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
ALAN ALDA (NARRATION) Scott and Steve are 39-year
old identical twins, both with Williams Syndrome…
ALAN Is this Ursula?
ALAN ALDA How are you?
ALAN ALDA (NARRATION) …while Ursula Bellugi is
one of Scott and Steve's greatest fans.
URSULA 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
ALAN ALDA Thank you. I'm glad to be here. Hi,
we met a second ago. How are you?
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
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?
URSULA Yes. I would say it's affectionate. It's
interested in people. It's highly sociable. It's
gravitating toward people. That's their thing
in life. So…it's…I think affectionate and sociable.
SCOTT Growing up different with Williams Syndrome
you find that you have a lot of good times and
some bad times. And the main thing is that there
are people that will take good care of you. But
me and my brother, we didn't find out until much
later that we had Williams Syndrome.
STEVE Hi everybody.
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 an often profound mental retardation
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
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,
TERESA DOYLE You know what? You need another
TERESA DOYLE Okay, make your blocks look just
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?
URSULA How about-draw me a bicycle. Do you want
to do that?
SHANNON Certainly. I just drew my face. I made
sure it was a ten-speed and it had brakes.
FRED ROSE I've got two lines at the top here.
FRED ROSE And there's an array of lines down
below. I want you to pick out the two lines down
here that are pointing in the same direction as
those two at the top.
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
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 sees a face,
there's a spike of activity over the right front
of the brain -- where there's a region that specializes
in face recognition. But when a Williams brain
sees a face, this spike is absent. Instead there's
a much bigger, slightly later surge of activity
that seems to involve much more of the 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
JUSTIN'S MOM When we first came to the Salk,
we knew nothing about Williams Syndrome. Nothing
about what caused it.
URSULA Nobody knew anything.
JUSTIN'S MOM And nobody knew anything. In such
a short time, I'll never forget the day Ursula
laid down on the table in front of me. She put
a picture of the gene, the chromosome with the
gene marked on it and said "there it is, that's
what caused it." And I just cried.
URSULA She wept.
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
ALAN ALDA I mean, are you going to find out there's
a gene for compassion?
URSULA Let's call it sociability and…god damn
it, we might.
ALAN ALDA You what?
URSULA We might. We might.
ALAN ALDA You might?
ALAN ALDA You think you might actually be able
URSULA Well, in this case.
ALAN ALDA That would be amazing.
URSULA 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 That's absolutely…
ALAN ALDA I mean, you're beginning to track down
how we are who we are.
URSULA 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. BARRY
That's what I do. I do it like that. 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
ALAN ALDA Great.
ALAN ALDA What do you hope to know? Where do
you hope to get with this?
URSULA Alan, I'm going beyond my wildest dreams.
ALAN ALDA You've already gone beyond your wildest
URSULA 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.
BREAKING THE SHELL
ALAN ALDA (NARRATION) Tariq is two and a half
years old. He was diagnosed with autism 6 months
ago. His parents and I are sitting with him in
a therapy room at the University of Washington
in Seattle. Since Tariq was diagnosed he's been
receiving regular therapy aimed at helping him
break out of the mysterious and often impenetrable
shell that seems to surround people with autism,
cutting them off from the social world. DAD Two
or three months ago you couldn't redirect him.
You couldn't say, "Throw the ball to your sister.
Now kick the ball to, you know, whatever. Now
stop biting the dog or something like that."
ALAN ALDA How long every day do you work with
him? DAD We're planning up to forty hours a week
of home-based therapy.
MOM Right now we do about fifteen hours of one-on-one
with a tutor, three hours here, and on top of
that we do the occupational therapy and the physical
therapy once a week for an hour. We do speech
therapy for two hours. DAD And then he gets tired
and he sort of withdraws from us a little bit
and he does his own thing and he did his homework
and he's darn well gonna be in his own world right
now and that's it. Right? Sort of what he's doing
right now. I think he's ticked off, he's tired.
ALAN ALDA (NARRATION) Autism is frighteningly
common, affecting as many as one in every seven
or eight hundred children born. Many but by no
means all of these children are mentally retarded.
Some develop language, others never do.
ALAN ALDA There seems to be such a wide range
of symptoms. Are they all along this autism spectrum
because they have a common cause? Because they're
related to the same part of the brain? Or what?
What links them together?
GERALDINE DAWSON Well, the key feature that links
them together is the difficulties in social relationships.
So even the highest functional person may have
an I.Q. above average and really good language
may be out in the work world with a regular job.
They would still have that very fundamental problem
in relating to other people.
ALAN ALDA (NARRATION) Geraldine Dawson's own
research is focused on just why autistic children
find it hard to relate to other people. Six-year
old Alex has autism -- and to win his cooperation
the researchers have to employ patience, guile
and fun rewards. ASSISTANT You got it! LESLIE
Ready to put on this silly hat with all this hair
on it, Alex?
ALAN ALDA (NARRATION) The hat is similar to the
one we saw used in the Williams Syndrome research
-- and like that study the plan here is to monitor
the electrical activity of Alex's brain as he
looks at faces.
ALAN ALDA Is each one of these EEG signals associated
with a part of Alex's brain?
GERALDINE DAWSON Well, each one of these signals
is one of those electrodes that you saw being
put on his scalp.
ALAN ALDA (NARRATION) The signals from Alex's
brain are recorded and processed as he looks at
pictures of his mother's face or that of a stranger.
In a normal child, the brain's response to the
two would be very different. But Alex's brain
responds to both his mother's face and that of
the stranger as if they are the same. When it
comes to faces, his brain is literally indifferent.
GERALDINE DAWSON In normal development, the brain
is naturally wired to draw our attention to faces.
And you think about a young baby, even a newborn
will prefer to look at a face as compared to another
complex object. So there's something wired into
our brain that naturally draws our attention to
the social world. So we think that tells us that
that mechanism which naturally draws our attention
is not working properly. If you're not paying
attention to social information, how are you ever
going to learn to develop socially?
BONNIE Whoa. Oh, nice looking at me now. And
ALAN ALDA (NARRATION) In Tariq's therapy sessions,
Bonnie spends a lot of time trying to get him
to look at her and respond, hoping to instill
in Tariq through endless repetition a facility
most children are born with.
GERALDINE DAWSON One of the things that we're
understanding is that the parts of the brain that
are probably involved in autism are ones that
come online really early in life in the first
and second year. So what we want to do is to pick
up kids, really hopefully by birth, but right
now we're at about 12 to 18 months. And we try
to stimulate those brain systems while they're
still developing and plastic, in hopes that the
children will then kind of grow out of their autism
or at least be less affected.
BONNIE Oh, you picked dot art. Good choice.
ALAN ALDA (NARRATION) So the earlier autism can
be spotted the better. One early warning sign,
which goes along with an indifference to faces,
is the lack of a special form of eye contact.
GERALDINE DAWSON We tend to look at people at
very specific moments. So, for example, when I
want to communicate with you, I'll check in visually,
and then I'll point to something, then check back.
This is called joint attention. And it actually
turns out to be the most significant diagnostic
sign of autism. So it's not just the sheer amount
of eye contact, but it's really how he combines
eye contact with communication.
ALAN ALDA (NARRATION) Two year old Kendall has
great eye contact.
ALAN ALDA Right in the cup. You want to do it?
ALAN ALDA (NARRATION) She's a healthy, normal
little girl who's here to help psychologist Andy
Meltzoff give me a lesson in the importance of
ALAN ALDA Ah, good.
ANDREW MELTZOFF Kendall, watch this. I bet Alan
doesn't even know what we can do with this. Watch
this. Isn't that funny? Kendall want a turn?
ALAN ALDA Whoa. Very good.
ANDREW MELTZOFF Typically developing children
are like sponges. Adult in front of them just
behave and the baby watches wide-eyed and does
what they do. They become little adults in the
culture from watching the adult.
ALAN ALDA Good pop.
ANDREW MELTZOFF You want Uncle Alan to try that?
ALAN ALDA (NARRATION) Four-year old Mia is another
ALAN ALDA You want to try it?
ANDREW MELTZOFF Now that's imitation.
ALAN ALDA Yeah.
ANDREW MELTZOFF That's imitation.
ALAN ALDA (NARRATION) Andy Meltzoff has done
the same experiment with autistic children.
ANDREW MELTZOFF Now you remember this toy?
ALAN ALDA (NARRATION) This child seems social
enough and intrigued by the cup -- but he isn't
collapsing it as Kendall did.
ALAN ALDA If you just walked in on the room and
you were looking for eye contact you'd think,
oh, he's relating normally. But if you're looking
for imitation, you won't get it.
ANDREW MELTZOFF Exactly. I think imitation is
a higher art of activity than simply eye contact.
So some children with autism can make eye contact.
But what they seem to have a profound deficit
in, is doing these simple imitation games which
seems to be relating to another person from the
inside at a deeper level. It's this drive to want
to relate to you as a person. To be like you.
They don't seem to have that impulse.
ALAN ALDA (NARRATION) Andy Meltzoff thinks this
failure to imitate other people is yet another
useful early warning sign of autism. But he also
believes it may be at the root of many of the
later problems people with autism struggle with
-- a failure to see other people as beings like
GERALDINE DAWSON So one of the first things you
do in any kind of early intervention program is
teach a child how to imitate. And there's lots
of different ways to do that. What you may have
seen with Tariq is, she was imitating some of
his behavior, just so he starts to look at the
correspondence between what he's doing and what
she's doing. So in this case the child doesn't
have to think, "I have to imitate you." But they
start seeing the correspondence between their
action and your action as you imitate them.
ALAN ALDA Now, here, who initiated this?
GERALDINE DAWSON It appears that what she's done
here is she's brought out a toy that he's highly
interested in and she's doing something that is
very appealing to him.
ALAN ALDA She's blowing on it and he's trying
to get it to turn by…now she's imitating him.
GERALDINE DAWSON That's right. Now she's imitated
what he's doing.
ALAN ALDA So building up these interactions can
develop the ability to interact in other ways,
in other areas, at other times.
GERALDINE DAWSON That's true, although we do
target what are sometimes called pivotal skills.
These are fundamental skills, that if you learn
them, they open up the door to all kinds of learning.
ALAN ALDA (NARRATION) Among the most important
such skills is communication.
BONNIE Oh, you said cookie and you're looking
ALAN ALDA (NARRATION) Tariq, like many other
autistic children, is being taught to use a communication
system in which pictures replace the spoken word.
BONNIE You told me juice? Yes, you want some
ALAN ALDA (NARRATION) But while Tariq is benefiting
from what's already known about autism, the University
of Washington program is also investigating autism's
many unknowns -- including what, if anything,
is different about the autistic brain. One of
the volunteers in this research effort is seven-year
old Elizabeth. She's being prepared for a scan
of her brain in an MRI machine.
ALAN ALDA I did this once and you're taking it
so much better than I did.
STEVEN DAGER When you're in the magnet, when
we talk to you, try not to move your head like
this because then we'll lose kind of where your
head is in the magnet.
ALAN ALDA (NARRATION) Elizabeth is the daughter
of one of the scientists here.
RESEARCHER So we're slicing from back to front,
here's the cerebellum…
ALAN ALDA (NARRATION) Her brain is one of the
normal brains the researchers are comparing to
the brains of autistic children.
ALAN ALDA Have you found anything so far that
seems typical of the difference of the two?
STEVEN DAGER What we seem to be finding is that
the kids with autism have bigger brains.
ALAN ALDA Bigger brains?
STEVEN DAGER They have bigger cerebrums than
both normally developing children and kids with
ALAN ALDA So, that seems…
STEVEN DAGER Peculiar.
ALAN ALDA Odd, yeah.
STEVEN DAGER Bigger's not necessarily better.
ALAN ALDA Right.
STEVEN DAGER Clearly they have bigger brains
but their brains aren't working as well.
ALAN ALDA (NARRATION) To find out why autistic
brains don't work as well, Steve Dager and his
colleagues are also peering deep inside them,
looking for differences in important brain structures.
And they've discovered another puzzle -- a region
called the amygdala is bigger than you'd expect,
even given a bigger brain.
ALAN ALDA What is the amygdala normally associated
STEVEN DAGER Emotionality or emotional response.
So the question obviously is, if these kids have
a paucity of emotional response, or have a problem
with emotional reciprocity, why would their amygdalas
ALAN ALDA Yeah.
STEVEN DAGER And I don't know. That's what we're
trying to better understand. We're trying to better
understand as we study them over time. So these
kids are coming back now when their ages six to
seven and we're looking at the change over time
as a dynamic way of understanding brain development.
ALAN ALDA (NARRATION) Brain imaging is clearly
one of the new frontiers in autism research.
ALAN ALDA Elizabeth, you did great. That was
ALAN ALDA (NARRATION) But while Elizabeth's contribution
to autism research will no doubt pay off one day,
for now the main hope for children like Tariq
lies in the dedication of therapists like Bonnie
Smith -- and hours of patient chipping away at
the walls his autism has erected. Tragically,
for many children growing up with autism, not
even this is enough.
ALAN ALDA What do you think of the prospects
for this little boy?
GERALDINE DAWSON Oh, I'm very hopeful that this
boy will go on to develop language and to do quite
well. As I said, at this age it's extremely hard
to tell. That's another focus of our research
is to try to look at -are there early indicators
that tell us which child's going to go on and
do extremely well and other children could have
exactly the same intervention and make very slow
progress. There must be something biologically
different about those two kids. But no, I'm very
hopeful that he'll go on to develop language and
friendships. I have very positive prospects for
EACH SOUND IS A PRESENT
ALAN ALDA (NARRATION) Seven-year-old Kelly Flynn
lives with her family near Northampton Massachusetts.
One of her favorite walks is through the woods
to a nearby river.
KELLY FLYNN I love the river.
MARY FLYNN Why?
KELLY FLYNN Because it is beautiful.
MARY FLYNN Yeah. Can you hear it?
KELLY FLYNN A little.
MARY FLYNN What about when you get your cochlear
KELLY FLYNN When I get cochlear implant, I will
hear the best.
ALAN ALDA (NARRATION) Kelly has been profoundly
deaf since she was two. What little hearing she
has -- boosted by a conventional hearing aid --
is worsening. She has no trouble communicating
by sign -- but for years she's wanted to talk.
MARY FLYNN Do you like to sign or do you like
KELLY FLYNN I like to talk. That's why I want
cochlear implant. To hear better.
MARY FLYNN To hear better. Why do you want to
KELLY FLYNN Because I would love to hear more.
Because when you call me, I will hear.
ALAN ALDA (NARRATION) Tomorrow is the day Kelly
has been waiting for for months.
MARY FLYNN You're gonna go in, in the room, in
one minute. Mommy has to change her clothes, and
then I will go in there with you. Okay?
GARY FLYNN It's just the beginning, but it's
an exciting beginning. And in a way, the beginning
of her hearing in a whole new way which is very
exciting. And she's the most excited about it.
MARY FLYNN Good girl, Kel. You're so brave.
ALAN ALDA (NARRATION) The surgery that's about
to begin on Kelly will permanently implant a tiny
set of electrodes deep within her inner ear.
MARY FLYNN Thank you.
ALAN ALDA (NARRATION) In a normal ear, sound
vibrations are translated into nerve impulses
by millions of tiny hair cells lining the inner
wall of the snail-shaped cochlea. Kelly went deaf
when an infection destroyed these delicate hairs.
A cochlear implant substitutes an array of tiny
electrodes -- 22 in Kelly's case -- for the hairs
of the hair cells, directly stimulating the cells
to send their messages to the brain. Kelly's surgery
is being done at Boston's Children's Hospital
by Dr Margaret Kenna.
MARGARET KENNA What I'm doing now is drilling
actually into the cochlear. And the bone of the
cochlear is very hard bone -- harder than the
rest of the bone in the rest of the body. And
as you go towards the center of the cochlear it
gets very white. So now we have a hole in the
cochlear. Do you see it?
ALAN ALDA Oh yeah, I see it very clearly. Every
time I realize that there's is a seven- year old
girl under that draping it has an effect on me.
Do you keep that out of your mind or how do you
MARGARET KENNA Well, you have it sort of in the
back of your mind. I think just to stay focused
on the job at hand. But also I think if it was
my child, I couldn't do this. Someone else would
have to do it. I couldn't do it.
ALAN ALDA (NARRATION) The electrode array being
slipped into Kelly's cochlea is attached to a
receiver that is also implanted under the scalp.
Both the electrodes and the receiver are connected
in turn to an antenna and a magnet. The entire
implanted system is visible in an X-ray taken
while Kelly is still in the operating room.
MARGARET KENNA This is the antenna right here.
This is the magnet. This is the receiver stimulator
right here. And this is the wires, the electrodes
in the cochlear. If you look even closely, you
can almost count each individual electrode.
ALAN ALDA (NARRATION) It will take about two
weeks for Kelly to recover from her surgery.
MARILYN NEAULT Hi. Are you ready?
KELLY FLYNN Yes.
MARILYN NEAULT Good. What are we doing today?
KELLY FLYNN My cochlear implant will turn on.
MARILYN NEAULT We're turning on your cochlear
ALAN ALDA (NARRATION) A wireless transmitter
sticks to the magnet under Kelly's scalp.
MARILYN NEAULT Can you see it?
ALAN ALDA (NARRATION) From now on, this is how
sounds will get to her brain -- from the microphone
behind her ear, via a computer that will process
the sound into the signals sent to her cochlea.
Right now, Kelly's microphone isn't on. These
beeps are being fed into her cochlea directly.
The cochlea normally responds to high frequency
sounds at one end, low frequencies at the other.
The electrodes in the implant mimic this process.
Kelly has been asked to put a ring on the stick
whenever she detects a sound.
GARY FLYNN She told her friend that when she
came back maybe she'd be able to call her on the
telephone. She's already exploring it in her mind.
She's imagining the things she might be able to
do. And her hearing, it's a gift now. It's not
just being something you're born with. It's something
very special to her. It's like Christmas. Each
sound is a present.
ALAN ALDA (NARRATION) So far today, Kelly has
only heard the beeps generated by Marilyn's computer.
But now comes the moment Kelly has been waiting
for. Her microphone is switched on. Now sounds
from the room are able to enter her head.
MARY FLYNN Do you like the way that sounds? Is
it really really loud? Is it really loud? Or is
KELLY FLYNN It's perfect.
ALAN ALDA (NARRATION) Kelly gets her own little
computer to process the sounds picked up by the
microphone behind her ear into the signals sent
to her cochlea.
MARILYN NEAULT I'll just put it there. And let
the hair fall down over it.
ALAN ALDA (NARRATION) It's the sophistication
of this processing -- especially for the sounds
of speech -- that has in the last few years started
to open up the hearing world to profoundly deaf
ALAN ALDA Hello. Hi. Hi.
ALAN ALDA (NARRATION) To find out how -- and
what lies ahead for Kelly -- we're visiting a
classroom for hearing impaired children -- where
my job is to read a story.
ALAN ALDA "It isn't fair that my brother Anthony
has two dollars and three quarters and one dime
and seven nickels and eighteen pennies."
ALAN ALDA (NARRATION) The room is equipped with
a sound system so that the voice of teachers --
or guests -- is kept at a constant level. Some
of the children here have conventional hearing
aids. Several -- including six-year-old Timmy
-- have cochlear implants.
ALAN ALDA Timmy, do you like money?
TIMMY I like lots and lots of money.
ALAN ALDA Lots and lots of money?
ALAN ALDA (NARRATION) Those of us without cochlear
implants can never know exactly how they sound
to children like Timmy, but here's a guess.
ALAN ALDA "So they brought lox because my father
likes to eat lox, and they brought plants because
my mother likes to grow plants."
SPEECH THERAPIST Tim!
ALAN ALDA (NARRATION) Timmy had his cochlear
implant when he was just two years old -- and
ever since, he's been working hard.
SPEECH THERAPIST Timothy? I want you to be thinking
about your nice "k" sound okay? Okay? And Mr.
Alda will probably think about his nice "k" sound,
too. We will all think about that.
ALAN ALDA What are we supposed to do in this
TIMMY Umm…Get a match.
ALAN ALDA Make a match?
ALAN ALDA (NARRATION) When he was nine months
old, a bout of meningitis effectively destroyed
TIMMY Crack the egg.
SPEECH THERAPIST Nice job. Let's do it one more
time, Bud. Let's here the "ck" at the end. Watch
TIMMY Crack the egg.
SPEECH THERAPIST Nice job.
ALAN ALDA (NARRATION) At a time when most children
are absorbing the sounds of speech, Timmy lived
in a nearly silent world. He's been playing catch-up
ever since, not only learning to interpret speech,
but to speak himself.
ALAN ALDA Ha! Not a match.
TIMMY Not a match.
ALAN ALDA (NARRATION) Accompanied by his mother,
Tim has also spent many hours here, in the audiology
lab at Children's Hospital in Boston.
MARILYN NEAULT Don't look at me, OK?
ALAN ALDA (NARRATION) Today he's in for a routine
testing of his cochlear implant… and a tune-up
if necessary. He's played sounds at different
loudness levels and pitch.
MARILYN NEAULT I am determining how soft a sound
Timmy can hear with his speech processor in his
implant at different pitches or frequencies. And
I want to make sure that he can hear all the different
frequencies at a soft enough level for him to
hear the different sounds in speech. The "s",
the "f" and the unvoiced "th". "Sss," "fff," "th"
and also "p" and "k". The sounds that you make
when you're whispering are the trickiest to pick
up and a deaf child with hearing aids would not
hear those. With a cochlear implant you can detect
and even learn to discriminate among those sounds.
Hey Tim. Marilyn on the radio again.
ALAN ALDA (NARRATION) In a quiet room like this,
Tim's ability to hear and speak is remarkable.
MARILYN NEAULT You just say the same word after
me, okay? Alright? Are you ready? Toothbrush.
MARILYN NEAULT Butterfly.
MARILYN NEAULT Water.
MARILYN NEAULT Ball.
MARILYN NEAULT Pencil
ALAN ALDA (NARRATION) Remember, this is a boy
who was completely deaf when he got his implant
four years ago, at the age of two
MARILYN NEAULT With early diagnosis of hearing
loss, early introduction of language, early implantation
and proper therapy and nurturing of language,
this outcome is becoming far more commonplace
than it used to be. He is typical of a good outcome
but there are many many of them. I think some
people feel that there are two or three children
ever who have achieved this degree of speech reception
and speech perception and spoken language competence.
And that's not true. There are many many children
of this nature. Okay, this is the last thing.
I'll say a whole sentence and you say the same
thing after me, OK? OK, don't look at me remember.
Ready? I'm hungry.
TIMMY I'm hungry.
MARILYN NEAULT Turn off the TV.
TIMMY Turn off the TV.
MARILYN NEAULT The fruit was on the ground.
TIMMY The fruit was on the ground.
ALAN ALDA (NARRATION) Once highly controversial
within the deaf community, cochlear implants are
now finding wider acceptance -- in part because
of the striking success of children like Timmy.
MARILYN NEAULT Excellent! That was wonderful.
ALAN ALDA (NARRATION) That opposition to cochlear
implants was based in part on how they might damage
a deaf culture based around sign language. But
Tim's first language was sign. And his parents
expect sign to remain invaluable in the future.
TIMMY'S MOM If he has the implant off, he can't
hear anything at all. So if he's in the bathtub
or he's at the beach, or he can't go on slides
or on trampolines, etc., it's so nice to have
another language. So yes, we probably will always
continue. And he likes it. We'll sign to him and
he'll speak back to us. So it's really funny…In
TIMMY'S DAD It's really useful in church. We
can actually yell at our child if we need to in
church and nobody will know what's going on, so…
TIMMY'S MOM Right now Timmy doesn't think he's
any different than anyone else walking around
and in time, he's gonna know there are some differences.
But I think, from the roots that we've given him,
he's gonna be able to do whatever needs. And the
best thing that you could do is just give him
so much confidence right now, just like you would
with any small child. Just so that later on, as
he realizes he is a bit different, he can go back
and dig on those roots.
ALAN ALDA (NARRATION) For Kelly Flynn, the long
journey into the world of sound and of speech
is only just beginning. But already walks near
her home have taken on a new dimension. Finally
Kelly can hear her river.
ALAN ALDA (NARRATION) Our final story is about
a young woman who, like Kelly Flynn, has always
wanted to speak. In her case, it was cerebral
palsy that robbed her of a voice of her own. But
as we've seen as we've followed Kara Johansen
over the years, her inability to speak hasn't
stopped her from talking. I first met Kara when
she was twelve. Her mother, Pam, spoke aloud what
Kara had to say by reading the letters Kara looked
at on a plastic alphabet board.
PAM JOHANSEN A, N, D- and K- and S, O. And someone
- someone says it.
ALAN ALDA (NARRATION) I appreciated Pam Johansen's
skill at translating for Kara even better when
I tried it myself.
ALAN ALDA What was the play about? S, E, W. No?
X - Sex? No? - Well, it was the letter I saw.
ALAN ALDA (NARRATION) Kara's family and close
friends were almost as skilled as Pam Johansen
at using the board. The communication it allowed
was central to the bond that exists between Kara
and her sister, Melinda.
MELINDA JOHANSEN Kara and I are really close
and we have been that way every since she was
little. And a lot of times people categorize her-
she can't do this, she can't go on a roller-coaster,
she can't off a diving board. And that has never
been a barrier between us, because she has done
all of that and that is what keeps us together
most of the time - because we have overcome so
much together. I don't want to do this!
ALAN ALDA (NARRATION) But when Kara was fourteen,
Melinda started boarding school - and sisterly
chats became much more difficult.
MELINDA JOHANSEN It's hard for us to communicate.
It has to be over the phone and there needs to
be a person communicating with Kara just to be
able to tell me what she is saying. If there was
a way that I could talk to her directly, it would
ALAN ALDA (NARRATION) No-one better appreciated
Kara's need to talk directly than the person who
had always been her principal voice - her mother.
PAM JOHANSEN Kara loves Melinda and Melinda loves
Kara. And Kara would love to privately talk to
her sister without any other person, without an
adult -- without a mother -- to censor what was
being said. And she would love to communicate
with Melinda on her own, very privately, and talk
their secret stuff that they have to share.
ALAN ALDA (NARRATION) In 1994 an attempt was
made to give Kara a voice of her own by fitting
her with a device that would track the gaze of
her eyes. But Kara made no secret of her opinion
of its practicality.
PAM JOHANSEN It's T, O, O -- it's too -- B, U,
L , K -- it's too bulky?
ALAN ALDA (NARRATION) But the eye-tracker did
allow the researchers -- at Boston's Children's
Hospital -- to confirm that Kara's gaze was steady
enough to control some sort of communication device.
PAM JOHANSEN It's sliding down over her eyes.
ALAN ALDA (NARRATION) Over the spring and summer
of 1994, Kara and Pam Johansen made many visits
to Children's. Work on the new system was going
slowly. And Pam Johansen was acutely aware that
Kara's need for independent communication was
becoming more urgent.
PAM JOHANSEN O.K. Make a third wish.
ALAN ALDA (NARRATION) Pam Johansen had begun
to lose her own battle with cancer. She died in
October 1994. A few months later, a new system
was ready to be tested. This time a custom-fitted
helmet held Kara's head still while the eye-tracking
system was mounted separately. From it an infrared
beam shone at her eye -- which was tracked with
the help of two crosshairs - one centered on her
pupil, the other on the reflection of the infrared
beam. By comparing the position of the two crosshairs,
a computer could tell precisely where her eye
was pointed. The system was calibrated by having
Kara look at numbered squares on a screen. When
her eye fixed on a square, it lit up. The plan
was to replace the numbered squares with letters
of the alphabet so she could spell out words that
could be spoken aloud by a voice synthesizer.
RICKY RAZDAN If you don't think it's right there,
just look around that area until it highlights.
ALAN ALDA (NARRATION) Or so that she could trigger
VOICE It' s great to see you again.
ALAN ALDA What a nice reception! Hi Kara! It
's great to see you again too!
ALAN ALDA (NARRATION) Kara had prepared several
phrases in anticipation of my visit - including
a reminder of the first time we met.
VOICE I haven't done any more plays about sex!
ALAN ALDA Having you been spending a lot of time
trying to get this machine to work right?
ALAN ALDA That's wonderful. O.K. if I try this?
ALAN ALDA (NARRATION) I got to try out the test
version of what was intended to become an alphabet
board like the one her mother taught her to use.
But this one would be linked to a word processor
that would allow her to write, as well as a voice
synthesizer that could read aloud what she had
VOICE Hello Dr Watson.
ALAN ALDA (NARRATION) In January 1995, almost
a year after work on the eye tracking system began,
Melinda Johansen - away at her boarding school
in Maine -received a telephone call from her sister.
MELINDA JOHANSEN Hello. Hello?
VOICE Hi Melinda. It's Kara.
MELINDA JOHANSEN Hi Kara.
VOICE I'm using the I-Scan computer system for
this phone conversation.
MELINDA JOHANSEN That's good. Do you like it?
MELINDA JOHANSEN Did you have fun in school today?
MELINDA JOHANSEN Why not because it was Friday
and you had to go?
VOICE When you play basketball, did you win?
MELINDA JOHANSEN Of course not, we never win.
I scored eight points. And the other eight points,
I assisted. Kara, how is school going?
VOICE Good, but very stressful.
MELINDA JOHANSEN Excited about coming up next
MELINDA JOHANSEN Good. I 'm really excited about
you coming up too. O.K., kiddo, I got to go.
ALAN ALDA (NARRATION) This was the first time
Melinda and Kara had ever talked by phone without
someone else -- usually her mother -- speaking
MELINDA JOHANSEN I will see you next weekend
when you come up. O.K?
ALAN ALDA (NARRATION) Of course, this conversation
was hardly private or spontaneous. But in spelling
out her final message, Kara was taking the first
step toward the independent voice her mother had
so wished for her.
VOICE I love you, Melinda.
MELINDA JOHANSEN I love you. Bye-bye.
ALAN ALDA (NARRATION) By the summer of 2001,
both Kara's and Melinda's lives had changed. Melinda
is now married and a teacher. Kara lives at the
Massachusetts Hospital School on weekdays and
with Melinda and her husband on weekends. And
a few days ago, Kara got a new communication system
to try out.
ALAN ALDA Kara, hi, how are you?
KARA JOHANSEN Hi Hawkeye.
ALAN ALDA Great to see you…
KARA JOHANSEN What's up?
ALAN ALDA I'm sorry would you say that again?
ALAN ALDA (NARRATION) This device no longer tries
to track her gaze.
KARA JOHANSEN What's up?
ALAN ALDA (NARRATION) Instead it allows her to
use her head.
ALAN ALDA Now this little dot you have on your
forehead. This thing is reading where you look,
ALAN ALDA (NARRATION) Mounted on top of her computer
is a camera that tracks the dot on her forehead
and uses this information to control the position
of the cursor on the screen.
ALAN ALDA It's almost like watching a mouse cursor,
but your head is the mouse.
KARA JOHANSEN Yes.
ALAN ALDA Right. When we first talked, you were
interested in writing. Have you been writing?
ALAN ALDA (NARRATION) The system is far simpler
that the one Kara first found her voice with six
years ago. And it's commercially available --
no longer a cumbersome experimental device.
KARA JOHANSEN I still am very interested.
ALAN ALDA Do you have to work hard all the time
on communicating, learning different ways to communicate?
Does it seem like hard work to you or is it part
of your life, you just take it in stride?
KARA JOHANSEN Just do it and it's hard but I
just remember how my mother told me never give
ALAN ALDA Boy that's terrific. That's terrific.
You know, there's nothing you can't do. That's
what my mother told me, and it got me into a lot
of trouble because I believed it. The funny thing
is you really can do probably anything you want
to do. I mean you have this ability to stick to
it like this. And you take so much pleasure out
of life. That's the secret I think. .
ALAN ALDA (NARRATION) With her sister Melinda
still at her side, and with the help of enthusiastic
volunteers and a dedicated staff at her school,
Kara daily demonstrates the spirit and determination
of all the kids we've seen in this program who
are growing up different.