Volume 19, Number 2, 2005
Facilitated Communication--Its Rise and Fall
In July of 2005, after this editorial was written, Syracuse University announced that Douglas Biklen had been promoted to Dean of the School of Education. Shortly afterward, a statement protesting Biklen's promotion, signed by more than 50 academics from universities in the U.S. and abroad, was issued by the Commission for Scientific Medicine and Mental Health (see text at http://www.csmmh.org/news/fc_statement.htm). To learn more about the background of F/C, see more than 30 ARRI articles in our online archives at www.AutismNewsletter.com.
Can some autistic children who can-not speak communicate meaningfully in writing? I was probably the first person to discuss this question publicly, in my lectures and writings, starting in the early 1970s. I reported that a very small percentage of autistic individuals are able to express their own thoughts in writing, but not speech. I referred to these individuals as "autistic-crypto-savants," crypto meaning the ability was hidden, waiting to be discovered. I discussed and described several such rare individuals whom I had encountered during a period of several decades, and urged that efforts be made to identify and encourage them.
In the mid-1980s I began to hear from colleagues in Australia about Rosemary Crossley, the Director of the DEAL Center in Melbourne, who was using a technique she called "Facilitated Communication" (F/C) to elicit writing, usually very sophisticated, highly literate writing, from severely handicapped non-speaking autistic and mentally retarded clients. It was assumed that these autistic or mentally retarded individuals had very little control of their hand and finger movements, and thus needed the help of trained "facilitators" to support their hands while they used their fingers to spell words, on a keyboard or a letterboard.
Crossley's work was noticed by Douglas Biklen, a professor at Syracuse University in New York, who spent a month at the DEAL Center in 1989, and returned to the U.S. with bombshell news: virtually all autistic and mentally retarded persons were very capable of expressing themselves fluently, usually immediately, if provided with a skilled facilitator. The media were ecstatic. Major magazines and all the television networks featured Douglas Biklen and the miraculous breakthrough he had brought with him from Australia. Many parents were also ecstatic-their beloved non-speaking children were able not only to communicate, but to communicate eloquently. Academia joined the celebration. Conferences held at major universities and elsewhere were attended by standing-room-only crowds.
But things were not very rosy in Australia. The Intellectual Disability Review Panel, which investigated Crossley's methods and claims, was not impressed, noting that intellectually-disabled individuals are "extremely susceptible to influence by people who may be unaware of the extent to which they may be influencing decisions."
I began getting clippings of newspaper articles from Australia saying a number of parents had been charged, by their own children via F/C, with physical and sexual abuse. In one such widely-publicized case, a 29-year-old mentally handicapped woman, Carla, was forcibly removed from her home by the police after she had allegedly accused her parents of sexually abusing her. After more than a year of legal battles, the court awarded the parents full guardianship of Carla, concluding that the allegations made through F/C were untrue. During the trial the facilitator demonstrated to the court how skillfully Carla could answer various questions. She was able to give an anatomically correct description of sexual intercourse, for example. However, when the defense asked Carla "What is the name of your dog?" there was no answer.
There were a number of such alleged abuse cases in Australia, then soon the same phenomenon began to appear in the U.S. Parents, teachers and others were being accused via F/C of sexual and physical abuse.
The courts were confronted with the question: "Is F/C a valid technique? How can we be sure that the communication is coming from the handicapped individual, rather than from the facilitator?"
The controversy over F/C raged on for several years. Numerous experimental studies were undertaken to determine its validity. Many of the studies were undertaken by the facilitators themselves, who wanted to prove, under carefully controlled circumstances, that the messages they believed they were eliciting from their clients were in fact coming from their clients, and not from themselves.
To date approximately 70 such stud-ies have been published, involving some 500 mentally-handicapped individuals. The major outcome of all this research is very clear: it shows overwhelmingly that if the facilitator does not know the answer to a question, the client cannot respond correctly. Further, the more carefully the study was done, the more likely F/C was to be found invalid. The few studies which the authors claimed to support the value of F/C tend to be poorly designed and poorly executed. Even the results that are said by F/C proponents to show that F/C is valid are very weak. (For example, the client might be able to point to the letters C-A-T when shown a picture of a cat. This is a far cry from the ability to "express his own thoughts in his own words," as originally claimed by Crossley and Biklen.)
The consistently negative findings from the research studies, as well as the consistently anti-F/C decisions of the courts, have led most major organizations that advocate for the developmentally disabled to condemn F/C as being an invalid method of communicating. These include the American Academy of Child and Adolescent Psychiatry, the American Academy of Pediatrics, the American Psychological Association, the American Speech and Hearing Association and the American Association on Mental Retardation, for example.
But a few non-speaking autistic persons can write. I am aware of at least three books that were written by autistic individuals who could write but not speak. The autistic author of one of these books learned to write via Facilitated Communication. The other two authors emphatically deny that their writing is the result of their having been exposed to Facilitated Communication.
Howard Shane has been directing a clinic for non-speaking children at the Boston Children's Hospital (Harvard University Medical School) for 25 years. He is considered to be an expert on the use of augmentive means of communication for non-speaking children, including autistic children, having worked with hundreds of autistic children during this time. I asked him how many non-speaking children were able to write meaningfully. He replied that perhaps 3 or 4 of the hundreds of children he had seen, or approximately 1%, could do that. But if the question were very simple, like "What is this?" ("D-O-G") or "What color is this?" ("R-E-D,") the number might be 5% to 10%. However, he said, F/C was quite unnecessary in teaching such children, since if they are interested in words or letters, they tend to learn on their own, or with encouragement from their parents or teachers.
Let us now consider the question: How can you tell if it is your child or the facilitator who is communicating by F/C? Use the method that many courts have used: Send the facilitator to another room so he or she cannot hear what is being said. Select several objects that you can show and describe to the child, for example, a comb, a $5 bill, and perhaps a picture of a horse. Invite the facilitator back into the room and ask him/her "What did we discuss while you were gone?"
Even simpler: The facilitator helps the child name objects on flash cards visible to both of them. Then move the cards to where only the child can see them.
In one case in Massachusetts, a man who had been in jail for 8 months because of allegations made via F/C that he had sexually molested his girlfriend's child was immediately released when the facilitator was totally unable to assist the child in spelling the names of any of the several objects that had been discussed during the facilitator's absence from the room.
The bottom line: Be careful!