Facilitated communication

Facilitated communication

Alternative medicine
Facilitated communication shown in a 1993 PBS documentary, in which a disabled person's right hand is helped to move (or simply pulled) by a facilitator across a board showing the alphabet. The image shows a principal criticism of FC: that often the person is not looking at the board, so they cannot really be signing out a message.
Claims	Disabled people may be able to communicate by pointing at letters or with a keyboard if physically held and assisted by an expert facilitator.
Related fields	Alternative medicine
Year proposed	Late 20th century
Original proponents	Rosemary Crossley
Subsequent proponents	Douglas Biklen

Facilitated communication (FC), or supported typing, is a discredited technique used by some caregivers and educators in an attempt to assist people with severe educational and communication disabilities. The technique involves providing an alphabet board, or keyboard. The facilitator holds or gently touches the disabled person's arm or hand during this process and attempts to help them move their hand and amplify their gestures. In addition to providing physical support needed for typing or pointing, the facilitator provides verbal prompts and moral support.^[1] In addition to human touch assistance, the facilitator's belief in their communication partner's ability to communicate seems to be a key component of the technique.

There is widespread agreement within the scientific community and multiple disability advocacy organizations that facilitators, not the person with the communication disability, are the source of all or most messages obtained through FC, by guiding the arm of the patient towards answers they expect to see or that form intelligible language.^[2] Alternatively, the facilitator may hold the alphabet board and move it to the disabled person's finger. Studies asking about things the facilitator cannot know (for example showing the patient but not the facilitator an object) have confirmed this, showing that a facilitator is generally unable to ‘help’ the patient sign out the answer to a question where they do not know what the answer should be. Numerous cases have been reported by investigators in which disabled persons were claimed by facilitators to be engaged in signing a coherent message while their (the disabled person's) eyes were closed, or they were looking away from or showing no particular interest in the letter board.^[3] Some facilitators have countered that FC cannot be clearly disproven by this method, since a testing environment might feel confrontational and alienating to the subject.^[4]

Because the scientific consensus is that FC is a pseudoscience which causes great risk and emotional distress to people with communication disabilities, their families, and their caregivers, in 2015 Sweden banned the use of FC in special needs schools.^[5]

Overview

Facilitated communication is promoted as a means to assist people with severe communication disabilities in pointing to letters on an alphabet board, keyboard or other device so that they can communicate independently. It also appears in the literature as "supported typing",^[6] "progressive kinesthetic feedback",^[7] and "written output communication enhancement".^[7] It is somewhat related to the Rapid Prompting Method (RPM),^[8] also known as "informative pointing",^[7] which has no evidence of efficacy.^[9][10][11]

The person with disabilities, who is often not able to rely on speech to communicate, is referred to as the communication partner. The caregiver, educator or other provider offering physical support to the person with disabilities is called the facilitator. The facilitator holds or gently touches the communication partner's elbow, wrist, hand, sleeve or other parts of the body^[12] while the communication partner points to letters of the alphabet printed on a piece of paper or laminated cardboard,^[13] letters on an alphabet board, laptop, keyboard or mobile communication device such as an iPad.^[7]

The Canon Communicator, a small, portable, lightweight device that printed a tape of letters when activated, was popular with early FC users.^[14][15][16] However, two companies, Crestwood Co. of Glendale, Wisconsin and Abovo Co. of Chicopee, Massachusetts, would later be charged by the Federal Trade Commission for making "false and unsubstantiated claims" that the device could enable people with autism and other disabilities to communicate using FC. The companies settled and stopped mentioning FC in their advertising campaigns.^[17]

Proponents of FC claim that motor issues (e.g., the neurological condition of apraxia) prevent people with autism from communicating effectively. Although this claim is unsubstantiated (many people with autism have no difficulty pointing to or picking up objects independently, but do exhibit severe communication difficulties characteristic of the disorder),^[7] proponents argue that physical support and touch are necessary components of communicating through FC. Candidates for FC, presumably, "lack confidence in their abilities"^[12][18] and physical support, purportedly, helps them overcome this obstacle to communication.

The role of the facilitator is depicted by proponents as integral to helping the person with disabilities point to letters (by holding his or her finger or hand), reducing or eliminating uncontrollable arm movements (shaking or flapping), avoiding mistakes in typing, controlling the initiation of movement,^[19] and speaking words aloud.^[13] As well as physical support in typing, the facilitator provides verbal prompts and moral support.^{[20][21][22][23]} Along with human touch, the facilitator's belief in their communication partner's ability to communicate is seen to be a key component of the technique.^[24][25][26]

History

The FC movement may be traced back to the 1960s in Denmark where it failed to take hold because of lack of scientific evidence.^[22] FC experienced a period of rapid growth and popularity in Australia in the 1970-1980s, largely due to the efforts of special educator Rosemary Crossley.^{[15][27][28][29]} Arthur Schawlow, a Nobel laureate whose son was autistic,^[30] and Douglas Biklen, then a special education professor from Syracuse University^[18] who observed Crossley's work in Australia,^[12] are credited with popularizing FC in the United States in the late 1980s, early 1990s.^[30][15][19] FC has also received attention in many other parts of the world: Canada, Germany, Austria, Finland, France, Italy, the United Kingdom and Asia.^[7][27][31]

Early adopters of the technique praised FC for its apparent simplicity.^{[18][24][25][32][33]} FC was promoted as a "teaching strategy"^[34] and not an experimental or even risky technique that required objective evaluation or close monitoring.^[25] As early as 1991, however, more than 40 empirical studies published in peer-reviewed journals involving more than 400 people with autism not only failed to demonstrate FC's efficacy, but indicated that any success reported by proponents of the technique was due to facilitator influence.^[35] Many researchers attribute facilitator influence, for the most part, to non-conscious movements.^[36][37] It is thought that facilitators are genuinely unaware that they, not their client or family member, are controlling the communications.^[17][38]

In 1994, the American Psychological Association (APA),^[39][40] followed by the American Academy of Child and Adolescent Psychiatry (AACAP),^[40] the American Speech-Language-Hearing Association (ASHA),^[19][41][42] and the International Society for Augmentative and Alternative Communication (ISAAC)^[43] passed a resolution cautioning practitioners against the use of FC, citing lack of scientific evidence.^[17] The APA also recommended that information obtained via FC should not be used to confirm or deny allegations of abuse or make diagnostic or treatment decisions.^[38][44][45] In recognition of continued scientific evidence against the technique, other organizations joined suit, passing their own resolutions advising their membership to avoid the technique. A British government report concluded in 1998 that "the phenomenon fails to materialise once facilitator effects have been controlled. It would be hard to justify further research on this".^[3][46]

By 2001 Mark P. Mostert of Regent University School of Education in Virginia Beach, Virginia reported in the second of his comprehensive reviews of peer-reviewed literature investigating FC that "Facilitated Communication (FC) had largely been empirically discredited as an effective intervention for previously uncommunicative persons with disabilities, especially those with autism and related disorders. Key empirical findings consistently showed that the facilitator and not the client initiated communication."^[47]

Many people believed FC had passed its peak,^[48] dismissing it as a fad^[48] and characterizing it as pseudo-scientific.^[9][49] However, despite these findings, FC proponents continued their adherence to the technique, dismissing empirical investigations as irrelevant, flawed or unnecessary, characterized FC as an "effective and legitimate intervention" in pro-FC literature,^[47] and refused to change their minds or admit their mistakes.^[35][50][51] The FC movement retained popularity in some parts of the United States, Australia, and Germany,^[28] and continued to be used in many countries as of 2014.^[7] Mostert writes:

All the newer pro-FC studies operate from the premise that FC works and is a legitimate practice to be used in investigating any number of other phenomena related to people with autism and other related severe communication problems. Such assumptions increasingly morph FC into a valid intervention among readers who are unaware of the empirical dismissal of the intervention and who might not be skilled in distinguishing solid from suspect research. In this regard, it is likely that FC will continue to reinforce the assumptions of efficacy among parents and practitioners. These perceptions will continue to be reinforced by professional organizations such as the Facilitated Communication Institute at Syracuse University, a fairly wide acceptance of FC internationally, and the vacuum created by few if any future solid empirical studies that are likely to dissuade the faithful.^[47]

Facilitated Communication and RPM

Facilitated Communication is closely related to the Rapid Prompting Method (RPM), although proponents of RPM deny similarities with FC because the aide or facilitator in RPM holds the letter board but "does not touch the person typing"^[52] and that the prompts are "nonspecific."^[53] However, critics of RPM point out that subtle cuing takes place during RPM that makes it "highly susceptible to facilitator infuence."^[52]

Other similarities between RPM and FC include: reluctance or refusal to test facilitator/client pairs in controlled settings (purportedly because the process breaks the trust between the pair), presumed competence, reliance on anecdotal accounts as proof of efficacy, maintenance of practices, techniques and claims that are inconsistent with the known body of work around the behavior and communication skills of individuals with developmental disabilities or proven remediation techniques, claims of extraordinary literacy or intellectual breakthroughs, unconscious verbal or physical cuing by facilitators to obtain the expected responses, inadequate or non-existent protocols to fade supported or facilitated prompts.^[54][55]

Organizations that oppose facilitated communication

• The American Academy of Child and Adolescent Psychiatry (AACAP)^[40]
• The American Academy of Pediatrics (AAP)^[6][56]
• The American Association on Intellectual and Developmental Disabilities (AAIDD), previously called the American Association on Mental Retardation (AAMR)^[6][56]
• The American Psychiatric Association Council of Representatives (APACR)^[6][56]
• The American Psychological Association (APA)^[39][40]
• The American Speech-Language-Hearing Association (ASHA)^[19][41][42]
• The Association for Behavior Analysis International (ABAI)^[40][56]
• The Association for Science in Autism Treatment^[6]
• Behavior Analysis Association of Michigan (BAAM)^[6]
• The Federal Trade Commission (FTC)^[19]
• Heilpädagogische Forschung^[6]
• The Institute on Disability (IOD) at the University of New Hampshire^[57]
• The International Society for Augmentative and Alternative Communication (ISAAC)^[6]
• The New York State Department of Health^[56]
• The New Zealand Ministries of Health and Education^[6]
• The Scottish Intercollegiate Guidelines Network^[6]
• Socialstyrelsen (The National Board of Health and Welfare, Sweden)^[6]
• Speech Pathology Australia^[6]
• The Swedish Autism and Asperger Association^[58]
• The Victorian Advocacy League for Individuals and Disabilities Inc. (VALID)^[6]

The question of authorship

The Anne McDonald Centre, a centre for FC use in Melbourne directed by Rosemary Crossley.

One of the central questions regarding facilitated communication is who is really doing the communicating.^[19][26][51] The ultimate goal of using such a technique, as suggested by Stephen Von Tetzchner, professor of psychology at the University of Oslo, is genuine communication, in which the messages obtained through FC originate from the person with disabilities and are not, in any way, influenced by the facilitator. However, as von Tetzchner also points out, there are two other potential outcomes of FC:

1. automatic communication, in which the messages are produced by the facilitator without the communication partner's awareness (similar to automatic writing); and
2. false communication, in which the messages are consciously produced by the facilitator to further his or her own goals.^[22]

Proponents of facilitated communication

Facilitators using the technique reported unexpected literacy skills in people otherwise thought to be nonverbal, illiterate and incapable of learning more than basic life skills.^[18][24][33] They proposed that FC unlocked the thoughts and feelings of moderately to severely impaired individuals inaccessible by traditional means.^{[16][33][59][60][61]} Naturally, parents reported their joy and excitement upon seeing their child, with his or her facilitator, type "I love you" for the first time.^{[32][33][50][60][62][63][64]} Educators and care givers claimed students who were not directly instructed in reading, writing or mathematics were, through FC, capable of expressing complex thoughts through writing and solving multiplication and long division problems.^{[12][22][24][34][65][66]} It was felt that people with disabilities were, themselves, able to write books and poetry,^[64][67][68] to advocate for better treatment of people with disabilities,^[12][69] express a desire to go to college^[20][70][71] or leave their care facility,^[72] get married,^[7][26] have sexual relations,^[7][73][74] decide important medical issues, and, in some cases, report abuses allegedly occurring in their homes,^{[26][27][75][76]} despite being physically supported in their typing by facilitators. FC seemed to bring with it the hope of "shattering old beliefs and methods of working with autistics...and opening doors to new beliefs and methods that no one can yet conceive."^[16][20][23]

FC workshops, training materials, newsletters and newspaper accounts of its use contained emotionally compelling stories—alleged breakthroughs using FC—and, often, espoused the sentiment that FC could empower people with disabilities to "speak" for themselves for the first time. These materials, authored by "persuasive, sincere, authoritative-sounding individuals"^[18][77]—university professors, psychologists, speech-language pathologists—helped set up an ideologic mindset that led many well-meaning facilitators into a cognitive trap rife with confirmation bias and self-deception^{[39][73][78][79]} with one of the key assertions being "assume competence on the part of the communication partner without testing that assumption."^{[25][41][80][81]}

Guidelines for facilitators also included instructions to prevent errors during facilitation (by pulling back on the communication partner's hand), expect the emergence of hidden skills and sensitive personal information, use anecdotal data to validate authorship, avoid objective scrutiny, and emphasize "facilitated" over spoken communication.^[18] Through the guise of public opinion and qualitative studies, rather than the systematic gathering of empirical data through quantitative studies,^[82][83] facilitators were not only convinced of FC's efficacy, but ready to overturn more than 40 years of autism research.^[48][79][84]

Despite claims from FC promoters that autism is a motor control and emotional (i.e. confidence) problem that can be overcome with physical support,^[12][25][29] autism is largely accepted in the academic and clinical arenas as being a neurological problem often accompanied by intellectual disabilities. A core feature of autism is severe communication problems which cannot be overcome simply by supportively holding onto someone's hand.^[7][85]

Proponents claim that a few individuals using FC have developed the ability to type independently or with minimal support (e.g., a light touch to the shoulder or to the back of the neck).^[86] Facilitators attributing messages obtained through FC to their communication partners have co-authored books, articles and plays. These, seemingly, addressed the miraculous, freeing nature of FC and, purportedly, gave outsiders a glimpse of the inner worlds of people with autism: Annie's Coming Out (1980),^[87] The Secret World of Arthur Wold (1993),^[87] Out of Silence (1994),^[88] In Dark Hours I Find My Way (1995),^[89] Miracles (1997),^[90] The Mind Tree (2003),^[8] and I am Intelligent (2012),^[91] to name a few.

With their facilitators attending classes, assisting them in typing out class notes, completing homework and taking tests, some people with autism reliant on FC even graduated from high school or college.^{[13][86][92][93][94]} However, these claims of independent typing, to date, are anecdotal and have not been substantiated by objective means.^[7][9][95]

Critics of facilitated communication

People more critical of the technique noticed that, while the facilitators were intent on watching the letter board, their communication partners were often distracted, staring off into space, rolling around on the floor while facilitating,^[23] falling asleep,^[25] or otherwise not paying attention.^[13][34] Sometimes the communication partners spoke words that conflicted with the words being typed. The language structures and vocabulary used by children being facilitated often exceeded what would normally be considered appropriate for their age and experience.^[4] Supposedly highly competent individuals gave wrong answers to simple questions or information that should have been readily known (e.g. the name of the family dog, the names of family members, the spelling of their own name).^[12][96] Still others questioned why people with autism who exhibit excellent fine motor skills needed to have physical support from facilitators in order to point to a keyboard while many people with autism type independently.^[97]

Bernard Rimland, a research psychologist who founded the Autism Research Institute of San Diego and the Autism Society of America, asked "How is it possible that an autistic kid can pick up the last tiny crumbs of potato chips off a plate but not have sufficient motor coordination to type the letter E?"^[17] Howard Shane, director of the Center for Communication Enhancement at Children's Hospital in Boston and an associate professor at Harvard Medical School, finds it "curious that those being facilitated can only create [these] insightful comments" when helped by an assistant.^[97] Why, when technology allowed people with severe disabilities the opportunity to access independent communication with even the slightest movement (e.g., an eye wink, movement of an eyebrow, a puff of air into a straw), would a facilitator need to hold their hand?^[4][7]

Researchers familiar with the ideomotor,^[98] Clever Hans,^[36][99] or Ouija effect,^{[15][18][40][50][56][73][100][101]} noticed small movements made by the facilitators; movements of which the facilitator was often unaware. All this raised concerns about authorship, the role facilitators have in communicating through FC, and the time facilitating took away from the pursuit of scientifically proven communication techniques.^[7][102] Psychologist Adrienne Perry cautioned: "The adult or child with autism is made a 'screen' for a facilitator's hostilities, hopes, beliefs or suspicions" and that "concentrating on this method could deprive people of the chance to learn other skills that would be more useful to them."^[75]

While proponents insist that FC "should never involve guiding a person as he or she attempts to point or type,"^[50] facilitators can and do influence facilitated movements without realizing it. Gina Green, director of research for the New England Center for Autism in Massachusetts, E.K. Shriver Center for Mental Retardation, and Northeastern University,^[25][100] stated: "Very subtle influence can affect people's behavior. It doesn't even have to be touch. It can be the slightest sound, the slightest visual cue." And, in regards to videotapes in which it appears the person with autism is typing independently, "You can edit videotape and show whatever you want. They'll show you a close-up of the finger moving across the keyboard...but you're not getting what else is going on."^[44]

Pat Mirenda, professor in the Department of Educational and Counseling Psychology and Special Education at the University of British Columbia and co-author David R. Beukelman, Barkley Professor of Communication Disorders at the University of Nebraska-Lincoln, decided not to include FC in revised versions of their textbook Augmentative and Alternative Communication: Supporting Children and Adults with Complex Communication Needs. Earlier versions of the textbook are quoted in pro-FC literature. In 2015, Mirenda stated, "I came to recognize (painfully, to be honest) that my advocacy stance biased me to interpret what I saw on videotapes as independent typing even though other explanations were more plausible (e.g., subtle prompting, resulting in an ideomotor effect), and that, even if independent typing did occur subsequent to FC exposure, only correlational - but definitely not causal - evidence exists with regard to its relationship to FC. In short, I do not endorse FC as a communication or instructional technique, and I do not support its use."^[102]

Stephen N. Calculator of the University of New Hampshire, an early proponent of FC who also distanced himself from the movement because he could not replicate claims of independent communication in his own research studies,^[103] summed up the importance of determining the extent of facilitator influence: "The consequences of falsely attributing messages to communicators, rather than facilitators, continue to have significant financial, social and moral ramifications. Facilitators must take extraordinary precautions to assure that they are not unduly influencing messages and thereby impinging on communicators' freedom of speech. The rights of individuals to express their thoughts and ideas should not be circumvented by facilitators who communicate for them, unwilling or not."^[85]

Testifying in the Anna Stubblefield court case, psychology professor James Todd stated in court (FC) "It's become the single most scientifically discredited intervention in all of developmental disabilities." Every "methodologically sound" study of FC has shown it invalid.^[104] Writing about that case in the journal "Disability and Society", Mark Sherry voiced similar concerns about FC's lack of scientific validity, calling it a "sham", "hoax" and a "fraud." Sherry's was the first article published in a Disability Studies journal which thoroughly critiqued Stubblefield's actions - a noteworthy contribution because Stubblefield had also been in Disability Studies and had previously published about FC in the journal Disability Studies Quarterly.^[105] Sherry suggested that some of the defenders of Stubblefield (and FC more broadly) are either her personal friends or work in institutions which receive substantial income from providing FC.^[106]

The editorial for the Syracuse University newspaper called it "inexcusable" and "embarrassing" that the University continues to support FC after over 25 years of research has discredited it.^[107]

Tests of authorship of facilitated communication

Leaders in the FC movement, such as Crossley from Australia and Biklen in the United States, insist that communications by FC occur independent from the facilitator, whose role is to serve as a passive recipient of the messages,^[108] and rely on anecdotal and observational data (e.g., the existence of unique spellings or unexpected skills or revelations made during the communication session)^[14][19] in order to back up their claims.^[12][41] Individuals—parents and researchers alike—who questioned the stance and supported evaluating FC by objective methods were accused of being "oppressors of the disabled," told they were narrow-minded, outmoded, evil, jealous they weren't the ones to discover FC,^[25] and, in some cases, accused of hate speech for advocating a more studied approach.^[9][21][109]

Mostert wrote in 2001, "FC proponents must be encouraged to subject their claims to further scientific verification, the claims of anecdotal evidence notwithstanding. If any small part of FC is ever to be found effective or even plausible, it is abundantly clear that only by careful use of controlled experimental methods will this be established."^[110] Still, psychologists, speech-language pathologists, researchers and parents maintain that controlled testing, where the facilitator does not already know the answers to questions and, therefore, cannot inadvertently or purposefully cue their communication partner to obtain the desired answer, is the only way to determine whether or not the communications are truly independent.^{[9][111][112]} They caution that even though the facilitator may feel like he or she is not moving the other person's hand and that the messages are originating from the communication partner, the facilitator, may, indeed, be providing cues that lead to specific letters on the keyboard.^{[15][73][113]}

Kathleen M. Dillon, professor of psychology at Western New England College in Springfield, Massachusetts says, "This is a hard reality to grasp."^[15] As Julie Riggot wrote in an article for Scientific Review of Mental Health Practice, "Sometimes, the influence of the facilitator is less obvious, because the facilitator might not hold the person's hand, but support an arm or touch a shoulder--or even simply observe the typing."^[40] Because cueing is often subtle and is not possible to observe the influence of the facilitator in all instances where it might occur, naked-eye, informal observations and facilitator reports have proven unreliable in determining authorship.^[40] Many facilitators deny they are in any way influencing their communication partners' movements, even when faced with evidence to the contrary.^[28][40]

Facilitated communication and the media

Despite cautions from people like Eric Schopler, then director of an autism education program at the University of North Carolina, Chapel Hill and editor of the Journal of Autism, that promoting facilitated communication with no empirical evidence was "reckless",^[59] stories of FC's purported success were reported (and continue to be reported) in magazines such as Reader's Digest,^[50] in movies^{[28][40][44][97][114][115][116]} and plays,^[117] and on television shows such as ABC's 20/20 Prime Time Live with Diane Sawyer.^{[18][21][25][28][41][118]} Thousands of people—teachers, parents, speech pathologists, psychologists—struggling to find a way to communicate with individuals who, otherwise, demonstrated little ability to use spoken word to communicate their wants and needs—adopted FC with "blinding speed" with little public scrutiny or debate.^[18][25]

Of FC's rapid rise in popularity, particularly in the United States, doctors John W. Jacobson, James A. Mulick, and Allen A. Schwartz wrote:

The general acceptance of FC by the public and segments of the professional community has called into question the rigor with which educational and therapeutic interventions are evaluated in publicly funded programs and the ability of many professionals to critically assess the procedures they use. As such, FC serves as a case study in how the public and, alarmingly, some professionals, fail to recognize the role of science in distinguishing truth from falsity and its applicability to assessing the value of treatment modalities.^[19]

James Randi, a magician familiar with the ideomotor effect commonly attributed to dowsing and later linked to FC,^[36][119] put it more succinctly when he called facilitated communication "a crock that does more harm than good by raising false hopes among families of autistic children" after he was called in to investigate the technique at the University of Wisconsin at Madison in 1992.^[23][50] The James Randi Educational Foundation has offered a million-dollar prize "to a valid demonstration of facilitated communication." In 2009, Randi responded in an interview for the Rom Houben case, where it was shown that messages from a Belgian man who was believed to be in a coma for 23 years were generated by the facilitator, "Our prize is still there."^[120]

Validation

This issue of testing the messages obtained through FC has, historically, been problematic for those in the FC community who support its use. Proponents claim that testing is demeaning to the disabled person,^[12] that the testing environment creates performance anxiety,^[112][121] or that those being facilitated may purposely produce nonsense, refuse to respond or give wrong answers to counteract the negative attitudes of those who are skeptical of the technique.^[122] In 1992, when FC was fairly new to the United States, Douglas Biklen was quoted in The Washington Post as saying he "welcomed scientific studies", but the reporter, Amanda Spake, went on to explain:

he doesn't want to do them. He's an educator, not a psychiatrist, and like other educators who have written about facilitated communication, he is comfortable with the fact that there is often a lag time between the application of a new method and its scientific validation.^[76]

However, in arguing against suggestions that FC may be difficult or impossible to objectively test, James T. Todd, psychologist from Eastern Michigan University, wrote:

the determination of authorship in FC involves a straightforward application of basic experimental methods described comprehensively by Mill (1843) more than a century and half ago, but understood for millennia. We are not speaking of obscure or controversial techniques. We are speaking of authorship validation by selectively presenting different information to two people then observing what is produced.^[73]

Double-blind testing

Despite the FC community's reluctance to participate in testing, researchers outside the community did set up double-blind testing in an attempt to identify in a controlled way who was doing the communicating. Some testing was conducted as a direct response to a growing number of cases involving sexual abuse allegations that have plagued users of FC, including Crossley, made through the use of facilitated communication against parents, teachers, and caregivers of people with disabilities.^{[22][67][123][124][124][125]} However, a number of controlled evaluations of FC were conducted by clinicians, researchers, and program administrators who were considering the use of FC, but wanted an objective, empirical basis for deciding what role, if any, FC would have in their programs.^[18]

The O.D. Heck Center in Schenectady, New York was one of the first in the United States to go public with their findings,^[18] which were that their clients produced meaningful responses through facilitated communication only when their facilitators had access to the correct responses.^[41] The report went on to virtually rule out issues of confidence or skepticism on the part of the evaluators. All twelve participants (people with disabilities) were chosen for the evaluation because their facilitators believed in their ability to communicate through FC. The study demonstrated that the communication partners were "systematically and unknowingly" being influenced by their facilitators. The researchers wrote:

In fact, the nature of the findings permits us to assert that their output in facilitated communication was not only influenced, but was controlled and determined by the facilitators. To all appearances, these participants had been producing thoughtful communication, and several had consistently engaged in interactive conversations using facilitated communication. Many people serving these individuals believed that this output reflected the valid expressions of the participants.^[17][126]

The result of the O.D. Heck study seemed so startling, especially in light of the positive response FC was getting in the popular press, that Frontline featured the story in its 1993 "Prisoners of Silence".^{[4][28][40][56][79]} In 1993, Genae A. Hall, research director for the Behavior Analysis Center for Autism, wrote:

The fact that facilitators often control and direct the typing has been called "facilitator influence," which seems to be a misnomer. "Facilitator influence" suggests that the disabled person is emitting verbal behavior, and the facilitator is exerting partial control (or "influence") over that behavior. Although partial control certainly may occur when fading prompts within structured teaching programs, such control has not been demonstrated in most cases of FC. Rather than influencing the typed messages, the facilitator appears to be the sole author of those messages. Thus, the focus of analysis is shifted from the disabled person's behavior to the facilitator's behavior.^[101]

The O.D. Heck study was not the only double blind research study to receive such results. In fact, multiple studies had been conducted to determine authorship before or around the same time as the O.D. Heck study.^[25] Whenever conditions were adequately controlled to prevent the facilitator from knowing the answers to questions presented to the disabled communication partner, the results revealed facilitator influence, if not direct authorship.^{[18][22][127]}

In 1994, Thistledown Regional Centre in Ontario, Canada conducted an internal study of 20 people with autism and stopped using FC when the results showed facilitator influence was "contaminating the messages being produced."^[75] By 1995, these results had been replicated by researchers worldwide in at least 24 studies in credible, peer-reviewed research journals using "a variety of methods to see what happens when the facilitator doesn't know or can't guess the message that is expected or doesn't look at the letter display."^[25]

In 1997, reflecting on the trajectory FC has taken in several countries, including Denmark, the U.S. and Australia, von Tetzchner wrote:

In the struggle to keep up to date with an increasing number of published papers, both researchers and practitioners tend to forget history. In order to avoid making the same mistakes over again, the issues and processes underlying the rise and fall of facilitating techniques--as well as other intervention methods--in various countries should have a natural place in research reviews. When an intervention claimed to have exceptional effects disappears, the likely reason is lack of positive results.^[22]

By 2005, more than 50 controlled studies and blind tests had been conducted, in addition to numerous controlled tests conducted in legal cases. The studies consistently showed "without a doubt" that the messages obtained through facilitated communication were controlled by the facilitators and not their communication partners.^[40]

Skepticism

The concept and technique of facilitated communication is one that has been increasingly debated over the last few decades with the vast majority of evidence indicating that it is not scientifically valid. However, this information has not stopped many individuals from using this technique under various circumstances and furthermore, advocating for its effectiveness.^[128]

The overwhelming majority of evidence from studies conducted on the efficacy of this technique has revealed that the likely explanation for any "positive" results—that is, anything indicating that facilitated communication has worked—can be attributed to the facilitators themselves. Be it the facilitator attributing their own beliefs and views onto the individual, or the creating a pseudo-personality for the disabled individual based on their previous encounters with them, it is clear that the facilitator is really the one doing all the communicating. Further examination into this technique has discovered various examples in which the disabled individual using facilitated communication could correctly respond to simple questions only when the facilitator was in the room to hear the questions.^[129] This included asking the facilitator to leave and then proceeding to show the disabled individual a picture of an animal. Next, the facilitator would return to the room and be asked to help the individual answer the question: "what animal did I just show you?" In all of these cases, the questions were answered incorrectly. However, when asked questions while the facilitator was in the room, the correct response would be made. Shockingly, this technique has also led to a series of false sexual abuse cases in which the facilitator would indicate that the disabled individual revealed that they had been sexually abused. Unsurprisingly, these cases were later dismissed upon the discovery that these false accusations were actually a result of the facilitator fabricating these stories.

Finally, even further defining facilitated communication as a pseudoscience, the American Psychological Association (APA) issued a statement indicating that facilitated communication studies have repeatedly demonstrated that it is not a scientifically valid technique and that it is a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy.^[129]

Sexual abuse allegations and facilitator misconduct

There have been instances in which a person, through facilitated communication, seems to disclose experiences of sexual or physical abuse.^[76] Often, the alleged abuse is sexual and contains "extensive, explicit, pornographic details."^[18][130] While facilitators are taught to expect their communication partners to reveal sensitive, personal issues,^[25] it is not known whether FC generates more abuse allegations than other suggestive techniques.^[101][131]

Researchers suspect that facilitators involved in this type of case may, mistakenly, believe there is a link between early abuse and autism or, for other reasons, suspect familial abuse.^[101][131] As Green wrote in a 1995 article:

suggestions about sexual abuse permeate the culture. Just watch Oprah or Phil [Donahue] almost any time or scan the pop psychology section at your local bookstore. Couple that with mandatory abuse reporting laws, mix in a little bit of crusading zeal to "save" people with disabilities from mistreatment, and you have a potent set of antecedents for facilitators to produce allegations.^[25]

In 1993, Frontline's "Prisoners of Silence" featured the story of Gerry Gherardi of North Carolina who was accused, through FC-generated messages, of sexually abusing his son. Despite protestations of innocence, Gherardi was forced to stay away from his home for six months.^[4] The charges were dropped when court-ordered double-blind tests showed that Gherardi's son could not write.^[132] In the same year, Rimland reported in a New York Times article that he knew of about 25 cases where families were accused through facilitated communication of sexually abusing their children.^[112]

By 1995, there were five dozen known cases,^[131][133] with untold numbers of others settled without reaching public visibility. Since then, the number of cases continues to increase. In addition to accusations of sexual abuse, facilitators, reportedly, have fallen in love with their communication partners and, relying on FC for consent, initiated sexual, physical contact with people in their care,^[7][74] raising serious ethical and legal problems for facilitators, protective service agencies, law enforcement, court officials, educators, and family members alike.^[73]

The "Carla" case

About the same time FC was gaining popularity in the United States in the early 1990s, the Guardianship and Administration Board in Melbourne, Australia was reviewing a landmark case involving allegations of sexual abuse and facilitated communication. The 1990 case involved a 28- year-old woman (pseudonym "Carla") with severe disabilities who was removed, twice, from her home by state authorities because of messages obtained through FC that she was being sexually abused at home.

Nine facilitators, including Crossley, one of Australia's leaders in FC movement, over a course of nine months, obtained messages through FC that, allegedly involved incest, rape and other sexual depredations. Crossley had assessed Carla in August 1998, indicating that her ability to spell was very good and expressing amazement at the extent of Carla's vocabulary and perceptions during the evaluation. Officials removed Carla from the home when one of the facilitators, through another facilitated session, indicated Carla threatened suicide if she was not removed from her home.^[127][134]

A 15-month custody battle ensued, during which Carla was subjected to over 100 hours of psychological and other testing. In the end, the Guardianship Board concluded that Carla was severely intellectually disabled, unable to differentiate between letters of the alphabet, and could not have authored the messages. The double-blind testing, conducted by psychologist Tony Cantanese, demonstrated that the only meaningful responses obtained through FC were when the facilitator knew the questions being asked of Carla. The court determined that Carla and her family were "victims" and admonished the facilitators: "the one step that would have prevented the case occurring--prior verification that the woman could communicate with facilitated communication--had not been done." All charges were dropped and custody was granted to Carla's family.^{[76][127][134]}

The Storch case

In 1991, Mark Storch from Shokan, New York was charged with abusing his daughter after the Department of Social Services received reports that his daughter, Jenny, a 14-year-old with autism, had, through facilitated communication, disclosed recurring sexual assaults, including 200 vaginal and anal rapes. Storch's wife, Laura, was charged with neglect. Despite no physical evidence of abuse, inconsistencies in the facilitated testimony, and questions about the facilitator's troubling personal history, officials pressed charges, which led to a costly, 10-month legal battle. The case was dropped because FC lacked sufficient testing and acceptance in the scientific community.

Bennett Leventhal, head of pediatric psychology at the University of Chicago, testified in the Storch's defense, saying:

The obligation of an investigator into a new technique is to show how it works. With FC, there's this basic assumption of "What can it hurt?" The Storch trial is living proof of how dangerous it is to embrace new science before it has been tested.^[135]

The Wheaton case

In 1992, the parents of Betsy Wheaton, a 16-year-old nonspeaking person with autism, were, through facilitated communication, falsely accused of sexually abusing their daughter. The facilitator, Janyce Boynton, who was trained in FC at the University of Maine, interpreted Betsy's hitting and scratching during facilitated sessions as reenactments of abuses occurring at home. Boynton reported these incidences to the Department of Human Services, and Betsy and her brother were removed from the home. The brother was also implicated. The parents' attorney hired Howard Shane of Boston Children's Hospital to conduct testing of authorship. It was determined through double blind testing that Boynton, not Betsy, was authoring the messages obtained through facilitation. Boynton, unlike many other facilitators who have undergone testing, accepted the results, stopped using FC, and persuaded the school system to stop using FC as well.^{[4][28][37][73][136]}

Looking back on her training, Boynton could see that it had been inadequate. She had not worked with anyone who was nonverbal, and she was pronounced "good to go" after only two days of mostly lectures. She knew that disabled people suffer relatively high levels of abuse, was taught that there was a strong affinity between patient and facilitator, so, she has stated, "you get this sense in your head that you're the only one this person trusts... And then you get overly protective and you have that thought in your head that maybe they've been abused." She describes the process of facilitating as '"everything happening at once.... you're so distracted by other things." Until she was tested, she fully believed that she was protecting Betsy. Howard Shane states: 'You're expected to believe (the person has been abused) and then, bam, the accusation happens."^[137]

Of the Wheaton case, Todd wrote:

The real responsibility for the Wheaton tragedy lies with Rosemary Crossley, Douglas Biklen, and their acolytes. Despite all of their advanced degrees, professional credentials, and university appointments, they failed in their professional and ethical responsibility to show that FC was safe and effective before foisting it on the world. Having donned the trappings of expertise and put themselves out as authorities, they incurred what John Erskine called "the moral obligation to be intelligent." Long before they even thought to put pen to paper and write their extravagant tales of extra-ordinary awakenings, they should have heeded not just the technical lessons of Clever Hans, but the findings of more than a century of scientific and practical investigations of automatic writing, experimenter bias, mental telepathy, unconscious influence, subjective validation, stimulus leakage, expectancy effects, deception and self-delusion. Had they exercised due scientific diligence, the developers of FC would have quickly realized that they had done nothing better than turn pliant arms into Ouija planchettes and reinvent the seance.^[73]

The Cracchiolo case

In 1993, Gregory Cracchiolo, a teacher of students with severe developmental disabilities in Whittier, California, was accused of sexually assaulting four of his students, with facilitated communication being the only source of evidence. The student making the allegation was unable to communicate by speech to verify these claims. Cracchiolo lost his job and faced 11 felony counts of forcible sodomy and forced oral copulation. He faced a maximum sentence of 88 years in prison. While authorship testing was not done, the charges were dropped after a month, because FC lacked the scientific evidence to determine its efficacy. The prosecutor continued to believe the abuses occurred. Cracchiolo's career as an educator was ruined.^[100]

The Lehman case

In 1993, David and Jean Lehman of Newmarket, Ontario were charged with sexually abusing their 20-year-old son, Derek, based solely on evidence obtained through facilitated communication. At birth, Derek had been diagnosed with autism and severe mental retardation and, at the time of the allegations, lived in a group home. He was not able to speak but could use two hand signals: "please" and "toilet". He was not able to recognize numbers beyond three and was not aware of his own sex or that of others.

During authorship testing, conducted by Mary Konstantareas, psychology professor at the University of Guelph, Derek was not able to name an object that he had seen but his facilitators had not. After a year-long court battle, the charges were proven unfounded and dropped. The ordeal left the Lehmans in debt, nearly losing their business, and drove David Lehman to nearly committing suicide. The Lehmans filed an $8.5 million civil suit and accepted a settlement for an undisclosed amount. They were also granted custodianship of their son.^[75]

The New York case

In 1997, a New York couple, who had lost custody of their daughter, was awarded $750,000 by a federal jury when jurors concluded that the officials in the case "knew or should have known the girl's facilitated allegations of abuse were bogus."^[138]

The England case

In 1999, a 50-year-old business man from the south of England was accused, through FC, of abusing his 17-year-old son. The son, reportedly, had severe autism and epileptic fits^[139] and was not able to speak. Dame Elizabeth Butler-Sloss, President of the High Court Family Division, ruled on the first case of its kind in England,^[140] saying FC was "dangerous" and should not be used by UK courts to "back up or dismiss allegations of abuse."^[50][141] She also indicated the court was "entirely satisfied the allegations were unfounded",^[142] since there was no evidence that the father or anyone else was a perpetrator, or that the abuse had ever occurred.^[139][140]

The Wendrow case

In 2007, Julian Wendrow of West Bloomfield, Michigan was charged with sexually abusing his daughter, Aislinn, and placed in jail for 80 days.^[143] His wife, Tali, was accused of severely mentally and emotionally abusing her children and was forced to wear an electronic tether.^[38][73] Their 13-year-old son was also named as a perpetrator. Both children were placed in foster care.

The allegations resulted from messages obtained via FC at school while an aide helped guide the girl's hand.^[28] The case was a "virtual rerun" of the 1992 Betsy Wheaton case.^[7][28] When lawyers questioned the girl without the facilitator present, she was unable to answer questions, including "What color is your sweater?" and "Are you a boy or a girl?"^[38] The case fell apart due to lack of physical evidence of abuse and facilitated testimony that contained information inconsistent with the Wendrow's family, lifestyle and living arrangements: relatives that did not exist, Christian theology attributed to observant Jewish parents, nonexistent rooms and photos.^[38][73]

Aislinn testified, through FC, that she was afraid of her father because of a gun. Police found no guns in the home.^[144] As a result, the charges were dropped and the children returned to their parents. Prosecutors continued to believe the girl was afraid of her father.^[143] A wrongful arrest suit was settled for $1.8 million, which, according to the attorney representing the Police Department, was a business decision made by the insurance company and was not an admission of wrongdoing or liability.^[145]

The Gigi Jordan case

On February 3, 2010, Gigi Jordan of New York was found by police in the Peninsula New York hotel. She was incoherent from a drug overdose. Jude Mirra, her 8-year-old son, was also found, dead from a mixture of painkillers and anti-inflammatories which Jordan force-fed him. Jordan, at the time, was under the impression Mirra wanted to die because of alleged sexual abuse typed out during sessions involving FC. Despite testifying that she was "by Jude's side at all hours of the day", Jordan believed the biological father, her ex-husband, had been abusing the boy for years and that Mirra's diagnosis of autism was actually a catatonic psychosis brought on by the alleged abuse. To Jordan, the killing was "altruistic filicide"; a mercy killing.^[146][147]

Mirra, who was diagnosed with autism, was not able to speak. Jordan indicated that Mirra, through FC, had told her "I need a lot of drugs to die peacefully" and "I wish you do it soon." Although Jordan and Mirra communicated by typing together on a Blackberry, no witnesses ever observed Mirra type by himself. In reviewing typed messages provided by Jordan of her son's disclosures, court officials questioned whether Mirra had the capacity to understand or spell words like "aggressively" and "sadistic".^[146][148]

Jordan also believed her second ex-husband, a pharmaceutical executive, was stealing millions of dollars from her and wanted her killed. Both men denied the accusations. No evidence of any crimes committed in connection with the case were found against either of the two men.^[146] In November, 2014, the jury accepted Jordan's claim of extreme emotional disturbance and found her guilty of first-degree manslaughter in the death of her son.^[146]

The Wales case

In 2012, the parents of a young woman with severe intellectual disabilities, autism and profound communication problems were reunited with their daughter after the Public Services Ombudsman for Wales concluded they had been wrongfully arrested on suspicion of serious sexual assault obtained via FC. The family had been separated for six months. No charges were brought against the parents. Dr. Rowan Wilson, a psychiatrist, had, on November 8, 2010, assessed the woman's mental capacity using FC,^[149] though he, admittedly, had no knowledge or experience of the system.^[150] He also failed to consider the discrepancy between the woman's language fluency with and without FC.^[150] The Medical Practitioners Tribunal Services ruled that Wilson was still fit to practice because "he had shown remorse and insight into the errors he was highly unlikely to repeat." Wilson participated in further training in autism.^[150]

Anna Stubblefield case

In 2015, Anna Stubblefield, a Rutgers University–Newark philosophy professor, was found guilty of aggravated sexual assault against a man with severe mental disabilities. Stubblefield stated that the two of them had a mutually consenting relationship established through facilitated communication. At the time the investigation began in 2011, Stubblefield was the chair of Rutgers-Newark's philosophy department, whose professional work centered on ethics, race, and disability rights. She was married and had a family.^[151]

Stubblefield was indicted in January 2013. The victim was identified as D.J., a 33-year-old African-American man with severe mental disabilities, whom Stubblefield met in 2008 through D.J.'s brother, a student of hers and one of D.J.'s legal guardians. D.J. cannot speak, has cerebral palsy and is unable to stand independently or accurately direct movements of his body. Based on evidence of mental disability, his mother and brother were appointed his legal guardians.^[151] Stubblefield, a proponent of facilitated communication, used the technique with D.J., and stated that she had successfully communicated with him, determining he was of normal intelligence. She subsequently brought him to conferences where she "held him out as a success story". Speaking with the assistance of Stubblefield using facilitated communication, D.J. is quoted, by Stubblefield, in the chapter "Living a Good Life...in Adult-Sized Diapers" in Disability and the Good Human Life:

The right to communication is the right to hope....I am jumping for joy knowing I can talk, but don't minimize how humiliating it can be to know people jump to the conclusion I am mentally disabled. If people understand the punishment of perceiving other people as inhuman, then things will get better.^[152]

Stubblefield's web site says that she was "certified as a Facilitated Communication Trainer by the FC Institute (now the Institute on Communication and Inclusion^[153]) at the School of Education, Syracuse University. She provides motor planning support for communication and literacy for adults and children."^[154]

On Memorial Day in 2011, Stubblefield revealed to D.J.'s mother and brother that she had had sexual relations with D.J. and that they were in love. She attributed consent to messages received while facilitating. Testing of D.J. by family members failed to establish the ability to communicate, Stubblefield was thanked, but denied further access to D.J. However, she continued to attempt to maintain contact with D.J. and began challenging control of D.J.'s legal guardians over him.^[151] In August 2011, the family went to the Rutgers police, who contacted Essex County prosecutors.^[155][156]

Despite 20 years of psychological testing, which concluded that D.J. is severely mentally disabled, Stubblefield considered D.J. mentally capable, having the capacity to understand questions, communicate using facilitated communication, and give consent to sex. Prosecutors argued that FC has been scientifically discredited and that D.J. did not have the ability to give consent for or to refuse sexual relations.^[157] Stubblefield pleaded not guilty to the charges, but was put on administrative leave without pay and removed as chair of the philosophy department.^[155][157] D.J. was not allowed to testify using facilitated communication as it was ruled unreliable under New Jersey law.^[151] Experts evaluating D.J. testified he did not have the intellectual ability to consent to sexual activity.^[104] After a three-week trial, the jury found Stubblefield guilty of two counts of first-degree aggravated sexual assault.^[151] After conviction, the judge revoked bail saying that she was a flight risk. Sentencing, with possible penalties of between ten and twenty years in prison on each count, was scheduled for January 15, 2016. Stubblefield filed a motion to have the jury's verdict set aside on the grounds that there was "insufficient evidence" to prove that she knew or should have known that D.J. was not capable of giving consent.^[151] On January 15, 2016, she was sentenced to 12 years in prison.^[158] She will be required to register as a sex offender.^[158][159] In a press release, the Assistant Prosecutor, Eric Plant, said: "Knowing how desperately families of disabled individuals are for some hope, she misled the victim's family into believing that she was making progress in helping their son to communicate while all the while she was simply satisfying her own tawdry desires".^[160]

On April 3, 2017, Jeff McMahan, a former professor of philosophy at Rutgers and a professor of moral philosophy at the University of Oxford, and Peter Singer, professor of bioethics at Princeton University and laureate professor at the University of Melbourne, published a joint op-ed in the New York Times about this case. They expressed dismay at the exclusion of evidence at trial that might have supported Stubblefield's contention that D.J. is and was cognitively able to communicate using facilitated communication and consent to sexual activity, and concluded that "Stubblefield herself is a victim of grievous and unjust harms".^[161]

The Martina Susanne Schweiger case

In 2014, Martina Susanne Schweiger of Queensland, Australia received an 18-month suspended jail sentence for two counts of indecent dealing with a 21-year-old client with severe autism with whom she worked at a disability services home. The client required 24-hour support and was not able to speak, write or use manual sign language.

Through FC, Schweiger believed the client expressed love for her, a feeling she reciprocated. She also believed the client, again through FC, indicated a desire to have sex. On one occasion, Schweiger removed her clothes in front of her client. On another, she "play wrestled" with him, touching his penis with her hands and mouth. She confessed her actions to her employer. After hearing reports from Alan Hudson, psychology professor at RMIT University, that FC "did not work for the young man", Judge Gary Long of Maroochydore District Court found Schweiger guilty of the charges, indicating that FC was neither reliable nor accurate as a method of communication.^[74][162]

References

External links

• Institute on Communication and Inclusion at Syracuse University