Longform

The Scarlet Letter

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I have to stop right here and tell you now that I am vehemently pro-choice. But I did not choose to have a baby with Down syndrome. I avoided the amniocentesis, the guaranteed answer, after the ultrasound tech turned off the machine, looked me in the eye, and said, "I'm not supposed to say this, but your baby does not have Down syndrome."

If I'd known for certain that Sophie had Down syndrome before she was born — particularly if I'd known when I was 11 weeks pregnant — I honestly don't know what I would have done. I can tell you I'm glad to have her now.

Ever since Annabelle was born, I've been seeing — or hearing about — little kids with autism. They say one in every 166 live births results in a case of autism (and one in 106 boys). In 1995, it was one in 2,500 live births. A lot of people say autism is simply the medical condition du jour, that it's being diagnosed more, and that's the reason the figures are on the rise. Maybe, but the experts I talked to say that can't be the whole picture. They honestly don't know why the numbers are so high.

The statistics make it sound like the autism diagnosis takes place at birth, but it doesn't. Many cases of autism don't present themselves 'til the child is 2 or 3, although some cases are identified earlier.

I heard another scary statistic recently: Half the cases of autism diagnosed in this country don't come 'til kindergarten, or after. That eliminates the chance for "early intervention," a popular buzz phrase among child advocates. I was startled to learn from several of the therapists and psychologists I talked to — both about Sophie, and for this story — that there have been no definitive studies that show that early intervention really works. Anecdotally, though, the proof is there, particularly with autism, where occupational therapy addresses sensory issues and there are particular ways to address late speech.

Dan Kessler, a developmental pediatrician in Phoenix, is a big believer in early intervention, although he acknowledges the lack of studies. He is concerned because he sees mainstream pediatricians in town miss autism in their patients all the time. Or avoid it.

"Doctors don't want to use the autism label," he says, because to them, it's untreatable. He disagrees.

Sitting at the Princess Playground, talking to therapists, watching kids at day care, I came up with a story idea. I even had a headline, "The Scarlet Letter." I wanted to write about the kids with mild autism — not the head-bangers, but the kids you weren't quite sure about, kids like "Greg." From what I was hearing, their parents weren't quite sure, either. And as I talked to developmental pediatricians, school psychologists and teachers, I realized there was a pattern — that the kids with mild autism, or PDD ("pervasive developmental delays"), were sliding through the system, undetected or, at least, hidden — their parents ashamed to let on, even to the people who could help them.

I know a lot about denial, myself. (More on that later.)

At the same time, I started researching the efforts going on here in Phoenix to develop a medical test for autism. (More on that later, too. It's pretty incredible.)

But what I needed for the story was parents. Parents in denial. I've worked at New Times for almost 14 years, so I know the formula (sorry to bust the mystery of long-form feature writing, folks, but there usually is a formula): find an individual's tale and use that to tell a bigger story. But I had started backward, here. I had found a bigger story, but how was I going to find the one person whose personal experience would paint the picture?

"Excuse me, sir. Oh, sorry, I see you're on the phone and holding an infant. That's your son over there, right, the one performing Wiggles songs? Well, um, I was wondering. Is he autistic? And if so, are you in any sort of denial over it?"

Somehow, that just wasn't going to work. Nor could I approach the mom I was behind in the checkout line at Safeway the other day.

"Ma'am. Uh, MA'AM! Yes, I know it's hard to hear me over your son's shrieking, but, see, I'm a newspaper reporter, and I was hoping to ask you a few questions about your child's obviously unusual behavior."

That poor woman. Her son was so cute, with long, shaggy hair and a sweet face, and she was clearly having a stressful day — she had to put some items back, Terms of Endearment-style. I've never heard that kind of a noise come out of a child.

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Amy Silverman is a two-time winner of the Arizona Press Club’s Journalist of the Year award. Her work has appeared on the radio show This American Life and in the New York Times, the Washington Post, Lenny Letter, and Brain, Child. She’s the co-curator of the live reading series Bar Flies, and a commentator for KJZZ, the NPR affiliate in Phoenix. Silverman is the author of the book My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome (Woodbine House 2016). Follow her on Instagram (@amysilverman), Twitter (@amysilvermanaz), and at amy-silverman.com.