News - Media
Dec 26, 2004
Nonverbal, autistic children's ability to communicate stuns parents, experts
- Daily Breeze, by Sandy Cohen
Like any inquisitive 9-year-old, Tyler Cain has a lot on his mind.
He's curious about God, interested in politics, loves to swim and likes Tiger Woods.
But until last year, no one knew.
Tyler doesn't talk. At age 3, he was diagnosed with autism, a neurological disorder that inhibits the ability to communicate, respond to surroundings and relate to others. About half of those with autism never speak.
Tyler began therapy the following year but remained trapped inside his own mind and hypersensitive body. Teachers assumed he was retarded. His parents didn't know what to think.
Then came Soma Mukhopadhyay, featured on "60 Minutes" because she'd taught her own severely autistic son to write and communicate through an approach she calls the Rapid Prompting Method. Neuroscientists from the University of California, San Francisco wondered if her method might work with other autistic students.
Tyler's parents, Sharon Krauss and Jacques Cain, wondered, too.
They found Soma, as she prefers to be called, at Carousel School in Los Angeles, which specializes in preparing developmentally disabled students for public education. Tyler met her in 2003.
"It's changed everything," said Krauss, an attorney from Manhattan Beach. "I don't know how long we could have gone on the way we were going."
Now Tyler attends public school with other kids his age. He follows regular classroom lessons and spells out his thoughts by touching letters on a cardboard chart. The Rapid Prompt Method changed his world.
"God has given me Soma," he taps out for a reporter.
Soma's approach evolved out of a deep commitment to teach her son, Tito. Though doctors in their native India said the boy could never learn, she persisted. She taught him numbers and letters. When he wouldn't hold a pencil, she rubber-banded one to his hand. By the time he was 6, he could write independently and begin to express what it's like to be autistic.
"When my son was diagnosed, I had no idea what autism was," said Soma, whose background is in chemistry. "I just compared how my brain worked and tried to find out the exact learning channel that was open. I had no idea that it would work. But I had a vague idea that it should work."
Doctors took notice of Soma's technique in 1999. The following year, the BBC aired a documentary called "Tito's Story" and the National Autistic Society of Britain published his first book, Beyond the Silence: My Life, the World and Autism. An American version, The Mind Tree, was released in 2003, the same year the "60 Minutes" story introduced the Rapid Prompting Method to the United States.
Tyler's parents weren't the only ones moved. After seeing the show, Linda Lange of Austin, Texas, created a nonprofit group, Helping Autism through Learning and Outreach (HALO), dedicated to bringing Soma's method to the masses.
It's a straightforward, low-tech approach that only requires paper, pencil and a presumption of student competence.
Teachers and parents may underestimate the intelligence and abilities of non-verbal children and unintentionally oversimplify things. But Soma assumes her students are bright and capable of learning at their grade level. She ignores the flapping, rocking and other self-stimulatory behaviors autistic children often exhibit. Instead, she speaks to them constantly, providing information and requiring responses at a pace that competes with self-stimulation and thus encourages focus.
Students generally are able to demonstrate their knowledge and capacity to learn from the very first lesson, which fosters their confidence and desire to improve.
"When you get success, you get hungry for more success," Soma said.
She begins by asking them to respond to questions by choosing from two possible answers, which she reads and spells aloud. As students progress, she expands the choices to three or more. Eventually, as they develop focus and gain control over their physical bodies, students learn to point to letters on a paper chart arranged like a typewriter keyboard, spelling out words and phrases and providing parents and teachers with insight into their thoughts.
When Krauss saw her son work with Soma, she was "stunned" -- and moved to tears.
"You know in your heart that your child is intelligent, but nobody believes you," she said.
That letterboard makes communication and academic learning possible for non-verbal students.
"I've never seen it not work," Lange said. "It's individually adapted to each student."
Even verbal students can benefit. Soma seeks the child's open learning channels -- visual, auditory or kinesthetic -- and adjusts her lessons accordingly, sometimes several times during one 30-minute session. She has letterboards in different colors and a table full of books. A typical lesson might include some long division, a discussion of current events and creative writing -- making up stories based on pictures in a children's book.
"Focus," Soma tells her students. "Focus."
Rapid Prompting opened a world of opportunity for Carolyn Doherty and her 12-year-old daughter, Erika.
"Before, our communication was all one-sided," said Doherty, a dentist in Torrance. "Erika's had every kind of therapy you can think of. Of everything we've tried over the last 10 years, this proved to be the biggest breakthrough. Soma was a lifesaver really."
It was the first time Erika could share her thoughts with her mom.
"When a child is non-verbal, you think they're living in a small world, in a box," Doherty said. "It turns out these kids are thinking about politics, national security and what they want to be when they grow up. They're listening to everything you say and picking up on all of it, even though they don't look like they are."
Tyler saw Soma weekly for lessons before she relocated to Austin in November. Krauss sat in every week, watching her son bloom.
"We had no idea he could spell," she said. "I'm surprised by his knowledge of politics. How well he can do academically is a surprise. He continues to surprise me."
Last year, Tyler was a first-grader in a special education class. This year, he's a third-grader in a mainstream class at Meadows School in Manhattan Beach, where he uses the Rapid Prompting Method with therapist Donald Grant.
"I'm like his translator," said Grant, 27, a graduate student in clinical psychology. "I keep him focused and give him a voice. The problem is not comprehension. He's a sharp kid. It's just about finding the mode that pulls the communication out, and the Rapid Prompting Method works for that."
BLENDS IN WITH CLASSMATES
Classmates aren't shy to include Tyler in games on the playground.
"The hardest thing for him is trying to talk like other people," explained 8-year-old Megan Kim. "He's just like every other kid, but he has a different way of doing stuff."
The letter board is Tyler's constant companion. He uses it in class and while doing homework with his mom. Even his brother and sister, 5-year-old twins, bring the board to him when it's time to play. The only problem is that they can't yet read.
Krauss couldn't wait to learn her son's thoughts. She wondered about his favorite sport, his favorite color and what he wants to be when he grows up.
"I envision sitting and talking with him for hours," she said. "But about 20 minutes is all he'll do."
Even though Tyler knows he's autistic and wishes for speech, the disorder prevents him from initiating contact or having long conversations. Doherty experiences the same challenges with her daughter.
"Erika can sit still for hours," she said. "But it's processing what they're thinking through their minds and getting it down through their head, through their arm and onto the (letter) board without distraction. Soma has a knack for finding their rhythm."
Lange and the HALO group are organizing workshops nationwide to educate parents, therapists and teachers in Soma's Rapid Prompting Method. Instructional manuals and videos also are in the works. Meanwhile, Soma continues to teach hundreds of students a month, who come from all over the country to meet her.
"What a gift it is that she's come along," Lange said. "She could have just stopped with Tito and rested her laurels on that, but she works with extremely difficult kids, kids who are so severe that no one else will teach them."
Soma said her goal is to change perceptions about autism.
"I want, at least, autistic children to be respected in society," she said. "When they are small, they are cute. But when they are older and not so cute, the therapist starts giving up. But if I can learn at the age of 42, anyone can learn at any age."
Tyler learned to communicate at age 8. He tells Soma he wants to become a senator to help improve people's understanding of autism. Having the Daily Breeze write a story about him is a step in the right direction.
"You can't run a campaign without press," he points out.
When asked if there's a message he'd like to share with readers, he quickly taps out, "Believe in us."