Evidence-Based Communication Assessment and Intervention

ISSN: 1748-9539 (Print) 1748-9547 (Online) Journal homepage: http://www.tandfonline.com/loi/tebc20

The persistence of fad interventions in the face of negative scientific evidence: Facilitated communication for autism as a case example

Scott O. Lilienfeld, Julia Marshall, James T. Todd & Howard C. Shane

To cite this article: Scott O. Lilienfeld, Julia Marshall, James T. Todd & Howard C. Shane (2014) The persistence of fad interventions in the face of negative scientific evidence: Facilitated communication for autism as a case example, Evidence-Based Communication Assessment and Intervention, 8:2, 62-101, DOI: 10.1080/17489539.2014.976332

To link to this article: http://dx.doi.org/10.1080/17489539.2014.976332

Published online: 02 Feb 2015.

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Download by: [University of Lethbridge] Date: 05 October 2015, At: 05:52 Evidence-Based Communication Assessment and Intervention, 2014 Vol. 8, No. 2, 62–101, http://dx.doi.org/10.1080/17489539.2014.976332 EBP Advancement Corner The persistence of fad interventions in the face of negative scientific evidence: Facilitated communication for autism as a case example Scott O. Lilienfeld1, Julia Marshall1, James T. Todd2 & Howard C. Shane3 1Department of Psychology, Emory University, Atlanta, GA, USA, 2Department of Psychology, Eastern Michigan University, Ypsilanti, MI, USA, 3Boston Children’s Hospital, Boston, MA, USA ...... Abstract Communication disorder and mental health professionals may assume that once novel clinical techniques have been refuted by research, they will be promptly abandoned. Using facilitated communication (FC) for autism as a recent case example, we provide evidence to the contrary. Although FC was scientifically dis- credited by the mid-to-late 1990s, data we review demonstrate that it is still frequently administered in clini- cal and educational settings. We examine evidence for FC’s (a) continued use as an intervention for autism, (b) persistence in academic and institutional settings, (c) popularity in online and print sources, (d) promotion in the media, and (e) ongoing risk to caregivers accused of sexual abuse. We analyze the sources of these troubling developments, explore their ethical implications, and offer recommendations for addressing the spread of FC and other fad interventions.

Keywords: Fads; Autism; Autism spectrum disorder; Developmental disabilities; Facilitated communi- cation; Treatment; Science–practice gap.

INTRODUCTION a trend that has received scant attention— namely, the propensity of certain interven- The past is never dead. In fact, it’s not tions to endure in the practice community even past (Faulkner, 1950). well after researchers have discredited them (see also Kurzban, 2011, on “zombie As Santayana wrote, those who forget the psychology,” or erroneous ideas about the past are doomed to repeat it (see Thomas, mind that will not disappear). In this arti- 2007). The legacies of pseudoscientific and cle, we examine a recent example of this otherwise unsupported practices in com- phenomenon with an eye to better under- munication disorders, psychology, and standing its sources: the persistence and likely resurgence of facilitated communica- Downloaded by [University of Lethbridge] at 05:52 05 October 2015 allied disciplines impart a sobering lesson: Ineffective techniques may persist long tion (FC) for individuals with autism 1 after they have been debunked. Tradition- spectrum disorder (ASD) and other ally, fads are defined as short-lived fash- developmental disabilities. ions that disappear about as abruptly as they emerged (Best, 2006; Paris, 2013; 1 Vyse, 2005). Nevertheless, the fields of The formal term for autism in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition communication disorders, as well as clini- (DSM–5; American Psychiatric Association, cal, counseling, school, and educational 2013) is now autism spectrum disorder. Never- psychology, have often been bedeviled by theless, because most of the literature on FC antedated DSM–5, we use the terms “autism” For correspondence: Scott O. Lilienfeld. E-mail: and “autism spectrum disorder” interchangeably [email protected] in this manuscript.

© 2015 Taylor & Francis This article was originally published with errors. This version has been amended. Please see Corrigendum (http://dx.doi.org/ 10.1080/17489539.2014.1026026). EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 63

Many communication disorders and other being scientific consensus regarding mental health professionals are probably a technique’s ineffectiveness. Indeed, in aware that in the early 1990s, FC became attempting to explain why secretin and immensely popular in educational and vision therapy, two interventions once clinical circles as a means of establishing widely embraced for the treatment of aut- expressive communication among non- ism, had declined markedly in popularity, speaking individuals with autism and other Huang, Seshadri, Matthews, and Ostfeld disorders (Green, 1994; Green & Shane, (2013) conjectured that “these interven- 1994). They probably also know that by tions have been formally studied and the mid- to late-1990s, FC had been con- found to be ineffective” (p. 750). In an vincingly refuted by controlled research overarching analysis, Overholser (2014) and overwhelmingly rejected by the scien- proposed the “modal life cycle” of psycho- tific community (Jacobson, Foxx, & logical fads. According to Overholser, Mulick, 2005; Jacobson, Mulick, & toward the end of this life cycle: Schwartz, 1995; Mostert, 2001, 2010; Probst, 2005; Shane & Kearns, 1994). The fad is evaluated in a more objective Professionals in the fields of communica- manner (Carson et al., 1999). A state of disenchantment ensues. Results tend to tions disorders and mental health may reveal the true mediocre effectiveness and therefore be surprised to learn that FC common limitations of the new approach. remains alive and well in much of the As evidence accumulates, the fad may be mainstream autism and developmental dis- dismissed and quietly discarded, as is the abilities community, and that it seems to fate of many fad innovations. Alterna- tively, some fad ideas (e.g., systematic be staging a broader comeback (Hagen, desensitization, dialectical behavior ther- 2012; Heinzen, Lilienfeld, & Nolan, apy) are found to be effective and they in press; Travers, Tincani, & Lang, in become integrated within modern press). In this article, we examine evidence accepted practices. (p. 53) for the surprising persistence of FC and explore the implications of this phenome- Overholser’s description implies the exis- non for communication disorders, psychol- tence of two principal routes for fad inter- ogy, psychiatry, and allied fields. Before ventions: Such techniques are either (a) doing so, however, we place FC within the scientifically discredited and then promptly broader context of fads in mental health. jettisoned (e.g., Huang et al., 2013)or(b) corroborated by scientific research and then assimilated into the mainstream of Downloaded by [University of Lethbridge] at 05:52 05 October 2015 clinical practice. THE PSYCHOLOGY AND SOCIOLOGY OF FAD In contrast, we posit the existence of a TECHNIQUES third pathway, as exemplified by FC. In Researchers and practitioners may assume this alternative trajectory, the fad method that once a novel technique has been is refuted by scientific evidence. Or, closer demonstrated to be ineffective, it will be examination reveals that the technique rapidly abandoned by its proponents. For was devoid of scientific plausibility. Even example, Shorter (2013) pointed to “scien- so, the fad persists, and sometimes thrives, tific disproof”—that is, “demolishing a in “underground form” in sizeable sectors notion with scientific data” (p. 557)—as of the clinical or educational communities. one of two approaches to putting a halt to The fad may acquire a sufficient cachet of psychiatric and psychological fads, the respectability to be tolerated as a fringe 64 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

activity within otherwise reputable profes- individuals (Loftus, 1993; McNally, 2003) sional groups and scholarly departments. and that genuine recovered memories Its popularity will often be sustained by unearthed in psychotherapy are exceed- the activities of members of tightly knit, ingly rare and perhaps nonexistent social-media-based support groups. Or, it (Geraerts et al., 2007). Nevertheless, recent may become normalized because the num- survey data point to a sizeable science– ber of researchers concerned about its practice gap in beliefs concerning recov- credibility is extremely low. Although ered memory techniques (Patihis, Ho, these conjectures are plausible, scant Tingen, Lilienfeld, & Loftus, 2014). For attention has been devoted to the theoreti- example, although only 16.1% of clinical cally and pragmatically important question psychology researchers agreed that of why certain fads collapse under their “repressed memories can be retrieved in own weight after being discredited, memory accurately,” this percentage was whereas others endure and even flourish. 43.1% among clinical psychology The largely untold story of FC’s persis- practitioners. It was even higher among tence, we contend, may shed light on this psychoanalysts (47.5%) and hypnothera- conundrum. pists (54%). Two high-profile examples in addition to In the case of FC, DARE, suggestive FC illustrate the third pathway for fad memory techniques, and other scientifi- techniques (see also Finn, 2008, for illus- cally discredited but still widely used trations in the communication disorders techniques, such as energy therapies for field). First, we consider the immensely trauma (see Pignotti & Thyer, 2009, for a popular Drug Abuse Resistance and Educa- review), we can observe a fairly consistent tion (DARE) program, with its ubiquitous life cycle. Researchers subject these meth- bumper stickers and T-shirts. Developed in ods to empirical scrutiny and find them to 1983 by the Los Angeles Police Depart- be largely or entirely wanting. ment, DARE asks uniformed police officers Soon after, scientists who initially had to enter schools to warn students about an interest in subjecting the fad to con- the perils of drug use. Controlled data con- trolled investigation may move on to pur- sistently show that DARE is ineffective for sue other topics. Academic researchers decreasing schoolchildren’s risk for sub- may see less of the fad, or at least less stance abuse (Lynam et al., 1999; Pan & active controversy, and assume incorrectly Bai, 2009). Despite this evidence, DARE that it has been all but abandoned by prac- remains immensely popular; according to titioners. In the words of Mostert (2010): Downloaded by [University of Lethbridge] at 05:52 05 October 2015 the program website, it has been imple- mented in 75% of U.S. school districts and Optimistically, perhaps, empiricists 43 countries (Lilienfeld & Arkowitz, 2014). assume that when any intervention is clearly demonstrated to be ineffective (or A second example is the persistence of even harmful) and that its ineffectiveness beliefs regarding the use of suggestive is clearly communicated to the field, techniques, such as hypnosis, guided imag- practitioners will usually implement ery, and repeated prompting, to recover more effective interventions. However, as ostensible memories of childhood trauma. with other suspect approaches through- out the history of special education, this Most controlled data suggest that these is often a false assumption and certainly techniques confer a substantially height- a problematic assumption regarding FC. ened risk of false memories in many (p. 39) EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 65

In this third pathway, what would other- in the pages of academic journals may wise be a passing fad transmogrifies into a continue to prosper in the undergrounds “chronic malignancy” (Kozloff, 2005; Paris, of the clinical and educational worlds. 2013), a dubious idea that takes on a life Many communication disorders specialists of its own, becoming entrenched in clinical and psychologists may assume that once or educational practice. The surprising and they have conducted studies to expose the largely unknown story of FC’s persistence ineffectiveness of a novel intervention, may shed light on this puzzling phenome- their work is essentially done. The story of non and, more generally, on the “science– FC’s persistence in the face of negative practice gap”—the wide chasm between data implies a different conclusion: Their the research evidence for interventions real work may have just begun. In this and their routine clinical use (Lilienfeld, respect, their task is not fundamentally Ritschel, Lynn, Cautin, & Latzman, 2013; different from that of researchers who Tavris, 2003). have demonstrated the efficacy of a novel For three reasons, the tenacity of FC intervention, whose most daunting chal- should be of paramount importance to lenge is often the dissemination of this professionals in communications disorders technique to potentially reluctant practi- and mental health. First, because FC (a) tioners (Lilienfeld et al., 2013). often instills false hopes among parents and other loved ones of individuals with autism (Todd, 2012), (b) has been associ- HISTORY OF FACILITATED COMMUNICATION: A ated with numerous uncorroborated alle- REPRISE gations of abuse among the caregivers of individuals with autism (Boynton, 2012; The early history of FC has been recounted Konstantareas & Gravelle 1998; Margolin, extensively in a variety of sources (Dillon, 1994), and (c) may incur opportunity 1993; Green, 1994; Hudson, 1995; costs, such as forgoing effective treatment Jacobson et al., 1995; Offit, 2008; Shane, (e.g., Moon, 2010), FC’s continued use is 1994). Hence, we reprise it only briefly to of substantial concern in its own right. All provide readers with a historical context of these considerations suggest that the for more recent developments. false hopes spurred by FC are far from innocuous for individuals with autism and The spectacular rise of facilitated their caregivers. Second, the tale of FC’s communication persistence may offer valuable clues con- Downloaded by [University of Lethbridge] at 05:52 05 October 2015 cerning the broader question of why cer- By the late 1980s, the overwhelming aca- tain fads become extinct, whereas others demic and clinical consensus was that aut- evolve into chronic malignancies (see ism is a largely neurological condition. In Paris, 2013). Third, FC’s persistence affords addition, there was nearly universal agree- a powerful object lesson regarding the ment that autism is often or usually associ- real-world perils of the science–practice ated with intellectual disability and that gap and raises important questions regard- severe impairment in communication is a ing professionals’ and academics’ ethical core feature of the disorder. For example, obligations in the face of scientifically dis- the third edition of the Diagnostic and Statisti- credited but still widely practiced interven- cal Manual of Mental Disorders (DSM–III; tions. In particular, the tale of FC reminds American Psychiatric Association, 1980) us that treatments that have been refuted listed “gross deficits in language 66 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

development” (p. 89) as a necessary criterion facilitator who stabilizes the person’s hand for the diagnosis of infantile autism. Consis- movements, the individual can type out tent with this view were findings that a sub- words and sentences by sequentially stantial proportion, perhaps half, of selecting letters on a keyboard, keyboard individuals with autism are largely or entirely facsimile, letter pad, or similar device mute (Rutter, 1968). These individuals were (Biklen et al., 1992; Crossley & McDonald, widely assumed to be not merely uncommu- 1980). Over time, direct physical control of nicative, but incapable of anything but the the hand or wrist by the facilitator is faded most rudimentary language. For many com- up the arm to the shoulder, and eventually munication disorder and mental health pro- removed (Crossley, 1994). fessionals, however, that overwhelming Over time, the activities at Crossley’s consensus was about to change. Melbourne center came to attract increas- The FC story traces its roots to 1977 to ing attention. There, in 1989, Douglas St. Nicholas Hospital, an institution for Biklen, sociologist and Professor of Special individuals with intellectual and physical Education at Syracuse University, observed disabilities in Melbourne, Australia Crossley’s methods and promptly unveiled (Crossley & McDonald, 1980). There, staff the startling news of FC’s apparent effec- member Rosemary Crossley developed a tiveness in a 1990 article in the Harvard technique—which she originally termed Educational Review (Biklen, 1990). Accord- “facilitated communication training”—for ing to Biklen, 21 individuals who could not purportedly extracting communication otherwise communicate or function inde- from individuals with serious physical dis- pendently had typed their thoughts and abilities that often precluded speech, such conversed with him at previously unheard- as cerebral palsy (Jacobson et al., 1995). of levels of linguistic and cognitive sophisti- Nevertheless, it was soon implemented for cation. Many composed eloquent poetry a host of other conditions, ranging from that told of their profound joy at being lib- autism to coma (Palfreman, 1993). erated from a life of silence. Some even The premise of FC was straightforward: typed the first time a facilitator provided Despite outward appearances, widespread support, thereby ostensibly revealing “hid- beliefs, and rigorous standardized cognitive den literacy” (see Biklen et al., 1992; testing, nonverbal people with autism and Konstantareas & Gravelle, 1998). other developmental disabilities are usually Biklen and a growing number of collabo- of reasonably normal intelligence. Never- rators in the United States soon incorpo- theless, they cannot express themselves rated FC into the academic and clinical Downloaded by [University of Lethbridge] at 05:52 05 October 2015 due to a neurological condition that came mainstreams. Within two years of the publi- to be known as “developmental” or “oral– cation of his 1990 article, and before he or motor” apraxia, a hypothesized disconnec- others had conducted any methodologically tion between the motor and language sys- sound research in support of FC, Biklen tems of the brain that precludes direct founded the Facilitated Communication communication (Biklen et al., 1992). (FC) Institute at Syracuse University. This Although apraxia is a genuine neurological institute promoted FC, but did not encour- condition, the notion that it would prevent age or conduct controlled studies to subject a person from being able to point to letters the central question of the authorship of FC on a keyboard or letter board is entirely communications to stringent tests. unsubstantiated. Nevertheless, Crossley Soon, FC training workshops were and others proposed that with the aid of a established and grew exponentially in EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 67

popularity, attracting thousands of Tonight, however, you are going to see participants, many of whom observed live something that has changed that. Call it a facilitated presentations. Brochures and miracle. Call it an awakening. (See Palfr- eman, 1993) training materials were printed and distrib- uted to thousands, and probably tens of Popular books, often written by, or with thousands, of would-be facilitators. A news- the collaboration of, academic authors, letter, the Facilitated Communication Digest, extolled FC’s benefits (e.g., Martin, 1994; soon followed. Additional centers of activity Sellin, 1993). arose at the University of Maine and the FC had launched a revolution. It University of Wisconsin–Madison. FC appeared to be a breakthrough not merely instructional manuals were widely dissemi- in the treatment of autism, but in our very nated (e.g., Berger & Kilpatrick, 1992;Olsen, understanding of the condition. Individuals Gurry, Larkin, & McSheehan, 1992). Cre- with autism, FC advocates and most media dentialed practitioners, teachers, parents, outlets proclaimed, are cognitively and and lay enthusiasts, many trained by emotionally normal people trapped inside Biklen’s associates in Syracuse-sponsored of an abnormal body. workshops, began administering the tech- nique in schools, homes, and treatment cen- ters (Palfreman, 1993; Wheeler et al., 1993). Facilitated communication and sexual Children who could not toilet themselves abuse allegations independently or be left alone were placed It was not long, however, before a dark side with facilitators in typical classrooms. It to FC emerged. Along with the poems and would not be long before FC was used in col- school assignments, uncorroborated facili- lege courses to assist students with note- and tated allegations of sexual abuse implicating exam-taking (Kochmeister, 1999). numerous parents and caregivers—a prob- The rise of FC was abetted by the news lem already seen in Australia—began to and entertainment media. In addition to appear (Palfreman, 1993; Rimland, 1992a, articles and notices in academic outlets, in 1992b, 1992c; Shane, 1994). A 1994 review 1991, Biklen was featured in a piece in the unearthed five dozen such cases, with New York Times Magazine, which touted FC untold numbers of others never reaching as a remarkable innovation in autism public visibility (Lilienfeld, 2007; Margolin, treatment. Soon, dozens of newspapers 1994). In several instances, children were and magazines, including Reader’s Digest, removed for an extended time from their Parade magazine, USA Today, and The

Downloaded by [University of Lethbridge] at 05:52 05 October 2015 parents. Some people were jailed, their rep- Washington Post, published laudatory stories utations perhaps permanently tainted by on FC, most without noting that the tech- the horrific accusations (Gorman, 1998; nique had not been subjected to controlled Palfreman, 1993). In one 1991 case in tests (Mostert, 2012; Mulick, Jacobson, & upstate New York, a 14-year-old girl with Kobe, 1993). In 1992, ABC’s Prime Time autism, Jenny Storch, was removed from Live television show featured a segment on her home after her facilitator generated FC, with host Diane Sawyer introducing over 200 brutal rape allegations against her the piece by informing viewers that: father Mark. These accusations were never For decades, autism has been a dark mys- corroborated. Mark Storch, who spent time tery, a disorder that seems to turn children in jail awaiting trial, sued Biklen and in on themselves, against the world. Syracuse University for $10,000,000 for 68 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

their roles in promoting FC in the absence what FC advocates had not: subject the of scientific evidence, but lost on First technique to rigorous controlled investiga- Amendment grounds. tions. The source of messages arising from The reasons for these and other abuse FC is readily ascertained and can be allegations are unknown. Because individ- detected using methods established centu- uals with developmental disabilities, ries ago (Mill, 1846; Pfungst, 1907; including those with ASD, are frequently Wilkens, 1641). In general, two experi- victims of sexual abuse (Brown-Lavoie, mental paradigms have been used to Vieciili, & Weiss, 2014; McEachern, 2012; examine FC, both of which hinge on con- Sullivan & Knutson, 2000), however, some trolling and accounting for the transmis- facilitators may have been suspicious of sion of specific information to each the caregivers of children with autism. participant (Shane, 1994). In the first Moreover, the view that sexual trauma lies method, the “message passing” paradigm, at the core of many or most forms of psy- researchers typically display a simple object chopathology, including autism, remains or word, give an instruction, or ask a ques- common in some segments of the psycho- tion with the facilitator either (a) present logical and educational communities (e.g., with or (b) absent from the participant. Ross and Pan (1995)). These hypotheses The participant is then asked to respond aside, the majority of FC-produced abuse appropriately. Facilitation in Condition (a) allegations were never corroborated, and is usually successful and establishes that most cases were dropped prior to trial the setting is favorable for facilitation. The (Howlin, 2011; Margolin, 1994). Even the question is whether facilitation in Condi- few accusations that were seemingly con- tion (b) will be similarly successful. If firmed by confessions or other evidence authorship of the communication is attrib- were not corroborated by a methodologi- utable to the subject, it should not matter cally sound validation of the subject’s abil- whether the facilitator saw the item in ity to communicate with FC, and may question. In the second, “double-blind,” have been contaminated by facilitators’ paradigm, the facilitator and subject each independent knowledge of the parents’ receive the same or different information, history (Botash, Babuts, Mitchell, O’Hara, instructions, or questions, each unaware of Lynch, & Manuel, 1994; Lilienfeld, 2005). the other’s experience. If authorship of the Moreover, the number of caregivers communication is attributable to the sub- accused of abuse may have been suffi- ject, the output should correspond to the ciently high that at least a few might have subject’s experience. If the response Downloaded by [University of Lethbridge] at 05:52 05 October 2015 been guilty by chance alone. In any case, instead corresponds to the facilitator’s it is evident that these accusations, many experience, facilitator control is demon- of which were immensely destructive to strated. families, were based on insufficient evi- The outcomes of early experimental tests dence. on FC were overwhelmingly negative, and nothing has changed in subsequent years to alter this conclusion (e.g., Bomba, Markowitz, O’Donnell, & Holmes, 1996; THE SCIENTIFIC DISCREDITING OF FACILITATED Moore, Donovan, & Hudson, 1993; COMMUNICATION Salovitta, Lepannen, & Ojalammi, 2014; Within a few years of FC’s introduction to Shane & Kearns, 1994; Smith, Haas, & the United States, researchers began to do Belcher, 1994; Wheeler, Jacobson, Paglieri, EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 69

& Schwartz, 1993). As summarized by the By means of mutual operant shaping, the American Psychological Association (APA) facilitator and subject gradually learn to website on FC, “The short version of this adjust to each other’s subtle movements. long story is that study after study showed Over time, facilitators become convinced, that facilitated communication didn’t really and frequently insist, that they are merely work” (APA, 2003). Specifically, the results offering resistance to the child’s hands, not of properly controlled studies revealed actively guiding them (e.g., Rubin & consistent evidence of inadvertent facilita- Rubin, 2005). Yet, the data on FC clearly tor control over the communications: demonstrate that they are in control, even Reliably correct responses were typed only though they are typically unaware of their when the facilitator was aware of the rele- inadvertent authorship of the messages vant information. Moreover, in double- (Kezuka, 1997; Shane & Kearns, 1994; blind studies, when words were typed, Wegner, Fuller, & Sparrow, 2003). This they virtually always corresponded to the problem of unconscious bias and signaling stimuli seen by the facilitator. In the 19 has sometimes proven difficult to manage well-controlled studies of FC performed even for researchers trying actively to min- prior to 1999, the number of successful imize it (Rosenthal, 1985; Sebeok & validations of FC was 0 of 183 (Gorman, Umiker-Sebeok, 1980). 1998; Lilienfeld, 2005). The results of the The consensus that FC is ineffective was initial negative tests on FC were portrayed essentially universal in the scientific com- in an influential Frontline documentary, munity by the mid-to-late 1990s (Mulick “Prisoners of Silence” (Palfreman, 1993), et al., 1993; Romanczyk, Arnstein, Soorya, which aired in late 1993. This documen- & Gillis, 2003; Shane, 1994). By then or tary, conjoined with a critical CBS 60 Min- not long afterwards, the American Psycho- utes exposure (“Less than a Miracle”) in logical Association, American Psychiatric early 1994 (Eisen, 1994), helped to slow, Association, American Academy of Child but by no means halt, the FC bandwagon. and Adolescent Psychiatry, American Asso- ciation on Mental Retardation, American A scientific consensus emerges Speech-Language-Hearing Association, Association for Behavior Analysis, Behav- By now, the scientific verdict was clear. FC ior Analysis Association of Michigan, is ineffective and “works” only when facili- American Academy of Pediatrics, American tators know the answers (Montee, Association on Intellectual and Develop- Miltenberger, & Wittrock, 1995; Schlosser mental Disabilities, and New York State Downloaded by [University of Lethbridge] at 05:52 05 October 2015 & Wendt, 2008). Furthermore, FC is a Department of Health, among other pro- striking case of the ideomotor effect, which fessional organizations, had issued policy had been known in psychological circles statements declaring FC to be an ineffec- since at least the mid-nineteenth century tive or at best unsupported for autism (Hyman, 1999; Stock & Stock, 2004; see (Lilienfeld, 2005; Mazerolle & Legosz, also Skinner, 1934). This effect, illustrated 2012).2 by such purported paranormal phenomena as Ouija boards, automatic writing, table 2After declining to follow suit for two decades, tipping, dowsing, and the Chevreul Pendu- The International Society for Augmentative and lum, refers to the propensity of people’s Alternative Communication issued a policy thoughts to influence their movements statement criticizing FC in 2014 (International Society for Augmentative and Alternative Com- without their awareness (Wegner, 2003). munication, in press). 70 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

Still, Biklen and his colleagues remained 2005). Indeed, arguably the most consis- undaunted. They responded to the nega- tent finding in the FC literature has been tive scientific evidence by insisting that the that the better controlled the study, the controlled tests were flawed. In particular, less likely it is has been to detect evidence they maintained that these experiments for FC (Mostert, 2010). A review of more placed individuals with autism in “con- recent literature (Mostert, 2010) yielded frontational” and otherwise stressful equally unsupportive conclusions regard- testing conditions, thereby impeding their ing FC’s effectiveness. capacity to communicate successfully Finally, there have been numerous (Biklen & Cardinal, 1997; Crossley, 1994). reports of individuals who have achieved Nevertheless, this ad hoc hypothesis is dif- “independent typing” and even speech ficult to reconcile with observations that after supposedly being weaned off FC (e.g., these same individuals could facilitate suc- Bernardi & Tuzzi, 2011; Biklen, 2005; cessfully (a) in front of television cameras, Broderick & Kasa-Hendrickson, 2001; (b) before hundreds of onlookers at FC Kasa-Hendrickson, 2006; Robledo & conventions (Palfreman, 1993), (c) in Donnellan, 2008; Rubin et al., 2001). school while taking graded examinations Many FC advocates have assumed that a and performing assignments, and (d) dur- transition to independent typing validates ing presumably anxiety-provoking sexual the earlier assisted typing (Biklen & abuse interrogations (Todd, 2012). Cardinal, 1997). Nevertheless, these In other cases, FC proponents pointed to reports are anecdotal and have never been some apparent successful instances of FC corroborated in independent controlled in experimental studies (e.g., Calculator & studies. Furthermore, even if an individual Singer, 1992; Cardinal, Hanson, & Wake- became capable of typing with no aid ham, 1996; Vazquez, 1994). Nevertheless, whatsoever after FC, we should conclude as Mostert (2001, 2010) and other critics neither that the facilitated typing was gen- (Green, 1994; Probst, 2005; Todd, 2012) uine nor that FC engendered the ability. It noted, these scattered positive reports do is at least equally plausible that FC delayed not provide support for FC. the onset of functional communication by Several are not controlled, direct valida- reducing its need (e.g., Mostert, 2001, tions of authorship (e.g., Janzen-Wilde, 2010; Shane, O’Brien, & Sorce, 2009). In Duchan, & Higginbotham, 1995; Rubin addition, it is puzzling that established FC et al., 2001). Of those that might qualify typists continue to express basic needs, as genuine controlled analyses, all are such as hunger or thirst, through Downloaded by [University of Lethbridge] at 05:52 05 October 2015 marked by serious flaws: the possibility of independent typing, yet create lofty, philo- facilitator cuing, prior facilitator access to sophical expressions only when facilitated the stimulus materials, lack of blindness of (Shane, 1994). It is also difficult to explain data collection, absence of control over why the augmentative and alternative practice effects without FC, evaluation of communication (AAC) technologies that behavior other than expressive communi- lead routinely to independent communica- cation, no demonstration of reliable com- tion by the most severely physically dis- munication, and absence of pretests to abled (Sigafoos, O’Reilly, Lancioni, & demonstrate that individuals were incapa- Sutherland, 2014) are not similarly suc- ble of written communication without FC cessful with (and apparently are only (see also Cummins & Prior, 1992; Jacob- rarely introduced to) individuals who son, Foxx, & Mulick, 2005; Lilienfeld, allegedly require FC. EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 71

Premature proclamations of FC’s the mid-to-late 1990s. Hence, we can demise safely regard any surveys on FC’s use con- ducted following the onset of the new mil- An inspection of published sources post lennium (post 2000) as offering a rough 2000 suggests that many authors harbored gauge of this intervention’s persistence fol- the belief, or at least the hope, that FC lowing its empirical refutation. The survey would be abandoned soon after its discred- literature on FC’s clinical use post 2000 iting by scientific research. For example, varies in size, scope, and methodology, but prominent science writer Martin Gardner it yields reasonably consistent conclusions. (2001) wrote that: We summarize the results of published “For example, Although a voodoo science surveys here; we omit informal estimates seldom completely evaporates, one can hope of the prevalence of FC’s use in the com- that the FC farce, involving a mysterious munity (e.g., Rubin & Rubin, 2005). malady more pervasive around the world In an internet survey of 552 parents than Down’s syndrome, is finally coming to (80% of whom were American) recruited an end (p. 19).” Other authors apparently through colleagues and postings of autism concluded that FC had been essentially societies, Green et al. (2006) found that abandoned following its refutation. Maxwell 9.8% reported that their children were (2004) wrote that “A particularly salient cau- currently using FC; 10.2% said that they tionary tale for qualitative researchers is the had used FC in the past, although the time rise and fall of facilitated communication as a period of previous use was not specified. method for working with autistic and Harrington, Patrick, Edwards, and Brand severely retarded persons” (p. 37; emphasis (2006) administered a paper-and-pencil added). Similarly, in 2005, prominent autism survey to 62 attendees at a conference for researcher Bernard Rimland authored an parents of children with autism held in article entitled “Facilitated Communication 2002 in Westchester, New York. In con- —Its Rise and Fall,” which documented the trast to the results of Green et al. (2006), meteoric ascendance and subsequent col- only one parent (1.6%) reported that his lapse of FC. More recently, Bengston and or her child was using FC. Marshik (2007) maintained that “the tech- In a web-based survey of 185 teachers nique [facilitated communication] is nowa- across the state of Georgia who reported days rarely used” (p. 2). Nevertheless, to on treatment use for children with ASD, paraphrase Mark Twain, rumors of FC’s Hess, Morrier, Hefflin, and Ivey (2008) demise proved to be exaggerated. Recent found that 6.7% reported that FC was

Downloaded by [University of Lethbridge] at 05:52 05 October 2015 survey data demonstrate why. being administered in their classrooms. FC use was limited to elementary school chil- dren. SURVEY DATA ON FC’S RECENT USE AND MEDIA Lock, Graf, and Bitar (2008) recruited COVERAGE 1141 (out of total of 7500 email surveys sent) parents, caregivers, and mental pro- Facilitated communication? My God—I fessionals from various autism treatment thought we stuck a stake through its heart in and advocacy organizations in Texas. The 1997. (Alan Zweibel; in Dickerson, 2008) researchers asked participants about their familiarity and experience with a broad As is evident from our review of the litera- array of autism interventions. Twenty-six ture, FC had been soundly discredited by percent of parents/caregivers (n = 605) 72 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

and 44% (n = 436) of professionals, school-aged children, this study probably respectively, reported having heard of FC. underestimates the frequency of FC use On a 1 to 5 scale (1 = strongly disagree, 5 among social workers in general. Even so, = strongly agree), parents/caregivers were 1.9% of the sample reported using FC cur- slightly positive (M = 3.49) regarding FC’s rently; another 0.5% reported having used helpfulness, whereas professionals were FC in the past, but discontinuing it. These slightly negative (M = 2.60). Although the percentages are not comparable with those latter number is perhaps somewhat reas- of the other surveys reported here, how- suring, it suggests that many mental health ever, because they focus on the percentage professionals perceived FC as useful. Nev- use of FC among practitioners rather than ertheless, because participants were not among children. required to have direct experience with Hall and Riccio (2012) used an internet- FC, it is unclear how many of those who based platform to collect data from 452 administered FC (or whose children parents and other caregivers of children received FC) found it helpful. with an ASD. The authors recruited partic- Schreck and Mazur (2008) adopted a dif- ipants from approximately 800 support ferent approach to examining the popular- groups for parents and caregivers of chil- ity of FC. Using an internet survey, they dren with autism and asked them to report asked 469 board-certified applied behavior on the frequency of use of various inter- analysts regarding their use of, and attitudes ventions with their child. Six percent of toward, various interventions for autism. participants said that their child had used Schreck and Mazur found that 6.4% FC in the past, and 6.4% said that their reported using FC; the same percentage said child was currently using FC. they found FC to be effective. Perhaps sur- To our knowledge, only one recent sur- prisingly, 5.1% of behavior analysts stated vey has examined students’ knowledge that they believed that FC was supported by regarding FC’s effectiveness. Price (2013) research. Among participants who did not distributed a questionnaire concerning aut- report using FC, 32.6% said that they knew ism’s characteristics, diagnosis, etiology, of other mental health professionals who and intervention, both in email and paper- were using it. In addition, behavior analysts and-pencil form, to 97 students drawn who had been practicing for fewer than from four universities in Mississippi. Of 5 years were significantly more likely to these students, 74 were undergraduates report using FC than those who had been majoring in communication disorders, and practicing for more than five years. This 23 were graduate students in speech-lan- Downloaded by [University of Lethbridge] at 05:52 05 October 2015 finding raises the possibility that less experi- guage pathology. In response to the ques- enced behavior analysts are less aware of tion, “Research supports the use of the discrediting of FC, and hence more facilitated communication with autism” likely to administer it (see Cook Myers, Mil- (Price, 2013, p. 75), 100% [sic] of under- tenberger, & Suda, 1998, for similar find- graduates agreed while 83% of graduate ings). students agreed. It is not known whether Pignotti and Thyer (2009) conducted an participants might have confused FC with internet survey of novel and unsupported other communication-based interventions therapies among 400 licensed clinical for autism. Even so, these high percentages social workers across 39 U.S. states. raise troubling questions regarding student Because only 9% of the sample reported attitudes toward FC and the current state working primarily with preschool or of education of students concerning FC. EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 73

All of the published surveys are based treatments for autism (e.g., chelation ther- exclusively on American samples. Although apy, sensory–motor integration therapy, survey data outside of the U.S. are lacking, secretin) in the popular media from 1991 numerous articles suggest that FC has to 2005. They coded whether the mention recently acquired (or reacquired) substan- was positive, negative, or neutral toward tial traction in countries outside of the US, FC. Wick and Smith found that popular particularly Australia, Italy, Germany, and media citations for FC declined precipi- Finland—with some evidence of its imple- tously in the mid-1990s, corresponding to mentation in Asia (Bernardi, & Tuzzi, 2011; its discrediting in the scientific community Bigozzi et al., 2012; Niemi and Ka¨rna¨-Lin, (Jacobson et al., 1995). Nevertheless, FC 2002; Mazerolle & Legosz, 2012; Oudin, experienced a dramatic uptick in citations Revel, & Nadel, 2007; Schiavo, Tressoldi, & beginning in 2005, perhaps corresponding Martinez, 2005; Sipila¨ &Ma¨a¨tta¨, 2011). to the release and repeated showings of In addition, these surveys may have the film Autism is a World on CNN (see overlooked the use of renamed or altered “Facilitated Communication in the Enter- versions of FC. For example, FC is now tainment World”). Thirty-nine percent of often called “supported typing,” “progres- mentions of FC in the popular literature sive kinesthetic feedback” (Giese, 2008), or were positive; 29% were negative. Many “written output communication enhance- controversial autism treatments did not ment”. In still other cases, FC has trans- display the same temporal pattern; for mogrified into superficially different example, sensory–motor integration ther- variants. For example, rapid prompting, apy displayed a sharp decline in media sometimes called informative pointing citations from 2004 to 2005. Hence, these (Todd, 2012), is a minor modification of results for FC are unlikely to reflect a gen- FC that similarly appears to operate by eralized upsurge in coverage for all autism means of the ideomotor effect. This tech- treatments in the mid-2000s. nique was developed by Soma Mukhopad- Additional evidence indicates that FC hyay for her son Tito, who was diagnosed continues to receive mentions on widely with autism, and was introduced to the accessed autism websites. Stephenson, United States in 2001 (Tostanoski, Lang, Carter, and Kemp (2012) examined eight Raulston, Carnett, & Davis, 2014). In rapid websites of US and international autism prompting, as opposed to traditional FC, and ASD societies (e.g., Autism Society of the facilitator subtly moves the keyboard America, National Autism Association, or letter board as the individual types Autism Society Canada) and found that Downloaded by [University of Lethbridge] at 05:52 05 October 2015 without apparent physical assistance four featured information concerning FC. (Raulston et al., 2013). There is presently Two of these four sites were coded by inde- no scientific support for this method (Tost- pendent raters as presenting mostly nega- anoski et al., 2014). tive scientific findings for FC; the other two sites did not provide information concern- ing scientific findings on FC. Nevertheless, Media and internet coverage three of the four sites were rated as provid- Several surveys have examined media or ing mixed or neutral anecdotal reports con- popular coverage of FC over time. Wick cerning FC’s effectiveness; one was rated as and Smith (2009) used the Lexis/Nexis providing negative anecdotal reports. database to examine the frequency of Schreck, Russell, and Vargas (2013) mentions of FC and other controversial examined the media’s use of both applied 74 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

behavior analysis (ABA), which is empiri- 2000, especially 2005. The graph for ABA cally supported for the treatment of aut- tells a different story. Google Scholar cita- ism, and a number of scientifically tions have soared since the mid-1990s and unsupported interventions, including FC, continued to jump post 2000, reflecting an between 2000 and 2010. They identified upsurge in academic publications. In con- 112 mentions of ABA and 55 mentions of trast, Google citations have stagnated since FC in the five most widely circulated U.S. 2000 (although Lexis citations have newspapers (e.g., New York Times, USA increased somewhat). Today) and U.S. magazines (e.g., Time, Peo- Overall, these results suggest that FC’s ple). FC accounted for 10% of all mentions coverage in the popular press has increased of autism treatments across the decade, over the past decade and that its coverage in and the ratio of positive statements to neg- scholarly articles has also increased mod- ative statements for FC was two to one. estly. In contrast, ABA’s coverage in the pop- For the purpose of this article, we con- ular press has largely stagnated or increased ducted our own analysis of the trends in modestly, whereas its coverage in scholarly media and print coverage of FC between articles has increased dramatically. 1980 and 2013 using three databases: Lexis (All English News plus All World Publica- Summary of Survey Data tions), Google, and Google Scholar using the search terms “facilitated communica- The survey data on FC are limited in sev- tion” and “autism.” For comparison, we eral respects. They are not based on repre- conducted a search for the most exten- sentative samples of practitioners or sively empirically supported technique for parents, and they originate from differing autism—namely, ABA—using the search geographical regions. Moreover, because terms “applied behavior analysis” and comparable survey data are not available “autism.” The results of these graphs are prior to 2000, it is not known whether FC displayed in Figure 1. use has increased, decreased, or stabilized As can be seen, for FC, the Lexis database since the early 1990s, when FC first revealed a bump in the popularity of stories appeared on the scene in the US. A survey on FC in the early to mid-1990s (corre- by Cook Myers et al. (1998) of 177 staff sponding to FC’s emergence in the US and members at seven developmental disabili- other countries), a decline soon after (corre- ties agencies in North Dakota had found sponding to FC’s discrediting in the scien- that 18% of practitioners were using FC. tific community), and an increase in around This finding raises the possibility that FC Downloaded by [University of Lethbridge] at 05:52 05 October 2015 2005 (broadly corroborating the findings of use has declined since the mid-to-late Wick & Smith, 2009). The frequencies of 1990s, but direct comparisons with more mentions of FC have been variable since recent surveys are not possible. Still, more then, although they have returned to close recent survey data consistently indicate to their levels in the mid-1990s. Google that FC use remains widespread in many Scholar citations spiked in the mid-1990s, quarters, with a range of current use post but declined after that. In contrast, Google 2000 ranging from 1.6% to 9.8% of chil- citations continued to increase after the dren with autism. The findings of Price mid-1990s, perhaps reflecting a disjunction (2013) further suggest that many students between popular and academic coverage of who specialize in communication disorders FC. Both Google and Google Scholar cita- believe FC to be effective for autism. Data tions have increased fairly steadily since on media and internet coverage of FC EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 75 Downloaded by [University of Lethbridge] at 05:52 05 October 2015

Figure 1. Trends in media and print coverage for applied behavior analysis and facilitated communication (1980 to 2013). 76 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

indicate that citations to FC peaked in the change is unclear, but may stem from the mid-2000s, and that such citations awareness that FC is regarded as illegiti- remained at a relatively high rate until the mate in the scientific community (indeed, present time. Perhaps most worrisome, the bad press associated with the Italian much of the media coverage of FC post term “Comuniazione Facilitata” inspired FC 2000 was positive in tone (Wick & Smith, advocates there to abandon it in favor of 2009), although this coverage may be less the aforementioned “WOCE”; Cadei, n.d.). positive on autism websites (Stephenson The Syracuse University ICI sponsors and et al., 2012). Still, the fact that some of the supports numerous activities, including an coverage on these websites is mixed sug- FC art group, support groups for caregivers gests that parents who consult such web- of individuals with autism, training semi- sites can and will readily find some nars, and summer conferences. The ICI also supportive information regarding FC. provides sponsorship to groups that pro- mote FC. Rigorous controlled research on FC’s effectiveness, however, is not listed THE RESURRECTION OF FACILITATED among the ICI’s activities. COMMUNICATION The ICI has been accorded legitimacy in The results of these surveys suggest that FC numerous quarters. In 2008, the ICI has persisted in the clinical community and received a $500,000 grant from the John P. in popular consciousness following its dis- Hussman Foundation to pursue research, crediting in the scientific community in the training, and dissemination of FC (Hagen, mid-to-late 1990s. As we demonstrate, 2012), with nearly a third of the award allo- however, FC’s resilience is equally evident cated “to support the training of family in its continued visibility in academic and members in the use of augmentative and other institutional settings, popular books, alternative communication strategies” (Syr- peer-reviewed publications, the internet, acuse University Giving, 2008). The ICI is a the news and entertainment, media, and long-time recipient of grants and support other venues. from the Nancy Lurie Marks Foundation, including funding for at least one faculty line. Moreover, a commentary article in the Facilitated communication’s comeback peer-reviewed journal Frontiers in Integrative in academic and professional Neuroscience (Berger, 2013) listed the ICI, institutions along with (a) “Bodyspeaks,” a group that One of the most clear-cut manifestations of promotes FC and similar communication Downloaded by [University of Lethbridge] at 05:52 05 October 2015 FC’s persistence is its continued presence techniques and (b) Whitter Area Parents’ in academic settings. For example, FC has Association for the Developmentally Handi- figured prominently in a select few, but capped (WAPADH), a California-based highly popular, textbooks (see Mostert, organization that endorses FC, as three of 2002, for examples). A number of colleges six recommended resources for individuals and universities now support, if not seeking information about autism. A fourth endorse, FC. The most obvious example is recommended group, Helping Autism the enduring success of Douglas Biklen’s Through Learning and Outreach (HALO), Facilitated Communication Institute at disseminates rapid prompting, a technique Syracuse University, which was renamed that, as noted earlier, appears to be a minor the Institute on Communication and Inclu- variant of FC (Tostanoski et al., 2014). sion (ICI) in 2010. The reason for the name The author of the article concluded, EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 77

“I encourage persons with autism, and the background in inclusive education and parents of such persons, to explore the ther- demonstrated ability to attract external apeutic opportunities offered by these, and funding. At the same time, it is plausible what I expect will be growing number of that this appointment contributed to the similar, organizations” (Berger, 2013, p. 2). perception of FC as helpful to individuals Solidifying the impression of FC’s scien- with developmental disabilities. tific legitimacy was Douglas Biklen’s Further cementing FC’s reputation was appointment, in 2005, as Dean of Education Douglas Biklen’s 2011 award from the Uni- at Syracuse University (Rimland, 2005), a ted Nation’s Educational, Scientific and Cul- position that he held until his retirement tural Organization (UNESCO)/Emir Jaber from the Syracuse University administra- al-Ahmad al-Jaber al-Sabah Prize to Pro- tion in January of 2014. Biklen was mote Quality Education for Persons with appointed by Syracuse University Chancel- Intellectual Disabilities, a prize bestowed by lor Nancy Cantor, herself a prominent psy- the Kuwaiti government. The UNESCO chologist (e.g., Cantor & Mischel, 1977). In website announced the award by noting announcing Biklen’s appointment as Dean, that “Over the past 40 years, his [Biklen’s] Syracuse University Provost and Vice Chan- work has inspired researchers and given cellor Deborah Freund, wrote that: hope to many families of persons with dis- abilities from around the world” (UNESCO This ability to appoint Doug Biklen to the Media Services, 2012), but offered no indi- deanship of the School of Education is an cations of FC’s negative standing in the sci- exquisite opportunity. Doug brings inter- national renown for his scholarship, and entific community. Similarly, a recent 18- his passion for the school is truly inspir- minute-long video celebrating Biklen’s life’s ing. Under his leadership, the possibilities work did not mention the uncorroborated for the school will be limitless. (BAAM sexual abuse allegations associated with Behavior News Archives, 2005) FC (Suschoolofed, 2014)(http://www. youtube.com/watch?v=Sci4qn79hlk) One Cantor was aware of Biklen’s legacy and speaker in the video compared Biklen’s stat- the issues surrounding FC. In a speech in ure to that of the Beatles. 2007, she portrayed the FC story largely as Biklen has not been alone in his academic a triumph of real-world experience over recognition. For example, in 2002, Donald controlled data: Cardinal, another of FC’s earliest advocates, was appointed Dean of the College of Educa- While the controversy about facilitated communication in the research literature tional Studies at Chapman University in Downloaded by [University of Lethbridge] at 05:52 05 October 2015 in psychology and education never seems Orange, California. Mary Falvey is Dean of to tire, the compelling testimony to its the College of Education at California State power is written and rewritten in the University, Los Angeles. Her eponymous stories of autistic individuals . . . whose award, the Mary Falvey Outstanding Young lives it has turned around—and freed. (Cantor, 2007)(http://www.syr.edu/chan Person Award, has been given at least twice cellor/speeches/ImaginingAmericaAnnual to FC users, Sue Rubin in 1988 and Peyton ConferenceRemarks090707.pdf) Goddard in 2004. After proclaiming that FC is not only genuine, but demonstrates that chil- Of course, Syracuse University may well dren with autism are psychic (Haskew & have had what it believed to be legitimate Donnellan, 1993), Anne Donnellan reasons for Biklen’s appointment, espe- (Emeritus, University of Wisconsin) became cially given his extensive leadership Director of the Autism Program at the 78 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

University of San Diego and was appointed to use of FC and allied technologies (Univer- the Panel of Professional Advisors of the sity of Northern Iowa, 2014). The Univer- Autism Society. sity of New Hampshire’s Institute on Recently and currently active academi- Disability has supported FC since the early cians who have explicitly endorsed the effi- 1990s and routinely offers training work- cacy of FC and closely allied methods, such shops in FC (http://www.iod.unh.edu/pro as rapid prompting, can be found on the jects/fc_skill_builders/about_FC.aspx). The faculties of numerous other institutions in most recent instance, scheduled for Octo- the US and abroad, including Zachary Ros- ber 16, 2014, was conducted by long-time setti (Boston University), Alicia Broderick FC advocate Pascal Cheng and FC new- (Columbia University), Ralph Saverese comer, Lisa Bauhan—through whose biog- (Grinnell College), Patricia Edwards raphy we learn of a grant from the (Ashland University), Missy Morton (Uni- Crotched Mountain organization “to pro- versity of Canterbury, New Zealand), vide ST [supported typing] training Andrew Grayson and Anne Emerson (Not- throughout New Hampshire” (http://iod. tingham Trent University), Patricia Block unh.edu/Services/eventdetail/14-07-28/Int (State University of New York at Stony roductory_Training_for_Supported_Typing. Brook), Christi Kasa (University of Colorado aspx; http://www.crotchedmountain.org/Pro at Colorado Springs), Christopher Kliewer grams-and-Services/ATECH-Services/Support (University of Northern Iowa), Sandra ed-Typing/). Institutions in which facilitated McClennen (Emeritus, Eastern Michigan students have been enrolled and reportedly University), Eija Ka¨rna¨-Lin (University of received degrees include Syracuse Univer- Joensuu, Finland), and Margaret Bauman sity, Whittier College (California), LeMoyne (Harvard University). To be clear, the num- College (Pennsylvania), George Mason Uni- ber of individuals on this list should not be versity (Virginia), Pennsylvania State Uni- taken to imply that there is broad academic versity, Indiana University–Purdue support for FC, as they represent only a tiny University, Indianapolis (Indiana), Cuyamac- fraction of all faculty members across major a College (California), and the University of colleges and universities. At the same time, Denver. the fact that a prolific set of individuals is Perhaps the pinnacle of FC’s success in affiliated with otherwise reputable institu- academia, however, was attained in July tions may contribute to the illusion of 2011, when the Massachusetts Institute of greater legitimacy for FC than is warranted. Technology (MIT) Media Lab hosted a con- Other academic institutions have ference on FC, with Douglas Biklen and Downloaded by [University of Lethbridge] at 05:52 05 October 2015 included FC in their conferences, curricula, Rosemary Crossley as invited speakers. The disability access, and outreach efforts. In program did not feature any speakers who 2012, Indiana State University’s School of could have challenged the science or ethics Education “Sycamore Days” education of FC. In addition to talks, the conference conference featured a facilitated keynote featured training workshops on “Getting address attributed to Matthew Hobson, an Started with FC,” “Typing for Social Inter- individual diagnosed with autism, whose action,” and “Two Handed Typing,” among typing was at times guided by two individ- other topics. Although it is likely that many uals (Hobson & Hobson, 2010). In 2014, disabilities services offices do not entertain the University of Northern Iowa hosted a FC as an accommodation option, Lakes two-day summer institute (“Inclusion and Region Community College in New Communication for All”) highlighting the Hampshire appears to be the only higher EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 79

education institution in the US with a pub- a voice feedback, so you’ll hear what his lished policy prohibiting the use of FC in answer is” (Holder et al., 2009, p. 48). The the classroom (Lakes Region Community manual recommends Douglas Biklen and College. (n.d.). Disabilities Services, http:// “Facilitated Communication (FC) Interpret- www.lrcc.edu/student-resources/student-h ers” at Syracuse University as experts and andbook/disabilities-services). resource persons for learning how to com- High-profile organizations outside of municate with intellectually disabled indi- academia have also played an increasing viduals (p. 39). Baladerian, who received a role in supporting FC. In 2009, the Dan formal letter of congratulations for her Marino Foundation and the Autistic Self- efforts in 2008 from APA Executive Officer Advocacy Network (ASAN) featured FC in Norman Anderson, has been quoted as their “No Myths” public service announce- claiming that sexual abuse of people with ment about autism, but hid the facilitator developmental disabilities is universal off-screen (Todd, 2012). In 2012, the Doug (Haskew & Donnellan, 1993). Flutie Jr. Autism Foundation, founded by former NFL (National Football League) Facilitated communication in print and quarterback Doug Flutie (who has a son online with autism), donated $70,000 to 11 schools and organizations to support their The new millennium has born witness to a use and development of I-Pad technologies parade of popular books touting the bene- for FC (2013 Allison Keller iPad Program fits of FC and its variants, such as rapid Recipients. (n.d.). http://www.flutiefounda prompting (Howlin, 2006). Several were tion.org/programsgrants/2013-allison-keller purportedly authored by individuals with -ipad-program-recipients/index.html). autism using FC. Among them are Now In arguably the most impressive institu- You Know Me Think More: A Journey With tional organizational endorsement of FC, Autism Using Facilitated Communication Tech- the U.S. Department of Justice hired FC niques (Hundal & Lukey, 2003), Sharing advocate Nora Baladerian in 2007 to pro- Our Wisdom: A Collection of Presentations by duce a manual and DVD on forensic inter- People Within the Autism Spectrum (Gilling- viewing of people with cognitive ham & McClellan, 2003), I’m So Glad You disabilities. There, FC was depicted as a Found Me In Here (Hobson & Hobson, legitimate means of extracting information 2010), Autism: Sensory-Movement Differences from individuals with developmental dis- and Diversity (Leary & Donnellan, 2012), abilities, with no hint of the serious prob- Developing Communication for Autism Using Downloaded by [University of Lethbridge] at 05:52 05 October 2015 lems associated with the technique (Holder, Rapid Prompting Method: Guide for Effective Robinson, & Frost, 2009). One passage in Language (Mukhopadhyay, 2013), and I the U.S. government manual provides a Might Be You: An Exploration of Autism and case example in which the forensic inter- Connection (Rentenbach & Prislovsky, viewer “uses what’s called “facilitated com- 2013). An edited book, Politics of Occupa- munication”, and I have an interpreter here tion-Centered Practice: Reflections on Occupa- that’s gonna (sic) be working with him to tional Engagement Across Cultures (Pollard & answer questions on the typer.” The man- Sakelllariou, 2012) contained a chapter ual continues: “She’s basically providing (Block, Shuttleworth, Pratt, Block, & resistive support to his hand, so when you Rammler, 2012) describing the story of ask him the question, then he will type two adults with autism who fell in love in what the answer is, and it’s—the device has 2009 while using FC and became engaged 80 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

in 2010. The chapter even broaches the Perhaps the most impassioned defense of issue of “facilitated sex,” in which sexual FC in the peer-reviewed literature intercourse between two individuals with appeared in an article by Stubblefield autism is facilitated by an assistant. (2011)inDisabilities Studies Quarterly enti- FC has also increasingly acquired tled “Sound and Fury: When Opposition to mainstream status in some academic Facilitated Communication Functions as journals, including those in neuroscience, Hate Speech.” Invoking the metaphors of disabilities, and the humanities. For pornographers exploiting women and Ku example, in the new millennium, articles Klux Klan members burning a cross on the supportive of FC have appeared in such lawn on an African-American’s house, the peer-reviewed journals as Brain and Lan- author contended that criticisms of FC and guage, Topics in Language Disorders, Focus of FC advocates can result in a “silencing on Autism & Other Developmental Disabili- of those people targeted by the hate ties, Intellectual and Developmental Disabili- speech” (http://dsq-sds.org/article/view/17 ties (see Mostert, 2010), Disabilities Studies 29/1777). Critics of FC were denied the Quarterly, and, as we have noted, Fron- opportunity to the respond to her article tiers in Integrative Neuroscience. The Journal by the editor of the journal, who replied of Autism and Developmental Disorders that rebuttals were not within the journal recently featured a laudatory review of a guidelines (Brenda Bruggeman, personal book, Carly’s Voice: Breaking Through Aut- communication with J.T.T., November 4 & ism (Fleischmann, 2012), which champi- 27, 2011). ons the use of FC (VanBergeijk, 2014). FC has also found its way onto innu- Over two dozen articles and chapters merable internet sites. One story, appear- that endorse FC as a valid intervention ing on the Huffington Post in 2012, featured have appeared in academic outlets since Jacob Artson, a nonverbal 17-year-old Los 2005, at least 15 of them peer- Angeles boy diagnosed with autism. reviewed.3 Informing readers that “a miracle hap- pened” when Jacob discovered FC shortly before his seventh birthday, the article described his post-FC transformation: 3These articles include Ashby (2011); Ashby and Causton-Theoharis (2009, 2011); Bernardi and Tu- Perhaps what is most remarkable about zzi (2011); Bigozzi et al. (2012); Biklen (2005, Jacob’s ability to express himself through 2007); Biklen and Burke (2006); Biklen and Klie- typing is how eloquent, thoughtful and wer (2006); Block, Shuttleworth, Pratt, Block, and intelligent he is. He sent an email to Huff- Downloaded by [University of Lethbridge] at 05:52 05 October 2015 Rammler (2012); Broderick (2009); Broderick and Post explaining what it was like for him Kasa-Hendrickson (2006); Causton-Theoharis, before he could communicate. “Before I Ashby, and Cozier (2009); Emerson and Dearden was introduced to typing, I had retreated (2013); Grayson, Emerson, Howard-Jones, and into anxiety, fear and despair. I read O’Neil (2012); Kasa-Hendricksen (2006); everything around me from books to TV Kasa-Hendrickson, Broderick, and Hanson (2009); credits to the newspaper on the kitchen Kasnitz and Block (2012); Kliewer et al. (2005); table but I had no one to share my ideas Mirenda (2008); Rossetti, Ashby, Arndt, Chad- with so I just retreated into my own wick, and Kasahara (2008); Orlievsky and Cukier imaginary world.” (Miles, 2012) (2013); Robledo and Donnellan (2008); Rubin and Rubin (2005); Savarese and Zunshine (2014); According to the article, Jacob gives Sipila¨ and Ma¨a¨tta¨ (2011); Sipila¨, Uusiautti, and Ma¨a¨tta¨ (2013); Stubblefield (2011); and Wilson, de speeches about his FC experiences in New Jonge, deSouza, and Carlson, (2014). York City and Washington DC. He is EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 81

completing high school, and will soon be FC. The film tells Rubin’s story in her own attending college with his facilitator. In FC-generated words through the vehicle of 2013, the Huffington Post published an narration by actress Julianna Margulies. uncritical review of a book, written at least Rubin’s words impart a poignant tale: She partly with the aid of FC, by a nonspeak- was initially assumed to have an estimated ing women with autism (Rentenbach, IQ of 29, but FC purportedly revealed her 2013). The Huffington Post has also featured IQ to be 133 (it is unclear what standard- supportive coverage of rapid prompting ized test was administered given that none (e.g., Luce, 2013, 2014; Sicile-Kira, 2011). is normed for use with FC). The film pre- We also make note of the online “au- sents a mixed and often confusing picture. tismcollege.com,” on which rapid prompt- On multiple occasions, it depicts Rubin ing and FC advocate Chantal Sicile-Kira engaging in palilalia (repetition of mean- advertises her speaking services. This site ingless phrases), playing obsessively with lists among its “Autism College Visiting water and spoons, and paying minimal Professors” fellow FC and rapid prompting attention to caregivers asking her impor- supporters prominent autism author and tant questions about her future. In sharp Colorado State University Professor of Ani- contrast, in other scenes, it shows Rubin mal Sciences Temple Grandin, STAR (Sup- attending Whittier College (with the help ported Typing & Autism Resources), of her facilitator), where she majored in founder Nancy Brady, long-time FC advo- Latin American history, and giving elo- cate Darlene Hanson, and Board Certified quent facilitated speeches regarding her Behavior Analyst Cathy Pratt, Director of experiences with autism. In 2006, Autism is the Indiana Resource Center for Autism at a World was replayed several times on the Indiana Institute—which still lists FC CNN, where it was introduced without as an effective communication interven- criticism by network medical correspon- tion (Indiana Institute on Disability dent Dr. Sanjay Gupta. In particular, CNN and Community. http://www.iidc.indiana. did not mention that Rubin was accompa- edu/?pageId=510). nied in all scenes by a facilitator who either guided her arm during typing or subtly moved the keyboard as she typed. Facilitated communication in the Wurzberg followed up the commercial entertainment world success of Autism is a World with the 2010 Perhaps even more influential in resurrect- documentary, Wretches and Jabberers: And ing FC in the eyes of the general public Other Stories from the Road, also coproduced Downloaded by [University of Lethbridge] at 05:52 05 October 2015 has been its promotion in several widely by Douglas Biklen and sponsored by the distributed films. In 2004, Academy- Autism Society. The Autism Society pro- Award-winning director Gerardine Wurz- moted and shared in the screening profits burg directed and produced Autism is a of Wretches and Jabberers through AMC World, which was coproduced by Douglas Theaters (Glensky, 2011; Todd, 2012). Biklen and the Cable News Network Wretches and Jabberers tells the moving (CNN). This film was nominated for the story of two middle-aged men with autism 2005 Academy Awards in the category of who use FC, Larry Bissonnette and Tracy Best Documentary Short Subject. Autism is Thresher, who travel to several countries a World chronicles the life of Sue Rubin, a to dispel people’s misconceptions about young woman diagnosed with autism who the disorder (in 2005, Biklen had copro- learned to communicate with the aid of duced a documentary about Bissonnette 82 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

entitled My Classic Life as an Artist: A Por- (J.T.T.) has seen Thresher on two occasions trait of Larry Bissonnette). Media reaction to in 2005 and 2008, and interacted directly the film was largely positive. Newsweek with Bissonnette, including having lunch magazine ran a laudatory review entitled with him without his facilitator, never “Autism Finds Its Voice,” which acknowl- once witnessing him either type or com- edged the controversy regarding FC, but municate independently in a cognitively noted that the film “suggests that all peo- sophisticated manner. In contrast, Thresher ple have something to say, and their mes- can speak and can read what is produced sages may surprise us” (Yabroff, 2011). for him by his facilitator’s intervention, The Wall Street Journal referred to it as an raising questions concerning why he “ingenious documentary” about two requires FC to communicate. individuals “who meet other adults and Most recently, FC has been featured in teenagers who are affected yet not ham- the documentary I Want to Say: The Story of pered by their disability” (Pirnia, 2011). Hope and Technology, promoted by the orga- The New York Times, however, was more nization Autism Speaks, which premiered at circumspect in its praise: “The film is mad- the Cannes Film Festival in 2012. I Want to deningly vague about how the two men Say, which includes supportive quotations made their initial breakthroughs, but it by Temple Grandin, tells the story of how certainly is proof that even those who are FC transformed the lives of several chil- written off as children can find a voice” dren with autism at the Hope Technology (Genzlinger, 2011). School in Palo Alto, California. According The predominantly upbeat reviews not- to the film’s website, it describes how withstanding, Wretches and Jabberers raises “touch technology can empower those far more questions than it answers. In most with autism to communicate with their scenes, viewers see Mr. Bissonnette and families after years of silence and even tell Mr. Thresher typing with the aid of facilita- their parents they love them for the first tors who are stabilizing their arm move- time” (Hacking autism. I want to say. ments, holding their shoulders, or cupping http://www.autismspeaks.org/hacking-aut their elbows. In a few cases, they appar- ism/i-want-to-say). One variant of FC used ently type without looking at the computer at the Hope Technology School involves screen, a feat that has been demonstrated guiding the child’s hand with a stick. FC to be essentially impossible even for extre- makes cameo appearances in other recent mely experienced typists (Wombles, 2011). films, including the 2007 HBO Documen- In several other instances, they seem to tary Autism: The Musical (Rudy, 2014)and Downloaded by [University of Lethbridge] at 05:52 05 October 2015 type independently, but these clips are so the 2014 film Holding in the Storm: My Life fleeting and narrowly focused on their with Autism, a fictional drama about an hands that viewers cannot evaluate their adult with autism who “finds his voice” in authenticity with confidence. Nor are part by using FC (Holding in the storm: viewers informed anything about their My life with autism. http://holdinginthe ability to type independently prior to storm.blogspot.ca/). In addition, rapid receiving FC. The film also neglects to prompting was featured extensively—and explain why Bissonnette typically requires uncritically—in a 2009 documentary enti- a facilitator to steady his arm and hand tled A Mother’s Courage: Talking Back to Aut- movements while typing given that he can ism, narrated by actress Kate Winslet paint detailed images independently (Rinn, (Ericsdotzir & Fridriksson, 2009; see 2011). The third author of this article Tostanoski et al., 2014). EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 83

As illustrated by CNN’s promotion of The curious case of Rom Houben Autism is a World, much of the television FC’s high-water mark of newspaper and coverage of this technique in the new mil- television coverage post-2000 occurred in lennium has been short on skeptical scru- November 2009, when the story of Rom tiny. For example, on October 2, 2013, on Houben, a 46-year-old Belgian man, made his widely watched program, The Daily front-page news around the globe. Houben Show, comedian and host Jon Stewart had been tragically injured in a serious car endorsed a book, The Reason I Jump, pur- accident 23 years earlier and was pre- portedly written by Naoki Higashida, a 13- sumed by his physicians to be in a persis- year-old Japanese boy with autism and tent vegetative state. Nevertheless, translated by David Mitchell, who was following a functional magnetic resonance Stewart’s guest on the show (Higashida imaging scan that appeared to reveal also makes cameo appearances in Wretches unexpected levels of activity in Houben’s and Jabberers). Stewart called it “One of brain, eminent neurologist Stephen Lau- the most remarkable books I’ve ever read. reys of the University of Liege declared It’s truly moving, eye-opening, incredibly that he was actually conscious, but trapped vivid” (Deutsch, 2013; see Whittemore, inside of a nonfunctioning body. 2014, for similar praise). Nevertheless, in Scores of news organizations, including his interview with Stewart, Mitchell did CNN, Fox News, MSNBC, and BBC, not disclose the fact that Nigashada announced even more remarkable news: appears to have used FC, at least in the With the aid of an assistant, Linda Wou- early phases of his writing: “on that first ters, who held his arm while typing, Hou- day when my mom supported my writing ben was now able to communicate using a hand in hers, I began to acquire a new keyboard (Hagen, 2012; Lilienfeld 2009). way of interacting with others” (Higashida “I screamed, but there was nothing to & Mitchell, 2013, p. 6). The book asserts hear,” typed Houben. “I’ll never forget the that Higashida has since learned to type day that they discovered me,” he wrote of independently using a computer and letter the moment when his neurologists recog- board (assisted by a “helper” who tran- nized that he had been misdiagnosed. “It scribes his communications), but these was my second birth” (Connolly, 2009). claims are difficult to evaluate without vid- The media reported that Houben now eotaped footage, which is unavailable as of speaks four languages and is planning to this writing. Moreover, there is at present author a book about his story. no scientific documentation of Higashida’s

Downloaded by [University of Lethbridge] at 05:52 05 October 2015 The media coverage of Houben’s new- achievements. found communication abilities was essen- In 2010, Carly Wahlin, a 24-year-old tially unanimous in its absence of critical individual with Rett syndrome (a severe scrutiny. Particularly striking was the med- neurodevelopmental condition almost ia’s virtually wholesale failure to mention exclusively afflicting females), released a FC, despite the fact that the widely broad- CD of poetry set to classical music that was cast footage unambiguously depicted composed using FC. Entitled “In My Houben communicating by means of FC Voice,” the music was composed on a key- (e.g., (Larawbar.com, 2009) http://www. board one note at a time over the course youtube.com/watch?v=h9x9VDdc6do). For of a year with the assistance of Wahlin’s example, in a story carried by Fox News’ music therapist (McAfee, 2010). 84 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

Web Site, Sky News wrote that “An engi- The Wendrow tragedy: De´ja` vu all neering student thought to be in a coma over again for 23 years was actually conscious the Perhaps most the most vexing manifesta- whole time, it has emerged.” The Guardian tion of the apparent rehabilitation of FC in trumpeted the Houben story with the the clinical community has been the headline, “Trapped in his own body for reemergence of erroneous sexual abuse 23 years—the coma victim who screamed allegations toward parents, several of unheard” (Connolly, 2009). CNN’s which have yet to come to trial. One case Campbell Brown informed viewers that: in particular has received substantial media For 23 years, a Belgian man lay trapped attention, including a five-day front page inside his own body before a medical break- expose´ in the Detroit Free Press (see Brasier through helped set him free. Doctors said he & Wisely, 2011), a full hour feature on couldn’t think, he couldn’t reason or com- ABC’s 20/20, and an extended feature on municate. And they were wrong. Inside, he the popular Japanese television magazine, was screaming, but no one could hear. ((Brown, 2009) http://www.edition.cnn. “Amazing Stories” (Gomystyn, 2012). com/TRANSCRIPTS/0911/23/ec.01.html) In 2007, a Michigan man, Julian Wend- row, was accused of years of sexual abuse Laureys initially refused to conduct a sys- (including rape) against his 14-year-old tematic test of Houben’s communication daughter with autism, Aislinn, exclusively capacities, responding to a fellow neurolo- on the basis of FC allegations generated gist that “He [Houben] has gone from being along with a facilitator at her school ignored for many years and considered veg- (Alexander, 2009; Heinzen et al., in press; etative to being recognized [sic] as con- Todd, 2012). Julian’s wife, Thal (aka scious. And now he is again being treated as “Tali”), was accused of knowing about the if ‘it is impossible, he cannot be a cognitive abuse and of participating in it, but not being.’ Should I respond to that? I don’t intervening. Additional charges eventually want to” (Novella, 2009). Bioethicist Arthur emerged, including witness tampering Caplan (2009) of the University of Pennsyl- against Julian and Tali. Those familiar with vania raised some of the earliest doubts, at FC’s history will note striking parallels least in the U.S. media. As questions between the Wendrows’ story and what mounted, Der Spiegel finally reported that happened in 1992 to several other families, Houben was unable to pass a simple mes- including the Storches in the New York sage-passing test, failing to type the identity and the Wheatons in southern Maine

Downloaded by [University of Lethbridge] at 05:52 05 October 2015 of any of the 15 items presented to him (Boynton, 2012; Palfreman, 1993). Had (Dworschak, 2010). On February 19, 2010, those involved been attending to this his- the Associated Press ran a story entitled “Bel- tory, the Wendrows’ situation could have gian Coma Patient Can’t Communicate been resolved as was the Wheatons’— After All” ((Logghe, 2010) http://usato namely, with a double-blind test to dem- day30.usatoday.com/news/health/2010-02 onstrate the source of the authorship of -19-belgium-coma_N.htm), and several news the communications. organizations, including ABC and BBC, Instead, the Michigan Department of inconspicuously retracted their claims Social Services immediately removed Aislinn regarding Houben (Hagen, 2012). and her brother Ian from their home and EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 85

placed them in protective custody. Sandra Jordan, a New York City pharmaceutical McClennen, the former Eastern Michigan executive, was found guilty of manslaugh- University psychologist who introduced the ter for killing her 8 year-old son with aut- family to FC, recommended to police that ism, Jude, whom she injected with a lethal they question the girl with a new, naı¨ve cocktail of medications. Jordan’s defense facilitator—a method as likely to create more team claimed that Jude, while using a testimony against the family as to resolve Blackberry device, had informed his the situation (see Green, 1994; Todd, 2012). mother via FC that his biological father Julian was imprisoned for 80 days, over 70 (and Gigi Jordan’s ex-husband) had sexu- of them in solitary confinement (although ally and physically abused him. The his incarceration was due technically to con- defense further argued that Jordan killed tempt of court; he and Tali were accused Jude to spare him from further abuse. The through FC of plotting to escape justice with prosecution maintained that there was no the aid of a nonexistent South African rela- physical evidence of either sexual or physi- tive). Tali was imprisoned for 5 days and was cal abuse. As of this writing, the defense forced to wear a large electronic tether upon indicates that it plans to appeal the verdict her release on bond. Police and prosecutors (Sanchez & Remizowski, 2014). vigorously pursued charges against the Wen- drows despite a physical examination of Aisl- inn that revealed no evidence of sexual THE PERSISTENCE OF FACILITATED abuse, including repeated intercourse, that COMMUNICATION: IMPLICATIONS FOR Aislinn ostensibly suffered. They also did so ACADEMICIANS AND CLINICIANS despite evidence that verifiably correct responses to straightforward questions occurred only when Aislinn’s facilitators One of the saddest lessons of history is this: If we’ve been bamboozled long knew the answers. In contrast, when they enough, we tend to reject any evidence did not know the answers, such as the name of the bamboozle. We’re no longer inter- of Aislinn’s dog or the fact the family was ested in finding out the truth. The bam- Jewish, Aislinn’s FC responses were nonsen- boozle has captured us. (Sagan, 1995, sical, consisting largely of strings of meaning- p. 241) less letters and numbers or of irrelevant answers. Although FC was thoroughly discredited The Wendrows were finally cleared in by controlled research by the mid-to-late March of 2008, two months after Aislinn 1990s, a convergence of evidence from Downloaded by [University of Lethbridge] at 05:52 05 October 2015 failed a series of simple message-passing multiple sources, including surveys of use, tests in the courtroom. The Prosecutor’s endorsement by academic and professional Office, however, seemed unswayed by the institutions, and coverage in the popular scientific evidence against FC and by Aisl- media, demonstrates that the FC meme inn’s demonstrated lack of communication has proven surprisingly resilient to scien- ability. It maintained that the charges were tific disconfirmation (see also Hagen, dropped because Aislinn informed them, 2012). As conceptualized by Dawkins via FC, that she would not testify against (1989), a meme is a unit of cultural trans- her parents.4 In November, 2014, Gigi mission akin to a gene. Like many other memes, FC has survived in part by adopt- ing new names (e.g., supported typing, 44A recent tragic case also involves allegations of sexual abuse reported obtained using FC. assisted typing) or by mutating into new 86 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

variants (e.g., rapid prompting, informative chiropractic methods, antiviral therapies, pointing) in response to environmental Son-Rise, Floor-Time, dolphin-assisted changes (Gabora, 1996), such as adverse therapy, equine-assisted therapy, trampo- publicity. Indeed, the propensity of ineffec- line therapy, secretin, megavitamins, tive interventions to undergo only superfi- bleach enemas, sensory–motor integration, cial rather than substantive changes in vision therapy, famotidine (Pepcid), sheep response to negative evidence is a frequent stem cell injections, extended breast feed- hallmark of pseudoscientific techniques, ing, testosterone and testosterone-reducing most of which lack the self-correcting drugs, nicotine patch therapy, marijuana property of scientific techniques (Finn therapy, camel milk therapy, rebirthing, et al., 2005; Lilienfeld et al., 2014). hypnotherapy, and orthodox psychoanaly- The persistence of FC, especially when sis, among scores of others (Autism Sci- considered against the backdrop of the per- ence Foundation, 2014; Metz, Mulick, and sistence of other unsupported mental health Butter, 2005). Clearly, FC is riding the interventions, such as DARE programs, crest of an enormous wave of popularity recovered memory techniques, and energy for fad autism treatments in general. In therapies, raises several troubling questions this respect, we can fully understand its for the science of communication disorders continued use only by situating it within and psychology, as well as the dissemina- the broader context of other fad interven- tion of this science to practitioners and the tions for this condition. public. In particular, FC’s endurance and There are almost certainly multiple apparent comeback bear implications for sources underlying the potent allure of fad the spread of unsupported interventions for treatments for autism. Perhaps the most autism, as well as communication and psy- self-evident is the fact that autism is a seri- chological disorders more broadly. ous, often profoundly impairing, disorder marked by a chronic course. The severity Autism as a fad magnet of the disorder’s clinical features, which frequently include profound communica- As many authors (e.g., Herbert, Sharp, & tion deficits, may engender understandable Gaudiano, 2002; Metz, Mulick, & Butter, desperation on the part of parents and 2005; Offit, 2008; Vyse, 2005) have other caregivers. Hence, one can hardly observed, autism has long been a “magnet” blame these individuals for considering FC for fad treatments. One review yielded a as an intervention option for their children. partial list of over 50 unsupported or At the same time, certain associated fea- Downloaded by [University of Lethbridge] at 05:52 05 October 2015 weakly supported interventions for autism tures of the disorder, such as aggression, (Smith, 2008). Moreover, surveys suggest lack of interest in people, and nonverbal that most parents of children with an ASD communication deficits, frequently wax seek out between 4 and 7 interventions at and wane over brief time periods. As a con- any given time (Green et al., 2006; Sch- sequence, caregivers, teachers, and treat- reck, 2014). Among the treatments that ment providers may erroneously attribute have been attempted with little or no suc- short-term improvements to ineffective cess are gluten- and casein-free diets, interventions rather than to regression to probiotics, antifungal interventions, chela- the mean, maturation, or other nonspecific tion therapy, magnetic shoe inserts, hyper- validity threats (Romancyck et al., 2003). baric oxygen treatments, weighted vests, Fad treatments for autism are almost cranio-sacral therapy, neurofeedback, certainly increasing in popularity EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 87

(Jacobson et al., 2005; Schreck, 2014). The inevitable that parents are routinely reasons for this trend are probably multi- encountering substantial amounts of mis- faceted as well. Most notably, the preva- information regarding autism treatment. lence of individuals diagnosed with autism has skyrocketed over the past two decades, The seductive appeal of FC although there are ample reasons to doubt whether this increase is attributable to a In addition to the appeal of fad autism genuine change in the prevalence of the treatments more broadly, FC may be espe- condition as opposed to a plethora of cially attractive to parents and practitioners methodological artifacts, including lowered for reasons all of its own. In contrast to thresholds for the diagnosis of autism and other widely used interventions, FC does heightened incentives for school districts not purport to “treat” or “remedy” autism’s to identify children as developmentally dis- core deficits. Nor does it concede the exis- abled (Gernsbacher, Dawson, & Goldsmith, tence of cognitive deficiencies in autism, 2005; Lilienfeld & Arkowitz, 2007; Waz- viewing them only as “differences.” ana, Bresnahan, & Kline, 2007). For exam- Instead, FC purports to unlock affected ple, the rates of autism diagnoses have individuals’ hidden intellectual and lin- soared an estimated 78% over the past six guistic capacities, and it implies that they years (Dawson, 2013). Regardless of are mentally intact people trapped within whether this dramatic escalation is genu- a malfunctioning body (e.g., Biklen, 1990). ine or spurious, perceptions often create The emotional draw of this view is under- reality. As a consequence, the impetus to standable, as it offers the promise of forg- find an effective intervention for a serious ing or unearthing communication with an disorder believed by many to be increasing intellectually typical person. in prevalence has become more pressing. The existence of autistic savants may Further fostering the dissemination of lend plausibility to this hypothesis. Savants fad autism treatments is the heightened comprise a small minority of individuals influence and availability of the internet. with autism who display astonishing intel- Mackintoch, Cook Myers, and Goin- lective talents (e.g., calendar calculation, Kochel (2006) found that 86% of parents extraordinary geographical knowledge, of children with autism had consulted superb musical ability; Miller, 1999). Some websites for information regarding autism FC proponents may assume that savants treatments; this percentage has presumably are merely the “tip of the iceberg” of a grown in the intervening years. Moreover, huge population of individuals with autism Downloaded by [University of Lethbridge] at 05:52 05 October 2015 the proportion of parents who had con- who harbor undiscovered mental abilities sulted journal articles was only about half (Palfreman, 1993). More broadly, this view that number (44%), suggesting that paren- accords with “the myth of unrealized tal treatment decisions may be informed potential” (Lilienfeld, Lynn, & Beyerstein, substantially more by web-based informa- 2010), the pervasive popular psychology tion than by information from peer- belief that lying fallow within each of us is reviewed sources. Because much of the a vast storehouse of unharnessed intellec- treatment information on autism websites tual capacity. The long debunked but still is variable in quality and frequently prevalent claim that virtually all people neglects to distinguish scientifically sup- use only 10% of their brain capacity (Be- ported from unsupported interventions yerstein, 1999) is merely one instantiation (Stephenson et al., 2011), it is virtually of this misconception. Widespread beliefs 88 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

in mind–body dualism—the assumption us that our subjective experiences regard- that an immaterial “mind” exists separately ing treatment effectiveness should be from the brain (Forstmann, Burgmer, & accorded considerably more weight than Mussweiler, 2012)—may be another. data gathered through controlled studies. Further fueling the popularity of FC As comedian Chico Marx quipped, “Who may be what one of us (H.C.S.; see Offit, you gonna believe, me or your own eyes?” 2008, for a similar discussion) has termed (Poundstone, 2010). For example, in a the “savior effect,” whereby well-inten- content analysis of reasons for the contin- tioned treatment providers feel an under- ued popularity of DARE programs, Birke- standable desire to rescue individuals with land, Murphy-Graham, and Weiss (2005) autism and their parents from a presumed cited police officers’ and school officials’ lifetime of despair. In contrast to the hope belief that “personal experience is more offered by FC, the research discrediting FC convincing than scientific evidence” (p. may strike many caregivers as dispiriting 253) as a key explanation. Similarly, in and discouraging. As a consequence, such the case of FC, many practitioners may findings may be dismissed largely on emo- place considerably more trust in the sub- tional grounds. It is all too easy to mistake jectively compelling evidence of their clini- hard-headedness for hard-heartedness cal observations than in the often dry and (Meehl, 1973) and to assume that impersonal results of scientific research. researchers who have subjected FC to rig- Indeed, the ideomotor effect strikes many orous scientific scrutiny have minimal con- of those unfamiliar with it as profoundly cern for the psychological needs of counterintuitive. By definition, facilitators’ individuals with autism and their loved control over the individual’s limb move- ones. Although this isomorphism is per- ments or the keyboard is external to their haps understandable, it confuses genuine conscious awareness. Hence, facilitators hope, which should be pursued vigorously, tend to attribute causation to factors out- with false hope, which can engender disas- side of their control—namely, the autistic trous consequences. Specifically, it over- individuals’ actions (Burgess et al., 1998; looks the serious harms engendered by FC, Wegner, 2003). including opportunity costs (i.e., forsaking The distinctive characteristics of autism potentially effective treatments) and erro- may afford FC a further air of plausibility. neous abuse allegations against innocent In contrast to most conditions tied to a individuals (Howlin, 2011). heightened risk of intellectual disability Furthermore, FC probably appears plau- (e.g., Down syndrome, Turner syndrome), Downloaded by [University of Lethbridge] at 05:52 05 October 2015 sible to some practitioners because of the autism is rarely associated with obvious allure of naı¨ve realism (Ross & Ward, dysmorphic facial features. Instead, individ- 1996), a term that refers to the belief that uals with autism frequently appear physi- we can place uncritical trust in the raw cally normal (Herbert et al., 2003). As a data of our perceptions. Naı¨ve realism, consequence, practitioners may be lured which implies falsely that “seeing is believ- into the belief that an intellectually intact ing,” may be one of the key cognitive person lurks beneath the normal exterior, wellsprings underpinning acceptance of a merely waiting to be discovered by FC. myriad of unvalidated treatments (Lilien- More broadly, a host of sociological and feld, Ritschel, Lynn, Latzman, & Cautin, psychological factors have probably con- 2013). Specifically, naı¨ve realism reassures spired to contribute to FC’s persistence. As EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 89

Best (2006) observed, fads are especially facilitator in the 1992 case of Betsy Whea- difficult to dislodge once they have ton, a 16-year-old girl with autism who become institutionalized. For example, generated sexual abuse allegations against despite the striking absence of evidence for her father and brother using FC. In a their efficacy, DARE programs have recent article, Boynton (2012) described endured in part because they have become her painful journey from FC believer to FC firmly ensconced in thousands of school disbeliever. After Wheaton failed a series districts (Birkeland, Murphy-Graham, & of simple message-passing tasks, Boynton Weiss, 2005). Similarly, once entrenched was initially in disbelief. Accordingly, she in school districts, FC may be difficult to engaged in a series of post hoc rationaliza- unseat without firm, vocal, and steadfast tions for the failed tests: “Almost immedi- opposition (Best, 2006). ately, I started rationalizing away the At a psychological level, the usual sus- truth. Though it was not true, I went away pects of confirmation bias, belief persever- from the testing telling myself that the sit- ance, and cognitive dissonance (Lilienfeld, uation had been hostile, the evaluator had Ammirati, & Landfield, 2009) almost been hostile, everyone had turned against surely play supporting roles in FC’s contin- me” (Boynton, 2012, p. 9). Eventually, uing popularity. Confirmation bias, which however, she came to realize that she had leads us to seek evidence consistent with been deceived by FC and persuaded Whea- our beliefs and to neglect or selectively ton’s school to stop using the procedure. reinterpret evidence that does not (Nicker- This transformation was not easy for her, son, 1998), may predispose individuals to and she appreciates why: “I understand fixate on the small number of apparent how difficult it may be for some facilitators successful trials of FC (e.g., Kliewer et al., to change their belief system. There is a lot 2005; but see Mostert, 2001, for methodo- at stake: people’s careers, reputations, con- logical critiques of these positive findings) nections with their family member or cli- and to neglect the substantially larger body ent” (Boynton, 2012, p. 10). of contrary scientific evidence (Lilienfeld, 2005; 2010). Confirmation bias regarding a Lessons and implications for the specific belief, such as FC’s effectiveness, science of communication and can in turn engender belief perseverance psychological disorders (Anderson et al., 1980), creating a psycho- logical “tunnel vision” in which the belief The story of FC’s persistence imparts cru- persists despite persuasive negative evi- cial lessons for academicians and profes- Downloaded by [University of Lethbridge] at 05:52 05 October 2015 dence. Furthermore, once individuals find sionals, both those in communication themselves committed to a stance, cogni- disorders and those in psychology. First, tive dissonance and allied processes (e.g., this story is a sobering reminder that the effort justification; Axsom & Cooper, third route for fads, in which techniques 1985), as well as face-saving (Tedeschi, that are discredited by systematic research Schlenker, & Bonoma, 1971), may make it largely go underground and persist in size- difficult for them to admit errors to them- able sectors of the clinical and educational selves or others (Tavris & Aronson, 2007). communities, may be more prevalent than In rare cases, courageous individuals can commonly believed. Hence, researchers overcome the force-field of these powerful and practitioners should not presume that psychological obstacles (Todd, 2012). One once a technique has been refuted by sci- example is Jaynce Boynton, who was the entific research, it will necessarily vanish 90 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

from the clinical scene. Second, the FC as surveys suggest that many practitioners story affords an illustration of the perils of in educational settings rely more on per- academic complacency. Many researchers sonal experiences than on refereed journal may believe that it is not their responsibil- articles to inform their choice of interven- ity to combat the spread of unsubstanti- tions (Bramlett, Murphy, Johnson, ated interventions, and that this task is Wallingsford, & Hall, 2002; Lilienfeld, better left to others (Bunge, 1984). Yet, Ammirati, & David, 2012). As Kavale and research suggests that once fads become Mostert (2004) noted, the field of special institutionalized, they will often persist education may be especially susceptible to unless they meet with persistent opposi- fads given the seriousness of the psycho- tion (Best, 2006). Hence, the failure of logical deficits involved: “The overwhelm- researchers to speak out against discredited ing desire to ‘help’ special education techniques may inadvertently empower students has often resulted in an uncritical these techniques. wish to believe that the latest untested intervention is the long-sought answer” (p. 31–43). If so, the need for proactive RECOMMENDATIONS education in scientific thinking may be especially pressing for professionals in the In light of these considerations, how can special disabilities field. the fields of academic and professional As one of us has argued elsewhere communication disorders and psychology (Lilienfeld, 2010), the education of all combat the spread of FC and other fad mental health, communication disorders, interventions for autism? Although the and education professionals should include tale of FC’s persistence does not lend itself a thorough understanding of the strengths to easy answers, we can offer several tan- and weaknesses of clinical judgment and gible proposals in light of educational prediction, biases and errors (e.g., confir- research. Nevertheless, because FC has mation bias, illusory correlation) that can proven to be a surprisingly resilient meme, predispose individuals to erroneous clinical we suspect that repeated and concerted inferences, and of debiasing techniques efforts along multiple fronts will be neces- that may be helpful in minimizing the risk sary to erode its popularity. Many of these of these specious conclusions (see also recommendations, we believe, bear impor- Gambrill, 2006). At the same time, because tant implications for more sweeping efforts efforts to debias individuals against errone- to combat the spread of educational, psy- ous beliefs have often met with limited

Downloaded by [University of Lethbridge] at 05:52 05 October 2015 chological, and psychiatric fads in general. success in controlled studies (Lilienfeld In particular, we advocate for more sus- et al., 2009), these techniques are unlikely tained educational efforts to provide long- to be sufficient for combatting beliefs in term “immunization” against questionable FC. Moreover, although training students claims regarding FC and other fad tech- in evidence-based techniques is undeni- niques for autism. Clearly, these efforts ably important, it is only a partial remedy. need to be extended well beyond graduate An exclusive focus on evidence-based students to educators, school assistants, methods risks creating competent techni- and other would-be facilitators. Indeed, cians rather than scientific thinkers who there is abundant evidence of a substantial can critically evaluate assertions regarding science–practice gap in the domains of new and untested techniques. Along with school psychology and special education, instruction in such methods, students must EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 91

come to appreciate the manifold causes of cating professional responsibilities regarding spurious therapeutic effectiveness (CSTEs; the acquisition and application of scientific Lilienfeld et al., 2014), including the ideo- knowledge and scientific thinking skills. As motor effect, all of which can predispose O’Donohue and Henderson (1999) clients, therapists, and observers alike to observed, all practitioners possess “episte- conclude that treatments are beneficial mic duties,”—that is, ethical responsibilities when they are not. Moreover, a better to seek and obtain accurate knowledge. understanding of CSTEs, which also Among these duties is the need “to behave include placebo effects, regression to the in an explicitly critical manner, particularly mean, and multiple treatment interference, in a self-critical manner. That is, one can help students to understand how even acknowledges that one’s beliefs may be in highly intelligent people can conclude that error and one seeks to rigorously criticize ineffective interventions of many stripes one’s beliefs to see if they are in error and are effective. thus in need of revision” (p. 17). These Demonstrating to students how readily duties, we would add, also include the abil- they can be fooled by bogus interventions ity to critically evaluate evidence derived may also be an effective debiasing tech- from both primary research studies and sys- nique. For example, teaching students tematic synopses of the research literature about the long history of failed treatments (see Schlosser & Sigafoos, 2009, for a discus- in psychiatry and psychology, such as psy- sion of navigating the AAC literature). Edu- choanalysis for psychotic disorders and pre- cators must help students to appreciate that frontal lobotomy, should be a required these responsibilities are every bit as crucial component of the training of all profession- as the ethical requirements with which als in communication disorders and mental mental health professionals are more famil- health (Grove & Meehl, 1996). In particu- iar (e.g., avoiding sexual relationships with lar, it may be helpful to explain to students clients, client confidentiality, mandated how and why many bright and well-edu- reporting of abuse). Indeed, one potential cated individuals were fooled by these explanation for Schreck and Mazur’s (2008) interventions. On a more concrete level, finding, described earlier, that 6.4% of recent research demonstrates that exposing behavior analysts use FC, is that scientific students to a first-hand demonstration of thinking is not routinely incorporated into water dowsing—a classic example of the the training of behavior analysts (Moore & ideomotor effect—and then explaining to Shook, 2001; Shook, 2005). them how they were misled by it, leads Certainly, we can absolve families and Downloaded by [University of Lethbridge] at 05:52 05 October 2015 them to become more skeptical of FC loved ones for accepting FC and many (Lawson & Crane, 2014). Such work other fads in their often desperate struggles suggests that a “refutational approach” to find solutions for their disabled offspring (Kowalski & Taylor, 2009), which activates (see Maurice, 1994, for an illustration). beliefs in the ideomotor effect before That said, the reality of a family’s quest for debunking it, may be helpful in debiasing clinical answers only amplifies the respon- students against unwarranted claims sibility of communication disorder and regarding FC. mental health professionals to steadfastly Furthermore, the education of future serve as the first line of defense against communication disorders, education, and pseudoscience by thoughtfully and temper- mental health professionals, including ately dissuading vulnerable parents from would-be facilitators, must focus on incul- the perils of such practices. 92 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

Scientists who wish to counteract the variety of deficits in autism, including lan- persistence of FC and other questionable guage, overall cognitive functioning, daily methods, such as recovered memory tech- living skills, and social relatedness (Virues- niques, must also acquaint themselves Ortega, 2010). By informing parents and with the growing corpus of research on other caregivers that in contrast to FC, effective and ineffective methods of dispel- which offers false hope, AAC methods and ling misconceptions. This evidence suggests ABA offer genuine hope, scientists may be that merely informing people that a belief able to counteract at least some of the is false often exerts little or no long-term understandable emotional appeal of FC. To effect (Lewandowsky, Ecker, Seifert, Sch- do so, however, they may also need to warz, & Cook, 2012). In fact, repeatedly combat prevalent misrepresentations of stating that a claim is incorrect can, para- ABA, such as the erroneous belief that this doxically, generate a “familiarity backfire technique frequently incorporates physical effect,” whereby the claim comes to be punishment or neglects to recognize the accepted as true merely because it has uniqueness of individuals (e.g., Morris, been heard many times. In other cases, 2009; see also Arntsen, Locke, Locke, & especially when a claim is central to indi- Eilertsen, and Lamal, 1995, for survey viduals’ deeply held beliefs, debunking can data). Furthermore, the wholesale failure generate a “worldview backfire effect,” of FC as an AAC approach should not whereby attempts to discredit the claim exclude the use of legitimate, evidence- are peremptorily rejected because they are based AAC approaches (see Sigafoos et al., perceived as threatening. In both cases, 2014). Because some AAC techniques, research evidence indicates that the such as those involving the use of picture debunking of erroneous claims must be symbols on keyboards (Mirenda, 2001), paired with an alternative, and ideally may be easily confused with FC by non- more compelling, narrative (Lewandowsky specialists, professionals may also need to et al., 2012). underscore the differences between FC Hence, when communicating about FC and well-supported AAC methods to care- to the general public, researchers, educa- givers. tors, and clinicians must make concerted Finally, we urge scientists in the com- efforts not merely to debunk this proce- munication disorders, psychological, and dure, but to supply a rival narrative that educational arenas to become more vocal can displace belief in FC. In the case of FC, in their opposition to fad interventions of the choice of this narrative is clear: the all kinds. Just as practitioners possess epi- Downloaded by [University of Lethbridge] at 05:52 05 October 2015 success stories of well-established AAC stemic duties to acquire and apply knowl- methods and of ABA, both of which are edge and scientific thinking, researchers empirically supported for remediating aut- with relevant expertise possess ethical ism and the communicative deficits of this duties to speak out against techniques, condition (Bolte & Hallmayer, 2011; Mir- such as FC and suggestive techniques for enda, 2001). For example, systematic memory recovery, that have the potential reviews demonstrate that AAC techniques to cause serious harm (O’Donohue & Hen- are helpful for children with co-occurring derson, 1999). Such efforts should also ASD and communication deficits (Sigafoos include consultation with autism societies et al., 2014), and meta-analyses suggest to provide scientifically accurate informa- that ABA, although far from a cure, yields tion on websites and other promotional medium to large positive effects on a materials. As Dawes (2005) observed, EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS 93

hortatory guidelines—those that exhort facilitated communication advocate, Douglas Biklen, as professionals what to do—are necessary Dean of Syracuse University’s College of Education. but not sufficient for ensuring adequate http://www.baam.emich.edu/baamnewsarchive/BA AMbnabiklencriticism.htm clinical practice. They must be paired with Bengston, J. K., & Marshik, T. T. (2007). An ecological minatory guidelines—those that instruct study of intersubjectivity and the opening of closed professionals what not to do. Only by play- minds. Journal of Educational Psychology, 99, 1–11. ing an active role in the public dissemina- Berger, K. A. (2013). Resource list for cognitive motor tion of hortatory and minatory guidelines and sensory supports in persons with autism. Fron- tiers in Integrative Neuroscience, 7, 1–7. regarding the treatment of autism can sci- Berger, C., & Kilpatrick, K. (1992). Facilitated communica- entists expect to stem the tide of FC and, tion guide and set materials (Available from New Break- we can confidently forecast, a spate of throughs, P.O. Box 25228, Eugene, OR 97402). other unsupported interventions for both Bernardi, L., & Tuzzi, A. (2011). Analyzing Written autism and other conditions. Communication in AAC Contexts: A statistical per- spective. Augmentative and Alternative Communication, 27, 183–194. Best, J. (2006). Flavor of the month: Why smart people REFERENCES fall for fads. Berkeley, CA: University of California Press. Alexander, B. (2009, December 12). Dark shadows Beyerstein, B. L. (1999). Whence cometh the myth loom over facilitated talk. NBC News. http://www. that we only use ten percent of our brains? In S. nbcnews.com/id/34212528/ns/health-mental_healt Della Sala (Ed.), Mind Myths: Exploring Everyday h/#.UxJBUFQo6cw Mysteries of the Mind and Brain (pp. 1–24). Chiches- American Psychiatric Association. (1980). Diagnostic ter: John Wiley and Sons. and statistical manual of mental disorders, third edition Bigozzi, L., Zanobini, M., Tarchi, C., Cozzani, F., & (DSM-III). Washington, DC: Author. Camba, R. (2012). Facilitated communication and American Psychiatric Association. (2013). Diagnostic autistic children: The problem of authorship. Life and statistical manual of mental disorders, fifth edition Span and Disability, 15, 55–74. (DSM-5). Washington, DC: Author. Biklen, D. (1990). Communication unbound: Autism Anderson, C. A., Lepper, M.R., & Ross, L. (1980). and praxis. Harvard Educational Review, 60, 291–315. Perseverance of social theories: The role of explana- Biklen, D. (2005). Autism and the myth of the person tion in the persistence of discredited information. alone. New York, NY: NYU Press. Journal of Personality and Social Psychology, 39, Biklen, D., & Burke, J. (2006). Presuming compe- 1037–1049. tence. Equity & Excellence in Education, 39, 166–175. Ashby, C. E. (2011). Whose “voice” is it anyway?: Biklen, D. E., & Cardinal, D. N. (1997). Contested Giving voice and qualitative research involving words, contested science: Unraveling the facilitated com- individuals that type to communicate. Disability munication controversy. New York, NY: Teachers Studies Quarterly, 31, 55–66. http://dsq-sds.org/arti College Press. cle/view/1723/1771 Biklen, D., & Kliewer, C. (2006). Constructing compe- Ashby, C. E., & Causton-Theoharis, J. N. (2009). tence: Autism, voice and the ‘disordered’ body. Inter- Downloaded by [University of Lethbridge] at 05:52 05 October 2015 Disqualified in the human race: A close reading of national Journal of Inclusive Education, 10, 169–188. the autobiographies of individuals identified as Biklen, D., Morton, M. W., Gold, D., Berrigan, C., & autistic. International Journal of Inclusive Education, Swaminathan, S. (1992). Facilitated communica- 13, 501–516. tion: Implications for individuals with autism. Topics Autism Science Foundation. (2014). Beware of non-evi- in Language Disorders, 12, 1–28. dence based treatments. http://www.autismscience Birkeland, S., Murphy-Graham, E., & Weiss, C. foundation.org/what-is-autism/autism-diagnosis/bew (2005). Good reasons for ignoring good evaluation: are-non-evidence-based-treatments The case of the drug abuse resistance education Axsom, D., & Cooper, J. (1985). Cognitive dissonance (DARE) program. Evaluation and Program Planning, and psychotherapy: The role of effort justification 28, 247–256. in inducing weight loss. Journal of Experimental Block, P., Shuttleworth, R., Pratt, J., Block, H., & Social Psychology, 21, 149–160. Rammler, L. (2012). Disability, sexuality and intimacy BAAM Behavior News Archives. (2005, August 30). (p. 162). Politics of occupation-Centred practice: Reflec- Medical research commission criticizes appointing tions on occupational engagement across cultures. 94 EBP ADVANCEMENT CORNER: PERSISTENCE OF FAD INTERVENTIONS

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