Growing Up Different

The following transcript is excerpted from the PBS television program, Scientific American Frontiers hosted by Alan Alda, which premiered November 13, 2001.   This segment deals with Williams Syndrome.  Other segments of the show talked about autism, cochlear implants and speech.  For the complete transcript, please visit the PBS web site.  

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FRIENDLY GENES

ALAN ALDA: The kids at this picnic are growing up in a world that's very different from the one most of us experience.

CHORUS: Abracadabra!

ALAN ALDA (NARRATION): It's a world where people make more sense than things.

BETSY: Thank you so much for coming

ALAN ALDA (NARRATION): We also see why most kids love to imitate -- while others are locked in a world of their own. We share the joy of a girl's first experience of sound… and hear where it may lead.

TIMMY: Yesterday he lost his hat.

COMPUTER VOICE: I love you Melly.

ALAN ALDA (NARRATION): And we eavesdrop on a speechless girl's first phone call.

ALAN ALDA: I'm Alan Alda. Join me as we enter the worlds of kids who are "Growing Up Different."

FRIENDLY GENES

ALAN ALDA: As kids, we're all of us convinced that we're different from the other kids. And of course, we are. A lot of our time as kids is trying to figure out what everybody else is doing and thinking and why, and you know, it's tough. Perhaps the toughest part of being a kid. And it takes years and years, sometimes a lifetime of practice. But for some kids, this struggle to understand the world is even tougher. That's because the difference that they're born with is so profound, that the world is more baffling than usual. In this program, we spend some time with children who are growing up different and with some of the researchers who are trying to understand why they see the world the way they do. We'll see how the insights that these researchers are achieving are not only helping the kids who are different make sense of the rest of us, but they're also helping the rest of us understand what it means to be human.

ALAN ALDA (NARRATION): We're at a picnic in La Jolla, California. At first glance the kids here are like most kids -- certainly they're high-spirited enough. But they are all linked by possessing a rare genetic disorder called Williams Syndrome.

ALAN ALDA: Hello. Are you Scott? How are you?

SCOTT: I'm Scott. Alan Alda. So nice to see you.

ALAN ALDA: Nice to meet you.

SCOTT: You were the best in MASH, I'll tell ya that. You were the best doctor in MASH I've ever seen.

ALAN ALDA (NARRATION): Scott and Steve are 39-year old identical twins, both with Williams Syndrome…

ALAN: Is this Ursula?

SCOTT: Yes.

STEVEN: Yes.

ALAN ALDA: How are you?

ALAN ALDA (NARRATION): …while Ursula Bellugi is one of Scott and Steve's greatest fans.

URSULA BELLUGI: Yes, this is a special occasion.

ALAN ALDA: Yes. Who's this?

ALAN ALDA (NARRATION): Ursula is one of a growing number of scientists fascinated by the extraordinary contradictions of Williams Syndrome.

BETSY: Hi Mr. Alda. I'm Betsy and I'm very very glad that you're here and that you could spend some time with us here today. Thank you so much for coming.

ALAN ALDA: Thank you. I'm glad to be here. Hi, we met a second ago. How are you?

JUSTIN: Good.

ALAN ALDA: What's your name?

JUSTIN: I'm Justin.

ALAN ALDA: Justin, glad to meet you.

ALAN ALDA (NARRATION): Only one in 25,000 children is born with Williams Syndrome. It's most characteristic physical feature is an appealing, elfin face. On a social occasion like this, kids with Williams Syndrome are in their element.

ALAN ALDA: Hi. We didn't meet.

KIRSTEN: Hi, I'm Kirsten.

ALAN ALDA: How do you do? Great to meet you. I'm Alan. Great to meet you.

SHANNON: I'm Shannon.

ALAN: How are you, Shannon?

SHANNON: I've been wanting to meet you a really long time.

ALAN ALDA: Something that's so clear, meeting these kids here today, is how affectionate they are. That seems to be a typical personality attribute of these kids. Am I right about that?

CLOWN: Would you like to help us stir this up? Okay, come on over Mr. Alda.

ALAN ALDA: Hi.

ALAN ALDA (NARRATION): When Scott and Steve were diagnosed back in the early 1980s, they were among only 60 identified cases of Williams Syndrome in the country. It was then that Ursula Bellugi began her studies here at the Salk Institute. The first goal of her research team was to build up a better picture of the strengths and weaknesses of people with Williams -- whose social skills mask their struggle to make sense of the world.

NASIM BAVAR: I'm going to ask you some questions that I'd like you to answer. Justin, can you tell me how many months there are in a year?

JUSTIN: There's 24 months in a year.

NASIM BAVAR: Okay, good job. How old is the oldest woman on Earth?

JUSTIN: I don't know. Probably fifty. I don't know.

NASIM BAVAR: How much does a compact car cost?

JUSTIN: A compact car?

ALAN ALDA (NARRATION): Cars, by the way, are a favorite topic of Justin's.

JUSTIN: I'd say, like $24,000. $24,000 actually.

NASIM BAVAR: What's the average salary per year for a doctor?

JUSTIN: Um…I would say eight to forty-five. I'd say eight dollars and forty-five cents.

NASIM BAVAR: Per year?

JUSTIN: Yes. Per year.

TERESA DOYLE: How many blocks do you have, Barry?

BARRY: One, two, three, four, five, six, seven, eight.

TERESA DOYLE: You know what? You need another block.

BARRY: Nine.

TERESA DOYLE: Okay, make your blocks look just like mine.

BARRY: This is the easiest one.

ALAN ALDA (NARRATION): Perhaps the most striking problem for people with Williams is performing visual-spatial tasks. They can get the details right, without seeing the overall picture.

TERESA DOYLE: Do your blocks look just like mine?

BARRY: Yes.

BETSY: Three…and there is one.

ALAN ALDA (NARRATION): In contrast to Betsy's problems with lines, she has little trouble with a task matching faces.

FRED ROSE: And I want you to pick out the three faces down here that are exactly like this one.

BETSY: That one. OK. That one. That one.

ALAN ALDA (NARRATION): The most intriguing aspect of this face recognition skill was uncovered with the help of a little hat.

ALAN ALDA: I think this is the sixth or seventh time I've had electrodes attached to my head.

DEBRA MILLS: Do you want more?

ALAN ALDA: I'm really getting into it.

ALAN ALDA (NARRATION): The hat houses an array of electrodes to pick up electrical signals from the brain.

DEBRA MILLS: You'll be seeing a series of faces. You'll be seeing pairs of faces. You'll see one face and it'll go off, then you'll see a second face. And your job is to decide whether that second face is the same person or a different person from the first face.

ALAN ALDA (NARRATION): It turns out that when a non-Williams person like me first realizes he's seeing a face, there's a spike of electrical activity about a quarter of a second later, mainly in the right side of the brain. But when a Williams brain sees a face, the response is strikingly different. The surge of electricity is a little later but five times bigger, and seems to be spread over almost the entire brain.

DEBRA MILLS: It's like the brain is using as much brain tissue as it can to try to solve this problem. So it's organized in a different way.

ALAN ALDA (NARRATION): It's almost as if faces are so important to people with Williams Syndrome that their brains throw everything they can into recognizing them. The Williams Syndrome research project has little trouble finding eager volunteers.

SHANNON: It's a lot of fun now. And I know I can help others that might have it. Williams Syndrome.

SCOTT: And help the scientists and people who work so diligently for people with Williams Syndrome to find out why this occurs and further the studies.

ALAN ALDA: And have you learned anything from these tests? Tracking your brain waves. Have you thought about the way you think?

SCOTT: Yes and no. But mostly, mostly I enjoy life now. I used to not really enjoy things as much as I do now because I've been walking in my shoes with Williams Syndrome and it's been hard for me to find people to…people who are able to accept the situation and be able to accept people who are walking around different. Of course, I haven't had acupuncture in a long time!

ALAN ALDA (NARRATION): The biggest breakthrough into why people like Scott are different came when the genetic basis of Williams Syndrome was discovered.

JUSTIN'S MOM: When we first came to the Salk, we knew nothing about Williams Syndrome. Nothing about what caused it.

JUSTIN'S MOM: I just cried. In such a short time, for science to go from telling parents, "Your child has Williams Syndrome, that's all we know." To being able to say, "Here's the cause of it."

ALAN ALDA (NARRATION): The cause is literally visible under a microscope. When stained with a fluorescent dye, the chromosomes of a normal cell show a bright band in the middle of both copies of chromosome 7. In the cell of a person with Williams Syndrome, only one copy of the chromosome has this band. The missing chunk contains only about 25 genes. So scientists are hoping to be able to trace not only the disabilities of people with Williams Syndrome but also some of their special strengths directly back to just a handful of genes.

ALAN ALDA: I mean, are you going to find out there's a gene for compassion?

URSULA BELLUGI: Let's call it sociability and…god damn it, we might.

ALAN ALDA: You what?

URSULA BELLUGI: We might. We might.

ALAN ALDA: You might?

URSULA BELLUGI: Yes.

ALAN ALDA: You think you might actually be able to…?

URSULA BELLUGI: Well, in this case.

ALAN ALDA: That would be amazing.

URSULA BELLUGI: Yeah, it would be, wouldn't it? I think that's sort of the hunt we're on. And I think that's a possibility.

ALAN ALDA: So you're actually by studying carefully what the roots of Williams Syndrome are, you're actually finding out what the roots of qualities that all of us have are, huh?

URSULA BELLUGI: That's absolutely…

ALAN ALDA: I mean, you're beginning to track down how we are who we are.

URSULA BELLUGI: I think that's put very very well and that is true and the added fascination that we've got is that we can understand so much more how the brain does it. And how you can get in unusual ways to these strong qualities.

ALAN ALDA: Why is the keyboard here? Does somebody play? Do you play?

BETSY: I play. All of us do.

JORDAN: We take turns.

ALAN ALDA (NARRATION): One quality that seems to be possessed by many people with Williams Syndrome is a talent for music.

ALAN ALDA: Why don't you make up a song for us? I think that will be great.

BETSY: Okay.

ALAN ALDA (NARRATION): It was hard to believe, but Betsy came up with this song, words and music, right on the spot.

BETSY (singing): Alan Alda, you're a very nice guy. You're kind and caring and I can't tell a lie. You're so interested in all that we do. It is so good to have a guy like you in this world. You are part of our family. You care about us as all of us can see. It's really great when you want to know about our favorite kinds of music or where we like to go when we're together. Thanks for coming, I'm glad that you are here. And since you are so interested in us, we hold you dear In our hearts and lives. Thanks for all you do. Thanks for caring for different people in this world It's wonderful, just like you.

ALAN ALDA: Great.

ALAN ALDA: What do you hope to know? Where do you hope to get with this?

URSULA BELLUGI: Alan, I'm going beyond my wildest dreams.

ALAN ALDA: You've already gone beyond your wildest dreams.

URSULA BELLUGI: By trying to link up an aspect of gene to brain development and higher cognitive functions. I don't hope for anything more than that.

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Last modified: April 15, 2007