For the first time in more than 15 years, Robert MacNeil is returning to the program he co-founded, with a major series of reports on Autism Now. The subject that drew him back is one that resonates deeply with his own family and many others. Robin’s 6-year-old grandson, Nick, has autism.
The six-part series, “Autism Now,” will air on the PBS NewsHour beginning April 18. It’s the most comprehensive look at the disorder and its impact that’s aired on American television in at least five years. For more than a year, Robin has been researching and preparing these stories. He and his producer, Caren Zucker, have been criss-crossing the country producing the reports for the past five months.
As Robin told Hari Sreenivasan during a recent visit to our Washington studio, the series is designed to provide viewers with an authoritative, balanced look at the latest scientific research and medical thinking about the disorder. Equally important, it chronicles the growing impact of autism as seen through the eyes of families, children, educators and clinicians.
Since Friday is the beginning of Autism Awareness Month, we are posting Hari’s interview with Robin to introduce our audience to the series:
Editor’s note: The name of this series has been changed to “Autism Now.”
The broadcast reports will be complemented with a special web page here on the NewsHour’s website that will have a wide range of additional stories, resources, original video and a forum for viewer responses.
Please check back later this month for a special section on autism, previews of Robin’s reports and a forum where you can provide your own feedback about your experiences and what you’ve seen on the NewsHour.
And you can read a transcript of an extended version of Hari and Robin’s conversation below:
HARI SREENIVASAN: This is the Rundown. I’m Hari Sreenivasan, I’m joined by a very special guest today, Robin MacNeil, who is going to be a reporter on a special series on autism. It’s going to be six parts long, we’re going to carry it out from a Monday to a Monday. In the interest of full disclosure, he also does appear on my paychecks. But…
ROBERT MACNEIL: We could change that. (Laughter)
HARI SREENIVASAN: Yes, yes. So first of all, why this fascination with autism, and what are you trying to accomplish?
ROBERT MACNEIL: It grew out of the fact that I have a six-year-old grandson, who lives in Cambridge, Mass., who’s on the autism spectrum – my daughter’s son. And I had very little knowledge of, or concern about autism, before he was diagnosed four years ago.
And when I see how it has impaired his development and his physical well-being, and the effect that it’s had on his family, and his older sister, who’s 10, I just felt I had to do something about that. I thought of doing a documentary about it, looking at the whole subject of autism today. But Jim Lehrer said, “Why don’t you do a series on the NewsHour?” when we were talking over a year ago now. So that’s the genesis of the series.
And I’ve been lucky to work with a freelance producer who did many stories about autism in the past, and knows a great deal about it. My learning curve has been accelerated because of that.
HARI SREENIVASAN: So what areas are you going to be focusing on? You have human stories interspersed with science.
ROBERT MACNEIL: Yes, exactly. But the large bulk of the series is human stories. The first one is about my grandson. It’s the first time ever in my career as a journalist, which goes back 60, 50 years or so, that I have brought a member of my family into a story. It is crossing a boundary — I know — but it seems justified, and in this one case, and in that one story, it’s quite personal. And it’s about how he is, and how he came to be diagnosed, and how the family is living with it. I find it very moving. Other people who’ve seen it, find it very moving.
He’s a dear little boy, and he fits a, what some people are calling a new paradigm about autism, which has always been diagnosed as a delay in, or impairment in mental development. There are wires crossed in the brain as it develops, or something analogous to that, which delays speech. It delays the most — delays or impairs for life — the most human thing we have, which is our ability to look into each others eyes and feel that other person’s existence and what might be going on in their mind, and to empathize with them. That is denied — largely denied — to children with autism.
But there are also discovering increasingly, and my grandson is an example of this, that many children with autism have physical disabilities as well. So, it took a long time to have all this diagnosed, because mainstream medicine hasn’t always been sensitive to these other manifestations of autism, so he has a severe disorder in his gastrointestinal system, he has brain seizures, small brain seizures, he has trouble with his mitochondria, which in each cell is the kind of battery in each cell, it’s what nourishment recharges with energy that runs the human body. These are a lot of physical impairments for a little boy to carry, as well as the mental disabilities that autism confers. But since those have been diagnosed, and now treated, his physical condition has improved a lot. And he’s really in a position where he can benefit to more attention to catching up with language, for instance. His language is delayed. So that’s one piece.
The next piece is on prevalence — how frequently is autism occurring? Of course, the rate of diagnosis of autism in children has been rising rapidly over the last decade or so. The latest figures from the Centers for Disease Control are that one child in 110 is now diagnosed with autism. So we look at families in California — one family that has three sons, all with autism, and look at the effect in that family, and what the autism looks like. Because there’s extraordinary diversity within autism. While some symptoms are in common, others are hugely different, and the behavior’s hugely different.
And then we talk to experts on why does it seem to be increasing? One man believes it’s because we’ve widened the definition of autism and we’re now including children who used to be diagnosed with mental retardation at one end of the spectrum. Or with childhood schizophrenia, perhaps, at the other end. So that’s number two.
Number three goes into the really fraught area of causes. What is causing this condition? It is fraught, because this is still baffling to medical science, which has solved so many other health problems. And there … at first, when there were great advances in the understanding of the human genetic system, going back a decade or so, there was hope that there would be — they would identify quickly a simple, genetic cause, as happens with other diseases. It’s not the case. The more genetic research they do, the more complicated it seems. It may be many, many genetic pathways. But also, adding to the new thinking, more and more awareness that toxic factors in the environment may play on individual predisposition in among some children. And so that’s number three — the causes.
Then we go into treatment, and treatment for autism mainly falls on education. Children go to the doctor periodically, but they go to school every day. And under the federal mandate in the individuals with disabilities education act, children with autism and other disabilities have to be given free, appropriate education. That is a huge burden on the public school system. We have a school in the Bronx, New York, with 700 children with autism. And we contrast that with an experimental charter school which has only 30 students, who are able to be given the most individual, one on one, close attention and treatment, which is the ideal in a way, but clearly prohibitively expensive for the school system as a whole. And we follow families through that school experience. That’s treatment.
The fifth one is what is going to happen when a huge cohort of American teenagers with autism reach 21. And that will happen over the next few years. One person described it as a freight train about to run into the social services system. When you reach 21, the federal mandate for free education for disabilities ends. And there are very few services. So some people have described it as they’re going to fall off the cliff.
And we examine a particularly poignant case of a young man with autism who is physically very well developed, and capable of competing in the New York Triathlon a few years ago, swimming, biking, running. He’s an expert biker, he can go very fast, but he doesn’t understand the gears on his bicycle. His father has to tell him. He has a little job, a supervised job, of delivering mail in a retirement community and he does that very efficiently and meticulously, but he can barely speak, and so on. And what will happen to him — he is a remarkable young man in a lot of ways — with this sort of cruel paradox of some skills and some disabilities that happens to so many. What happens to him when he becomes 21? He has the ability to memorize huge, all the dialogue in a movie. For instance, one that’s obsessive with him is “Beauty and the Beast.” And he sings it with his sister, who’s a college junior at the moment and is very close with him. He sings it with his sister, and one of the most poignant lines right at the end is “We don’t like what we don’t understand, because we fear it.” And he sings that, but does he understand what he’s singing or not? Although it’s so touchingly relevant to the situation.
And then finally is a discussion on what are the public policy issues raised by all this, with a roundtable discussion. That will be on the last day. With the director of the National Institute for Mental Health, Dr. Tom Insel, and other advocates and experts on what happens to these adults? What provision is going to be made? Are we as a matter of civil rights about to extend the kind of compassionate generosity of this society has shown to children with disabilities? Are we going to extend that to people who may need support but could benefit from further education and training for the rest of their lives? It’s a big question. Are we delivering the best services that we know about to the children with autism across the country, so that whatever capability they have of developing better before they become adults rendering them less vulnerable as adults: Are we doing as much as we can, or as much as we promised as a society? And such questions.
One doctor, his name is Jeffrey Leiberman, who runs the Psychiatry Department at the Columbia University School of Psychiatry Medicine, says if you compare this to polio, we aren’t even at the iron lung stage yet with autism. And we discuss where are we.
HARI SREENIVASAN: So that’s a range of what you’re going to focus on — what are you leaving out? What’s on the cutting room floor?
ROBERT MACNEIL: Well, one thing we haven’t gone into, which is another story, which is the enormous holes there are for parents with autism in how they pay for the treatments, depending on the condition of the individual child. What’s covered by insurance and what is not? The laws are changing around the country. We’re going to go into that on your website, and put some information there. We haven’t done that directly in the series.
We are going, for instance, there are stories now about young men with autism who can lose control of themselves and become violent. Occasionally, and quite recently in the Washington Post there was a story about a young man who’s been sentenced — or at least found guilty of an assault and the recommendation is that he is sentenced to 10 years in prison. Is this happening to a lot of young men with autism, who occasionally can lose control of themselves? Those are stories that might be done that we’re not doing.
There are a lot — the whole situation is very complex. We’re doing what I’ve described to you.
HARI SREENIVASAN: So one of the topics that people in the autism community come around very quickly is the impact or the influence of vaccines and that’s a, as you were reporting this story, probably saw how passionate this community was.
ROBERT MACNEIL: I know about it, because my daughter refers to it in the first one. And what I’ve said is, she has, says her piece, because my grandson seemed to be developing quite normally until the time of his vaccine. And she says, she doesn’t know. Was it a coincidence or what? But, all the medical establishment and public health officials have maintained for years that every epidemiological study that has been done to connect vaccines with autism has proved negative. In other words, there isn’t valid proof. In the section on causes, we go into that again, because it’s the issue, as you just said, that won’t go away.
Although medical science has a settled mind about it for quite a long time, because they’re also concerned about people who might stop having children vaccinated with the result that often life-threatening diseases from the past would recur. But, it won’t go away. Because some people, as you indicated, continue to believe in the connection. And just now, the committee of public policy officials, which sets the priorities for autism research, has just now, in March, recommended that research be done into whether there could be a very small subset of the population with a genetic predisposition to be especially sensitive to environmental effects, including, possibly vaccines. So it’s this committee, the Interagency Autism Coordinating Committee, has opened the door a little on that question.
HARI SREENIVASAN: So for you this report, this series of reports has taken you several months. It’s included a very personal angle that you didn’t have in any other story that you’ve covered. So what have you learned in this process?
ROBERT MACNEIL: I’ve learned how amazingly complex this issue is, and how despite the surge in research and a lot of fascinating things that have been found, it may be connected with the fact that Americans are marrying older than we used to a generation or two ago, therefore having children later. And that might have an effect. The extraordinary fact that boys are four times more likely than girls to develop autism. Why? What is the — how has our environment changed over the last couple of decades in ways that might be toxic to a person with a particularly narrow genetic predisposition. All fascinating questions that science is grappling with and coming up with pieces of answers — but no simple answer.
And there may be — in the meantime, although it may be years before we have definitive answers because it is so complex, they are beginning to be able to develop treatments that may grow out of their partial knowledge.
HARI SREENIVASAN: Alright, so we are going to have a section on the site where viewers, users can come and ask questions, and then after the entire series airs, on the NewsHour, we’ll have another conversation. We might not be in the same room, but we’ll have another conversation and we’ll try to get some of those questions addressed. So you’ll be able to see as those questions come up, and then you can start to say, “Here’s what we also learned in the process,” right?
ROBERT MACNEIL: Right. I don’t pretend to be an expert on this. I am a journalist who’s been deeply absorbed in it for about a year now, but I’ll answer the best I can.
HARI SREENIVASAN: Robin MacNeil, thanks for stopping by.
ROBERT MACNEIL: It’s a pleasure. Thank you.
HARI SREENIVASAN: This is the Rundown. I’m Hari Sreenivasan. Stay with us.