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                                                                                                Sue Rubin

                                                                                                January Session, 1998

                                                                                               

 

Facilitated Communication

 

            Facilitated Communication is a technique in which physical, communication, and emotional support are provided by a facilitator to a person who does not have a communication system that allows him to express what he wants to say. The physical support can range from helping the person isolate his finger so he can point, if he can’t already do this, to support at the wrist, arm, shoulder, head, back, or eventually to no physical support at all.  The facilitator provides resistance and rhythm.

             Communication support depends on the needs of the user.  Some people need to have questions written for them.  Others need to have questions posed in a certain way; while others may require the facilitator to hold the communication device in a certain way.  Some FC users need help in focusing on the task, reducing echolalia (repetitive speech) or other behaviors that interfere with concentration.  Some also require the facilitator to say the letter or word that has been typed, or might need to see the output as it is produced.

 Emotional support is difficult to define, but very important.  The user and facilitator must feel comfortable and trust each other.  The FC user must be seen as a competent person who could communicate if the facilitator could determine what kind of support he needs.  All of these three aspects must be present when a person begins Facilitated Communication, but they vary with how much of each one is necessary for a particular person.  Over time, it appears that physical support is the first that can be done away with, then communication support, with emotional support the hardest to do without.

 

            Although Facilitated Communication is thought to be new, it began in the 1960’s.  Over the years several different people independently “discovered” the same approach.   In 1961 Rosalind Oppenheim described hand-over-hand facilitation she used with her son, in a Saturday Evening Post article. In this type of Facilitated Communication a disabled person and a facilitator both hold the pencil but the disabled person moves it, or if the disabled person can hold the pencil, the facilitator has his hand on the disabled person’s wrist, arm, or shoulder.  In 1974 she again described it in her book, Teaching Methods for Autistic Children.   In 1975 Margaret Eastham started using it with her son David.  In her book Silent Words, she says that Lorna Wing, an Occupational Therapist in England, described this tactile approach in 1970 (35).  In 1977, Rosemary Crossley, a teacher at St. Nicholas Hospital in Melbourne, Australia started using Facilitated Communication with Anne McDonald, a teenager with severe cerebral palsy who could not communicate, and was so disabled she couldn’t eat and was near death.   In the 1980’s Carol Berger, a speech therapist in Oregon also independently discovered it and Arthur Shawlow, a parent and physicist, and his wife Aurelia, learned about it in Sweden when he went there to collect his Nobel Prize in 1981.  In 1985 Rosemary Crossley tried using the technique with people with autism.

  In all of the cases above the disabled people were previously thought to be retarded.  No one paid attention to them because they were dismissed as unique aberrations.  It was not until Doug Biklen from Syracuse University visited Melbourne and saw first hand what Rosemary Crossley was doing that real change began.  Biklen was amazed at what he saw and arranged to come back for a month to try to figure out what was going on (Biklen, January 12, 1998).  He met with each of the people Crossley had been working with, observed a number of getting-started sessions and met with people who had been using the method for several years.   When he returned, he wrote “Communication Unbound: Autism and Praxis” in Harvard Educational Review.  Diane Sawyer did a T.V. program on Primetime and magically FC exploded. 

At about the same time, Rosemary Crossley heard that Anne Donnellan, a well respected expert on autism from the University of Wisconsin, was going to be in Australia on other business and asked to meet with her.  Biklen assured Donnellan that Crossley wasn’t crazy, so they met and Donnellan invited Crossley to Madison in December 1990 (Donnellan, Savin, & Majure).  Donnellan was amazed that people with autism were willing to work for one and three quarters of an hour.  She knew something was wrong with her story of autism.  Her response was, “O my god, what have we done.” (Donnellan, January 27, 1998).  Donnellan and Martha Leary, a communication therapist, became convinced that a lot of what looked like mental retardation was actually due to movement disturbances (Donnellan and Leary, vii).  Donnellan trained some graduate students in Facilitated Communication and it was one of them that introduced FC to California. 

 

            Because of Biklen’s article and Primetime many people began using FC.  Some were placed in regular (non-special education) classes and older people were finally able to make life decisions.  Then in October 1993 “Prisoners of Silence” was shown on Frontline on public television around the country.  The program was extremely biased and FC came to a screeching halt.  All the evidence that FC users were typing their own thoughts ended up on the cutting room floor.  Many people wrote letters to WGBH in Boston, which produced the show, but they refused to admit that they produced bad journalism.  Several programs were done sensationalizing sexual abuse allegations which could not be substantiated, but not one ever mentioned the only scientific study which examined the number of unproven allegations made using FC compared to unproven allegations made by verbal children.  This was done in 1994 by Dr. Ann Botash  and others who looked at allegations in Upstate New York, and found there was no difference between allegations lacking evidence made by people using FC and those made by non-disabled speaking people. 

            One of the cases most frequently cited as an example of false communication is that of ‘Carla’, who alleged that her family had abused her.  Although she had a history of making things up, no one accused her of lying, but focused only on the facilitated communication.  She was tested with an untrained facilitator and found to be unable to communicate.  All the people involved in this finding refused to observe her typing with trained facilitators, so they never saw her answering questions with no facilitation or typing fluently with a hand on her shoulder (Crossley, January 14, 1998).


 

            A review of the literature shows very disparate results.  In the resolution by the American Psychological Association on Facilitated Communication adopted August 14, 1994, in Los Angeles, they conclude that it was an unproved communicative procedure with no scientifically demonstrated support for its efficacy.  This was based on fifteen studies.  However, there are now seven  studies that clearly show Facilitated Communication works.  One of these, done by Don Cardinal from Chapman University and others, in 1996, contains more subjects than all of the negative studies combined.

            How could peer-reviewed studies by academicians come to such opposite conclusions?  The problem was with the protocols used in the studies where FC failed.  For example, some of the tests were conducted in unfamiliar environments.  One of the worst cases was in Regal, Rooney & Wandas where subjects were escorted to the experimental room by their facilitator who requested their participation on the way (Kurtz, 2).  The unfamiliar environment might not affect a person without autism, but is devastating to a person with autism.  Also, in some studies facilitators were not experienced and this would absolutely, absolutely ensure failure.  Another problem was that people did not have an opportunity to practice the protocol.  In a study by Cardinal, Hanson and Wakeham (1996) everyone failed the first time they tried the test, but after practicing the procedure, not the answers, 75% passed.

            A perfect example of how the protocol determines the outcome of a study is the O.D. Heck study by Wheeler, Jacobson, Paglieri, and Schwartz. Eugene Marcus, a young man with autism and an FC user, replicated the test procedure with the help of his facilitator, tried to pass the test, and failed miserably.  After a year of analyzing why he had failed, he took the test again and passed with flying colors.  Clearly this was not a validation test of Facilitated Communication.  The reporting of the results of Wheeler’s study is a little strange anyway.  In the initial report several correct answers were given by subjects, but these data were not included in the article in Mental Retardation.

 Don Cardinal and Doug Biklen looked at this anomaly of some studies showing FC works and others showing it doesn’t, and concluded that certain elements had to be present in sufficient amounts for FC users to be able to demonstrate their ability to type.  In Contested Words, Contested Science they suggest:

1.      extensive experience with facilitation by both the facilitator and the user

2.       practice using multiple trials

3.      facilitated communication user consults on test and format

4.       familiar facilitators

5.       monitoring for facilitated communication user’s style

6.       no-risk or low-risk testing

7.       building confidence

8.       naturally controlled conditions

9.       ongoing feedback on performance

10.  minimization of word retrieval tasks

11.  information by multiple modalities

12.  age appropriate content

13.  personally relevant content

14.  extensive time to respond to questions. (173-186)

 

         As more studies are done using these guidelines the evidence will become stronger and stronger that Facilitated Communication works.  Of course, if an unethical researcher uses this information to set up protocols where these elements are absent, then we will see more negative studies.  Since people’s reputations are at stake this is a possibility.  However, as more FC users become independent typers and no physical support is used, it will be harder to say that FC is a hoax.  Figures are not available for the number of independent typers in the United States; however, in Australia where Rosemary Crossely practices, as of 1992, 60 people out of 300 people who had been trained in FC could type an intelligible sentence without a model (i.e. not copy typing), and without physical contact from a facilitator (January 14, 1998). Many FC users in many countries are partially independent - able to type individual words, punctuation, their own names, or answer multiple choice questions.

         Facilitated Communication is being used around the world in such countries as England, Finland, Sweden, Canada, Denmark, Germany, France, Italy, Japan, Australia, Brazil, Argentina, Israel, and New Zealand.  Facilitators in Italy are quickly fading support, so users are requiring only a hand on the shoulder after typing for a short time.    Time will be our ally and we naturally will be vindicated.  As for Anne McDonald the young woman who at the age of sixteen weighed twenty-eight pounds, could not communicate, and was near death, she has since completed a bachelor’s degree at Deakin University and is working on a graduate degree.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Works Cited

 

Botash, Ann, D. Babuts, N. Mitchell, M. O”Hara, J. Manuel, L. Lynch.  “Evaluations of Children who have disclosed Sexual Abuse via Facilitated Communication.”  Archives of Pediatric Medicine. 148, (1994) 1282-1287.

 

Biklen, Douglas.  “Communication Unbound: Autism and Praxis.”  Harvard

Educational Review.  60 (1993) : 291-314.

 

Biklen, Douglas and Donald Cardinal. Contested Words, Contested Science.

New York:  Teachers College Press, 1997.

 

Biklen, Douglas.  Personal Correspondence.  January 12, 1998.

 

Cardinal, Donald, Darlene Hanson and John Wakeham.  “An Investigation of Authorship in Facilitated Communication.”  Mental Retardation, 43 (4), (1996) 231-242.

 

Crossley, Rosemary. Speechless.  New York:  Dutton, 1997.

 

Crossley, Rosemary.  Personal Correspondence.  January 14, 1998.

 

Donnellan, Anne, personal correspondence, January 27, 1998.

 

Donnellan, Anne, and Marthy Leary.  Movement Differences and Diversity in Autism/Mental Retardation.  Madison, WI:  DRI Press.  1995.

 

Donnellan, A.M., Sabine, L. & Majure, L.A.”Facilitated Communication: Beyond the Quandary to the Questions”. Topics in Language Disorders. 12, 4, 1992,  69-82.

 

Eastham, Margaret.  Silent Words.  Ottawa:  Oliver Pate, 1992.

 

Kurtz, Alan, Project Coordinator,  What Frontline Didn’t Tell You.  Second Edition, The Center of Community Inclusion, Maine’s University Affiliated Program, University of Maine, Orono, Maine, December, 1994.

 

Marcus, E. and M. Shevein. (In press) “Sorting it Out Under Fire: Our Journey”

In D. Biklen and D. Cardinal (eds.) Contested Words, Contested Science. New York:  Teachedrs College Press, 1997 115-134.

 

Oppenheim, Rosalind.  Teaching Methods for Autistic Children. Springfield, IL: Charles Thomas, 1974.

 

Oppenheim, Rosalind.  “They Said Our Child Was Hopeless.”  Saturday Evening Post. 17 June, 1961: 56-58.

 

Regal, R.A., J.R. Rooney, & T. Wandas.  “Facilitated Communication: An Experimental Evaluation”.  Journal of Autism and Developmental Disorders, 24 3, 1994, 345-356.

 

Wing, Lorna.  “The Handicaps of Autistic Children.” Communication. June 1970. 5-10.