Chapter 8 The Controversy Surrounding Facilitated Communication J.B. Ganz, Aided Augmentative Communication for Individuals with Autism Spectrum Disorders, Autism and Child Psychopathology Series, DOI 10.1007/978-1-4939-0814-1_8,© Springer Science+Business Media New York 2014 Introduction Although thoroughly discredited (Mostert 2002 ), facilitated communication (FC), purportedly a type of augmentative and alternative communication (AAC) that pro-vides a means of communication for individuals who cannot speak, continues to be used and promoted. This chapter provides a description of FC, an overview of the history of the use of FC in the USA, several cautions related to its use, an overview of the research discrediting FC, a discussion of the recent resurgence of FC, and conclusions. Readers are cautioned that this information is provided for infor-mational and cautionary purposes and not as a “how to” description of how to implement FC, which is not recommended. What Is Facilitated Communication? FC was developed as a means of providing opportunities for individuals with dis-abilities that impeded speech, such as autism and cerebral palsy, to communicate via typing or pointing to words or pictures ( Crossley 1992 ). According to the original developers and promoters of FC, the technique involves the following components. One, physical support is provided by a “facilitator,” who is an adult who holds or supports the hand of the client (Biklen et al. 1992 ; Biklen and Schubert 1991 ). The supposed purpose of this support is to help the client point, but not to make word or letter selections, and provide emotional support. Two, the facilitator provides instruction in FC by asking the client questions and physically prompting the cor-rect answers (Biklen and Schubert 1991 ). Three, the facilitator assists the client in focusing on the task by redirecting from other activities (such as self-stimulation) through physical and verbal prompts, reminding the client to look at the keyboard, and ignoring echolalia and challenging behaviors (such as pushing the keyboard away; Biklen and Schubert 1991 ). Four, the facilitator is to avoid testing the client’s Chapter 8 The Controversy Surrounding Facilitated Communication 129 116abilities to correctly answer questions, purportedly to promote the idea that the client is a competent, independent communicator (Biklen and Schubert 1991 ). Five, the facilitator is to begin “set work,” which are tasks that have predictable answers, eventually leading to more open-ended questions (Biklen et al. 1992 ; Biklen and Schubert 1991 ). Finally, six, the facilitator is to fade physical support, although Biklen and Schubert ( 1991 ) caution that this may take several years. History of Use of FC Surprisingly, despite decades of evidence that FC is ineffective and has caused great harm to families (Beck and Pirovano 1996 ; Hostler et al. 1993 ; Mostert 2001 ), FC has been implemented with individuals with CCN since at least the early 1990s. The founders of FC, both in Australia and in the USA, have made a number of claims regarding the effi cacy of FC and reasons they believe it cannot be evaluated using traditional scientifi c methods (Biklen and Schubert 1991 ; Sheehan and Matuozzi 1996 ). This history is summarized below. Founders’ Claims The founders and early adopters of FC have made extraordinary claims regarding skills of individuals, previously unable to communicate, who are suddenly, through FC, found to have previously unimaginable knowledge and skills (Crossley 1992 ). One such example is a case study of a 7-year old with autism, previously thought of as unable to read or write, who within days of introduction of FC was able to spell multi-syllabic words and, within 2 months, was typing sentences of up to seven words expressing feelings (Biklen and Schubert 1991 ). An adult with intellectual disabilities who had previously used almost no spontaneous speech and only a few manual signs suddenly began identifying objects correctly and typing complete sen-tences on the fi rst day she was introduced to FC, though only with physical support (Crossley 1992 ). A teenage girl who could not speak other than via echolalia report-edly wrote a lengthy, heartfelt letter to her mother (Biklen et al. 1992 ). Biklen and Schubert ( 1991 ) describe case studies of 20 children with autism who, prior to FC, used a few manual signs, had no speech, or had limited speech such as echolalia or simple question-answering were remarkably able to communicate with full sen-tences with FC implementation; however, in no case did the authors report that physical support had been completely faded for any of the children. One of these children, a 3year old with autism, surprisingly began to spell words far above the expectations given his age (Biklen and Schubert 1991 ). A young woman with autism gave a lengthy apology after repeatedly becoming physically aggressive with her f participated in general education instruction, was able to complete complex math problems (Biklen and Schubert 1991 ). Other remarkable accounts include writing poetry and engaging in lengthy conversation (Biklen and Schubert 1991 ), skills that are unusual even in individuals with autism who are verbal and high functioning. These claims are not supported by robust research, only case studies (Biklen et al. 1992 ; Biklen and Schubert 1991 ; Crossley 1992 ). FC proponents have a number of hypotheses to explain why individuals who were previously thought to have little to no language skills and cognitive impair-ments were suddenly able to demonstrate extraordinary skills and knowledge through FC. These authors suggest that previous conceptualizations of autism, sug-gesting signifi cant social and language delays, were severely mistaken (Biklen and Schubert 1991 ) and that when individuals with autism fail to communicate effec-tively, this is primarily due to anxiety, which can only be addressed through emo-tional and physical support (Biklen 2003 ); in other words, through FC. One is the suggestion that, while appearing to avoid others, individuals with autism may be quietly observing and dedicating the brain power that is not used to socialize or speak toward increased intellectual capacity (Biklen and Schubert 1991 ). Another is the suggestion that, while not appearing to engage in learning activities, these children had learned incidentally via watching their siblings do homework, watch-ing educational television, and while independently leafi ng through books (Biklen and Schubert 1991 ). Despite these supposedly marked changes in abilities to under-stand and use language; apparently many of the individuals using FC continue to engage in challenging behaviors, including aggression, that make their inclusion in community activities diffi cult (Biklen et al. 1992 ). This is surprising given that many of these individuals reportedly understood complex language and, presum-ably, had been told the natural consequences of such behaviors and supposedly had the ability to communicate wants and needs, which typically reduces the need for challenging behavior. Regarding concerns that typed messages may be initiated by facilitators rather than the clients, the proponents of FC have a number of possible explanations for why they believe this is unlikely (Biklen 2003 ). One, they claimed that children demonstrated unique phonetic typographical errors in their typing (Biklen and Schubert 1991 ). Two, they stated that because some of the children required only minimal support, though few have been reported to type independently, it was unlikely that they were being cued (Biklen and Schubert 1991 ). Three, the chil-dren’s written words appeared to display unique personalities (Biklen and Schubert 1991 ). Four, concerns that some children would only “perform” with one facilitator, but not others, are used as opportunities to blame the other potential facilitators for not being supportive of the clients (Biklen and Schubert 1991 ). Five, Biklen ( 1996 ) argues that lack of confi dence in the communicative competence of individuals with disabilities leads to poor performance, making controlled studies diffi cult if not impossible. Six, he also argues that test anxiety resulted in poor performance on tasks in which the facilitators were blind to the questions asked of their clients in controlled studies (Biklen 1995 ). Such arguments appear to be an attempt to History o 118discount any possible means of negating the effi cacy of FC. Despite these claims, proponents of FC have been unable to provide convincing evidence that, in most cases, FC is effective and that the messages originate from the individual who has communication needs. Publications Touting the Reported Benefi ts of FC FC has been long debunked (Mostert 2010 ). However, in the early-to-mid-1990s, a number of articles that appeared to support FC were published in peer-reviewed journals. These were primarily anecdotal or qualitative in nature (e.g., Biklen and Schubert 1991 ; Broderick and Kasa-Hendrickson 2001 ; Weiss et al. 1996 ). One such author (Clarkson 1994 ) simply extolled the use of FC paired with music ther-apy, claiming unexpected literacy skills and exploration of feelings as a result of implementation. Another (Olney 1995 ) provided narrative accounts of FC use in a case study as “evidence,” further suggesting that because the individual with autism with whom she worked sometimes typed insults and surprising information, that was indicative of his authorship, despite the author’s acknowledgment that she likely led and overinterpreted his communication. Group studies with reportedly positive results had generally poor experimental design. For example, Cardinal et al. ( 1996 ) claimed that participants’ independent performance had improved when comparing pre–post FC testing; however, they failed to note that neither perfor-mances were better than what would be expected by chance. Further, they failed to collect inter-rater reliability data, leaving one to question the validity of their results, and facilitators were never blind to the stimuli presented to the participants, leaving the reader unable to know who authored the messages. Failed attempts to demon-strate consistent patterns of responding were often dismissed with claims that the mechanisms involved in FC are too complex to investigate via traditional scientifi c procedures and low rates of correct responding in such situations were highlighted as proof, regardless of far higher rates of incorrect responding, the presence of signifi cant redirection and prompting by the facilitators, and lack of inter-rater agree-ment data (Sheehan and Matuozzi 1996 ). No well-designed and controlled studies can be found that demonstrate successful use of FC, free from facilitator bias. Research Negating and Cautions Related to the Dangers of FC Numerous well-designed studies have made it clear that, in most cases, messages produced via FC are authored by facilitators rather than their clients, or, in some, clients performed better independently than when facilitated (Mostert 2001 , 2010 ). Some of t facilitator could or could not see the same stimulus as the client (Bebko et al. 1996 ; Cabay 1994 ; Hirshoren and Gregory 1995 ; Kerrin et al. 1998 ; Montee et al. 1995 ), poor performance when the facilitator could not see the stimuli or the communica-tion board (Szempruch and Jacobson 1993 ), and near-chance level responding when the facilitator could not see any stimuli (Regal et al. 1994 ). Further, researchers (Bebko et al. 1996 ) demonstrated that most participants performed worse on similar tasks when facilitated but the facilitator could not see the same stimuli compared to their independent performing, suggesting that the use of FC may encourage prompt dependence, or lead to the participants waiting to be prompted instead of attempting independent responding. Additionally, lengthier use of FC appears to correlate with greater degrees of infl uence of the facilitator on the message produced (Bebko et al. 1996 ). Studies involved the use of headphones, showing poor performance when the participants and the facilitators heard different words compared to better perfor-mance when the participants and facilitators heard the same stimuli (Beck and Pirovano 1996 ; Hudson et al. 1993 ). Further, in a study in which the participant and facilitator heard different questions, some of the facilitator’s questions were answered correctly, that the participant could not hear, while none of the participant’s questions, that the facilitator could not hear, were correct (Hudson et al. 1993 ). Studies involving facilitators who were blinded to both visual and auditory stimuli found poor performance in participants, even in cases following several months of instruction (Bomba et al. 1996 ; Eberlin et al. 1993 ; Smith et al. 1994 ). Several of the studies indicated that unexpected literacy skills, of the kind suggested by FC proponents (Biklen et al. 1992 ), were not indicated (Bebko et al. 1996 ; Eberlin et al. 1993 ). Some of the studies demonstrating the infl uence of the facilita-tor on the message produced using FC implemented multiple methods of evaluation and a range of simple to complex tasks to ensure that results were not due to the designs of the tasks or tasks that were beyond the participants’ capabilities, lending more credibility to those studies (e.g., Bebko et al. 1996 ). Strikingly , some partici-pants whose performances were similar whether or not the facilitator heard or saw the same stimuli or whose performances were poor when the facilitator was blinded were able to independently perform well on the target tasks, via use of AAC (Beck and Pirovano 1996 ) or manual signs or limited verbalizations (Vázquez 1995 ). Proponents of FC have suggested that testing individuals who use FC can cause anxiety, thus suggesting that FC is incompatible with traditional quantitative research methods. Thus, some researchers have designed naturalistic assessments as well, having the participants engage in a leisure or other activity outside of the facilitators’ view, then asking questions about the activities (Simon et al. 1994 ). Such studies demonstrated poor performance on most questions with naïve facilitators and better performance when the facilitators were aware of the activities, indicating a high rate of facilitator leading the answers (Braman et al. 1995 ; Simon et al. 1994 ). Beyond studies evaluating whether the message produced originated from the facilitator or the client with a disability, a series of studies examined the effects of FC on collateral skills and compared the use of FC to other means of com-municating. As a result, social interaction and rate of nonfocused interactions Research 120(e.g., echolalia or self-stimulatory vocalizations) were not found to improve following FC instruction (Myles et al. 1996a ). Further, the combination of direct literacy instruction with FC failed to demonstrate improved phonological and numeracy skills (Myles et al. 1996b ). In another study involving reaching com-prehension, participants were unable to correctly answer yes/no, multiple choice, and open- ended questions when their facilitators had not read the books them-selves, though many could correctly answer questions when their facilitators did know the answers (Simpson and Myles 1995a ). When comparing the use of FC to the use of the Picture Exchange Communication System (PECS), Simon et al. ( 1996 ) found that a 14-year old who purportedly used FC was unable to correctly identify objects unseen by the facilitator while using FC, was able to correctly and independently identify every object when using PECS. These studies represent a plethora of attempts to design tasks of various types to provide any possible opportunity to provide evidence for the legitimacy of FC on basic communication skills (e.g., Bebko et al. 1996 ; Beck and Pirovano 1996 ; Bomba et al. 1996 ), academic skills (Myles et al. 1996b ), social interaction, and behavior (Myles et al. 1996a ). Although some of these studies were case studies (e.g., Simon et al. 1996 ), the vast majority were well-controlled group studies. All of these studies included at least some participants with ASD. No well-controlled studies with individuals with ASD were able to produce positive results for FC. What is clear is the tendency for well-designed studies to have found FC to be ineffective, while poorly designed studies that lacked controlled procedures (e.g., anec-dotal reports, qualitative papers) are those that have claimed positive results (Mostert 2001 ). Further, the few positive reports (Calculator and Singer 1992 ) have been criticized (Perry, Bebko, and Bryson 1994 ) for failing to be replicable; that is, simi-lar studies have failed to have positive fi ndings. Beyond the lack of evidence establishing FC as an evidence-based practice and evidence demonstrating facilitator leading, there are additional reasons to be cau-tious in implementation of FC. These cautions relate, primarily, to issues that arise when messages are falsely attributed to the individual with a disability. In the early 1990s, a number of cases involving allegations of child abuse were reported by facilitators whose clients used FC (Hostler et al. 1993 ). These allegations, in many cases, caused children and adults with developmental disabilities to be taken from their families and placed in protective care, causing skill regression and trauma to the children and their families. Further, in at least one case, failure of the court to validate that the message typed was not led by the facilitator has resulted in a pros-ecution (Gorman 1999 ). Hostler et al. ( 1993 ) report a number of allegations of sex-ual abuse were brought in Virginia, noting that in none of the cases were there physical signs of abuse, nor were the patients able to communicate accusations in controlled hospital settings. Similar allegations have been repeatedly falsifi ed through the court and use of simple techniques to test and compare messages typed the facilitators knew the questions asked and when they did not; repeatedly, these tests have indicated that the messages originated from the facilitators (Bligh and Kupperman 1993 ; Gorman 1999 ). Additionally, allegations of sexual abuse against parents of questions by two experienced facilitators who were unfamiliar with the adolescents and their cases (Siegel 1995 ). In combination with the signifi cant evidence that FC messages tend to originate with the facilitator, the repeated false allegations of abuse are a clear signal to avoid use of this means of communication. Ongoing and Recent Resurgence of Interest in FC Given the overwhelming evidence that FC is not effective and, in some cases, may cause harm (Mostert 2010 ), one might question why this topic is still being dis-cussed. Unfortunately, FC and similar methods are still being implemented and pro-moted in the media and by large and established institutions; sometimes by other names (e.g., Supported Typing, Rapid Prompting) despite the similarities. Although debunked, proponents continue to promote the use of FC and state its effi cacy as fact (Mostert 2010 ). Further, the suggestion that FC cannot be measured via tradi-tional means has been likened to religious beliefs, i.e., faith without proof (Mostert 2010 ). It is likely that the promulgation of the Internet also allowed FC to be revived because parents of newly diagnosed children who are not aware of over a decade of research debunking FC are unable to differentiate between trustworthy sources of information and are drawn to extraordinary claims, such as those promoted by FC versus other interventions that are more costly in time and money. The primary promoters of FC are faculty at Syracuse University, where FC had its start in the USA. Despite the evidence of only rare instances in which FC output appeared to be authored by individuals who used AAC (Mostert 2001 ), and the evidence of numerous false allegations of abuse, these individuals continue to pro-mote the use of FC in the media and through professional publications. In part, they are emphasizing the small number of individuals who appear to, following lengthy implementation of FC, begin typing with little or no physical support (Broderick and Kasa-Hendrickson 2001 ). The phrase “appear to” is used in this instance because this information comes from promoters of FC via their anecdotal reports or through video that has been signifi cantly edited to prevent the viewer from deter-mining the degree of facilitation. In some cases, individuals who use FC are described as having emerging speech, while still requiring a signifi cant degree of physical support to use FC. For example, Broderick and KasaHendrickson ( 2001 ) describe an adolescent, Jamie Burke, who, via FC, would type lengthy, complex conversations, though would speak only by reading what was typed or speaking in short phrases or single words, often prompted, when not relying on typed words. This leads to questions regarding the validity of communications that are only more complex when they have been facilitated. Such stories, such as Jamie Burke’s, have been spread via popular magazines as well (Fields-Meyer et al. 2005 ). Individuals with severe autism, such as Sue Rubin, who has appeared in a documentary and on numerous popular magazine and television reports (e.g., Henneberger 2005 ), are described going to college, while continuing to have some degree of facilitation. In videos of such individuals, while it is not made clear the degree of facilitation Ongoing 122required, there is some visible evidence of prompting; for example, the facilitator is often seated in close physical contact, sometimes holds the keyboard and moves it slightly, and often uses nods and head shakes when the person using FC looks at him or her. These videos suggest subtle cueing develops between the facilitator and the individual with autism. Books purportedly written by a person using FC, Tuomas Alatalo, when examined more closely along with video of him communicating via FC (Saloviita and Sariola 2003 ; Sturmey 2003 ), show evidence of discrepancies when different facilitators are used, video in which prerecorded messages were pro-grammed instead of spontaneously typed during interviews, and clips of the facilita-tors looking intently at the keyboard while Mr. Alatalo looked away at the time he was typing, while there is no evidence of a successful test of authorship or that he could read independently, let alone write. Conclusions One might question why facilitators and families become convinced, despite evidence to the contrary, that their clients are suddenly communicating effectively. For one, family members, initially hoping their children will begin to communicate independently, may lose interest in fading prompts as it becomes apparent that the only way their children appear to communicate with great skill is via facilitation, while skills demonstrated independently are inevitably lower level and more sim-plistic (Sjöholm, and Sjöholm 1994 ). It may be that, given the rapid appearance of improvement, facilitators themselves begin to believe that their clients are produc-ing the communications (Konstantareas 1998 ). Further, Simpson and Myles ( 1995b ) reported cases in which facilitators who were found not to have the same level of success with facilitation as other facilitators of the same child were chastised for failing to have faith in the child’s ability to communicate or conduction sessions incorrectly. Such peer pressure could lead to inadvertent false positive results. It is possible that individuals who were originally taught to communicate through facilitation may eventually learn to communicate independently (Biklen 1995 ). Indeed, Bebko et al. ( 1996 ) demonstrated that some individuals who have used FC have been able to perform similarly in independent tasks. However, given that other forms of AAC, such as the PECS and the use of speech-generating devices, have been demonstrated in high-quality studies to have resulted in independent commu-nication (Ganz et al. 2012a , b ), it does not seem worth using FC given the risks. Further, if individuals with autism are able to perform independently, it would be prudent to rapidly fade the use of physical supports and prompts, particularly given the evidence that facilitation may sometimes decrease performance if participants become passive in responding (Bebko et al. 1996 ). Despite the evidence debunking FC, one might question what harm is done by allowing families to believe that their children, previously thought to have severe disabilities, actually have immense intellectual capacity. The dangers are the same as for the u allocated to FC, such as the salary of a dedicated facilitator, that may be used more effi ciently and effi caciously and to provide instruction to the person with autism in effort toward building independence, are instead squandered on a method that requires lifelong dependence. Two, false attribution, such as awarding of unearned degrees and merit, may call to questions all those who have accomplished such achievements honestly, particularly other individuals who use AAC indepen-dently. Three, students who used FC for lengthier periods sometimes appeared to perform better during independent tasks than when facilitated (Bebko et al. 1996 ; Beck and Pirovano 1996 ), indicating that FC may lead to prompt dependence in individuals who could otherwise communicate independently, lessening the odds that communication that was facilitated was truly indicative of their functioning. Use of FC, if the communication is truly coming from the facilitator, will result in development of an assumed personality that is not based on reality (Levine et al. 1994 ). Further, that individual’s true desires are ignored in this case, in favor of falsely attributed wants (Levine et al. 1994 ). Four, when a higher level of educa-tional functioning is demonstrated through FC, other necessary and more appro-priately leveled functional skills may not be taught, resulting in lack of access to educational opportunities and potentially resulting in signifi cant loss of time and opportunity (Levine et al. 1994 ). Understandably, some families may not be convinced until they have tried FC themselves, and unfortunately, their experiences with FC, which often appear to result in discovery of untapped skills and talents, may serve to reinforce the idea that it is effective (Simpson and Myles 1995b ). Although not recommended, if practitioners encounter families who believe FC is effective for their children, the following steps are recommended. First, evaluators may test the originality of the message by showing the client an image that the facilitator cannot see and asking questions about the image that cannot be answered without seeing the image (Konstantareas 1998 ; Shane 1994 ). Second, facilitation and other physical sup-ports and prompts should be faded rapidly. If the individual is unable to use his or her hands to form a message independently, the practitioner should work with other specialists (e.g., occupational therapists, AAC consultants, speech-lan-guage pathologists) to determine whether the problem is physical and requires an adaptation (e.g., head stick pointer) or if the problem is related to cognition (e.g., the individual is not yet reading and requires a drawing or photo-based AAC system). Third, implementers should strongly consider the harm that has resulted from false accusations of abuse when determining whether or not to implement FC and how to communicate to families about FC (Simpson and Myles 1995b ). Fourth, one should consider the consequences of implementing FC, such as the resources of time and money that may be better used otherwise to promote learn-ing of functional skills (Simpson and Myles 1995b ). In conclusion, although there may appear to be benefi ts to using FC and situations in which practitioners are required by family members to use FC, it is highly cautioned against and professional ethics typically require practitioners to provide evidence of the effi -cacy of the interventions they implement, which, in the case of FC, is impossible to provide objectively.
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