I carried the two pieces of paper in my purse for a few days, then transferred them to the front seat of my car where I referred to them...
I carried the two pieces of paper in my purse for a few days, then transferred them to the front seat of my car where I referred to them at stoplights for another couple of days.
Finally, I deposited them on the kitchen desk, shifting them every day or so as I work through the bills and tax papers.
I’ve told people about them, even promised copies, but I have kept the pages to myself as if they are highly classified. They are not. The three words that tweak my heart apparently are a surprise to no one but me.
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Autism spectrum disorder.
Words On Paper. In black and white about my 8-year-old son.
The notes from the kindly new doctor are not a diagnosis, not yet. He wants to see my son in six months. But it is an arrow down a street another expert waved me away from six years ago.
“I can tell you he’s not autistic,” she told me and my husband after she taught my 20-month-old son his first word in front of our eyes. “Mo’,” he said. He wanted her to blow mo’ bubbles. Eureka! She was brilliant.
Falsely assured, I was able to convince myself his issues were more physical. That the low muscle tone that caused him to need ankle braces when he was younger also affected his mouth muscles. And that’s why he couldn’t speak well.
Nope. Not autistic. Not Fragile X. Not Prader-Willi. Not any of the scores of possible diagnoses ruled out by enzyme tests, gene studies, MRIs, CT scans, an EEG, and the expert chin-rubbing of maybe a dozen doctors. A muscle biopsy found an odd configuration, but nothing with a name.
Autism was something I already checked off the list.
The Autism Society of America Web site (www.autism-society.org) defines the disorder as a “complex developmental disability that affects an individual in the areas of social interaction and communication. Autism is a spectrum disorder that affects each individual differently and to varying degrees of severity.”
Some people are remote and need constant supervision; others may be a little socially awkward but have successful careers. As many as 1.5 million Americans are believed to fall on the spectrum.
Because Kevin didn’t fit what I thought autism was, I could live in denial. Two years ago, while we waited for a tire repair, my son flapped his hands excitedly, watching traffic fly by on Lake City Way. A stranger with a knowing smile asked, “What’s his diagnosis?” He doesn’t have one, I said, picking up an old magazine.
Just a year ago, my son and I were sitting at a table outside the Seattle Aquarium when a busybody at the next table leaned over and asked, “Is he autistic?” Oh, no, I said, shifting my back to her.
I thought about those exchanges when the doctor delivered his impressions. My husband and I took it in. My son giggled while the doctor playfully leaned against him. Two doctors-in-training looked on.
Then my denial, in its death throes, fought to save itself. I argued. But he loves eye contact. What about how he loves to play the “stare” game? What about how affectionate he is?
“He didn’t read the book,” the doctor said gently but matter-of-factly.
This time I didn’t cry. Sometimes I do in doctors’ offices. Sometimes I do at stoplights when I read Words On Paper.
“Contrary to popular understanding, many children and adults with autism may make eye contact, show affection, smile and laugh, and demonstrate a variety of other emotions, although in varying degrees,” the Web site reads. “Like other children, they respond to their environment in both positive and negative ways.”
I called my son’s special-ed teacher and told her about the Words On Paper. She paused and said, “Kate, we have been using approaches with Kevin that are effective with kids who have autism.”
With a wavering voice, I told his occupational therapist who helped him learn how to hit a ball off a tee for Challenge Little League.
“Kate, we meet Kevin where he is and work with him from there,” she said.
My husband is unwaveringly at peace about our blue-eyed enigma. He is who he is, he always says.
Kevin is the happiest kid I know — and clever. He sneaks his spinach nuggets to the dog under the table. And he sifted through all the computer files for the iMovie his brother made about him but my husband hid because he’s sick of the music.
He learns more, achieves more every day. In the past two weeks, the kid who didn’t cry when his finger was caught in the car door finally seems to be sensing when he has to use the bathroom.
He is as thrilled with himself as we are. “I’m so proud of you,” I say. “Big man,” he says.
I’ll work up the courage to photocopy the report and share the doctor’s suspicion and insights with those devoted to my son’s success. I’ll tell them I know it doesn’t change the gift of Kevin or of his everyday progress.
The words are, after all, just that — words on paper.
Kate Riley’s column appears regularly on editorial pages of The Times. Her e-mail address is email@example.com