Words with Uncertain Meaning
Alex, 5, cannot say a word and may hardly perceive speech. He is autistic, a condition that in Alex's case involves an array of problems. Rarely does he initiate communication, and then only awkwardly. "He'll take you by the hand and position you in front of the refrigerator to show that he wants milk," says his mother Renée. If he responds to someone else's attempts to communicate, it is only after a great deal of coaxing.
"Can I get a hug? Huh? Can I get a hug?" Barry Gordon asks Alex on a recent weekend morning. Alex is watching Barney in the family's sunlit den. He is jumping and clapping with the music, with his back to his father. Gradually, he jumps backward in time to the music until he gets close enough to allow Gordon to reach out and embrace him in a big bear hug.
The Gordons have tried myriad therapies to help Alex. A few years ago, under the advice of autism experts at Hopkins's Kennedy Krieger Institute, they concluded that their top priority should be working on Alex's communication skills. Using a technique called Lovaas therapy, they started by trying to teach Alex to imitate sounds.
But Alex couldn't imitate them. In fact, he was not even interested in sounds. "In retrospect, it's clear why," says his father. Alex has a condition called cortical deafness. "He can hear sounds, but he doesn't know what they are," explains Gordon. He cannot connect a sound to its meaning. "In some ways, he's comparable to being deaf," Gordon says. (Similar symptoms can occur following a stroke that injures the brain's temporal lobes.) To compound the problem, Alex also has great difficulties manipulating his mouth, which would hinder his ability to articulate words, if he ever showed the inclination to speak.
So the Gordons started looking for alternative means for communication. Alex had always liked tracing the numbers on license plates and enjoyed watching the credits on his videos. Perhaps, his parents thought, they could get through to him through his visual system.
Renée Gordon, who had left her job as an in-house corporate lawyer to devote her attention to teaching Alex, started using pictures. Today, for example, as Alex eats his standard lunch of peanut butter crackers, a felt board with a handful of labeled pictograms lies to his left. Alex's task is to find a pictogram featuring something he wants and give it to his parents. Renée knows that Alex wants milk, and that without the word board, he would pull her to the refrigerator. Reluctantly, after squirming in his chair, Alex finally picks up a card showing the word "milk" under a bottle of milk.
"Oh, you want milk!" Renée exclaims, and gives him a large glassful.
Alex can now identify the written word "milk" as well as its pictorial representation, and 50 to 120 other written words. But Barry Gordon is reluctant to say that this accomplishment demonstrates language. It could be that Alex simply recognizes "milk" as an ideogram, a holistic symbol representing milk, rather than a word composed of letters. "But I don't think that's the case," adds Gordon. "Alex can generalize from handwritten letters to printed letters. So it's conceivable that he is, in fact, decoding something."
Since Alex was diagnosed as having autism, Barry Gordon has focused more of his research on autistic children. Through the National Alliance for Autism Research, for instance, he is helping to organize a workshop on communication and language training in low-functioning autistics, which will be held this spring.
Before he and Renée had Alex, Barry Gordon never dreamed of attempting to study autism. "I thought it was too big a topic to tackle. So irony of ironies," he says, then pauses. "Some other people might think of it as fate, and that it's good Alex was born to a family like ours, with our resources. But the scientist side of me says, this was an accident. I love him regardless. I love him, in some ways, even more."
"I have two standards internally," continues Gordon.
"Realistically, as a medical physician, I tell myself that the
odds are that, of course, he won't talk. The odds are probably
99:1, maybe even 100:1. He doesn't have the mental abilities or
the motor control. However, as a parent, it doesn't matter if
there are 100:1 odds. I'm going to try for it anyway."
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