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Autism Now: MacNeil, Lehrer Discuss ‘National Emergency’ Explored in Series

April 15, 2011 at 12:00 AM EST
NewsHour founder and former anchor Robert MacNeil's six-part series on the puzzling prevalence of autism in the U.S. starts to air Monday on the PBS NewsHour. MacNeil speaks with Jim Lehrer about what's explored in the series and describes how autism has affected his family.
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TRANSCRIPT

JIM LEHRER: Finally tonight, some advance words on the special series of reports on autism that will start Monday here on the NewsHour.

The correspondent is a very familiar one: Robert MacNeil, reporting for us for the first time in over a decade.

His six stories, called Autism Now, are a comprehensive look at its impact and prevalence, as well as the latest on research.

I spoke with Robin from New York earlier today.

Robin, welcome.

ROBERT MACNEIL, NewsHour co-founder: Thank you. You’re good to do this.

JIM LEHRER: Look, your interest in autism began as a personal interest, did it not?

ROBERT MACNEIL: That’s right.

Four years ago, my grandson Nick, Alison’s son, was diagnosed with autism at the age of 2. He’s now 6. And when — I have learned since that when any family has a member with autism, the whole family tends to revolve around that condition. It so permeates every aspect of their lives that, in many conversations with Alison over the years, I felt more and more inclined that I just had to do something about this, what I could learn about it, and to help draw more attention to the condition.

The committee of the National Institute for Mental Health recently called this a national health emergency.

JIM LEHRER: Wow.

ROBERT MACNEIL: And the more people know about it, the better.

JIM LEHRER: Sure.

Well, look, we have an excerpt from the very first of the reports that’s going to run on Monday, which tells just a scrap of the story about you and Nick.

Let’s look at that.

ROBERT MACNEIL: OK.

This was Nick when he was 9 months old, a healthy, alert and engaged baby, with no apparent medical problems. Now at 6, my grandson seems like a different child, showing the classic symptoms of autism, a disorder in development, his difficulty connecting.

Can I read that one for you? You want to look at it yourself?

Nick struggles with language, the rigidity and resistance to change Nick shares with other children with autism.

NICK: We’re going to go home.

WOMAN: Yes. We go home. We walk this way.

ROBERT MACNEIL: A tendency to suddenly appear absent, to withdraw into an emotionally detached inner world of his own.

Those symptoms are characteristic of the autism spectrum — severe to mild — in Nick’s case, relatively mild. But beyond such mental difficulties, Nick has serious physical illness: in his digestive system, his mitochondria, the energy needed by his cells for normal activity, plus frequent small brain seizures, and extreme sensitivity to light and sound.

JIM LEHRER: So, Robin, is there an exact definition of what autism is, at least in accepted definition?

ROBERT MACNEIL: Well, it’s a good question.

There is a definition published in the manual that people in the mental health business use to describe it. And I have just mentioned some of the symptoms.

JIM LEHRER: Sure.

ROBERT MACNEIL: It’s a difficulty connecting, a difficulty with language, a difficulty empathizing with other human beings, and a remoteness about it.

Plus, in his particular case, which is why not only because he is my grandson, we’re putting him first, but because he represents a wider concept of autism now, that it can be accompanied by all these physical conditions.

JIM LEHRER: Yes.

What is known about the cause of, not only in Nick’s case, but in all cases?

ROBERT MACNEIL: Ah. It’s still quite a mystery. But that is the subject of our third report on Wednesday night.

We have talked to the latest — people doing the latest research, and they’re finding it an increasingly complex condition. They thought a few years ago that they were going to find a simple genetic clue. They haven’t. They’re finding many, many genes, and possibly many things in the environment today added to a genetic predisposition which could trigger the neurodevelopment effects of this.

So, it is still some years from finding the cause.

JIM LEHRER: So, that means there is no cure. There’s no treatment?

ROBERT MACNEIL: Well — well, there are forms of treatment now.

I mean, there is some drug treatment for people with seizures, for example. And if you can afford it, or the school system can afford it, one-on-one, individual education can help relieve some of the social symptoms of autism, and draw these young people away from it, especially if caught very young.

But, as far as everybody knows now — most people know now — it is a lifelong condition, mild or severe. And many of these people will need assistance for all their lives.

JIM LEHRER: Now, when you said — used the word emergency a moment ago, does that mean this is growing, or what is the — how widespread is it among Americans?

ROBERT MACNEIL: It now represents about 1 percent of American children, one in 110.

But the head of the National Institute, who is on our last program, said he feels that it is still growing. There’s some disagreement about the rate of growth. Some people feel it’s because they have widened the definition of autism to include things that used to be called things like retardation.

But others say, no, that only explains part of the increase. And it is — some people want it called an epidemic. But that suggests another kind of medical condition than this.

It is, nevertheless, a very — a very interesting, complex, frustrating, and, for the families, not only heartrending but demanding of them in looking after these children, an extent of love and patience and attention that is really extraordinary.

JIM LEHRER: What’s the principal focus of the research right now, of trying to find out exactly what happens and why and what can be done about it?

ROBERT MACNEIL: It is — as our program on Wednesday night will show, it’s both genetic. They thought they would find a simple genetic cause. They have not.

And they’re looking both at — more increasingly at environmental factors. You know, we have added a lot of substances to our environments in the last few generations. And those, together with genetic — some form of genetic predisposition or susceptibility, is where they expect to find not one cause, but combinations of causes that may be very complex.

JIM LEHRER: OK.

Well, Robin, we look forward to all six pieces that begin on Monday and — and salute you for doing this.

ROBERT MACNEIL: Well, thank you. See you then.

JIM LEHRER: You bet.

JUDY WOODRUFF: And you can already watch the first story in Robin’s series in its entirety on our website.

It’s part of much more coverage online that complements our broadcast stories. You will be able to see Robin’s stories the night before they appear here on the program.

The site also features information about dealing with costs, with insurance coverage and resources for autism.

You can provide your feedback via e-mail, Facebook, Twitter and even by phone. And when the series is over, Robin will respond to viewer questions. It’s all on our special Autism Now page.