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Tuesday, April 26, 2011

Autism Now: Robert MacNeil Answers Viewer-Submitted Questions on Series: Transcript & video | PBS NewsHour | April 26, 2011 |

Autism Now: MacNeil Answers Viewer-Submitted Questions on Series | PBS NewsHour | April 26, 2011 | PBS

Watch the full episode. See more PBS NewsHour.


SUMMARY
In response to Robert MacNeil's six-part Autism Now series, the NewsHour received scores of questions, compliments and concerns via our website, social media and voicemail. Hari Sreenivasan discusses some viewers' comments and questions with MacNeil.


Transcript
JEFFREY BROWN: And to viewer reaction and Robert MacNeil's response to the Autism Now series.

For that, we turn to Hari, who's joined us in the studio.

HARI SREENIVASAN: All last week, we asked you to let us know what you thought of our special series on autism. And hundreds of people left questions and concerns on our website. Many commented from Facebook accounts, sent emails, and even left voice-mails that we have read and listened to.

We said we would have Robert MacNeil back to answer some of your questions. And he joins us now from New York.

Thanks for being with us.

ROBERT MACNEIL: Thanks, Hari.

HARI SREENIVASAN: So, even though we had six nights of coverage, and we saw -- seen all of these stories, what we saw in these hundreds of emails is that there are so many more stories about autism.

So, one of the first questions and concerns is how did you choose the stories that you did? And what else do you wish you could have done?

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

We worked, that is, I, for about a year on my own researching, and then for six months with Caren Zucker, the producer, who herself is the mother of a son of nearly 17 with autism, and who has produced many stories on autism at her time with ABC News.

We worked to -- we thought what we should do is provide a comprehensive overview of what we saw as the pressing issues in the autism community. Now, the things we didn't cover are many. And many other stories could be done.

We didn't talk about adults living now with autism, which is a very interesting story, and what their lives are, how they work, where they live, what kind of support they need. We did concentrate on those about to become adults.

And if anybody is interested in this and wants to read the transcript of the interview with Peter Gerhardt of the McCarton School in New York who is an expert on this, it's really fascinating on what he envisions the lives of adults can be and should be.

Then, we didn't talk about autism in its contact with the criminal justice system. There are stories of people approaching adulthood who lose control of themselves and maybe physically attack someone. And some of those people get sentenced to prison terms.

We didn't talk about the odd phenomenon medicine is now investigating, which parents have noticed for years, that when children with autism develop fevers, their autism symptoms can become milder and so on.

I could go on and on. There are many other stories to do. We thought we were doing the main, urgent ones.

HARI SREENIVASAN: OK. Now, people can go on to our site and see that there's an overwhelming number of comments on there that are very supportive of the series.

Let me just read you a couple very quickly, before I get to ones that are perhaps a little bit more pointed.

Hugh Schmidt writes in, "You need to this if you have children."

And Jackie Schlegel-Polvado, who is a special-needs professional, says: "Wow. This could just as well have been my life. They touched so many important topics in such a short period."

That said, let's get to a couple of the concerns people had about your personal connection to this series. Here's one that's -- was on our website here.

It says: "I reject the personalization of the story. It diminishes the importance of the subject, since it suggests the story may only be as important because Mr. MacNeil's grandson is afflicted. This confirms the seeming reality that a disease or dysfunction is only as urgent as the celebrity who sponsors it."

ROBERT MACNEIL: Well, I'm sorry he sees it that way, because I don't think I could bring very much celebrity to the issue -- to the issue.

What I tried to bring was half-a-century's experience as a journalist of telling stories. That's what I thought I brought to it.

HARI SREENIVASAN: All right. Now, since you also brought your family into it, it kind of opened up another line of criticism that we saw in some of the comments regarding your daughter, her opinions on autism and how that did or didn't influence you.

Here's a note that was left on our website: "He's profoundly influenced by his daughter's unsupported belief that vaccines caused little Nick's autism. It's really too bad that Robert MacNeil, in his role as a caring grandfather, chose to promote ideas that have clearly been contradicted by evidence. Nonetheless, I respect him for his efforts."

ROBERT MACNEIL: Well, what I was profoundly influenced by was the pain and distress that I, over four years, saw my daughter's family experiencing because of my grandson's autism.

And I wasn't promoting anything. I was trying to be a reporter. The fact that my daughter believes what she believes about vaccines is her belief. I love her.

I think differently. I've tried to bring to bear a lot of habits learned over many years as a journalist and look at the whole thing objectively. So, when she says in the first program that's what she thought, I say immediately, yes, but medical science says that there is no evidence of such a connection. All the epidemiological studies do not prove a connection.

And, later, we have a very objective discussion of the issue in our third program, the one on causes. So, I think, if those who think that way -- the trouble with autism and the communities of autism is that a lot of them are locked into a kind of zero tolerance for any point of view that isn't precisely their own, and they sort of sit in their trenches and hurl missiles at -- at each other.

I think that it is -- it -- if the people who feel that way are fair-minded, they would go back and look at the two programs, one and three -- and they're all on the website -- that mentioned vaccines, and then read the transcripts of the people involved, including the transcript of the doctor who treats my grandson's gastrointestinal problems, Timothy Buie of Mass. General Hospital, who is -- was part of a team that attempted to replicate the findings of the now notorious British doctor Andrew Wakefield and were unable to replicate them.

So, I think we have treated it objectively, but we didn't ignore it.

HARI SREENIVASAN: All right.

And, finally, a process question also came through on how you chose the guests and the experts that you did.

There's a comment from John Horton, who writes in and says: "I think an adult with autism should have been included on the roundtable. They're talking about them but not to them."

ROBERT MACNEIL: Well, perhaps he's right.

We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it.

But they speak for themselves. And we didn't see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism.

HARI SREENIVASAN: And, finally, so many of these comments dealt with such specific questions about medication, about diet, about treatments. And some of these circumstances that people find themselves in are just heart-wrenching.

What, where, how can people get help to find the resources that can assist them?

ROBERT MACNEIL: Well, I'm certainly not qualified to direct them, because I'm a journalist who studied this. I'm not an expert.

But we have set up a resource. And if people want to call, it's the Autism Response Team at Autism Speaks, the largest of the autism advocacy groups. And that number is 888-AUTISM2. And the Response Team is there on the phones to answer specific questions or direct people to the kind of services they're looking for.

HARI SREENIVASAN: All right.

Robert MacNeil, many thanks for this series and for joining us today.

ROBERT MACNEIL: Hari, thank you.

HARI SREENIVASAN: As a reminder, all the episodes in the series will remain online, along with a complete list of resources to help people understand and deal with autism.

All that and more is on our website at NewsHour.PBS.org.

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