A Scientist's Saga: Give Son The Gift Of Speech When Dr. Barry Gordon's non-verbal son Alex was diagnosed with autism in 1996, he could find little research about autism without words. Then Gordon, a neurologist and an experimental psychologist, met a man of means whose son had a similar condition.
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A Scientist's Saga: Give Son The Gift Of Speech

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A Scientist's Saga: Give Son The Gift Of Speech

A Scientist's Saga: Give Son The Gift Of Speech

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From NPR News, this is ALL THINGS CONSIDERED. Im Mary Louise Kelly.

This next story is about a child with autism and his father, a scientist. Not just any scientist but one with expertise to study his own son's condition and perhaps improve it. But there's a catch: The scientist's research has primarily benefited another child.

Independent producer Mary Beth Kirchner profiles one man's journey pushing the limits of scientific research and parental devotion.

(Soundbite of bus)

MARY BETH KIRCHNER: It's 3:00 in the afternoon and a mini-yellow school bus has stopped at the home of Barry and Renee Gordon in suburban Baltimore.

CELINDA (Babysitter): Hi, Alex.

(Soundbite of laughter)

KIRSCHNER: Their son Alex has just arrived and his babysitter, Celinda, is waiting at the curb.

CELINDA: How was school?

Mr. ALEX GORDON: (unintelligible)

KIRSCHNER: Alex is autistic, severely autistic and has never spoken a word.

CELINDA: Did you have a good day?

KIRSCHNER: But the sound of his voice carries up to the birds in the trees while he runs and stops up the long driveway, his backpack dragging behind him.

Mr. GORDON: (unintelligible)

KIRSCHNER: Alex is 14 and has just returned from a full day at his special needs school. His late afternoon routine began with a kiss for his mom...

Ms. RENEE GORDON: Oh, thank you. Did you have a good day at school?

KIRSCHNER: ...a quick snack in front of the TV, and then more therapy at home.

Professor BARRY GORDON (Neurology and Cognitive Science, Johns Hopkins University): There's a variety of tasks to try to help expand his cognitive skills. And it's practical...

KIRSCHNER: Alex's father, Dr. Barry Gordon is a neurologist and an experimental psychologist at Johns Hopkins University in Baltimore. Gordon has spent much of his career studying memory and how human beings develop language. But he never imagined his life's work would become so personal.

Prof. GORDON: Can I get a kissy?

You see, he gives me his forehead to kiss.

Ms. GORDON: That's his kiss.

Prof. GORDON: Thats his kiss.

KIRSCHNER: His son, Alex, was diagnosed as autistic at the age of four.

Prof. GORDON: He couldn't do anything a normal child did. He was in a preschool and he couldn't even go "Ring around the Rosy." He couldn't seemingly understand or even pay attention to a word that anybody said. And at some point, I got pretty frustrated.

KIRSCHNER: Gordon knew as both a doctor and a parent, he should leave his son's care to the professionals. But there was little research about non-verbal autistic children.

Prof. GORDON: And so I wrote up a grant proposal to look at speech perception. I tried peddling it to private sources and talked myself hoarse, and never got anywhere.

KIRSCHNER: Not long after, Gordon was invited to be part of a conference for prospective donors, where he was asked to talk about memory and learning. After his lecture, he was at a table where the guests started informally sharing stories about their children. And Gordon mentioned to the person sitting next to him that his youngest son was autistic. And that dinner companion said...

Prof. GORDON: Your youngest son sounds a lot like my partner's son. He's over there. I dragged him to this meeting. He hasn't given any money to this group. Why don't you go talk to him?

KIRSCHNER: Gordon walked over to say hello and his work was forever changed. That person across the room had the resources to personally fund Gordon's research. His real question was: Do you think you your son or mine could ever learn to talk?

Prof. GORDON: You know, my Ph.D. is in psycholinguistics. I'm a behavioral neurologist. I had a son who couldn't speak, couldn't learn. I'd worked in memory.

(Soundbite of laughter)

Prof. GORDON: If I didn't do it, who would?

Unidentified Woman #1: Lips. Lips.

KIRSCHNER: Since then, it's been a decade-long journey trying to answer that question.

Unidentified Woman: Eeee. You do it. Eee...

Prof. GORDON: The typical rules of thumb that parents have been told was if a child didn't speak by age five, it was very unlikely that they were going to speak at all.

Unidentified Woman #1: Do this. Mmmm...

KIRSCHNER: His patron's child was eight when research started. Gordon predicted there might be a five percent chance for some improvement. Under Gordon's direction and the careful watch of the father and mother, therapists tried many approaches like pushing the child's lips together and shaping his mouth to help him form letters.

(Soundbite of a laughing child)

KIRSCHNER: The real opportunity came when Gordon's patron made him this proposition.

Prof. GORDON: If you could design what you would consider to be the perfect program, would you do it? And they basically said money should not be a consideration.

Unidentified Woman #1: With a Unnn. Good.

Prof. GORDON: If you had your druthers, you'd do it for your own children, too. After all, if you had your druthers, you'd hire Aristotle to train your son, Alexander the Great. Bring in the great teachers and have them come to your child.

Unidentified Woman #1: Thanks for telling me you're finished.

KIRSCHNER: Gordon created the dream program for his patrons' son: 50 hours a week with a staff of five top teachers and therapists, including activities like skiing and horseback riding and music. But for much of the day, their focus was speech.

Unidentified Child: (unintelligible)

Unidentified Woman #1: Try again.

Unidentified Child: Candy.

Unidentified Woman #1: That's saying candy.

KIRSCHNER: Therapists spent years helping him say consonants, then consonant and vowel combinations.

Unidentified Woman #1: Thhh.

Unidentified Child: Thh...

KIRSCHNER: Eight years after Gordon began this research, the child said his first recognizable words at the age of 16.

Unidentified Woman: Somebody you live with is?

Unidentified Child: Mom.

Unidentified Woman #1: Mom, thats right. Someone else you live with is?

Unidentified Child: Daddy.

Unidentified Woman #1: Nice, what a guy. Who's the man?

Unidentified Child: Me.

Unidentified Woman #1: You're right.

Prof. GORDON: What happened after then has been amazing to me.

Can you say: I want candy?

Unidentified Child: I want. I want candy.

Prof. GORDON: Now, it's amazing to me if your perspective is a normally speaking child who can speak 130 words a minute and has a vocabulary when they're a teenager of, say, 60,000 words, it might not be that impressive. But he can speak, we think, about 100 words by imitation and can say spontaneously, on his own, about 20 words in a recognizable way.

Unidentified Child: I want music.

Prof. GORDON: Nice job asking for music. You have to turn it...

Unidentified Child: On.

Prof. GORDON: ...on.

KIRSCHNER: Gordon says the scientific literature shows no record of a child with autism who had developed speech at such a late age. But for the patron's family, it took on a whole different meaning.

Prof. GORDON: His grandmother passed away, and he and his father went to the coffin. And the son said, bye. And theyd never imagined he'd be able to do that.

KIRSCHNER: What's happened with Alex while all of this has been going on?

Prof. GORDON: Alex couldn't be in a full-time program. That was far beyond our capabilities. When I tallied up the time and effort, it was not even within reach.

KIRSCHNER: Gordon said the program was so costly, it wasn't even remotely affordable for his own son, Alex. Yet, Gordon and his wife, Renee, had designed a program for Alex that was extraordinary in its own right. Alex went to a school for autistic children at the Kennedy Krieger Institute in Baltimore, and had four part-time therapists at home.

Unidentified Woman #2: Alex, tell me, I dont want that.

Mr. GORDON: (unintelligible)

(Soundbite of beeps)

KIRSCHNER: Alex uses a communication device where he pushes buttons with images and words to communicate his thoughts.

COMPUTER VOICE: I dont want that.

Unidentified Woman #2: Good job, Alex.

KIRSCHNER: But Gordon says he and his wife frequently have dreams where their son can talk, too.

Prof. GORDON: Sometimes we call them nightmares in which something like that happens. They're nightmares because we wake up from them and realize again he's not talking.

COMPUTER VOICE: I need help.

Prof. GORDON: We had internal debate that Ill let my wife describe about what we should be working on with him.

Ms. GORDON: Five minutes.

Mr. GORDON: (unintelligible)

KIRSCHNER: The debate between Barry and Renee Gordon came down to moments like these.

Mr. GORDON: (unintelligible)

Ms. GORDON: Leg off, please.

KIRSCHNER: Renee says Alex still needs help with simple tasks of everyday living; sorting his clothes and dressing himself, even putting on his socks.

Ms. GORDON: Right there.

Ms. GORDON: (unintelligible)

KIRSCHNER: His learning these skills was far more important to her than speech.

Ms. GORDON: He doesn't understand concepts of happy, sad, pain. And that's when I think that the communication is most important. And because I don't believe that even if you do get them to speak, you can have a meaningful system of communication, I've just taken what I consider to be a pragmatic approach.

Prof. GORDON: Very good.

KIRSCHNER: Going out for dinner is part of developing Alex's life skills: To wait for a table and order a meal.

Ms. GORDON: Do you want to eat a hotdog?

Mr. GORDON: (unintelligible)

KIRSCHNER: We're at a T.G.I. Friday's not far from their home, where Alex and Barry and Renee have been many times. But something tonight is bothering Alex.

Ms. GORDON: Everything is okay.

KIRSCHNER: Perhaps it's the baby across the room thats crying.

(Soundbite of a crying infant)

KIRSCHNER: Perhaps it's a new person, like me at the table.

Ms. GORDON: Can you give me your hand?

(Soundbite of sobbing)

Ms. GORDON: Everything is okay.

Prof. GORDON: This is one reason communication is important. If we could only figure out what it is.

(Soundbite of sobbing)

Prof. GORDON: Yes, nothing bad.

KIRSCHNER: Meantime, there is certainly no guarantee that Gordon's patrons son would have the words either for moments like these. Gordon makes it clear that his patron's child communicates with very limited speech, not language and complex ideas.

(Soundbite of sobbing)

KIRSCHNER: Does it ever seem unfair that it wasnt your son who was the first one to have the words?

Dr. GORDON: Well, you know, just thinking about it, I feel a little tearful about it. But, you know, there has to be somebody who's first. And actually, in medical research, often you don't want to be the very first...

(Soundbite of laughter)

Dr. GORDON: ...you want to be like the 10th in line. But, you know, this young man, his family, and all that we've been able to accomplish, I think serve as kind of a beacon out there that it can happen.

Say video.

Mr. GORDON: Video.

KIRCHNER: But if the costs were prohibitively expensive for Gordon himself, how could it ever be affordable for anyone else?

Dr. GORDON: The first doses of penicillin were beyond expensive. In fact, they were hardly available, so that when the first doses were used up, there was no more. So you might imagine their cost was infinite at that point. We now know penicillin is pennies. Progress of science and technology and of management can make things more efficient. What we need to know is that it's possible for them to be achieved at all. Once you know that it's possible, then you can work on making it better.

(Soundbite of music)

Dr. GORDON: I just gave Alex a new keyboard he's playing with.

KIRCHNER: It's now been four years since these recordings were made and Gordon's son, Alex, is now 18. He is playing music, has learned to dress himself with some help and has been to a sleepaway camp. The patron's son is now 22 and is still in Barry Gordon's full-time program, which has grown to a staff of 10. He is now able to speak more words up to seven in a row.

Gordon recently presented his findings to a panel on non-verbal children at the National Institutes of Health. His next task is to apply this research to other subjects.

Dr. GORDON: In science, one case may be suggestive, but it's very far from proof. An ultimate goal would be to try to take it to a group of individuals where it could be better controlled and better implemented, to actually test it to see whether it truly is efficacious and it's not just a lucky combination of circumstances.

Oh, yes, tomorrow is the state fair. We're going to see the piggies and the sheepies and the horses.

KIRCHNER: And finally, as a father and a scientist, Barry Gordon says he still hasn't given up hope that his own son might have speech someday, too.

Dr. GORDON: Can you show me? I want to go.

Mr. GORDON: I want to go.

Dr. GORDON: Hmm. Yeah, there's no fair on here. Yeah. Okay, have to work on that.

(Soundbite of music)

KELLY: Mary Beth Kirchner is an independent producer in Los Angeles. Our story was produced with help from American RadioWorks.

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