Facilitated communication

Facilitated communication (FC) is a process by which a facilitator supports the hand or arm of a communicatively impaired individual while using a keyboard or other devices with the aim of helping the individual to develop pointing skills and to communicate. Some neurologists and psychologists believe there is a high incidence of dyspraxia, or difficulty with planning and/or executing voluntary movement, among such individuals, and that this is alleviated by a facilitator's manual support. Proponents of FC suggest that some people with autism and moderate and profound mental retardation may have "undisclosed literacy", or the capacity for other symbolic communication, consistent with higher intellectual functioning than has been presumed.

The procedure is controversial, since a majority of peer reviewed scientific studies conclude that the typed language output attributed to the clients is directed or systematically determined by the therapists who provide facilitated assistance. Some peer-reviewed scientific studies have indicated instances of valid FC, and some FC users have reportedly gone on to type independently.

History
Facilitated communication first drew attention in Australia in 1977, when Rosemary Crossley, teacher at St. Nicholas Hospital, claimed to have 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 further exposure when Nobel laureate Arthur Schawlow 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: "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 said to be producing entire paragraphs of clarity and intellect. This produced an explosion of popularity; the method spread across the USA&mdash; especially due to its seeming success with people with autism. Facilitated communication was strongly embraced by many parents of children with disabilities, 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 concern arose when some of the communications accused the parents of children with autism 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. In late 1993, a Frontline (PBS) documentary highlighting these concerns was televised; FC proponents responded with criticisms of negative bias.

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

Current position statements of certain professional and/or advocacy organizations do not support the use of Facilitated Communication due to their objections that it lacks scientific validity or reliability. These organizations include the American Speech-Language-Hearing Association, Association for Behavioral Analysis (ABA), American Academy of Child and Adolescent Psychiatry, and the American Association on Mental Retardation. ABA calls FC a "discredited technique" and warns that "its use is unwarranted and unethical."

The Association for Science in Autism Treatment reviewed the research and position statements and concluded that the messages typed on the communication device were controlled by the facilitator, not the individual with autism, and FC did not improve their language skills. Therefore, FC was reported to be an "inappropriate intervention" for individuals with autism spectrum disorders.

TASH (2000) stated: "The question of authorship can become particularly controversial when the subject of what has been communicated concerns sensitive issues ... (TASH) encourages rigorous and ongoing training for people who decide to become facilitators; encourages careful, reflective use of facilitated communication; encourages facilitators to work in collaboration with individuals with severe disabilities to find ways of monitoring authorship when using facilitation."

The Autism National Committee (AutCom) in 2008 issued a position paper in favor of FC, stating: "Autcom criticizes attempts to dismiss FC on the basis of flawed studies that are poorly designed and/or whose results are incorrectly extrapolated to the entire population of FC users. In particular, we reject over-generalized claims that allege or imply that merely because FC is not valid for some people under some circumstances, FC is not valid for any person under any circumstances." Autcom also acknowledges that facilitator influence is real, and argues that while every effort should be made to avoid it, it is possible for both facilitator influence and genuine, FC-user-authored communication to occur in a given conversation.

Research
In the majority of controlled 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 report positive or mixed results, i.e., valid authorship by FC users,  and much debate ensued among scholars and clinicians. In the opinions of proponents of the method, 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 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.

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 argue 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 ).

Harvard University psychologist Daniel Wegner has argued that facilitated communication is a striking example of the ideomotor effect, the well-known phenomenon whereby individuals' expectations exert unconscious influence over their motor actions. 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.

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. 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 reported instances of genuine authorship by FC users. 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 but that given the experimental evidence, it is impossible to say just how rare or how common such cases are.

Stephen von Tetzchner, the author of another leading textbook on Augmentative and Alternative Communication has done theoretical research about facilitated communication. 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."

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."

In March of 2007, Scott Lilienfeld included facilitated communication on a list of treatments that have the potential to cause harm in clients, published in the APS journal Perspectives on Psychological Science.

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. 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. 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). An example of near-independent typing is shown in Douglas Biklen's documentary of artist Larry Bissonnette, My Classic Life as an Artist: A Portrait of Larry Bissonnette, produced at Syracuse University. Critics complain that these cases have not been objectively and independently verified; 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), and Lucy Blackman, author of the autobiography Lucy's Story (Blackman, 2001). Douglas Biklen has compiled the reports from three FC users about their progress toward independent typing.

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."