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"Helping" Autistic People to Speak

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COURTESY THE RAJAPATIRANA FAMILY

Chandima Rajapatirana uses facilitated communication to speak with his mother, Anoja, who is also one of his facilitators.

Why autistic children struggle to speak is something of a mystery. Many autistic children learn to speak late and only with intensive language therapy. Some never learn. This is not true, however, of those with Asperger's syndrome, a milder form of autism. Children with Asperger's tend to be almost hyperfluent—or as one such child put it to me in an interview, "I talk like a dictionary."

Those with classic autism often talk more like a balky tape recorder. They may be limited to echolalia — repeating words from songs, television and the environment — in meaningless ways, or lapse into making growling incoherent sounds. Chandima Rajapatirana, a 32-year-old autistic man from Potomac, Md., writes about how hard it is for him to coordinate the working parts of his body and brain to produce speech. He and others have expressed the anxiety they feel about trying to speak and failing. Jamie Burke, a 19-year-old high school senior from Syracuse, N.Y., puts it this way: "The fears that live in the silly-sounding voice made me feel like people would laugh at me."

Jamie didnít tell me this in spoken words. I watched him type his answers to my questions using a lightweight keyboard. His mom, Sheree, held the keyboard as Jamie typed one-handed. After he finished each answer, he would read it to me aloud. He speaks clearly with good intonation and has worked hard to achieve this, but he still finds it difficult to speak without typing first.

I met Jamie Burke and Chandima Rajapatirana earlier this year at a Syracuse University training session for people interested in learning facilitated communication. FC is a highly controversial technique for helping people with limited or no speech learn to communicate, generally using a keyboard and the help of a human facilitator for both physical and emotional support. It originated in Australia in the late 1970s and was first used for children with cerebral palsy, among other disorders. Both Burke and Rajapatirana had their moms serving as facilitators in our interviews. When Jamie types one-handed, Sheree Burke holds the keyboard. When he types with two hands on a table, she stands behind him touching the back of his shoulders. Rajapatirana also has his mom lightly touching his shoulders or waist as he types. But many others who rely on FC require a lot more hand-holding. Some are physically supported by their facilitator at the forearm or shoulder; some are held at the wrist.

What's so controversial about FC? A preponderance of studies have found that the ideas being expressed are not those of the person with autism but rather those of the facilitator. In several studies, only a small percentage of FC users were conclusively shown to be expressing independent thoughts. In some studies where the facilitator and FC user were separated, given different sets of information and then asked questions about it, it was facilitator's information that was more often expressed in typing, though the facilitators are often unaware that they are leading, says James Mulick, professor of pediatrics and psychology at Ohio State University and co-author of research debunking FC.

What then to make of what I saw at Syracuse, which has an FC institute? "You are simply being deceived," says Mulick. "But donít feel bad. Even some behavioral scientists have been deceived."

Proponents of FC concede that when FC is done improperly, the facilitator can take over. They also say that people who are severely autistic respond poorly to the lab setting. And they point to examples like Burke and Rajapatirana, who are not held by the hand or wrist — though both did require that degree of support when they began using the technique.

To get more insight into the controversy, I asked one of the FC users at the conference, Tracy Thresher of Vermont, if I might take a stab at facilitating. Thresher agreed, and an experienced facilitator named Harvey Lavoy coached me. I held Thresherís wrist as he typed answers to my questions. I found that I had to constantly pull his hand back away from the keyboard with a steady pressure. At no point did I feel that I was leading him toward the keys, nor did I know the answers to the questions I was asking him. He answered some clearly, and others less coherently.

I can imagine that facilitators with a close, loving relationship to the person using FC might inadvertently lead them by the hand and, in this sense, put words in their mouths. But at Syracuse, I became convinced that at least some FC is for real, and for someone with no other form of communication, it can be life-altering.

Rajapatirana's mother, Anoja, told me that her son suffers from seizures, as do many autistic people. For years, she would crush up his medication and put it in his food, because he couldn't swallow the pills. "One day, he had a headache, and he just swallowed a Tylenol," she recalls. Anoja, amazed, asked him why he had gulped down the Tylenol but had never been able to swallow the seizure medication. He answered, typing, she says, that "he thought that if he didnít take the pills, maybe he would die." The Rajapatiranas shared this thought from Chandima (though to be honest, I didnít witness him typing it): "FC doesnít cure you, but it gives you a reason to live."

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