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Aired August 17, 2006 - 18:00:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
JONATHAN MANN, CNN HOST: A terrible mystery of the mind. Autism is afflicting a growing number of victims around the world and neither the scientists who study it nor the people who have to live with it really know what to do.
Hello and welcome.
There are people who can't communicate well or at all, people who can't really form relationships and don't respond appropriately to the outside world. And until about 60 years ago, there was really no good explanation for their problem. Then it got a name and an identity, autism. But even now, six decades later, research is still changing the way scientists and psychologists try to explain it. What seems increasingly certain is this: the strange disorder we call autism is probably the result of several diseases with several different causes, and today there are more people suffering from it than ever before.
On our program today, a world we don't understand.
We being with CNN medical correspondent Dr. Sanjay Gupta.
DR. SANJAY GUPTA, CNN SR. MEDICAL CORRESPONDENT (voice over): Eight- year-old Jordan and his 7-year-old sister Gina Grace have both been diagnosed with autism. And when you meet them, it's hard to believe they have the same disorder.
For sure, autism is complex, hard to define, and a bit of a mystery and there is still no way to test for it. There are many types of autism.
TOMMY BATES, FATHER OF TWO AUTISTIC CHILDREN: She is moderate in some areas. She's severe in others. You know, so it's so complex, but her official diagnosis is moderately autistic. Our son is PDD-NOS was his original diagnosis, and that has now changed to Asperger's.
GUPTA: Autism has been broken down into five disorders that make up what is called Pervasive Developmental Disorders, or PDD. They are Autistic Disorder, Pervasive Disorder Not Otherwise Specified, or PDD-NOS; the less common Rett Syndrome; and Childhood Disintegrative Disorder; and Asperger Syndrome, which is on the low end of the autism spectrum.
Doctors believe most autism is genetic, but beyond that it's difficult to define what exactly autism is.
DR. FRED VOLKMAR, CHILD PSYCHIATRIST, YALE UNIV.: For a child to have autism they have to have significant problems in social interaction. That's where the word "autism," comes from, living in your own world.
GUPTA: Regardless of the type, one thing has become more clear: the number of children living with autism is rising and is now higher than ever before. Today, as many as one out of every 166 children will be born autistic.
Boys outnumber girls four to one. But it is girls who often have more severe autism. We know this because doctors are tracking and diagnosing autism more than ever before.
WENDY STONE, VANDERBILT UNIV. AUTISM RESEARCH: It's really the absence of behaviors. It's not the presence of unusual behavior.
GUPTA: Jessica and Tommy Bates don't concern themselves too much with definitions. They have not one, but two autistic children. And every day they simply try to figure out how to help them.
JESSICA BATES, MOTHER OF TWO AUTISTIC CHILDREN: That's the million- dollar question. It's not like with a cancer patient you can say, OK, let's try chemo or radiation. You just have to, you know, bide your time and start one thing, see if it works, and if not, move on to something else.
GUPTA: As the Bates now know, every child can be different. Siblings of children with autism are at higher risk of also having the disorder, but so far the other children in the Bates' family, 2-year-old Chloe and 1- year-old Gabriel, seem fine.
Little Gina seems to have been affected the most, but in many ways she teaches her family lessons every single day.
T. BATES: Our daughter is a blessing. Both of our children, all four of our children, but especially Gina. Every day she's helped me grow so much.
GUPTA: Getting a haircut can be traumatic for 4-year-old Sebastian Gomez. You see, Sebastian's autistic, and until recently, simply being touched could trigger a tantrum.
CHRISTINE FRY, PRINCETON CHILD DEV. INSTITUTE: It's really a milestone to come from a child who would throw himself on the floor for a haircut.
GUPTA: Contrast Sebastian now to him singing the same song a year ago. The exhaustion and frustration of a child you can't comfort or control is a pain.
For Maria and Alfredo Gomez, living in a new house in Miami, Sebastian's autism diagnosis at 16 months led to another struggle: debt. They were shelling out thousands of dollars for private therapists with no insurance coverage.
MARIA GOMEZ, MOTHER OF AUTISTIC CHILD: I could give you a list of horrible things that could happen to us, which would be covered by insurance, that would cover his occupational therapy. It would cover his speech therapy. If it's a developmental issue, it's not covered.
GUPTA: Only eight states mandate health insurance coverage for autism. And with therapies costing around $70,000 a year, autism can break the bank. Another complication, educational resources vary greatly from state to state.
VOLKMAR: It is a bit of a roll of the dice in terms of where you're at and what happens to be available.
GUPTA: Like many families with autistic children, the Gomezes were forced to move to get better care. They enrolled Sebastian at the Princeton Child Development Institute at New Jersey, where tuition is paid for by the state. Still, with Alfreddo commuting from Miami, the distance tests the couples resolve and their marriage.
The reality, advocacy groups say the divorce rate in autism families is 80 percent.
M. GOMEZ: It's very difficult not to blame each other, not to resent things, the move, the changing our lives, the living in different states. It's a huge gamble.
I will never forget the first time Sebastian just got up and gave me a kiss. I froze because never did I expect such a thing ever to happen.
GUPTA: Small miracles -- what the sacrifice and struggle of raising an autistic child is all about.
There are many faces of autism. For each of these children, there's a family that hopes somehow, some way, their child will succeed in breaking the bonds so they can function in everyday life.
The Pike family is one of them. Their son Andrew was diagnosed when he was a toddler.
CINDY PIKE, ANDREW'S MOTHER: Andrew's initial diagnosis was severe. He had no language, no social skills.
GUPTA: Andrew's parents took him to Emory University for one of the best-known autism therapies called Applied Behavioral Analysis, or ABA, which uses rewards for language and social interactions as simple as smiling or making eye contact. His parents had their own rewards.
UNIDENTIFIED MALE: When I was putting him in his car seat, and just told him how much I loved him, and just in a whisper I heard the first time, "I love you."
GUPTA: He was four and a half at the time.
Andrew's progress continues with the help of a lot of people, including his speech therapist...
UNIDENTIFIED FEMALE: What can we do with a cookie?
UNIDENTIFIED MALE: We eat the cookie.
UNIDENTIFIED FEMALE: That's right. We eat the cookie.
GUPTA: ... a physical therapist to improve his muscle tone.
UNIDENTIFIED MALE: Ready? One more. One more. Whoa!
GUPTA: ... and his ABA therapist.
PIKE: He's not the story of this is a recovered child. Andrew is a story of a kid that's worked hard, really hard.
GUPTA: Autism researchers like Yale University's Dr. Fred Volkmar say the key to success is early and proper intervention.
VOLKMAR: We are changing the prognosis of autism. With earlier intervention and with more effective treatments, kids are learning better and better. And they are doing better and better. So, the outcome is improving over time.
GUPTA: Of course, levels of improvement vary. Andrew's very fortunate to have a good support team. He's able to go to school with typical kids and play with his friends from the neighborhood. His mom knows he's far from cured. But she is happy he's come a long way.
PIKE: Andrew still needs constant supervision. Andrew still needs extreme support. But to go from the level that he was to the happy, interactive kid that you have seen today is a success story.
GUPTA: Dr. Sanjay Gupta, CNN, reporting.
MANN: We have to take a break now. When we come back, learning to survive, even thrive, with autism.
Stay with us.
MANN: Take a child who might not talk, who often won't listen, whose behavior is erratic and can't easily be controlled, a child who needs full-time care long past the age when other youngsters are gaining new abilities and independence. Take that child and raise them. It will take your lifetime, and more.
Part of the pain that autism inflicts falls on the families that have to live with it. Couples with autistic children may tell you about exceptional divorce rates in autistic families. Sanjay Gupta alluded to that a moment ago. Experts who have looked into it suggest that the parents are wrong about the divorce numbers, but it's telling that the parents themselves believe them. It's hard to raise an autistic child and hard to stay married while you do it.
An activist organization called AutismSpeaks.org tried to capture the trying experience on film.
UNIDENTIFIED FEMALE: I'm going to do a year of really hard work and he's going to be fine, he's going to be better. And then the year comes by and you're like, OK, maybe, like, two years. And then maybe, like, three years. And then you realize, OK, so basically this is lifelong.
UNIDENTIFIED FEMALE: I imagined Little League and trips and vacations and girlfriends, and it's taken me a very long time to let those dreams go.
UNIDENTIFIED FEMALE: Christian is a human being who is fighting so hard, like you can't believe, and what's been taken from him is indescribable.
UNIDENTIFIED FEMALE: Jackson is never going to get married and never going to have kids. When I'm at somebody else's wedding, and they're dancing with their mother, what I would do to dance with Jackson.
MANN: "Autism Speaks."
You don't get any sense of what eventually happens to those children in the movie, what kind of adults they do grow into. Only a handful of autistic adults can explain it for themselves.
Joining us now to talk about life with autism is Stephen Shore, author of "Beyond the Wall, Personal Experiences with Autism and Asperger's Syndrome."
Thanks so much for being with us.
Can you tell us about your own experience, first of all?
STEPHEN SHORE, AUTHOR: Yes, I sure can.
I was you might say hit with a sort of autism bomb or regressive autism at 18 months, so until that time I had developed typically.
Then I lost functional communication. I developed various autistic behaviors, such as self-stimulatory behavior and self-abusive behaviors, and it was very rough on my parents and for me as well. As a matter of fact, by the time two and a half rolled around, I was evaluated and seen as so severe that I was recommended for institutionalization.
MANN: And yet, to jump ahead, you're a PhD candidate, you're a published author. It worked out for you. Is that typical?
SHORE: It's becoming more common. I was diagnosed in 1964, in the mid-1960s, and at that time autism was considered to always have a dire prognosis. But I was really fortunate to have parents who provided the proper early intervention at a time when early intervention did not exist, and teachers and professionals who helped me along the way. And I think these days with all of the interventions that we have out there, with all of the research that's being done on autism, people who -- children on the autism spectrum can grow up to adulthood, while remaining autistic, but also they can be very successful.
MANN: How different though is life for you? How different is it for other autistic adults?
SHORE: Well, one way I like to look at autism is that we experience and perceive the world in a different way than most people and one example has to do with sensory issues.
A lot of us are hyper- or hypo-sensitive, you might say overly sensitive or under sensitive, to senses from the environment. So, early on in the broadcast when you were talking about Sebastian, who had the difficulties with haircuts, I had difficulties as well. Haircuts were a painful event. I felt every hair being pulled on my head as my hair was being cut, but I did not have the verbal ability to tell my parents that this is what the problem was and therefore there was a lack of understanding.
MANN: It just seems like these are such -- you talk about the pain of enduring a haircut -- such terribly sad, traumatized children. It must have been an unimaginable experience living that life.
SHORE: Well, it was very difficult and there are still some difficulties that I have with being on the autism spectrum.
MANN: What's hard for you today?
SHORE: Well, these days, one thing that jumps to mind is facial recognition, so, in other words, remembering who people are. I teach a college course in statistics and it takes me all semester to begin to learn who my students are and to recognize them both inside and outside of class.
MANN: I'm struck just to talk to you, because to so many of us, we look at autistic children and we don't think they're capable of going to college, never mind teaching college. You're an exception in so many respects, but what about the other autistic adults? Where do you find them today? They're not all teaching college courses.
SHORE: No, not all of us are. Just like with children on the autism spectrum, autistic adults range across the spectrum, ranging from adults who still have a very difficult time engaging in the environment, they may not have any reliable means of communication. There are other adults who are living and working in supportive environments, supported living and supported employment, and it zooms all the way up to adults who are getting along in the world, they've made it through or around many or most of their challenges and were able to lead fulfilling and productive lives.
MANN: There are so many different theories about exactly what causes autism, there are so many theories about what works for individuals, the youngsters, the adults, who have autism. What seems to work for the people you've met? Is there one common thread that runs through all the happy stories?
SHORE: I'd say the biggest common thread is that it starts out with parents and other people who support the child with autism, accepting the person with autism as a full human being, for who they are. But at the same time, there is a realization that there are significant challenges facing us. And there is the vital need to apply the appropriate early intervention. And part of the challenge that faces professionals working with people on the autism spectrum is that there is such great diversity and variation within the autism spectrum.
So for one child, the Miller Method may work, but for another Applied Behavioral Analysis may be more appropriate.
MANN: Stephen Shore, you're an impressive man.
SHORE: Thank you.
MANN: Thank you so much for talking with us.
We take a break. When we come back, the global autism epidemic and the way our world sees their world.
Stay with us.
MANN: Officially, there are believed to be 400,000 or 500,000 children in China with autism. But the numbers are anyone's guess. Qualified care is spotty at best and parents are reluctant to see their children diagnosed for fear of the stigma that is associated with mental illness.
From year to year, the statistics on autism keep changing because the disease seems to be getting worse and medical reporting seems to be getting better, but different countries are all noticing something is happening, and many are doing what they can.
Joining us now to talk about that is Dr. Jeffrey Bradstreet of the International Child Development Resource Center.
Thanks so much for being with us.
It is clearly getting worse, but when you look around the world, are there reliable numbers? Does anyone really know about how quickly this epidemic is spreading?
JEFFREY BRADSTREET, INTL. CHILD DEVELOPMENT RESOURCE CTR.: We only really have good data from a few countries, mostly European and America and Canada. And when we look at those countries we see most of those data indicate very rapid rise.
As an example, just recently in the "Lancet" the U.K. reported approximately 2 percent of boys have an autism spectrum disorder, and that's truly catastrophic.
Third world nations in Africa or in Asia don't have that kind of collecting power, to go out into the community and really get good statistics for us, and the little bit that we do know would indicate that it's every bit as bad if not worse in those nations.
MANN: How much of the epidemic is simply the result of better diagnosis?
BRADSTREET: I think that's a very small part of it. As an example, you might miss a kid with autism at three or four, but by the time they go to school, every schoolteacher is going to recognize that this child has autism. It is such a devastating disease, from what you've seen with the examples of children you've had on the show, that just isn't going to get missed or not diagnosed.
MANN: Now, even in the single country of the United States, there are a lot of different ways of addressing the problems, all of the problems, that we call autism. But you've traveled widely. When you look around the world, are doctors, are professionals, treating these children in widely divergent ways? Or do people basically now change the same approach around them?
BRADSTREET: It's very interesting. I think there's two modalities that are becoming more widely accepted internationally. One of them is behavioral therapy interventions, and there's diversity within that group, but in general, behavioral concepts like Card (ph) or Miller or those kinds of approaches are very well accepted internationally.
And there is a new and emerging confluence of data supporting biomedical intervention, so looking at the immune system or at the toxicology of the kids, cleaning up the immune system and the environment internally and externally, and that's gaining popularity in China, in Indonesia, in Africa and in Europe, as well as the United States. So people recognize that this is not the cleanest place to live anymore and our kids, much like canaries are used by miners to detect, you know, harmful gases and frogs will show us ecological decline, our children are telling us something about the ecosystem on this planet, and it's not a pretty picture.
MANN: How much of a stigma is still associated with autism, like so many other mental disease?
BRADSTREET: Oh, it's tremendous, and it's very culturally dependent. In certain places in Ireland, as an example, you just couldn't take a child with autism to the pub, so that child is going to stay at home under-treated, under-diagnosed and not accessed.
Stephen and I were both in Ireland, and we were amazed at the disparity of the groups, where some families got very excellent care, it was tremendous, the resources of committed parents. Other parents, within their community or within their village, just couldn't do that.
The same is true of Indonesia, especially true in Asia, and clearly we see the same problems in Africa.
MANN: So whatever doctors would or wouldn't do for these children, neighbors had an enormous impact on how they were raised.
BRADSTREET: Certainly the culture of acceptance or rejection of someone who is different, who has what appears to be a mental disorder or a biological disease that reflects in behavior, is not accepted very well in most places.
MANN: Let me ask you about the disease itself, though, going back to even what people are saying here in the United States, which is this isn't really a disease, it's a syndrome, which is to say a family of disorders. Some people say it's more than that, this is something that we're going to describe in very different terms five or ten years down the road.
BRADSTREET: A good friend of mine, Robert Hendron (ph), who is the director of the Mind Institute at the University of California, says we shouldn't be talking about autism but autisms, and I couldn't agree with him more. There is probably 20 different types of things that ultimately wind up labeled autism, and yet have very different biological roots and origins.
MANN: It's really a mystery. Good luck with your work, Jeffrey Bradstreet, of the International Child Development Resource Center, and thanks.
BRADSTREET: Thank you.
MANN: And that's INSIGHT. I'm Jonathan Mann.
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