“The false and exaggerated claims associated with facilitated communication have been exposed.” (Miles and Simpson, 1996)
Facilitated communication is an issue of contention in some areas of the autism community. Part of the problem is what is meant by facilitated communication. There is little doubt that most people rely on authorities and various heuristics to ascertain the validity of claims rather than taking the time to investigate the research findings for themselves. Even when individuals are willing to take the time and make the effort to wade through research findings, a dizzying array of possible sources awaits them in most subject fields.
As such, even dedicated and skeptical show-me parents are faced with an all but impossible task: how to decide on treatment and therapy modalities for their children. Which experts do you rely on? Is being the dean at a university enough to convey authority and legitimacy (Bilken, major proponent of FC)? Is being a tenured instructor at universities and a scientist who publishes research enough (Boyd Haley and Richard Deth)? What about being a medical doctor and researcher (Wakefield and Krigsman)?
How do parents decide what autism is and what the best way to move forward is to help our children succeed? It is a difficult decision and I empathize with parents who work to do just that and find themselves inundated with people insisting that autistic children are sick, terribly sick, vaccine-damaged and mercury poisoned (buy our products, our way of thinking, and we will recover your child!) or who have a nonverbal, cognitively impaired and noncommunicative child and are sold the idea that inside is a child who is as smart as their non-impaired peers, if only you’ll help at the keyboard (and already knows how to read and the rules of grammar and all that–no need to teach it).
I don’t have any easy answers, but I personally prefer to rely on scientific consensus and a careful reading of the literature before making decisions. Because I’ve read the research on the faultiness of human memory and the unreliability of testimonials and anecdotes, moving stories are insufficient evidence. Looking at the big picture, what studies looking at hundreds and thousands of individuals have found, is the best way to get at the objective truth. It’s still flawed, still imprecise, and so even it must be held with a lack of complete certainty and a willingness to entertain new evidence.
Here, then, is what the consensus of evidence shows as regards facilitated communication.
The idea of facilitated communication is a noble one, and as defined sounds entirely reasonable. Biklen (1991) defined FC as “Facilitated communication involves hand-over-hand or hand-on-forearm support of students as they point to pictures, letters or objects to augment communication. The facilitator does not guide the students to selections but rather stabilizes the student’s movements and in some cases actually slows the person’s hand as he or she points to a Choice” (p. 163).
The Facilitated Communication Institute at Syracuse University defines FC as “one form of augmentative and alternative communication (AAC) that has been an effective means of expression for some individuals with labels of autism and other developmental disabilities. It entails learning to communicate by typing on a keyboard or pointing at letters, images, or other symbols to represent messages. Facilitated communication involves a combination of physical and emotional support to an individual who has difficulties with speech and with intentional pointing (i.e., unassisted typing).” According to the FCI, “The person who provides support is called a facilitator. A facilitator can be a teacher or other professional, a family member or a friend. This support is highly individualized, based on specific needs. Thus it does not look the same from person to person.”
The institute offers workshops for individuals to learn how to be a facilitator and has a thirteen page pdf on facilitator competencies.
The Institute appears to take into account the overwhelming consensus of scientific evidence that points to the lack of efficacy and legitimacy of facilitated communication (see Mostert, 2001 for a literature review pointing to the lack of scientific evidence regarding FC) and offers these provisos:
It appears that this last sentence is an attempt at appeasement; a mere headnod at the overwhelming scientific evidence demonstrating the failure of facilitated communication as a tool to allow those who are nonverbal to communicate. Notice that there is some admission that there has been negative research while still inflating the amount of confirming studies. Ideally, if proponents of FC were willing to ensure the reliability of the individuals’ communications, they would be amenable to research aimed at verifying authorship and would put in place a system of controls to ensure the legitimacy of each individual’s authorship. They would also acknowledge the potentiality for facilitators to subconsciously co-opt the communication process. While the guidelines above have the ring of sincerity, the overall lack of scientific evidence and the unwillingness to admit the problems makes the institute at best pseudoscientific.
Despite the institute’s affiliation with a university and its staffs’ publications, mainstream science still does not hold that FC has any legitimacy. Van Acker (2006) writes in Outlook on Special Education Practice rather negatively about FC:
“Simply put, facilitated communication is a method of augmentative or alternative communication that involves supporting or “facilitating” the arm or hand of a communicatively impaired person while he or she types out a message on a computer keyboard or other device. FC is predicated on the mistaken assumption that many individuals with severe communicative disorders (e.g., those with autism or severe and profound mental retardation) have a level of “undisclosed literacy” that can be “tapped” through this procedure.” (page 10)“The American Psychological Association (1994) adopted a resolution regarding FC in which the APA concluded that it “…is a controversial and unproved communication procedure with no scientifically demonstrated support for its efficacy” (p. 1). Nevertheless, FC continues to gamer support of some in the educational community (Gerlach, 1993) and to stimulate other practices that incorporate aspects of FC.” (page 10)
The Facilitated Communication Institute provides a good history of the movement, noting the work of Biklen and Crossley, both of whom are addressed in criticism of FC. Not all of the criticism is negative. Mostert (2001) notes that Biklen “believed that people without communicative ability, generally regarded as lower functioning than those having some use of language for communication, could not be assumed to be lower functioning because of their obvious expressive deficits” (p. 288). This is an important concept and one well worth exploring, although it appears that Biklen may have gotten overzealous in his assumptions that individuals who had received no exposure or formal education (or informal) could somehow be hyperlexic and that FC was the way to expose this. Mostert writes: “The assumptions of FC proponents, while not well formed and severely challenged (e.g., Hudson, 1995; Jacobson et al., 1995; Shane, 1994), have precipitated several empirical reviews of the effectiveness of FC” (p. 288).
The Institute offers a page entitled FC Validation, which most evidence-based individuals would expect to be filled with references to scholarly research showing that FC had indeed been validated in the literature. Instead, readers find a list of links to people who say it works and research that in fact doesn’t validate it. Skepdic notes that “The FC Institute was established in 1992. It conducts research, provides training to teach people to become facilitators, hosts seminars and conferences, publishes a quarterly newsletter and produces and sells materials promoting FC, including a six-part video series for $50 per video ($250 for the series).”
The AAP (1998) provided the following statements regarding FC in the journal Pediatrics:
(Ziring, pps. 431-432)
The AAP’s recommendation:
Ziring, p. 432).
The Institute is connected to the School of Education of Syracuse University (where Doug Biklen, proponent of FC serves as dean to said department), and perhaps this is an explanation for the lack of scientific evidence. It certainly points to a weakness in the training of our educators. Having taken education courses both at the undergraduate and graduate levels, I can at least personally attest that it is often not an evidence-based practice, but instead one based on philosophical grounds (see here for an example).
There are tremendous problems with a discipline that is not evidence-based, and for Syracuse University to place the School of Education in the hands of an individual who continues to promote as effective and legitimate a therapy thoroughly discredited is discouraging. Mostert (2002) notes that special education textbooks are rife with inaccuracies, writing: “Despite the incontrovertible empirical evidence that facilitated communication (FC) is a completely ineffective intervention, readers should be aware that it is promoted positively in a current special education college textbook” (p. 239).
Lest readers think that criticism is restricted to the scientific field, even the legal field has weighed in on the lack of credibility for facilitated communication: Gorman(1999) writes “FC is criticized because it lacks empirical support,5frequently results in accusa-tions of abuse,6 and often raises false hope.7Despite criticism, Biklen continues to promote FC, and many continue to practice the technique” (p. 518).
Norton (2006), writing in Skeptic, discusses studies that incidentally occurred after 1994 (hmmm, bias that the institute stops with 94?) and their complete rejection of FC’s legitimacy: “These studies, along with many others, failed to validate the claims of FC advocates. 9 The empirical data were clear. It was not the autistic children who were authoring the typed messages, but their facilitators.”
Alferink (2007) is fairly damning in his assessment of facilitated communication:
“Observation of the use of facilitated communication showed that children often were not looking at the keyboard when they typed (Shane, 1994a), a task that is impossible without a reference point as is used in touch typing. Research with appropriate controls showed that it was the facilitator and not the child who was responsible for keying in the messages (Green, 1994; Jacobson, et al., 2005), a finding that has been replicated repeatedly. Yet, facilitated communication continues to be widely practiced by those who are either unaware of this research, or who choose to ignore it.” (p. 22)
There is little doubt that the testimonials offered by proponents of FC can be compelling and heartwarming, just as the stories by parents who believe their children’s autism was caused by vaccine injury can be emotionally overwhelming and harrowing. That doesn’t make the testimonials accurate or reliable. They are anecdote and the product of confirmation bias, availability heuristic and self-justification. Where objective measures cannot validly replicate the assertions, one who is evidence-based and aware of the faultiness of memory and the frailty of the human ego with the individual’s need to reduce dissonance must err on the side of caution and be skeptical of the claims presented.
For example, Brandl (2001) writes a moving testimonial to her four decades of teaching children with impairments. She admits her naivety and lack of supports, her inadequate preparation to deal with the population, and her tremendous desire to make a difference, wonderful admissions to make, as asserting the first three shows a lack of hubris. Her story lets us see how someone who wants to make a difference can reach out for any tool that promises to help her do so and how that intense desire can reduce skepticism and the need for empirical validity. Did FC work for her student population? She says it did, but it never rises above testimonial. Blandl writes:
“ Most of us agreed we would happily leave our positions if these disturbed but charming kids no longer needed us some day! Dealing on a daily basis with severe self-abuse, aggression, and destructiveness helped me understand why such children could not live at home or attend general schools. But very little was known or understood about autism. In fact, we were still affected by lingering beliefs that it was caused by poor parenting and “refrigerator mothers.” This was the latter part of the 1970s and, I believe, one of the better institutions. We knew very little, and we helped very few kids.”
Having moved through the educational system over the last forty years and seen the incredible changes in how thinking about individuals with impairments are viewed, Blandl has a frontline perspective, not an objective scientific perspective. FC provides hope, hope that hidden inside “disturbed but charming kids” there’s a normally functioning child waiting to get out who already knows how to read, write, and do schoolwork. Blandl takes readers into her experience as she hears about FC: “Then I heard about facilitated communication (FC). I saw the first TV presentation on this new method being used with individuals who looked and acted so much like many of my former students. I was skeptical but intrigued.”
She may assert her skepticism, but she quickly is won over to FC and never looks back. Whether her students improved because of FC itself or because they benefited from the touch and the one-on-one attention is not at all clear. And there is no evidence, since this a teacher’s story. There’s no empirical data and no way to ascertain the legitimacy of the claims. It is an example of why testimonials, stirring as they are, are not and can never be evidence of efficacy. Her dedication and her genuine desire to make a difference, to promote inclusion of these students and her apparent appreciation for these individuals cannot be denied.
There are ways for educators to assess the reliability of the facilitated communication. Kerrin et al. (1998) notes that the claims that the early proponents of FC make regarding autistic individuals and the idea that they are indeed hyperlexic (as Biklen contends) is counter to the diagnostic criteria: “This is particularly remarkable because, according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV; American Psychiatric Association, 1994), one of the defining characteristics of autism is difficulty in communication. The form of the communication disorder ranges from inappropriate use of syntactic forms (e.g., pronoun reversals) or unusual intonation patterns to no speech whatsoever. In addition, individuals with autism often seem to lack a desire to communicate with others.” *While, a lack of desire may be apparent in some individuals, it is not clear that this is true in the majority of cases–the problem here is the temptation to apply the availability heuristic here and recall all the autistic people we know (or ourselves if we are on the spectrum) and assume it to be representative of the full range of individuals on the spectrum. At this point in time, there does not appear to be a clear statistical picture of where most individuals diagnosed on the spectrum would fall on this–nor whether an inability to communicate verbally (through language, either written or oral) is indicative of a lack of desire to communicate. I would caution readers that their natural inclination to leap to a conclusion based on what they can personally recall or think of is not necessarily indicative of objective reality.*
Overwhelmingly, most literature reviews of FC find that it is not a reliable or effective communication tool Study after study denounces its legitimacy. Kerrin et al. found:
“This study supports the findings of Eberlin et al. (1993), Myles and Simpson (1994), Smith et al. (1994), Vazquez (1994), and others who have tried to discover objective evidence in support of FC. The participants responded more accurately when the SLP/facilitator could see, in spite of the fact that the SLP/facilitator did not think she was influencing the students’ responses and did not intentionally do so.”
Kerrin et al. goes beyond the question of authorship and suggest that their method could be useful in the classroom setting to determine authorship. The method they use in their study, Kerrin et al. write, provides a “simple yet effective method of assessing authorship of facilitated responses in an actual classroom setting. Replicating the methods used in this study could provide a way for teachers, speech-language pathologists, and others to determine who is really doing the pointing.”
Miles and Simpson (1996), noting that the evidence showed that FC was not a valid tool, tested whether it had any value as an educational tool and concluded, after conducting a study to assess its use as a tool that:
“The results of this study clearly do not support FC as an educational tool. Indeed, whether subjects were evaluated via a traditional strategy, with FC, or with the FC control condition, they averaged below-chance performance or only slightly above chance performance in identifying letters, corresponding letters and their sounds, numbers and positional words; and in demonstrating understanding of one-to-one correspondence and matching positional words and objects. Because there were four response options for each task, one would expect the subjects to have a 25% correct response rate on the basis of chance alone. Accordingly, we are of the opinion that the undeniable conclusion is that individuals who participated in the study revealed a failure to demonstrate knowledge of basic, independent academic skills.”
Finn et al. (2005) analyzed various forms of treatment for communication disorders based on ten criteria for pseudoscience and found that facilitated communication met 8 of the 10 criteria for pseudoscience: untestable, unchanged, confirming evidence, anecdotal evidence, inadequate disconnected, grandiose outcomes and holistic:
“The largest point of contention in the facilitated communication debates is, essentially, that the demonstrations of effectiveness seem to come from situations in which the facilitator knows the answer or could be the source of the information, and that tests in which the facilitator cannot know the answer tend to show that facilitated communication breaks down (e.g., Mostert, 2001; Shane&Kearns, 1994). This issue appears as arguments that can be described in terms of several of the criteria for pseudoscience: whether claims of facilitated communication’s effectiveness are phrased clearly enough to be testable (Criterion 1; see Mostert, 2001); why facilitated communication’s proponents have allowed it to continue to be used, essentially unchanged, in the face of conflicting evidence (Criterion 2; see Biklen&Cardinal, 1997); whether the support for facilitated communication is based only on confirming evidence (Criterion 3) or anecdotal evidence (Criterion 4), failing to incorporate the conflicting evidence and the evidence from controlled studies (e.g., Mostert, 2001; Shane&Kearns, 1994); and whether adequate proof is provided to support the rather amazing claims that persons with moderate to profound disabilities can write complex language after all (Criteria 5 and 9; see, e.g., Green&Shane, 1994; Mostert, 2001).
There are also substantial debates about what Mostert (2001) calls the theoretical or conceptual underpinnings of facilitated communication, including Biklen’s (1990) original explanations that autism is a disorder simply of expression, not of language or cognition; these are debates about whether facilitated communication is disconnected (Criterion 7) from more generally accepted descriptions of autism, mental retardation, and other problems. The debates also clearly address questions related to what facilitated communication’s critics see as grandiose claims (Criterion 9) of almost unbelievable outcomes. The debates about facilitated communication also provide an example, finally, of what the pseudoscience criteria refer to as holistic claims (Criterion 10).” (p. 181).
Even current scientific consensus finds nothing regarding the efficacy or legitimacy of FC has changed, although the rhetoric of its proponents has. Mostert (2010) writes: ”However, the FC literature since 2001 also shows increasing acceptance of the technique, ignoring empirical findings to the contrary. Further, more recent pro-FC literature has moved beyond acknowledging that FC is “controversial” to a working assumption that it is an effective and legitimate intervention” (abstract).
To say one takes a position on the scientific validity of facilitated communication is not the same as deriding the individuals who work with students with impairments and who genuinely wish to help them communicate with the world at large. It’s also possible that where Blandl uses the terminology facilitated communication that in large part she means augmented communication. Where individuals can independently utilize computers and keyboards to communicate, the communication cannot be said to be facilitated. We have moved to a different type of communication. Where consistency in answers can be demonstrated, where authorship can be verified, then I would argue, you have a clear indicator that the individual is using augmented communication, not facilitated.
If facilitated communication appears overall to be the work not of the individual but is instead the agency of the facilitator, why do facilitators insist that the communications are originating from their clients and not themselves? These are not people who are willfully taking advantage of their clients; they are dedicated professionals like Brandl who dedicate their careers to helping the impaired. Wegner et al. (2003) investigated these questions regarding authorship and the facilitators’s states of mind. Wegner et al. found that their “experiments render authorship confusion even more starkly, as they show projection of action to others under conditions when the other is entirely inert. In everyday social settings, the processes at work here might continue to apply, however, whenever a person believes that some other agent could conceivably be the source of an action the person has performed” (p. 17).
It is important to remember that we are poor gauges of causality, that we are often unaware of when and how we are primed to give certain answers, and that when we want something badly, we have a way of making the things we believe will occur happen. Wegner et al. found that:
“Belief in the possibility of FC brought with it a set of associated perceptions. People who were led to believe, or who happened to be believers, tended then to perceive that they could read the communicator’s muscle movements. They even reported feeling a pulse coming from the communicator’s fingers when this could not have happened, whereas those who did not believe reported not perceiving movement. Belief in FC provided a context for interpretation of the actions that were produced, allowing the participants to view the answers as emanating from the communicator and not from themselves” (p. 16).
Facilitate communication provides an apparent dead-end. While the use of augmented communication tools should be pursued for children who are unable to communicate orally, it is important to put in safeguards to make sure that the individual using the tool is in fact the one communicating. It is not enough to rely on a facilitators’ good intentions and promise that the communication originates with the individual and not the facilitator. Just as thousands of parents have spun themselves a tale of vaccine-induced damage for their children’s autism, along with the cry that thousands of parents can’t be wrong, science shows clearly that, yes, they can be and often are. We are none of us infallible and none with perfect recall. We see what we wish to be, and we rewrite our tales to match our present. Parents and educators who want desperately to communicate with non-responsive children have every reason to believe that FC is real and genuine and little reason to openly listen to the science. It’s another one of those instances of self-justifying to reduce the dissonance.
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