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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.
I can buy that, I guess. As long as I remember that my mom chuckles over the fact that I didn't talk until I was 3.
The other day I called my mother.
"So, you know how I didn't talk 'til I was 3? Do you think I would have been diagnosed today as autistic?"
She cracked up. "Oh, no, honey, you weren't autistic. You were just slow!"
Soon, there just might be a genetic test that will clear up such mysteries. That's a good thing because with early intervention so important, skipping therapy for autism in favor of Camarata's theory can cost a kid months or years of precious time.
Google Camarata or Sowell, and you come up with a list of warnings from parents who initially preferred calling their kid "late talker" to "autistic." I e-mailed Camarata and asked him if he worries that parents are drawn to his theories as a way of avoiding a diagnosis of autism.
He responded quickly:
"I advise parents to get an accurate diagnosis, which certainly can include autism," Camarata wrote. "On the other hand, it is clear that not all late talkers are autistic, so it is crucial that parents seek a thorough differential diagnosis. . . .