“My concern is that it’s being applied in ways that are detrimental to innocent people,’' he said.
The tall, lanky 17-year-old burst into Julie R. Hunt’s office here at a branch of the Grafton School and began to rock back and forth. He put his hand to his mouth and bent over. He seemed to want to talk, but no words came out.
“We’ll talk to you later, Bernard,’' Ms. Hunt, a speech therapist at the school, told the boy. Bernard did not move.
“You have to go now,’' Ms. Hunt said and then, finally, gently led him out of the office, saying, “We’ll come and find you later.’'
The educators and psychologists who have examined Bernard over the dozen or more years he has lived at this private, residential school for severely disabled children have labeled him autistic or at least autistic-like.
Until recently, his only means of communication have been three hand signals. He could make rough approximations of the manual signs for “please,’' “bathroom,’' and “help.’' Psychologists have measured his I.Q. to be less than 25.
Bernard’s seeming reluctance to leave Ms. Hunt’s small closet of an office was understandable, however. It was here, more than a year ago, that Bernard found the voice he never had, first by pointing to pictures and letters on a board and then graduating to a Canon Communicator, a hand-held electronic keyboard that prints his words as he types them.
On the day late last month when Ms. Hunt had to usher him from her office, Bernard returned later to type a surprisingly long, unsolicited message for a visitor: “MY NAME IMS DBERNARD HOPE I CBAN BE NOF SERVICE.’'
Debate Over Technique
Bernard “talks’’ through a method known as facilitated communication. Through that technique, a facilitator provides physical support to a child’s hand, arm, or elbow as he types or points to letters. In Bernard’s case, Ms. Hunt puts her index finger underneath Bernard’s wrist as he haltingly bangs out the letters on the keyboard. Proponents of the technique theorize that the physical contact may provide the control the child lacks to choose the correct keys.
Used in a growing number of public-school special-education programs and in private schools like Grafton, facilitated communication is attracting much attention--and controversy--among those who work with autistic people. Critics liken it to a Ouija-board game, suggesting that the facilitators may be guiding the hands of their pupils. Proponents say facilitated communication could be the key to unlocking the silent, inner world of autism.
And, while there have been a number of studies describing dozens of cases in which facilitated communication seems to have been successful, none has proved conclusively that it does work, researchers say.
Amid all the uncertainty over the method, one point is clear: If facilitated communication does work, it could turn upside down many previously held assumptions about autism.
Challenging Expectations
Thought to have biological or genetic origins, autism occurs in 4 to 15 of every 10,000 births. The disorder is characterized by, among other traits, a seeming inability to feel love or form social attachments, a lack of self-awareness, uncontrollable physical movements in some cases, and difficulty understanding speech or communicating.
Not all autistic individuals, like Bernard, are nonverbal. Some may babble unintelligibly or parrot phrases they have heard. For example, Raymond, the “high functioning’’ autistic man portrayed by Dustin Hoffman in the movie “Rainman,’' often repeated phrases and recited Abbott and Costello comedy routines when he became agitated.
Approximately 70 percent of autistic individuals are thought to have mental retardation.
“These are kids no one thought they were going to have to teach anything other than to tie their shoes,’' said Mary Brooke, a Fairfax, Va., mother whose 12-year-old son has been using facilitated communication for a year.
Contrary to such expectations, proponents of facilitated communication say they are finding that many autistic children are indeed capable of doing academic work when given the means to communicate.
Ms. Brooke’s son, Rusty, for example, was able to name the capitals of all 50 states shortly after he began to experience some success with facilitated communication. Kenny, Bernard’s 16-year-old roommate at the Grafton School, displayed to his speech therapist an unexpected capacity for quickly multiplying numbers in his head. And reading has been reintroduced in Bernard’s individualized education program.
“EVERYOONE TSREATECD LIKE IVDJ DIDN’T NO MUCH CAUSE I DIDN’T TALK,’' Bernard typed last month in response to questions from an interviewer. “I HAD RHEK [undecipherable] GOUT SO COSTOMN [accustomed] TNO TO CIT I MADE MTYSELF SNTOP TRIING.’'
“My hunch,’' said Douglas Biklen, a Syracuse University special-education professor and the director of the university’s division of special education and rehabilitation, “is that the vast majority of people with autism will be able to do academic work that approximates what their nondisabled peers can do.’'
“This really is a major departure from prior theories about autism,’' he said.
‘A Good Salesman’
Although forms of facilitated communication have been used to a limited degree in this country since the early 1960’s, Mr. Biklen is credited with having reintroduced the method here and with fostering its widespread use now.
“Doug Biklen is a good salesman,’' said Bernard Rimland, the director of the Autism Research Institute, who said he has been trying to persuade others to use the technique, under a different name, for years. Contrary to Mr. Biklen, however, he estimates the method will work for only 10 percent to 15 percent of autistic individuals.
Mr. Biklen was introduced to facilitated communication in 1989 by Rosemary Crossley, an Australian researcher who had been using it for years with individuals who had cerebral palsy and was just beginning to use it with those who were autistic.
Skeptical at first, Mr. Biklen said he eventually became convinced of the technique’s efficacy after observing Ms. Crossley’s work. He has since written or co-authored several studies describing the effectiveness of the method with 43 autistic children in this country. All but one, he said, eventually began typing entire sentences through facilitated communication.
Mr. Biklen or members of his staff at Syracuse have also held numerous workshops on the technique, training more than 1,500 people over the past two years to be facilitators.
Convincing ‘Myself’
Ms. Hunt, Bernard’s teacher, was introduced to the technique though one such workshop in 1990.
“I went in with a very skeptical attitude, thinking the grass is always browner at Grafton,’' Ms. Hunt said. “These kids are here because they’ve tried regular public schools in special-education placements and haven’t succeeded, or because at home they would be so aggressive parents were afraid for other siblings.’'
When she returned from the workshop, she began experimenting modestly with the technique. First, she asked her students to point to a bird, a ball, or a mouse, for example, on a picture board. She gradually moved them to a letter board and, months later, introduced the Canon Communicator that Bernard now uses.
“There were times when we would stay on the pictures for a long time because I had to convince myself,’' she said.
When she began to feel the students pressing toward the letters and pictures, Ms. Hunt said, she became convinced.
“Once you feel them making the movement, there’s no need to guide them,’' she said.
Ms. Hunt said her students also began to relate incidents of which she had no knowledge.
Bernard, for example, told Ms. Hunt one day that he had been swimming over the weekend.
She asked him if he had gone to the town pool and he indicated that he had not.
“‘Did you use the kiddie pool or get a new one?’'' Ms. Hunt said she had continued. He typed, “new one.’'
“I thought, ‘Yeah, right,’'' she said. Ms. Hunt said she later learned that staff members at Bernard’s group home had procured an empty hot tub over the weekend and had allowed Bernard and his housemates to splash in it.
Like many other autistic individuals successfully using facilitated communication, Bernard communicated to an interviewer that he had taught himself to read and spell. Ms. Hunt said, however, that such instruction is part of the academic program for many of the young children at Bernard’s Grafton campus, known more formally as the James R. Wilkins Child Development Center.
Mr. Biklen maintains, however, that it is “not unheard of’’ for children as young as age 5 to type using facilitated communication.
“Even very young children have been observed to be ‘preoccupied with alphabet blocks, frequently looking at books, and in one instance taking books rather than soft toys to bed,’'' Mr. Biklen wrote in a recent journal article, quoting a 1984 study on autism.
Depending on Touch
Bernard is also typical of others using the technique in that he is able to type with some facilitators and not with others. Bernard’s academic teacher, Charles Longwell, said, for example, he has had only “limited success’’ typing with Bernard. After eight months of trying, he abandoned the approach and returned to more traditional teaching methods with all four of his students.
No one knows why such children are unable to work with every facilitator, Ms. Hunt said.
Mr. Biklen and others theorize that the reason may be related to the degree of trust the autistic individual feels for the facilitator. In his studies, Mr. Biklen describes how children tell their facilitators that another individual “doesn’t believe I can type,’' or “doesn’t know how to do it.’'
The dependence of some of these children on their facilitators is a major drawback to the method, both supporters and critics said.
As Ms. Hunt noted, referring to Bernard, “What am I going to do--follow him around for the rest of his life?’'
For that reason, many facilitators try to “fade’’ their touch on students. They may begin by placing their hand over the student’s hand and isolating the index finger, then gradually move to the elbow and then to the shoulder. In Australia, where the method has been in use much longer, Mr. Biklen said some students are now typing independently.
The dependence issue also poses a potential source of conflict for schools, said Douglas Huff, a Fairfax, Va., lawyer with an interest in the field.
“There becomes significantly less of an argument these children should not be included in regular classrooms,’' Mr. Huff said. “And there are tremendous financial ramifications for schools.’'
Mr. Huff predicted some school administrators could balk at the cost of providing a facilitator to follow students from class to class.
Under federal special-education law, he continued, schools may also be required to use facilitated communication in administering diagnostic tests to those students.
“The federal statute contemplates testing children in their native language or mode of communication,’' he explained. To decline to use facilitated communication with students for whom it works, he said, would be “not unlike taking a normal child and putting a gag over his mouth and handcuffing his hands behind him.’'
‘Ouija Board’ Effect
The most freqeuent criticism of the method, however, stems from the lack of controlled experimental studies on its effectiveness. Without such studies, critics assert, it is impossible to tell whether the facilitator may be consciously or unconsciously influencing a student’s hand movements.
“When I was a kid, I had a Ouija board and I was pretty impressed with it until I realized it was misspelling the same words I did,’' said James A. Mulick, an Ohio pediatric psychologist who has written on facilitated communication.
“We should be skeptical of any training approach, especially an unconventional one, that discourages serious evaluation and study,’' Mr. Mulick writes in an article with John W. Jacobson in the current issue of the journal Psychology in Mental Retardation and Developmental Disabilities.
Although he has published several descriptive studies on the subject, Mr. Biklen has declined to involve his subjects in any experiments.
“A crucial element of this work is the confidence of the individual,’' he said. “If we had clinical trials that could maintain that confidence, it wouldn’t be so problematic.’'
Clinical experiments have been conducted, however, in Australia. While those 1989 studies offered mixed results, some researchers are now reinterpreting the data in a harsher light.
Writing in the summer 1992 issue of the Harvard Educational Review, the Australian researchers, Robert A. Cummins and Margot P. Prior, assert: “It is evident that some assistants, through the use either of tactile/visual cues or through the actual imposition of movement, manipulate their clients’ responses.’' In a published response to that review, Mr. Biklen points out what he considers to be some flaws in their argument.
The issue of validation is taking on great importance, Mr. Rimland of the Autism Research Institute pointed out, because a number of autistic children, through facilitated communication, have begun to make allegations of sexual or physical abuse.
“My concern is that it’s being applied in ways that are detrimental to innocent people,’' he said.
Not a ‘Cure’
Even if facilitated communication is shown conclusively to work, it will not “cure’’ autism, Mr. Rimland and others have pointed out. Although they may be able to express their wants and needs through facilitated communication, some students with the disorder may still be unable to control some of their aggressive behaviors.
What many such students are indicating through their facilitators, however, is that, contrary to all expectations about the disorder, they want to be with people. According to Mr. Biklen, a longtime proponent of teaching disabled students in regular classrooms, autistic students have indicated through facilitators that they want to go to school with nonhandicapped classmates, to live independently, and to take part in mainstream activities.
When Bernard turns 21 and must leave Grafton, he typed during an interview, his plans are to “MKEEP LIGFE INTERDESTINFG HAVE FAMIMK GET MARRDIDED.’'
Ms. Hunt asked him if he had anything else he wanted to say. Bernard typed: “TTO FAR OUT MARRAGE?’'
