Longform

The Scarlet Letter

Page 11 of 11

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. . . .

"Consider this parallel medical example," he continued. "I was diagnosed with type 2 diabetes at age 46. In fact, it turned out that I have type 1 (insulin dependent) diabetes. If the original diagnosis had not been followed up on, I would have died last year or the year before because I need insulin to live whereas most type 2s do not receive insulin. An accurate diagnosis and appropriate treatment were crucial to me. . . .

"I have never and will never suggest that diagnosis or treatment should be delayed, but will insist on accurate diagnosis and appropriate treatment (if needed). If a child is late talking and this requires treatment, any intervention should include, as a primary focus, helping the child learn to talk. Some parents report that they are pressured to accept a diagnosis they do not agree with 'to get services.' Families should never be forced to accept an inaccurate diagnosis any more than I should have been forced to accept a diagnosis of type 2 diabetes when, in fact, I have type 1. Thank goodness my physician kept an open mind and followed up on the original diagnosis!"


There's one more student of mine I spoke to for this story. She didn't want to be identified. When her son was finally diagnosed as autistic (borderline PDD, but the doctor wrote "autism" so she could get services), it was after a lot of back and forth over late talking. Just before she visited the doctor, she spoke to a dear friend whose own child has special needs.

"She said to me, 'Look, what if they tell you he's got autism? What are you going to do?' I said, 'I don't know. I'm gonna freak out.'

"She said, 'No, you're not. You're going to cry and you're going to grieve because you thought you were going to have a typical child and you don't. But then you are going to love him as much as you possibly can and get him everything that he needs.'

"It was probably the wisest thing anybody's ever said to me."

So what's it like, having an autistic kid?

"At times, it's the most rewarding thing in the world, when I see what a difference I can make in his life," she says. "He's teachable. Not that he always does what he's supposed to do and whatever, but when he has those moments when he's so proud of himself even though you've stood at the refrigerator with him with a cup of water for half an hour, waiting for him to say 'wa' and ask for it, and when you've done it over and over and then it finally dawns on him, you kind of go, 'Oh my God.' It's just an awesome moment.

"And then at times you still cry."

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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.