ROBERT MACNEIL: Our NewsHour series on autism has raised important issues of policy that face government and public health officials. And we conclude the series by exploring them tonight.
Joining us are Dr. Thomas Insel, director of the National Institute of Mental Health, which directs federal funding for autism research; Catherine Lord, professor of psychology, pediatrics and psychiatry at the University of Michigan; Ilene Lainer, a lawyer and executive director of the New York Center for Autism, a private advocacy group; Jon Shestack, a Hollywood producer and the co-founder of a former advocacy group, Cure Autism Now. Both Ms. Lainer and Mr. Shestack are parents of children with autism, and as we said at the beginning of this series, I am the grandfather of a child with autism.
Dr. Insel, the committee that you chair, the Interagency Coordinating Committee that sets priorities for autism research — in its latest report describes the rising prevalence as a national health emergency. What is the public health community doing to meet something you describe as an emergency?
DR. THOMAS INSEL, National Institute of Mental Health: Well, one of the things that this committee has been able to do is to raise awareness. For many people, autism is still very much in the shadows. And although parents, like the parents we have here, have lived with this for a long time, for much of the country, this is a new story.
One of the things that we’re so aware of is that the changing prevalence, and that when I got into this field 20 years ago, the prevalence was thought to be about one in 2,000, one in 2,500. Today we’re looking at numbers of one in 100. So, part of what the IACC is trying to do is to make sure people realize that not only has this increased enormously, but it’s continuing to increase. There’s no leveling off here.
ROBERT MACNEIL: Catherine Lord, do you see autism being treated as an emergency?
CATHERINE LORD, University of Michigan: I think that on the whole, on medical systems and educational systems are often pretty slow in terms of how we respond. And we’re not yet thinking forward enough about what are we going do as kids enter this system and as we begin to work with them and their families. And as they get older.
ROBERT MACNEIL: How do you see it, Jon Shestack?
JON SHESTACK, Cure Autism Now: It’s an emergency. People may not think so. But when you have millions of people — let’s say we have 1.5 million people with autism — let’s say, maybe a little less, maybe a little more — above 18. We have another 500,000 more coming up. Those people, once they pass 18, who pays for them? Their parents have to pay for them. Society will be the — or they will be forced onto Medicaid rolls that can’t take them. In California, where I live, services are being cut back. Ten years from now the country’s going be crushed by the needs of these people, and nobody is looking down the road to say this is an emergency, we have to — we have to start planning now.
ROBERT MACNEIL: Dr. Insel, nobody’s looking down the road?
DR. THOMAS INSEL: I think people are looking down the road far enough to say this is a mounting problem. Let me put a real clear point on this. We have services, which we can provide. But we don’t understand this disorder well enough to know how to cure it, how to prevent it, and even at this point, how to treat the core symptoms medically. Even though we recognize this is a developmental brain disorder, we’re not at a point yet where we have the kinds of effective, rapid, powerful treatments that we really are looking for.
ROBERT MACNEIL: Catherine Lord, you told us from Michigan a month or so ago that there’s just enormous disparity in the delivery of services.
CATHERINE LORD: Absolutely. I mean, some kids are getting great help. So, there are wonderful teachers and really good programs out there. But you can live across the street from a child who goes to a very affluent school district that happens to have a really good teacher. And your child can’t go there, and you may have nothing. So, I think we know a lot about things that help not to cure autism, but to make it better. But the degree to which it’s actually offered to people or accessible to people ranges tremendously.
ILENE LAINER, New York Center for Autism: Over the last 15, 20 years, we’ve seen a change in autism education where we have a better understanding of what we can do to help children with autism learn and grow. And that’s in the education system not the medical. We have a better understanding of what that is. The problem is it’s not available to most of the children out there with autism in this country.
ROBERT MACNEIL: We’ve done in this series a story on the charter school in Manhattan, which you helped to found, and didn’t get your son into, I gather. And comparing it with a school in the Bronx for 700 children with autism. Now, the ideal, the one-on-one teaching is apparent, but the cost of putting the ideal into practice is apparently just prohibitive.
ILENE LAINER: It is very costly to put one-on-one into practice, but they are finding through more research that one-on-one isn’t necessary with all children. But we need to get this information out. We need to teach those teachers how to work with children with autism. I think the charter school may be closer to the gold standard. A wonderful, terrific place that I too would love to have my child in. But I think there are good schools that we could provide in the public system, and we’re not doing that yet.
DR. THOMAS INSEL: And the reality is we don’t know enough to do this much, much better. So, there’s a — there’s a knowledge gap that we are asking to fill that we think is really the goal of science. It’s to be able to understand this and to be able to provide the kinds of interventions that will be much more effective in the future.
ROBERT MACNEIL: Jon Shestack, compared with other medical conditions, are we spending proportionately enough on autism, given the prevalence now?
JON SHESTACK: You know, it’s not a competitive sport, right? I mean, everybody’s suffering is real. No one’s suffering is worse or not worse than anyone else. But if you look at it this way, someone has autism from when they’re 2 till they’re 78. And they cost a bundle of money. Then no, we’re not spending enough money on it.
If you — I mean, the story as with many other diseases, you get a disease, it’s tragic. You either get better or you die, at which point, you don’t cost anybody any money. But with autism, you keep causing pressure on the family, the community, the school, the state forever. And so, I would say, no, there’s not enough money. There’s not enough money spent on it.
And it’s not a question of taking it away from somebody else, it’s a question of putting more toward what society should put its money toward, which is helping the most vulnerable people, who by the way, are your grandson, my son, her son. They are not like some freaks you see in a movie, or six aisles down in the supermarket, if it’s one in 150 or one in 110, whatever that number is, it’s like the last four aisles in your church. It’s everybody. It’s all over the place.
ROBERT MACNEIL: Catherine Lord, some see the federal aid for disabilities as morally an extension of civil rights protections. Given the political atmosphere and economics in the country at the moment, do you see the society committing taxpayers to further huge provision of services?
CATHERINE LORD: I think it’s going be very hard with the current economy. Even economically, not even just talking about the emotion, there are real advantages to planning this. But it’s a hard battle right now, given all that people deal with.
ROBERT MACNEIL: If there’s more effective intervention early with young children, does that make them turn into adults who are more likely to be viable in — able to work, to live as independent a life as possible?
ILENE LAINER: Yes, I think there’s reasonable basis to believe that it does. Do we have good information? Solid, reliable research? No, because we haven’t done the long-term research that needs to be done.
JON SHESTACK: Yes. It does. It does. It doesn’t for everybody. But if it does it for half of the people, if you spend $20,000 a year on intervention for 10 years, and half of the people are then able to live in a group home in a good way, have a job, maybe drive a car. And not cost somebody, the state, $200,000 a year to warehouse them. Yes, it makes a giant difference. They don’t have to be all of them. Forty percent would be a huge — would be a huge improvement.
ILENE LAINER: And here’s the problem. Is that as a society, I believe, we suffer a form of soft bigotry against people with autism and other forms of developmental disability. And that is the bigotry of low expectations. And when families get this diagnosis, the diagnosis is as if the outcomes are not going to be a hopeful one.
And that has to change, and it can change, and it should change. And if we give the kind of interventions that Jon is talking about, it’s not going to be good for everyone, but it’s going to be better than not doing it. And we have to do more research to understand how to help those that it doesn’t work with.
DR. THOMAS INSEL: But the fact is we now have just in the last couple of years, we have early interventions, which we know if we start at 18 months or 24 months have a bigger impact than what we’ve seen before. They are behavioral interventions. They’re expensive. They’re intensive. But they do help about 50 percent of children. As Jon said, that’s a lot. That can really make a difference. But we don’t do that broadly. This is still something that needs to be disseminated. It needs to be done in a way that’s far more effective across the country.
ILENE LAINER: I think that the evidence shows that we can make a material lift difference in people’s lives if we have the kind of early intervention that Dr. Insel was talking about. Where I think it breaks down is when someone turns 21. They fall off the cliff in terms of support, services, expectations and even an understanding of what we should be doing to help them.
JON SHESTACK: And they often go backwards in terms of their abilities. And…
ILENE LAINER: They do.
JON SHESTACK: And the — and no one is actually responsible for them. No one is legally, statutorily, regulatorily responsible for the well-being of that person, who needs someone to look after their well-being.
ILENE LAINER: So, this is an important point. What Jon is talking about is that children with autism, it is the responsibility of the educational system. You have an entitlement to an education. And whether it’s funded or not, you’re entitled to a fair and appropriate education. When you turn into an adult with autism, there is no entitlement. You’re subject to the vagaries of whatever locality you may live in. And we know very little about how to adequately help people with autism, and our expectations are deplorable.
JON SHESTACK: Let me just give you one example. Dove, my son, is 18. So, now he gets supplemental Social Security income. So, for an autistic person, he gets $634 a month. He would get more, but since — he would get a little bit more, but since he lives with us, they deduct his rent. And so, after I pay for Depends, which are not paid for by Medicaid or Medi-Cal, that is about $400 a month. So, that’s really not enough to support a person. Or let alone a person who, in his case, needs help every minute of his life. It’s just…
ROBERT MACNEIL: We’re…I’m sorry.
JON SHESTACK: You know? And we’re doing really good. We’re doing better than a thousand families, than most families.
ROBERT MACNEIL: Yes. As a last word, where do you think we are in how we’re handling the autism emergency?
CATHERINE LORD: I mean, I think we know a lot of things that allow us to do better. I think the issue is just how do we do better? How do we get services to adults? How do we get appropriate services to kids everywhere, not just in great school districts?
ILENE LAINER: The reality is Jon and I are both parents. And I would guess that you and I would both probably agree that if this could be detected, and we could have avoided it, or if it could be treated, we would be delighted. But absent that treatment, those of us who are living with autism right now, if we don’t get the supports that we need for our adult children…
I don’t know about you, Jon, but I worry about what happens when I’m not around to take care of him. I worry about who’s going to watch after him. Who’s going to make sure he’s safe. Who’s going to make sure that he has access to those things that he needs. And that he has the same kind of fulfilling life that I want for my other child: a place to live, something meaningful to do during the day, and a community in which to live. We’re not doing that for our people with autism. And they’re entitled to it.
ROBERT MACNEIL: Well, Ilene Lainer, thank you. Dr. Thomas Insel, Catherine Lord, Jon Shestack, thank you very much.
JON SHESTACK: Thank you.
DR. THOMAS INSEL: Thank you.