Facilitated communication

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Facilitated communication (FC) is a method intended to help people with communication disorders to use communication aids with their hands. The facilitator offers emotional and physical support, often steadying the user's hand, wrist or arm as the user points toward the communication device (often a picture board, speech synthesizer or keyboard). The immediate aim of FC is to allow the user to make choices and to communicate in a way that has been impossible previously. The ultimate goal of the method is to enable the person to use an augmentative communication device independently.

Facilitated communication is most often used with persons with developmental disabilities, most commonly autism and Down syndrome, populations in which some neurologists believe there is a high incidence of dyspraxia, or difficulty with planning and/or executing voluntary movement (Bauman, 1993).

The practice is controversial for several reasons (see research section). One of the reasons is that the majority of controlled studies have shown that it is not the user who is producing the words, but the facilitator, who cues the subject (unconsciously) through the observer-expectancy effect. In these cases the words do not derive from the user but from the facilitator, who is unaware of this fact. There is also disagreement as to the relationship of facilitator-steering to recommended facilitation techniques: proponents often argue that facilitator-steering arises from a misapplication of FC techniques. That there are such cases, i.e. users who are inadvertently steered by the facilitators, is not controversial. The controversy is does FC produce sufficient authentic writers to justify its use by practitioners.

FC poses a common ethical dilemma for the practitioner: Members of helping professions are highly motivated to minimize suffering in those they serve, yet such interventions can only be ethically provided if there is converging evidence from independent, well-controlled studies. Professionals who serve Autistic individuals and their families are faced in FC with a potentially useful tool that promises much help, but which has not been supported by generally accepted scientific methods. While many professionals serving the Autistic community decide to limit themselves to interventions that have been scientifically supported, others are deeply tempted to use FC, motivated by the suspicion that at least some Autistic individuals might genuinely be helped by its use, and thus harmed by its exclusion.

Contents 1 History 2 Research 3 Independent Typing 4 References 5 External links

[edit] History

Facilitated communication first drew attention in Australia in 1977, when Rosemary Crossley, teacher at St. Nicholas Hospital, produced communication from 12 children diagnosed with cerebral palsy and other handicaps and argued that they possessed normal intelligence. These findings were disputed by the hospital and the Health Commission of Victoria; however, in 1979 one of Crossley's students, Anne McDonald, left the hospital after successfully fighting an action for Habeas Corpus in the Supreme Court of Victoria. After continuing controversy the Victorian Government closed the hospital in 1984-5 and rehoused all the residents in the community. Crossley and McDonald wrote a book about the experience called "Annie's Coming Out" in 1984.

Facilitated communication gained more credibility when Arthur Schawlow, a Nobel-prize-winning physicist, used it with his autistic son in the early 1980s and felt that it was helpful. His experience and its effects on the disability community are described on the Stanford University website [1]: "They became champions of the technique and were largely responsible for introducing it to the United States, where it remains controversial."

In 1989 Douglas Biklen, a sociologist and professor of special education at Syracuse University, investigated Rosemary Crossley's work in Australia. She was then Director of DEAL (Deal Communication Centre), Australia's first federally-funded centre for augmentative communication. Biklen helped popularize the method in the USA and created the Facilitated Communication Institute at Syracuse University.

After starting to use the method in Syracuse, Biklen reported startling results in which students with severe autism were producing entire paragraphs of clarity and intellect. This produced an explosion of popularity. The method spread across the USA, especially due to its seeming success with people with autism, a severe developmental disability accompanied by difficulties with communication. Facilitated communication was strongly embraced by many parents of disabled children, who hoped that their children were capable of more than had been thought. (Most of the foregoing discussion is referenced in Jacobson et. al., 1995).

Nevertheless, serious questions regarding FC soon began to surface. For example, some autistic FC users appeared not to be looking at the keyboard while typing (which is contrary to training standards for FC). Still others used vocabulary that was apparently beyond their years and/or education, many producing poetry of varying complexity. A major concern arose when some of the communications emanating via FC accused the parents of autistic children of severe sexual and/or physical abuse; not all such allegations were proven true. (However, some sexual abuse allegations made via FC have been found to be valid)[2].) Also disturbing were the reports about facilitated persons that apparently were able to "mind read" the thoughts of their facilitators [3]. In late 1993, a Frontline (PBS) documentary highlighting these concerns was televised [4]; FC proponents responded with criticisms of negative bias [5],[6].

Around the same time, controlled studies were done on the method, a majority of which found that it was the facilitator who was unconsciously producing the communication. By the late 1990's, FC had been discredited in the eyes of most scientists and professional organizations; it retained acceptance in some treatment centers in North America, Europe and Australia.

[edit] Research

In these negative studies, practitioners were unintentionally cueing the facilitated person as to which letter to hit, so the resulting letter strings did not represent the thoughts of the students but the expectations of the facilitators. However, some studies did show positive or mixed results (i.e., valid authorship by FC users; e.g. Calculator and Singer, [7], and [8]), and much debate ensued among scholars and clinicians [9]. In the opinions of proponents of the method (Biklen et al, 2005), positive results were generally seen in more naturalistic settings, and negative results in more controlled settings.

FC proponents argue that in most of the negative studies, the laboratory setting was itself the confounding variable: i.e., communication is inherently very difficult for autistic people, so they can't necessarily be expected to replicate their successes under unfamiliar or even hostile conditions (e.g., those in which continuance of access to FC was contingent upon passing or failing the test). However, not all negative findings were obtained in clinical settings only; some tests were smoothly embedded in familiar surroundings and daily activities (e.g. [10], [11]), in which participants sometimes did not even know they were tested. In their 1997 book, Contested Words Contested Science, Biklen and Cardinal (and others) attempt to shed light on why some controlled studies support FC while others do not ([12] see Reference list below).

Critics of FC question why people who can give speeches in public and go to college cannot answer a series of simple questions under controlled conditions. Critics also point out that positive results are typically obtained using "qualitative research methods" in which standard experimental controls for bias and subjectivity are weak or non-existent. Proponents argue that FC users have indeed passed controlled tests, often under duress, and as a condition for having access to basic human rights such as educational services and even freedom from institutionalization (e.g., McDonald, 1993; Crossley and McDonald, 1984; and Dwyer, 1996). Proponents also state that a handful of controlled studies supporting authorship by FC users have been published in journals ([13] Cardinal, Hanson and Wakehan, 1996 and others cited in this article).

Some people have continued to use FC, and some have attended college [14].

Harvard University psychologist Daniel Wegner has argued that facilitated communication is a striking example of the ideomotor effect [15], the well-known phenomenon whereby individuals' expectations exert unconscious influence over their motor actions (Daniel Wegner). Even FC users and proponents do acknowledge the possibility of facilitators at times "guiding" users, consciously or unconsciously. Other theorists (Donnellan and Leary, 1995) argue that autism is in significant part characterized by dyspraxia (a movement disorder), and that there exists a synchronistic "dance" to communication in all mammalian social interaction which accounts for the mixed results in validation studies (http://www.autcom.org/rethinking.html).

Still, the most significant concern with FC was, and remains, that of authorship: the question of who is really doing the typing. Numerous controlled studies have unambiguously established that facilitator influence does occur. FC users and proponents acknowledge this phenomenon; Sue Rubin, an FC user initially diagnosed as mentally retarded but who now attends college and types without physical support (see below), has described her own experience with facilitator influence [16]. FC proponents point out that the fact that cueing occurs under certain conditions with certain FC users does not necessarily mean that it always occurs with all FC users. A few controlled studies since 1995 have demonstrated instances of genuine authorship by FC users ( [17], [18], and Sheehan and Matuozzi). These studies, and the emergence of independent typing in some FC users, demonstrates in the opinion of proponents that at least in some cases FC is valid; given the experimental evidence, it is impossible to say just how rare or how common such cases are.

Stephen N. Calculator (1999) says: "Whereas the use of FC proliferated in the United States and elsewhere following initial optimistic reports by Biklen (1990, 1993), Crossley (1992, 1994), and others, this fervor has not been matched by efforts to validate the approach or its theoretical bases. Investigators applying qualitative methods have had their outcomes of success for FC challenged by others in the scientific community who question the appropriateness of such methods in studying FC use. Meanwhile, experimental investigators have focused primarily on questioning and disproving the efficacy of this method. ... Caught in the scientific impasse are individuals with severe communication impairments who may or may not benefit from this approach. They and their families continue to be bombarded with contradictory information, philosophies, and recommendations regarding this method."

Mark Mostert (2001) says: "Previous reviews of Facilitated Communication (FC) studies have clearly established that proponents' claims are largely unsubstantiated and that using FC as an intervention for communicatively impaired or noncommunicative individuals is not recommended."

[edit] Independent Typing

The phrase "independent typing" is defined by supporters of FC as "typing without physical support", i.e., without being touched by another person [19]. Skeptics of FC do not agree that this definition of independence suffices because of the possibility of influence by the facilitator. For example, Sue Rubin, an FC user featured in the autobiographical documentary Autism Is A World, reportedly types without anyone touching her; however, she reports that she requires a facilitator to hold the keyboard and offer other assistance[20].

A number of other people who began communicating with FC have reportedly gone on to be independent typists (i.e., without physical support), and in some cases read aloud the words typed (Biklen et. al., 2005). Critics complain that these cases have not been objectively and independently verified (Calculator, 1999); such verification is absent in peer-reviewed studies. However, a few individuals have in fact been cited as independent typists in independently-reviewed publications. Examples include Jamie Burke (Broderick and Kasa-Hendrickson, 2001), Sharisa Joy Kochmeister, and Lucy Blackman, author of the autobiography Lucy's Story (Blackman, 2001) (cf. Beukelman and Mirenda, 1998).

Douglas Biklen has compiled the reports from three FC users about their progress toward independent typing [21]. FC user Alberto Frugone has also eloquently described the emotional and physical hurdles involved (Frugone, 2005; online copy).

Beukelman and Mirenda, authors of a leading textbook on Augmentative and Alternative Communication, express strong reservations about the use of FC but nonetheless note the existence of "a small group of people around the world who began communicating through FC and are now able to type either independently or with minimal, hand-on-shoulder support. There can be no doubt that, for them, FC 'worked,' in that it opened the door to communication for the first time. ... We include FC here because of Sharisa Kochmeister, Lucy Blackman, Larry Bissonnette, and others who now communicate fluently and independently, thanks to FC. For them, the controversy has ended." (Beukelman & Mirenda, 1998). Stephen von Tetzchner, the author of another leading textbook on Augmentative and Alternative Communication has done theoretical research about facilitated communication (e.g. [22]). In his opinion "The existing evidence clearly demonstrates that facilitating techniques usually led to automatic writing, displaying the thoughts and the attitudes of the facilitators." (von Tetzchner, 2000, p. 177).

Amanda Baggs, a nonspeaking autistic woman who uses both FC and independent typing, has a great deal to say about how FC works. Her photo-essay Getting The Truth Out, designed to challenge preconceived notions about autism, includes a video showing her typing with one finger, without looking at the keyboard. She describes it as a skill similar to touch typing.

[edit] References

Bauman, M., and editors of The Autism Society Of America (1993). An Interview with Margaret Bauman. Advocate, 24(4), 1 & 13-17

Biklen, D., with Richard Attfield, Larry Bissonnette, Lucy Blackman, Jamie Burke, Alberto Frugone, Tito Rajarshi Mukhopadhyay and Sue Rubin. Autism and the Myth of the Person Alone. New York University Press, (2005) ISBN 0-8147-9927-2

Biklen, D. & Cardinal, D. N. (1997). Contested Words, Contested Science: Unraveling the Facilitated Communication Controversy. Teachers College Press, New York.

Beukelman, D., and Mirenda, P. Augmentative and Alternative Communication: Management of Severe Communication Disorders in Children and Adults. Paul H. Brookes, (1998) ISBN 1-55766-333-5

Blackman, L. Lucy's Story: Autism And Other Adventures. Foreword by Tony Attwood. Jessica Kingsley Publishers, (2001) ISBN 1-84310-042-8

Broderick, A.A., and C. Kasa-Hendrickson (2001). "SAY JUST ONE WORD AT FIRST": The Emergence of Reliable Speech in a Student Labeled With Autism. JASH, 26(1), 13-24

Crossley, R., and McDonald, A. Annie's Coming Out. Viking Penguin, (1984) ISBN 0-14-005688-2

Calculator, S.N. & Singer, K.M. (1992). Preliminary Validation of facilitated communication. Topics in Language Disorders (Letter to the editor), 12(6), ix-xvi.

Calculator, S.N. (1999). Look Who’s Pointing Now: Cautions Related to the Clinical Use of Facilitated Communication. Language, Speech, And Hearing Services In Schools, 30 (Octovber), 408–414 (online version; PDF)

Cardinal, D. N., Hanson, D., & Wakeham, J. (1996). An investigation of authorship in facilitated communication. Mental Retardation, 34(4), pp231-242.

Donnellan, A.M. & Leary., M.R. Movement Differences and Diversity in Autism/Mental Retardation: Appreciating and Accommodating People with Communication Challenges. DRI Press, (1995) ISBN 1-886928-00-2

Dwyer, Joan. (1996). ACCESS TO JUSTICE FOR PEOPLE WITH SEVERE COMMUNICATION IMPAIRMENT. The Australian Journal of Administrative Law, February 1996, 3(2), 73-119. (online copy)

Frugone, Alberto (2005). Independence: What It Is, How To Reach It. Our Voices, March 2005. (online copy)

Intellectual Disability Review Panel. (1989). Report to the director-general on the validity and reliability of assisted communication. Melbourne, Victoria, Australia: Victoria Community Services.

McDonald, A. (1993). I’ve Only Got One Life and I Don’t Want to Spend It All Proving I Exist. Communicating Together, 11(4), 21-22

Mostert, M. (2001) Facilitated communication since 1995: A review of published studies. Journal of Autism and Developmental Disorders, 31(3), 287-313.

Sheehan, C. & Matuozzi, R. (1996) Validation of facilitated communication. Mental Retardation, 34 (2), 94-107.

Spitz, H. (1997). Nonconscious Movements: From Mystical Messages To Facilitated Communication. Lawrence Erlbaum Associates

Twachtman-Cullen, D. (1997). A passion to believe: Autism and the Facilitated Communication Phenomenon. Boulder, Colorado/Cumnor Hill, Oxford: Westview Press

von Tetzchner, St. & Martinsen, H. (2000): Introduction to Augmentative and Alternative Communication. Second Edition. London: Whurr

[edit] External links

• Training Centers:
  • Deal Communication Centre, Australia
  • Facilitated Communication Institute, Syracuse University, USA

• Bibliographies:
  • Facilitated Communication Training: An Annotated Bibliography
  • Samuel Gridley Howe Library Bibliographies: Facilitated Communication (PDF)

• Articles:
  • Language and Retardation, Borthwick, C. and Crossley, R., Psycoloquy (1999)
  • Infant Motor Dyspraxia as a Predictor of Speech in Childhood Autism (PDF)

• Opinions and Experiences:
  • Facilitated Communication: All viewpoints Web page of interfaith group exploring ethical ramifications of FC
  • From Haunted Brain To Haunted Science: A Cognitive Neuroscience View of Paranormal and Pseudoscientific Thought - Peter Brugger, University Hospital Zürich
  • Is Facilitated Communication Real? - comments by Nobel-Prize winning physicist Arthur Leonard Schawlow

• Controlled studies:
  • This section is a stub. You can help by adding to it.
  • Doug Wheeler: An Experience With Facilitated Communication (1993) (summary)
  • Montee et al. (1995)

• By and About FC Users:
  • Articles By FC Users
  • People Who Use FC
  • QIM Tunes (Book)
  • Message-Passing: Part Of The Journey To Empowered Communication, by Mayer Shevin and Annegret Schubert
  • Learning About Independent Typing From People Working To Achieve It, by Douglas Biklen, with comments from Lucy Harrison, Larry Bissonnette and Sharisa Joy Kochmeister
  • Ballastexistenz Blog written by a nonspeaking autistic woman who uses both FC and independent typing.

• Media:
  • "Prisoners of Silence": Frontline show on FC aired October 19, 1993
  • In The Front Line - Response to Frontline show by Rosemary Crossley and other FC proponents
  • "Autism Is A World": Documentary on FC user Sue Rubin (now able to type without physical support) which aired on "CNN Presents"
  • Facilitated communication advocated in CNN-funded documentary - Critical review of "Autism Is A World" from Behavior Analysis Association of Michigan
  • Pseudoscience in Autism Treatment - Critical review of "Autism Is A World" from Pasadena Weekly

• Position statements:
  • American Academy of Child & Adolescent Psychiatry (1993)
  • American Academy of Pediatrics (1998)
  • TASH (1994)
  • American Psychological Association (1994)
  • American Speech-Language-Hearing Association (1994) (PDF)
  • Behavior Analysis Association of Michigan (BAAM) (1998)
  • New York State Department of Health (1999)
  • Report of the MADSEC Autism Task Force, pages 35-41 (2000) (PDF)
  • Autism National Committee (2003)
  • Breaking The Barriers: Resolution On The Right To Communicate (2004)
  • Commission for Scientific Medicine and Mental Health (2005)