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The Scarlet Letter

Sophie Fisher is autistic. Her mother isn't so sure she wants you to know

By Amy Silverman 

The little boy was perched atop a plastic mountain, the highest point at the Princess Playground, the name my girls and I have for the indoor play area at Scottsdale Fashion Square.

The small space was crowded that afternoon, but you couldn't miss the boy. Even though my daughters Annabelle and Sophie are 5 and 3, I'm bad at guessing the ages of small kids. I'm thinking this boy was around 4. You couldn't miss him because he was dressed exactly — regulation-issue long-sleeved yellow tee shirt, black pants and a black leather belt — like Greg, the original lead singer of The Wiggles. His hair was even combed like Greg's.

If you're not in preschool or the parent of a preschooler, you might not know that The Wiggles are the richest men in all of Australia, a kids' rock band that sold out to Disney and tours to crowds many adult rock bands would envy. They filled Gammage Auditorium, the day we saw them. One of their big hits is a cover of the song "Head, Shoulders, Knees and Toes."

It wasn't so odd that the boy was dressed like Greg. I have a friend whose son spent much of his fourth year dressed as a firefighter, which must have been uncomfortable during the summer in Tucson. What drew my attention was the fact that this little boy was not just dressed like Greg, he was Greg. He stood on that plastic mountain, while the other kids crawled around him, taking headers off the slide right in front of him, and he sang an entire set of Wiggles songs — over and over, with the kind of precision you don't see from The Wiggles themselves.

He didn't ask the others to join along, or seek approval from the "audience," which really just consisted of me and his father, who was balancing a newborn and a cell phone, paying no attention to the umpteenth rendition of "Hot Potato, Hot Potato." All the other parents were assiduously looking the other way.

Ten, 20, even five years ago, the crowd might have enjoyed little Greg's performance, giving Dad attaboys. "Isn't that cute?" Now, everyone looked uncomfortable. A weird little kid just doesn't mean the same thing, these days.

I wondered if they were wondering the same thing I was: "Where's that kid on the spectrum?"

"The spectrum" is the autism spectrum. It refers to a range of behaviors, from Asperger's syndrome, a mild version of autism marked by odd tics, a hard time socializing, and, usually, very high intelligence, to the kind of autism you saw in Rain Man, where the guy really can't function well at all in the real world. The sit-in-the-corner, rock-back-and-forth-with-your-hands-over-your-ears kind of autism.

Autism is not a disease, it's a syndrome. But unlike Down syndrome, which my daughter Sophie has, autism is not diagnosed with a blood test. Instead, it's identified with a series of tests that can range from a list of questions given to parents to an intensive examination of the child's behaviors. Either way, at the moment it's an inexact science.

Soon, it won't be. Turns out, there is likely a genetic component to most versions of autism.

In about six months, researchers here in Arizona will begin genetic testing at birth, for certain forms of autism. They figure they've now identified maybe 20 percent of the genes that, when damaged, lead to autism. But they expect to add genes to that until they can test with 90 to 95 percent accuracy. There will still likely be a small percentage of cases of autism that are strictly caused by environmental factors (a current concern is over an additive used until recently in childhood vaccines). That will shut down a large, loud group of parents convinced there is no genetic component, but instead only outside hazards, affecting their kids.

And it will raise the complicated questions that genetic testing raises.

The testing might also lead to incredible treatments, with medication and advanced therapy.

Or, ultimately, it might just lead to more abortions.

After all, if parents know their kids will be facing a life with autism, they might do just what many of them do today when they learn about conditions like Down syndrome.

Any medical advance comes with consequences.

Today autism is five times more common than Down syndrome. That is because there are more cases of autism diagnosed. It is also because there are fewer and fewer children born with Down syndrome. Not because there is medicine to "cure" DS, even though the chromosomal abnormality that causes it was identified in 1959. It's because prenatal testing is so advanced, and more parents are learning of the condition earlier in pregnancy and choosing abortion.

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.

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