When a parent receives a diagnosis that his or her child has a condition with no known cure or treatment, it may be hard to know where to turn -- even if the parent is a professional with the expertise to take matters into his own hands.
Dr. Barry Gordon, a neurologist and an experimental psychologist at Johns Hopkins University in Baltimore, faced the challenge of both treating and studying his son’s condition. And in doing so, he pushed the limits of scientific research -- and parental devotion.
Non-Verbal Autism
At 3 p.m. on an afternoon 4 years ago, a mini-yellow school bus stops at the home of Barry and Renee Gordon in suburban Baltimore.
Their son Alex arrives, and his babysitter Celinda waits for him at the curb.
“How was school?” Celinda asks. “Did you have a good day?”
Alex doesn’t reply. He’s severely autistic and has never spoken a word. But the sound of his voice carries up to the birds and the trees while he runs and stops up the long driveway, his backpack dragging behind him.
Alex, 14, had just returned from a full day at his special needs school. His late afternoon routine began with a kiss for his mom, Renee.
“Oh, thank you -- did you have a good day at school?” she asks. Alex has a quick snack in front of the TV, and then more therapy at home.
“There’s a variety of tasks to try to help expand his cognitive skills,” Gordon says. 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.
“Can I get a kiss?” he asks Alex. “See, he gives me his forehead. That’s his kiss.”
A Fateful Meeting With A Donor
Alex was diagnosed as autistic at the age of 4.
“He couldn’t do anything a normal child did,” Gordon says. “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.”
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.
“And so I wrote up a grant proposal to look at speech perception,” he says. “I tried peddling it to private sources and talked myself hoarse and never got anywhere.”
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.
Gordon says the dinner companion said: “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?”
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?
“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. If I didn’t do it, who would?” Gordon says.
Since then it’s been a decade-long journey trying to answer that question.
“The typical rules of thumb that parents had been told was -- if a child didn’t speak by age 5, it was very unlikely they were ever going to speak at all,” Gordon says.
The Perfect Program
The patron and his wife have asked to remain anonymous since the early days of funding Gordon’s research. When the research started, the patrons’ child was 8 years old. At the time, Gordon predicted there might be a 5 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.
The real opportunity came when Gordon’s patron made him this proposition.
“‘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,” Gordon says. “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.”
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.
Therapists spent years helping him say consonants -- then consonant and vowel combinations.
Eight years after Gordon began this research, the child said his first recognizable words at the age of 16: “mom” and “daddy” and “me.”
“What happened after then has been amazing to me,” Gordon says. “If your perspective is a normally speaking child who can speak 130 words a minute and has a vocabulary as 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.”
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.
“His grandmother passed away, and he and his father went to the coffin, and the son said ‘Bye,’” Gordon says. “And they had never imagined he’d be able to do that.”
Program Too Costly For Alex
So what’s happened with Alex while all of this has been going on?
“Alex couldn’t be in a full-time program,” Gordon says. “That was far beyond our capabilities. When I tallied up the time and effort, it was not even within reach.”
Gordon said the program was so costly -- it wasn’t even remotely affordable for his own son, Alex. Yet Gordon and 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.
Alex uses a communication device where he pushes buttons with images and words to communicate his thoughts.
But Gordon says he and his wife frequently have dreams where their son can talk, too.
“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,” Gordon says. “We had an internal debate ... about what we should be working on with him.”
Renee says Alex still needs help with simple tasks of everyday living -- sorting his clothes and dressing himself, even putting on his socks. His learning these skills was far more important to her than speech.
“He doesn’t understand concepts of happy, sad, pain -- and that’s when I think the communication is most important,” she says. “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.”
Going out for dinner is part of developing Alex’s life skills: to wait for a table and order a meal. At a T.G.I. Friday’s near their home, where Alex, Barry and Renee have been many times, something bothers Alex. Perhaps it’s the baby across the room that’s crying -- perhaps it’s a new person at the table.
“Can you give me your hand? Everything is OK,” Renee says as Alex whines.
“This is one reason communication is important,” Gordon says. “If we could only figure out what it is.”
In the meantime -- there’s 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.
Gordon admits he’s “a little tearful” about the idea that it wasn’t his son who was the first who had words.
“But, you know, there has to be somebody who’s first,” he says. “And actually, in medical research, often you don’t want to be the first, you want to be the 10th in line. But you know, this young man, his family, and all we’ve been able to accomplish, I think serves as a kind of a beacon out there: That it can happen.”
But if the costs were prohibitively expensive for Gordon himself, how could it ever be affordable for anyone else?
“The first doses of penicillin were beyond expensive,” Gordon says. “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.”
Hope Stays Alive
It’s now been four years since the recordings were made. Alex is 18. He plays music, has learned to dress himself with some help and has been to a sleep-away camp.
The patrons’ son is now 22 and is still in 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.
“In science, one case may be suggestive, but it’s very far from proof. An ultimate goal would be to take it to a group of individuals where it could be better controlled and better implemented to actually test it to see if it’s truly efficacious and not just a lucky combination of circumstances,” he says.
And finally -- as a father and a scientist, Gordon says he still hasn’t given up hope that his own son might talk some day too.
Produced in association with American RadioWorks with support from the Dana Alliance for Brain Initiatives.
Copyright 2010 National Public Radio. To see more, visit http://www.npr.org/.
