A Controversial Technique May Be the Key to Providing Sufferers With a Way to Communicate : Unlocking Autism
At 13, Susie Rubin spoke mostly nonsense words and often repeated herself.
She seldom made eye contact and showed little interest in making friends. Tests identified her as autistic and placed her mental age at 2, her IQ at 30.
A year later, Susie scores 100 to 130 on IQ tests. Along with special-education classes, the ninth-grader is taking honors English and mainstream algebra and freshman studies at Whittier High. She also plans to attend college.
Although still autistic, she is able to express thoughts like these:
“I am upset about Shirley (a family friend) dying. . . . Why do some people who are mean live a long time and others who are good like Shirley die young? . . . I don’t believe in God anymore.”
Her parents say the difference in Susie’s life is a controversial technique called “facilitated communication,” in which she types out sentences on a computer keyboard with the help of her mother or another facilitator.
Facilitation has helped at least several thousand people since it was brought to America three years ago, proponents say.
However, many researchers and public school educators are skeptical of facilitation. They worry that the facilitator, not the patient, is controlling communication. More research is needed, they say. Despite their concerns, many won’t rule out facilitation, especially if family members believe the process works where traditional approaches have failed.
The fact that such a relatively mysterious treatment is embraced by some--and not condemned even by critics--speaks to the mysteries of autism and to the frustration of patients and their families.
Autism is a neuro-physiological condition of unknown origin that can cause communication, behavior and sensory problems.
The most successful treatment has been behavior modification, says Bernard Rimland, founder of the Autism Society of America for parents and professionals.
Other methods of treatment include speech training and vitamin supplements to improve behavior.
None of these treatments has been 100% successful. As an alternative, Australian educator Rosemary Crossley developed facilitation in the 1970s, triggering the debate.
One believer is Susie’s mother, Rita Rubin. Through facilitation, she says, she found inside her daughter “this complete human being that’s so different from what we see on the outside. . . . We found out how bright she was and that she was a real person, and she has very strong opinions.”
Douglas Biklen, a special education professor at Syracuse University, brought facilitated communication to America. He thinks it could help a large percentage of the 250,000 autistic people here.
Biklen learned about facilitation from Crossley. Impressed by its potential, he has trained about 2,000 facilitators.
Facilitators learn techniques to help the client who can’t isolate an index finger when typing, for example, or who veers to the side instead of keeping the wrist straight. Physical support appears to give people confidence, a key ingredient in the method, Biklen says.
Facilitated conversation uses questions and answers, and the strongest evidence that it works, Biklen says, is that autistic people often present verified information a facilitator couldn’t know.
Another indication is that people using the same facilitator exhibit different personalities. Many patients, particularly young people, also develop unique spellings. However, most university researchers and many public school educators are skeptical, says Tris Smith, assistant director of the Young Autism Project at UCLA.
“The worry is that the facilitator is the one doing the talking,” says Smith, a research psychologist. The aide may guide a student to hit specific keys or state questions so the child gives the answer the aide wants, he says.
Studies are needed, particularly some in which the facilitator can’t see or hear what the autistic person is asked, Smith says.
Although skeptical, Smith allows clients to try it. “We have no proof that it doesn’t work,” he says. “If a child has not acquired much language from a program they’ve been in, that would be one reason to try it. The other reason would be that if the results they’re getting (with facilitated communication) are true, they’re getting them much easier than we are.”
Rimland, founder of the Autism Society of America, says he’s a longtime advocate of facilitation. But the San Diego researcher believes that the success rate is far below the 100% claimed by some.
He also cautions that the technique has generated many false accusations by autistic patients who have typed out claims of physical or sexual abuse, mostly against parents.
“When a facilitator believes that the only reason the child is not communicating is the facilitator’s ineptness, that places a great deal of strain on the facilitator to produce something, and I think that is one reason these very damaging allegations have been made,” Rimland says.
“In almost every instance of this sort, when charges have come to court and been investigated, courts have decided that they were untrue.”
A new study at a developmental center in Schenectady, N.Y., also raises questions about the process. Twelve autistic typists looked at pictures and could not describe them accurately while being facilitated “in the absence of a picture shown to the facilitator.”
When the facilitator saw a picture at the same time, “the performance of 10 of 12 participants improved.” Facilitators unknowingly influenced the process and determined what was typed, the report states.
Biklen says that because of such questions, “you’ll see a really active controversy over facilitated communication for several years as the field learns about it through research.”
Rita Rubin, a businesswoman, and her husband, Bob, a mathematician, saw the technique demonstrated in 1991. When they tried it with Susie, it changed their expectations for her life: “Is she going to be able to go to college? What is her high school program going to be like to get her ready? . . . Will the school be able to provide it?”
It also changed their perceptions of Susie.
“It’s been such a shock,” Rita says. “I didn’t sleep nights for a long time. Of course you go back and think about what you could have done and should have done, but you can’t undo what’s been done.
“It’s also difficult because she’s still autistic. . . . You still have to use behavioral modification.”
Susie watches water drip out of faucets for hours, tries to unscrew switches from lamps and regularly drops things from the refrigerator. Rita washes her kitchen floor daily.
Susie has told her mother that she can’t stop doing things she knows make others uncomfortable.
“It’s real bizarre,” Rita says. “You’re dealing with somebody whose IQ is probably higher than mine, and yet she’s still dependent in other areas. . . . She still doesn’t dress herself. She still doesn’t brush her teeth.”
The Rubins and their son, Gary, 16, began asking Susie questions on the computer last October. Susie typed the first letters of the answers. By late November, she was typing words. In March, she began responding in paragraphs and having conversations.
“When she was able to give us some letters, (we realized) she clearly knew the alphabet,” Rita says. “So I called a meeting of her teacher and school administrators. I wanted them to teach her how to read.
“The communications specialist called me (back). She said, ‘Forget about teaching Susie how to read. I just asked her “What do you do with your family?” She spelled vacation .’ ”
Susie, who speaks little and communicates primarily through typing, later told her mother she learned to read seeing words in school at age 5. (Susie types at home with her mother and father and at school with trained teachers, staff members and students.)
Another shock came in early February. A school specialist was teaching Susie to use a calculator. She asked if Susie could do multiplication in her head.
“Susie said yes,” Rita Rubin says. “She asked Susie some problems. Two plus 4 equals 6. Seven times 5 equals 35. She knew the answers. She said she had learned when her brother learned it years ago.”
In a conversation a few months later, Susie said her life had improved since she began facilitation:
“Mom and I are more like friends now. She tells me things about relatives she never did before. She treats me . . . like an adult. I love our new relationship.
“The relationship with my Dad is different. He gets angry with me when I get upset. He gets mad when I do dumb things. I think he does this because he wants me to get less autistic. I just wish he would be more patient.
“My relationship with my brother has changed too. He likes me more than before. We fool around a lot now. I think he is proud of me.”
Later on, Susie told her mother she wanted to marry. She thought her husband would be autistic and would also communicate through typing. She didn’t think they’d have children because autism can be inherited.
In a summer camp application, she laid out other realizations and hopes for the future:
“I am subject to unexpected bursts of energy which I cannot control,” she said. “Also I both say things and do things I don’t mean to.
“Having autism is very frustrating. Nobody who meets me realizes how intelligent I am. . . . Sadly, people are afraid to approach me. This summer when groups of you are standing around deciding whether you should approach me, please do.”