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Telling the story of parents and activists who fought for autism acceptance

January 20, 2016 at 6:25 PM EST
The story of autism is many stories -- from doctors, to parents, to the afflicted themselves. Journalists Caren Zucker and John Donvan examine that history in their new book, "In a Different Key: The Story of Autism." Jeffrey Brown sits down with the authors to discuss the evolving definition of the diagnosis and the constant of parental love.
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JUDY WOODRUFF: Now we wrap up on our series on Understanding Autism.

Tonight, we get the perspective of two seasoned journalists, John Donvan and Caren Zucker. They have been reporting on autism for years, particularly on some of the people behind the fight to better understand this disorder, from parents, to doctors, to the afflicted themselves.

And it’s the main theme of their new book, “In a Different Key: The Story of Autism.”

Jeff Brown talked with them recently.

JEFFREY BROWN: Caren Zucker, John Donvan, welcome to you.

JOHN DONVAN, Co-Author, “In a Different Key: The Story of Autism”: Thank you.

CAREN ZUCKER, Co-Author, “In a Different Key: The Story of Autism”: Hi.

JEFFREY BROWN: You write in the introduction the story of autism is many — actually many stories.

John Donvan, start. What does that mean, when you look at the kind of arc of the story you’re telling?

JOHN DONVAN: Well, the arc is that there’s a very big picture, like the tide moving in and moving out, but there are a lot of waves along the way.

The story of autism is made up of so many people in so many periods of time. And “In a Different Key” tries to bring them all into one place to show how this condition that we had never heard of until about 75 years ago came into consciousness.

JEFFREY BROWN: And many people not even until much more recently than that. Right?

JOHN DONVAN: Many people only heard about it in the last 15 years or so, largely as a result of controversy.

CAREN ZUCKER: And also, in autism, if you have met one person with autism, you have met one person, because the spectrum is so huge.

JEFFREY BROWN: You both come to this through personal experience, right?

JOHN DONVAN: Yes.

CAREN ZUCKER: Yes. I have a 21 year-old son with autism who’s now a young adult.

Our book looks back at the history at how far forward we have gone, from being in institutions and not having a place to go to school. But it sort of stops at adults.

JOHN DONVAN: Well, yes.

And our thought is that the people who fought battles over the last 75 years to get their kids out of institutions and into schools where legally they were barred — schools could say, we’re not going to educate your kid.

JEFFREY BROWN: Yes. Yes.

JOHN DONVAN: Things moved so much, not perfectly, but they moved so much that we want that message to be an inspiration for the job that’s still there to done.

JEFFREY BROWN: You talk about things being shrouded in shame, secrecy, and ignorance. Give me an example. What do you mean by that?

CAREN ZUCKER: Well, parents were told to put their children in institutions. And that was the thing that you did.

Keeping them at home, nobody did that. And if they did, they hid them. And if they put them in institutions, they didn’t tell anyone. It was what doctors told you to do.

JOHN DONVAN: And to forget about your kids. They would say, put your kids there, go home, take care of your kids who are normal, and try to forget those kids. And some parents, many parents did that through about the 1950s or ’60s.

JEFFREY BROWN: The whole history you tell from back then, even through to today, is filled with confusions, arguments, counterarguments.

So, everything seems to be on the table, definitions, responses, even to today, whether there’s an actual epidemic, all of this. Right?

JOHN DONVAN: Well, that’s because autism itself is actually not a very clearly defined concept.

And the proof of that is, the definition has changed again and again and again over the years. It’s a condition where there’s no DNA test, there’s no cheek swab, biological marker. Autism is defined by looking at behaviors. And everybody looks at behaviors differently. So, over the years, autism has almost been a diagnosis in the eye of the beholder, which allows for all kinds of arguments and dissension and theories and competing therapies to come into play.

CAREN ZUCKER: But there’s one thing that’s been a constant, which is the parental love. If you read the stories in this book, throughout all of the battles, all of the fights, all of the controversies, it’s all about fighting for their kids.

JEFFREY BROWN: That’s a story, that runs through the book, parents, and then activists, of course, but parents really leading the way.

JOHN DONVAN: Parents were…

(CROSSTALK)

CAREN ZUCKER: Right, which is why this is — this isn’t just — this isn’t a book for the autism community, per se. It’s for everybody who’s ever had a child, who’s ever cared about somebody. What wouldn’t you do for your child?

JEFFREY BROWN: Was there a character that jumps out at you that you could tell us about?

JOHN DONVAN: Our friend Donald Triplett was the first child diagnosed with autism. Caren found him back in 2007.

You found a phone number that you thought might be his, and you called him up. And we weren’t sure it was the guy who showed up in the medical literature as case one, because the only name was given was Donald T.

And what did you hear?

CAREN ZUCKER: I got his answering machine. And he answered, “Hello, this is Donald Triplett. Happy June. Happy fall. Happy Christmas. And a great 2007 to you.”

And I knew as soon as — it was, like, John, it’s — we found him. We got him. This is Donald. We definitely have Donald.

JOHN DONVAN: He’s such a wonderful guy, Donald, but the wonderful thing about his story, a couple of things, one is that who is and who he has turned out to be. He was very, very severely disabled as a child.

He’s the role model for the diagnosis of autism. He couldn’t use language effectively, didn’t connect with people. And, today, he has a wonderful life as a man in his 80s. He’s living alone in a little town in Mississippi. He plays golf all the time. He travels the world. He has friends.

And the other thing about that story is his community and the role they played in it.

CAREN ZUCKER: They have totally embraced him. They accepted him for being different, so he wasn’t different.

JEFFREY BROWN: Given this sort of history of confusion, counterarguments, what do you see happening now?

JOHN DONVAN: We’re at a point now where things aren’t perfect, but we have at least tried to address the challenges of children with autism in ways that we weren’t doing nearly sufficiently even 25 years ago.

They’re in public schools. They’re getting direct education and direct therapy. But that’s, we think, the job only being half-done, because there’s a whole — something’s going to happen to all of these kids, and they’re basically going to grow up — like, your son has just turned 21.

CAREN ZUCKER: And his whole life, he’s had incredible support and services, because of the parents that fought for them.

JEFFREY BROWN: You see more acceptance.

JOHN DONVAN: Definitely.

JEFFREY BROWN: You see more understanding in the society.

JOHN DONVAN: For children.

JEFFREY BROWN: For children. But you still see many problems.

JOHN DONVAN: Well, there’s a lot of dissension and controversy of all kinds. There always been in the autism community.

We have lived through some of them. The whole vaccine debate has been one of them. There are disagreements over whether autism is something that should be always and all the time embraced and celebrated as just a different way to be human, or whether autism sometimes can be really so debilitating to individuals that you want to do something to change those disabilities in them.

There are fault lines all of the time. But I don’t think there’s a fault line on this question of, what do we do about adults? I think everybody agrees it’s a problem, but nobody really has a solution. And I don’t sense that people are loving the adults the way they have learned to love kids, because the truth is, they’re not going to be cute in the same as kids are. And they shouldn’t have to be cute to deserve and merit our attention and support.

JEFFREY BROWN: Do you have a last word on that? Is it a cultural issue? A political issue? Or what do see?

CAREN ZUCKER: I think it’s cultural first, that some adults are — they’re not embraced, that people — they’re unknown still. People aren’t used to having adults with autism around.

JOHN DONVAN: A little story we tell in our book is the perfect thing.

It happened a few years ago on a bus in New Jersey. There was a kid sitting on a bus. He was about 19 years old — 17 years old. He’s learning how to ride the bus. His teacher is in the back of the bus. He’s been for weeks showing him how to ride the bus, and he’s been fading himself farther and farther back.

And the kid starts making some noises and flipping his fingers and rocking in an odd way. And two passengers behind him start getting agitated about this. And they start saying to this kid, “Hey, weirdo, what’s you’re problem?”

And the great — yes, the great thing is what happened next.

CAREN ZUCKER: Is that he had been riding a bus for a few weeks. So the people on the bus were used to him. And some guy stood up and said, “Hey, he’s got autism. What’s your problem? What’s your reason for acting like a jerk?”

And what happened is a community formed around him.

JOHN DONVAN: Both the problem was there and the solution was there.

JEFFREY BROWN: All right. That’s one of the many stories told in the book.

And the book is “In a Different Key: The Story of Autism.”

Caren Zucker, John Donvan, thank you both.

JOHN DONVAN: Thanks, Jeff, very much.

CAREN ZUCKER: Thank you for having us.

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