Birth has a special vocabulary. My early pregnancy featured graceful words such as conception and quickening. Three years after having my son, though, I learned a new reproductive word--stoppage. It means deciding not to have more children after your living child is diagnosed with autism.
My attorney husband and I were eager for a child, maybe two, the classic boy and girl set. After winning a stressful trial, he came home to pack for our trip to the mountains. I remember the day, a Friday in January, lying on the bed near a half-filled suitcase. About the time we began to climb the misty mountain road, egg embraced sperm and our son was conceived.
A precocious blond baby with big blue eyes, he spoke at 9 months (“dog” and “necklace”). Tall at 18 months, he happily recited the alphabet. Then he turned hyperactive. We were too busy chasing him to notice how his speech became echoes, how he played with water and lights and cried with terror at the vacuum cleaner’s roar.
When he was nearly 3, after three miserable weeks, his first preschool’s director said, “Sorry, he’s autistic,” and threw us out.
We didn’t believe it. The speech therapists I called said it was impossible: He’s sociable and talks too much. After the teacher at his new school mentioned that he resembled her autistic nephew, in a panic we called our niece, who teaches autistic children. She said she’d known a month earlier. “So it’s true,” I said. “I’m the mother of an autistic child.”
These words horrify me now with their self-absorption. But they were my attempt to realize the truth, to place myself in an awful new universe.
Autism, a once-rare neurological disorder, is alarmingly common these days. There are 10 boys and two girls in our neighborhood who are autistic. L.A.-based Cure Autism Now quotes federal estimates that one of every 250 U.S. children are autistic. In California, the rate (excluding milder forms such as Asperger’s syndrome) has jumped to 10 new diagnoses per day. No one knows why; one theory is that genetically susceptible children are pushed into the disorder by vaccinations, diet or heavy antibiotics. Others simply emerge autistic into the world.
Autism is a black hole, capable of crushing personality, reason and affection. It has no known cause or cure. Forty percent of afflicted children never speak, while about 25% display average to advanced intelligence and language, but possess poor social skills and are considered odd.
Slowly, the signs became evident to us. Frustration or noise made my son bang his head or bite. He and I became a colorful pair, his head with its blue-yellow bruises, my arms purple with bite marks. His fear of vacuum cleaners changed to obsession. After the diagnosis, our bright little boy started walking in circles, flapping his hands like a broken-winged dove. Watching his small shoes trace a tightening O on the kitchen floor hurt more than his deepest bite.
Our neighbors with autistic children told us what to do. We removed wheat and dairy products from his diet and sought school district funding for 40 hours per week of behavioral modification therapy. Soon, three therapists came to our home each day, in shifts. They sat our son at a small table and helped him perform tasks while offering play breaks and rewards. There were far-flung doctors, blood tests, medications and three hours a week of speech therapy. In between were depressing books and phone calls to veteran families.
But within 18 months he became the loving, curious child who’d vanished for a time. At 5, he’s a happy, singing boy who can lie to cover his mischief (a cognitive milestone). Speech tests reveal high scores and superior reasoning. His only real differences are stubbornness, clumsy social skills, a variable attention span and a fondness for mechanical equipment. To outsiders who know his label, we are unlucky, but in our parallel universe we are among the fortunate.
At the park, strangers ask, “Is he your only one?” Yes, I say, he’s like five kids. Or I tell them I have no local family help. But truthfully, I can’t handle another child. A kid with autism bears innumerable price tags. Therapies, diets and battles with schools add to the high emotional costs. But it’s worth it. Compassion is the painful gift my son has given me.
For some parents, this becomes a soul-opening experience they could not have gained otherwise. For others, depression, divorce, bankruptcy, even suicide ensue. Most of us eventually adjust and soldier on.
Even so, few have additional children after a diagnosis, because we fear a possible genetic risk. My friend with three autistic boys would have stopped had she known, although she’s happy she didn’t (two have recovered). Stoppage is the rule, not the exception.
I look wistfully at small girls, with their pink dresses and steady talk, but I love my son. He climbs into our bed, shouting “There you are, Mom!” with wild delight. He brushes my hair and paints my toenails. He hugs me so hard it chokes me.
“Am I going to love you for the rest of my life?” he asks me, grinning, and throws himself on my lap.
This devotion makes me cling to him, revel in our hyperkinetic attachment. It makes me think I could have another baby, a girl with our blue eyes. But then I feel the fear. Not only of an autistic child, but a regular child whose abilities might dim my vision of my son. So I hold onto the words of the experts, who say he may lose his diagnosis, work, marry, even have children. Grandchildren would be a great solution to stoppage.
I know a woman whose son has completely recovered. She is pregnant. We other mothers shake our heads at her hubris. She didn’t even sperm-spin for a girl, we whisper with awe (autistic boys outnumber girls 4 to 1). I once rode to an autism-mom party with her. The other women in the SUV pumped her about her child, sighing at her success.
“I was just determined he wasn’t going to stay autistic,” she said.
I was amazed that she would say such a thing to equally driven mothers whose sons can barely function after the same treatments. Then again, only a supremely self-assured woman would tempt the fates again.
When my son turned 4, we went to the Salvation Army church of his baby-sitter, who put him onstage to throw a dollar for each year of his life into a basket.
“How old are you?” asked the pastor before a packed Santa Ana congregation. Answer, I pleaded soundlessly from the back of the room.
“I’m 4 years old,” he said.
“And we thank God for your birthday!” she chuckled into the microphone, as everyone watched him, the lone blond boy amid the knot of dark-eyed Latino children. Later, as the brass band played a birthday song, he danced. The pastor spoke in Spanish, and the room roared with laughter.
“He may not speak Spanish,” my baby-sitter translated, “but he sure can dance.”
I do not believe in God, but I thank him for my son anyway. I am grateful for everything that I once took for granted, because the world is full of children who cannot live the lives their parents had planned. After everything we have been through, he is more than I ever hoped for. In the face of what lies ahead, he is more than enough.