When journalists John Donvan and Caren Zucker set out to write a definitive history of autism, they struggled to wrap their heads (and prose) around the facts.
That’s because definitive information is hard to pin down. Even determining how many people are affected by autism is difficult.
“Even the CDC [Centers for Disease Control and Prevention] doesn’t have a figure that’s completely reliable,” says Donvan, adding that the CDC leans toward a disturbingly high 1 in 68 figure when discussing patients. “The numbers are all very squishy. That’s why we don’t know if there’s an epidemic or not. There’s no genetic test, no cheek swab to diagnose it. It’s like almost all psychiatric brain conditions — there’s no marker. The diagnosis keeps changing.”
What doesn’t change is that Americans are increasingly interested in the condition, which is part of what led Donvan and Zucker — who are also responsible for the ABC News series Echoes of Autism in the early 2000s — to write In A Different Key: The Story of Autism (Crown, $30). The hefty book, which took more than seven years to write, chronicles the history of the disease — the first diagnosed case occurred 82 years ago in Mississippi — and how treatment and awareness have improved over the past several decades.
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“We didn’t realize how bad things were until we started researching it,” says Zucker, a Peabody Award-winning TV news producer whose son was diagnosed with autism in 1996. “We knew children with autism were not able to go to school until 1975. But I had no idea how really awful it was.”
In A Different Key describes doctors administering shock therapy to autistic children as well as giving them LSD. Later came the blame on “refrigerator mothers” — women who were told their “coldness” caused their child’s condition.
“One hundred percent of doctors believed autism was caused by a mother failing to love her children enough,” says Donvan, an Emmy-winning correspondent for ABC News whose wife’s brother was diagnosed with autism. “That was the psychiatric response from the 1940s to the mid ’70s. Mothers were told nothing could be done for their children unless they underwent psychoanalysis. What a crazy course of treatment. So much time was wasted.”
But In A Different Key isn’t merely a chronology. The authors also profile the people who fought on behalf of their children and clients: Determined parents who wouldn’t take no for an answer; doctors who made important scientific leaps forward; attorneys who represented families who demanded the right to send their children to public school.
The authors also address such forward-looking questions as what will happen to the 500,000 teenagers currently diagnosed with autism when they become adults.
“The focus of treatment is that it’s a childhood thing,” Donvan says. “But it’s an adult thing, too. These kids will need support and backing. Society hasn’t turned the corner on adult treatment. We’ve come a long way. In classrooms in public schools, autistic kids sit side-by-side with other kids. There are autistic characters on TV. But we’re only halfway there.”
Ironically, one of the things that raised awareness over the past decade was the scare that claimed vaccines caused autism. The story, which has been thoroughly debunked by the scientific community, resulted in outbreaks of once-eradicated diseases like polio, whooping cough and measles. But it also brought the word “autism” into the mainstream.
“Fear was a driving force in the awareness,” Zucker says.
Both authors see In A Different Key as telling a story that extends beyond the autism community. Neither sees it as a book only for patients’ families.
“Our goal with this book was to write it for the mainstream community,” Zucker says. “We hope they’ll embrace it and that it will inspire people outside the community.”
They share a story from the book by way of explanation: A young autistic man in New Jersey had received training and learned to use public transportation. One day, he experienced a bit of a meltdown, making sounds and rocking back and forth. A couple of guys sitting near him began to harass him.
“Another passenger stood up and goes over and says, ‘Hey, this guy’s got autism! What’s your problem?’” Zucker says. “At that moment everybody on the bus got behind that young man. That bus became a community, one that supported someone who was different. We all need to have the back of people who need help.”
“We’re all passengers on that bus,” Donvan says. “Let’s be the people who stand up.”
Meet the authors
Who: John Donvan and Caren Zucker
When: 6:30 p.m. Wednesday
Where: Books & Books, 265 Aragon Ave., Coral Gables
Information: 305-442-4408 or booksandbooks.com