotics for a post-vaccine ear infection,
the water I drank from my childhood farmhouse well, my ride up the gondola
on Aspen Mountain when I was pregnant? Or all of the above—vaccines
and other factors colliding at a crucial intersection with the exquisite
ballet timing of a five-car accident?
For the first time in my life, books let me down. None of the books
aimed at the mass childrearing market mentioned the dozen tiny signposts
that pointed to a large detour. None of them said, if your child can
keep himself occupied for forty minutes at a time and doesn’t bring
toys over to show you, something might be wrong. They did not say, if
your child angrily refuses to look at you when you’ve returned
from a weekend away, there might be a problem. Or if he cries at the
sound of a blow drier or bursts into tears whenever “Twinkle, Twinkle
Little Star” comes on the CD player, something might be badly wrong.
None of them say, if your child’s family history is filled with
intelligent people, some with immune-related problems like allergies,
asthma, diabetes and arthritis, and you load the child with fifteen vaccines
by the time he is eighteen months old, you could be making a grave mistake.
Or if your child doesn’t point, all could be lost.
Jonah’s disappeared from the hall. Alone in the corridor, I peer
into his room. He’s lying on his back on the blue-trimmed
maple bed, his square-toed toddler feet in the air. He’s
exploring his toes with total seriousness, like an unobserved intern
with an imaginary patient.
“What are you doing?” I ask.
He doesn’t turn. “He touching toes,” he says earnestly.
I stroke his warm forehead, touch the small gilt widow’s peak
blending into his blond hair. I feel foolish for interrupting him when
he’s so busy.
Three months ago we got a diagnosis. Two days later, we started pulling
him back to our world. We purged his diet of wheat and dairy products,
in case they were gumming up his unusual brain. We made him ask for everything,
every cup of juice, cracker or object. Within two weeks, he started to
change.
The new books I’m reading say forty percent of kids with autism
never speak. Most will never live alone, work or have adult relationships.
And a very few, found more often in first-person accounts than scientific
books, are able to recover.
In the quiet bedroom, I watch Jonah’s smooth contemplative face,
the way he’s figuring out his feet. I desperately want him to be
one of the chosen. Every parent out there wants the same thing.
People in hell want ice water, whispers a bad voice.
I leave Jonah content on his bed, a rare thing, and return to the living
room. The books say the rate of recovery is between five and one percent,
odds better than a casino’s one-armed bandits. Like gamblers
with one last chance, we’re staking our lives on our son.
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