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More Than Enough

Stoppage Is a Special Word That the Parents of Autistic Kids Understand All Too Well

April 27, 2003|Christina Adams | Christina Adams is writing a book about her son, who recently passed a kindergarten-readiness test.

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.

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