Abstract
Purveyors of false treatments frequently claim their treatments are effective, despite a lack of evidence. In some cases, these treatments can lead to dire results. This column examines the use of one such false treatment, facilitated communication, that has reemerged despite a substantial body of evidence discrediting it. A description of the technique is provided along with a summary of the research that disproves facilitated communication. Legal issues related to the use of facilitated communication in school settings are outlined along with recommendations for critically evaluating any potential intervention or treatment.
Concerns over the spread of misleading and sometimes harmful information regarding the treatment and care of individuals with autism have been prevalent for years. For instance, despite the widespread recommendation of medical professionals encouraging childhood vaccinations, the number of people who are choosing to opt out of required vaccinations for nonmedical reasons is increasing, primarily due to the belief that vaccines are unsafe (Siddiqui, Salmon, & Omer, 2013). Much of the fear that vaccines caused harm stemmed from claims that autism is caused by thimerosal, a mercury-based preservative previously used in the MMR (i.e., measles, mumps, rubella combination) vaccine. These claims originated when a former British surgeon, Andrew Wakefield, and his colleagues published a study in a prestigious medical journal the Lancet that suggested there was a link between the MMR vaccine and the onset of symptoms in children with autism (Wakefield et al., 1998). This resulted in a media explosion with more than 1,500 related articles being written about Wakefield, the MMR vaccine, and autism (Offit, 2008).
Subsequently, a wealth of evidence emerged that discredited Wakefield’s claims (Centers for Disease Control and Prevention [CDC], 2015). It was discovered that Wakefield misrepresented or altered the medical histories of all 12 of the patients whose cases formed the basis of the 1998 study, after being paid more than half a million U.S. dollars by a law firm that intended to sue vaccine manufacturers (Offit, 2008). Wakefield’s coauthors withdrew their names from the study in 2004 (Murch et al., 2004), the study was retracted by the editors of the Lancet in 2010, and an ensuing investigation into professional misconduct resulted in Wakefield being permanently barred from practicing medicine in the United Kingdom (General Medical Council, Fitness to Practice Panel Hearing, 2010). In addition, numerous studies have since found no relation between vaccination and rates of autism (CDC, 2015). The data are clear, vaccines do not cause autism; yet people continue to be misled despite an overwhelming amount of empirical evidence that has repeatedly demonstrated the absence of such a link (Ziv, 2015).
The lingering and prevalent fear that vaccines cause autism despite evidence to the contrary illustrates the pervasive nature of claims made by the purveyors of false treatments; once the idea has been promulgated, it is almost impossible to overcome. However, pseudoscientific treatments and discredited practices, such as refraining from vaccination in an effort to prevent autism, are not just limited to medicine. Shunning scientifically validated treatments in favor of treatments that lack empirical support or, worse, have been shown to cause harm is a practice that exists across disciplines, including education. For example, facilitated communication (FC), once promoted as a type of augmentative and alternative communication (AAC) strategy for students with autism, also has since been discredited. Despite multiple studies that have disproven FC, it continues to be promoted as a viable treatment for students with disabilities, particularly in school settings (Lilienfeld, Marshall, Todd, & Shane, 2014).
The reasons why people choose to adopt treatments that lack empirical support, such as FC, over scientifically validated treatments are varied (Smith & Antolovich, 2000). One reason may be a lack of knowledge regarding the evidence that has discredited the practice. Pseudoscientific treatments often are publicized through popular media, such as movies, news articles, and websites. The scientific evidence that discredits these treatments is disseminated by researchers through academic journals whose primary audience is other researchers (Greenwood & Abbott, 2001). Practitioners often do not have access to this information and may not be aware of the evidence that exists to discredit FC and the harm that has come from its implementation. Therefore, the purpose of this article is to counter the claims that FC is an effective form of AAC for individuals with autism by providing practitioners with information about the substantial scientific evidence that exists to refute claims of its effectiveness. This column provides readers with information regarding FC, the scientific evidence that discredits it, and the most recent attempts by some individuals to popularize it once again. Last, legal reasons to avoid the use of FC in a school setting are outlined, and ideas for critically evaluating proposed treatments are provided.
Facilitated Communication
Description of the Technique
FC was purportedly developed to provide a means of communication to individuals with disabilities who had concomitant complex communication needs (i.e., the individual has limited or no functional speech), such as individuals with autism spectrum disorder (Ganz, 2014). The technique involves having a facilitator, usually an adult without disabilities, provide physical support in the form of guiding the client’s hand, arm, or shoulder to assist in the selection of words or letters using a letter board, keyboard, or other AAC device (Crossley, 1992). The FC promoters state that the physical support is provided for emotional support only, rather than to provide aid by physically prompting the client to make a selection on the AAC system (Biklen, Morton, Gold, Berrigan, & Swaminathan, 1992). However, research has disproven this claim. Other aspects of FC include ignoring echolalia and problematic behaviors (e.g., refusing to make a selection), avoiding testing for correct answers (e.g., asking open-ended questions instead of factual ones), and presuming that the client has intact understanding of language and simply needs a supportive means by which to communicate (Biklen et al., 1992).
Evidence Provided by the Proponents
The proponents of FC have made extraordinary claims regarding the efficacy of FC but often rely on anecdotal stories instead of objective data as their primary form of evidence to support its use (Mostert, 2014). In particular, they have made exaggerated claims about the emerging language skills suddenly acquired by FC clients who were previously thought to be unable to read, write, or use any symbolic language. The literature in support of FC has a number of such stories, such as an adult with disabilities who previously was unable to speak or use many manual signs, but after the introduction of FC immediately began typing complete sentences (Crossley, 1992). In another report, a 3-year-old boy with autism was suddenly reported to have displayed spelling and language skills far beyond age expectations, but only via FC (Biklen & Schubert, 1991). Further reports of success in individuals who use FC include persons with ASD displaying higher functioning skills such as (a) participating in extended conversations, (b) apologizing for becoming aggressive, and (c) completing difficult math problems with little prior exposure (Biklen et al., 1992; Crossley, 1992). These claims have a strong appeal to them in that many people would like to believe that individuals with severe disabilities have the ability to produce complex communication if they are simply given a way to do so. However, only anecdotal stories exist with no objective data to support them and are therefore insufficient to qualify as evidence to support FC’s use with students with disabilities (Singer, Horner, Dunlap, & Wang, 2014).
Facilitated Communication Discredited
Although proponents of FC primarily present anecdotal reports and opinions as evidence that misleads people into believing it is a credible treatment, they ignore the more than 19 carefully designed, systematic, data-based studies that have been conducted over the past 25 years that consistently disprove this claim (Singer et al., 2014). These studies, which have been conducted in a variety of conditions, continually demonstrated that FC messages are nearly always authored by the facilitator (Probst, 2005, as cited in Schlosser & Wendt, 2008). In particular, research has demonstrated that FC resulted in poor performance on the part of the client when the client and facilitator were exposed to different visual stimuli and later questioned about them (Bebko, Perry, & Bryson, 1996; Hiroshoren & Gregory, 1995. In fact, in one study clients actually performed better without a facilitator than they did when they were paired with a facilitator who could not see the stimuli (Regal, Rooney, & Wandas, 1994). In addition to visual stimuli, FC has also been tested using auditory stimuli with similar findings (Hudson, Melita, & Arnold, 1993). In cases in which different questions were asked to the facilitator and the client, the questions posed to the facilitators were answered correctly although the clients heard different questions (Hudson et al., 1993). Taken together, these empirical studies clearly indicate that facilitators often highly influence communication produced via FC. Supporters of FC, however, repeatedly dismiss these data (Mostert, 2014; Singer et al., 2014).
Proponents of FC have reported a number of reasons why they reject objective data. For example, despite conventional understanding of the communication deficits common with ASD, FC proponents suggest that sociocommunication delays are due to anxiety, supporting their case that physical and emotional support (Biklen et al., 1992) is the key needed to unlock a client’s ability to communicate. Furthermore, the developers have argued that by testing individuals who use FC, researchers display disbelief in their skills, causing a loss in emotional support and an inability to perform (Biklen, 1996). This argument conveniently discounts any attempts to collect objective data regarding the method and serves to further mislead people by providing an explanation as to why empirical studies disproving the efficacy of FC should be disregarded (Ganz, 2014).
Recent Resurgence
Although some people may believe that FC is no longer a concern, current research challenges that belief. Recent survey data indicate that the use of FC is as high as 9.8% among children with autism in some areas (Lilienfeld et al., 2014). In addition, the results of another survey indicate that the percentage of college students majoring in speech-language pathology who believe that research supports the use of FC among individuals with autism is as high as 100% among undergraduate students and 83% among graduate students in some regions (Price, 2013). The results of these surveys are staggering and indicate that, despite the overwhelming evidence discrediting FC, people are still being deceived by those who promote its use.
Stakeholders have been misled by inaccurate representation of FC as an effective type of AAC system. This appearance is disseminated via popular outlets such as documentaries (e.g., Autism Is a World; Wurzburg, 2004), movies (e.g., Wretches & Jabberers; Wurzburg & Biklen, 2010), books (e.g., I Am Intelligent; Goddard & Goddard, 2012), and websites. Even worse, there are cases in which FC has led to disastrous consequences by being used to falsely accuse family members and service providers of abuse or by attributing written consent for sexual contact to an FC user (Lilienfeld et al., 2014).
Legal Issues
Implementing FC, a discredited intervention, may potentially be a violation of a child’s right to a free public education (Yell, Katsiyannis, Losinski, & Marshall, in press) as it may not meet the “peer reviewed research” requirement of Individuals With Disabilities Education Improvement Act (20 U.S.C.§ 1414(d)(1)(A)(i)(IV)). Although case law involving the use of FC has been limited, focusing primarily on the admissibility of testimony through the use of FC (Winchert, 2015), there have been some public school related cases that deemed the use of FC as unreliable (T.J. v. Winton Woods City School District, 2013). As a whole, the cases suggest that FC is not a legally defensible AAC protocol, whether for use in assessment and placement decisions or as an intervention or related service.
Recommendations for Practitioners
Given the legal consequences of using practices that are not based on objective, peer-reviewed research, the lack of evidence supporting FC as authentic client communication, and the sometimes horrific outcomes of using this protocol, practitioners are urged to abstain from using FC. Although the purveyors of pseudoscientific treatments deceive people by broadcasting emotional, miraculous stories of success that exploit people’s desire to help individuals with disabilities, it is critical for practitioners to resist their efforts. Failure to do so could have tragic consequences. Not only does using false treatments, such as FC, provide false hope to people with disabilities’ loved ones, it also displaces the use of more effective interventions and can lead to even more dire consequences (Mostert, 2014).
To prevent the unintentional adoption of a pseudoscientific or false treatment, practitioners should critically evaluate all interventions before using them with students with disabilities. When evaluating the treatment or intervention, look critically at the evidence that is presented. Is the evidence based solely on anecdotal information, or is there objective data to support its use? Who conducted or funded the research? Was all of the research conducted by the proponents of the treatment, or was the research conducted by independent researchers with no financial interest in the success of the treatment? How many studies are there to support the use of the treatment? By answering these questions, practitioners can critically evaluate proposed treatments to determine if they are valid or if they are false treatments that should be avoided. Valid treatments are more likely to have multiple quantitative studies conducted by independent researchers to support their use, whereas the purveyors of false treatments will typically present subjective, anecdotal accounts of success as the primary evidence of its effectiveness. If false treatments do have objective, quantitative data to support them, they are usually limited in quantity, have questionable research designs, or are conducted by individuals with a personal or financial interest in the treatment.
Conclusion
Despite a wealth of evidence refuting facilitated communication, as well as multiple stories of harm that have resulted from its use, people continue to be misled into thinking it is a valid treatment for individuals with disabilities, particularly individuals with autism. In addition, in light of the legislative requirements mandating the use of treatments that are based on peer-reviewed research, the lack of empirical support for the implementation of FC dictates that professionals should refrain from its use. By critically evaluating proposed treatments before using them with students with disabilities, practitioners can determine if the evidence to support its use is valid or if it is yet another attempt to mislead them by the purveyor of the treatment.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.