The Scarlet Letter

Page 10 of 11

"Oh, my sister put that up."

"You don't mind it?"

"I don't mind it," he replied. He picked up a puppet from the table.

"Why leave people to guess whether I am autistic or not? It's hardly a game," pointed out the puppet, whose name, I later learned, was Ben-Gurion.

But of course, without a medical diagnosis, for many people it is a game.

Each time we begin a new Mothers Who Write workshop, Deborah and I ask the class members to introduce themselves and tell us about their families. Right away, Kathy Hoffman announced that she had a son with autism. And when she overheard me talking to Cheryl Fisher about the story, she volunteered to be interviewed before I could even ask.

Seth will be 12 in March. He was diagnosed at about 4. Kathy's husband, a lawyer in town and a "Harvard-Princeton guy," had a harder time with the diagnosis, she recalls. But Kathy had started off as a psych major.

"I felt a little hip on it," she says. The Hoffmans only knew one other family with a child with autism, at the time. Kathy is convinced that Seth's autism is genetic, and she figures she doesn't mind the label so much because Seth went through a lot at birth. He almost died when meconium (the waste produced by a baby in utero) clogged his lungs.

Unlike many autistic kids, Kathy says Seth was always cuddly.

"He'd laugh. He had a great laugh. But he had his rigid stuff. And he had that thing where you could put him in front of Sesame Street for three hours and he'd be happy."

And he freaked out in the car, a place most babies love to sleep. Didn't walk 'til 17 months, talked late and always wanted to play with light switches on play dates. When she got the diagnosis, she says, "I was relieved. Now this all makes sense, it connects the dots. . . . With a label, I could put a name to this crap.

"It was like putting on glasses. Nothing was blurry anymore."

Seth's in fifth grade now, and while it was a struggle to find him the right setting, the Hoffmans are happy with where he is — a public school classroom specifically designed for autistic kids.

The key, Kathy says, is finding the right place for him, always. She hears about parents sending their autistic kids to a regular summer camp.

"I'm like, 'Oh, God, poor kid.'"

And then there's Sunday school. The Hoffmans belong to a large synagogue in town, with a big school. At some parents' urging, the school created a special classroom for autistic kids. Kathy showed up the first day, surprised to see only three kids in the room, including Seth. She'd heard there were at least 10.

She complained to the director of the school, offered to call the parents herself. Don't you dare, the director warned. So Seth's in a classroom with two other kids — and two teachers.

"That's just insane," Kathy says of the other parents. "They're all in denial. . . . Just because [their kids are] in a typical classroom doesn't mean they're going to be typical."

In public school, she runs into similar issues. Seth is on medication (a topic for a whole other story), and, one day, his bus driver asked her what kind he took. The teachers aren't allowed to ask, the bus driver explained, so the driver wanted to get the information and pass it on to parents who might need it.

"The teachers are scared to death to say to the parents, 'Your child is autistic. Your child needs medication. Your child needs a special classroom,'" Kathy says.

Her conclusion: "There should be a child advocate that's just for the child, where the parent's not involved. Just for the child."

But every good parent is an advocate for their kid. Or thinks they are. Right? Sometimes it's just not that simple. Particularly when it comes to autism, and a movement that has emerged in books and on the Internet, involving "late-talking children" and this doctor in Tennessee named Stephen Camarata.

Camarata has a body of research — popularized by a writer named Thomas Sowell, who's published two books on the subject, including one called The Einstein Syndrome: Children Who Talk Late. Camarata's a professor of Hearing & Speech Science at Vanderbilt University School of Medicine and director of the communication and learning research program at the Vanderbilt Kennedy Center.

Boiled way down, Camarata and Sowell advocate that some very smart kids talk late, and that while late-talking is one of the symptoms of autism, if it's not accompanied by other autistic behaviors, a late talker is not necessarily an autistic 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.