Oscar Nominee: Documentary or Fiction?

Cameraman Gary Griffin, right, trains his lens on Sue Rubin as she visits the racetrack in the Oscar-nominated film "Autism Is a World." (Courtesy Of State Of The Art)

The Open-Minded, the Holdouts

How then to account for Margaret Bauman, a pediatric neurologist at Harvard Medical School and Massachusetts General Hospital, who appeared with Rubin in the film? Asked about Rubin's writing, she replied, "I'm certainly convinced that what I've seen her do in front of me was her independent work. Her mom sits next to her. Sometimes Mom says, 'I don't understand that, do it over again.' It's painstakingly slow." But it's her own, Bauman said.

Bauman, who runs a large clinic for autism and related disorders, said that to her mind, facilitated communication "was oversold in the beginning," and then rejected too thoroughly: "The baby was thrown out with the bath water."

What Bauman said convinced her that the pendulum had swung too far was her investigation of a 13-year-old boy with profound autism, severe mental retardation and a seizure disorder who was said to be communicating through a facilitator. The boy was rocking and making no eye contact, until he was put in front of a computer, she said. Then, "the child's whole behavior changed. He came alive in front of that computer." She and other researchers found that, if they read a story to the boy while his facilitator was out of the room, the boy could answer questions about the story through facilitated typing -- questions to which his facilitator couldn't possibly know the answers.

When her report was published in the journal Mental Retardation in August 1996, Bauman said her colleagues gave her grief. FC had already been "disproved."

But "disproved" from an empirical stand point doesn't necessarily mean "never works," some researchers note. For example, a 2001 article in the Journal of Autism and Developmental Disorders reviewed various studies on FC since 1995. In controlled studies (where the facilitator didn't know the answer the subject was supposed to type), there were 62 results refuting FC. But there were also 10 results supporting it -- although the author, Mark Mostert, challenged their validity.

But some persist in trying to "prove" FC. When they've "invested so much emotionally, and even financially, in a very public way, they find it hard to back off," said San Diego State's Green.

Fifty studies have shown you cannot spot the facilitator's influence on what's being typed, said Green, the former president of the Association for Behavior Analysis, a professional group for a type of psychology.

"Very subtle influence can affect people's behavior. It doesn't even have to be touch. It can be the slightest sound, the slightest visual cue," said Green. "You can edit videotape and show whatever you want. They'll show you a close-up of the finger moving across the keyboard . . . but you're not getting what else is going on."

Religion and Politics

Volkmar, who said he personally has never seen a case of validated FC, compares the movement to a religion: "With facilitated communication, people believe in it. They believe it's a way through to their child."

But it's also a political issue. One advocacy campaign, called "Breaking the Barriers," argues for the "right to communicate." Its core value, according to its Web site, is the "presumption of competence" -- meaning its members believe "all people can be competent communicators." Sue Rubin and her mother are shown on the Web site as founding members.

Early intervention programs have helped change the perception of people with autism: Fewer (an estimated 50 to 60 percent) are thought to have IQs below 70, said Volkmar, compared to 75 percent a decade ago. At the same time, "to pretend that someone doesn't have a disability is a disservice," Volkmar said. University of Kansas autism researcher Brenda Smith Myles, who says she has seen only "a couple" cases of validated FC in her career, echoes his concerns: "One of my great fears is that [with FC] the person doesn't know what they're typing. Then they're missing out on appropriate interventions" and skills training.

"I understand why people would say, 'Let's not get people's hopes up unrealistically,' " said Biklen. "But the greatest danger in education is to stop looking for that different person inside. Look at Helen Keller. The work for the educator is to go in the direction of presuming competence, and then finding the right tool."•

Lisa Barrett Mann last wrote for the Health section about new Medicare health screening benefits.