Facilitated communication

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Facilitated communication
Alternative medicine
ClaimsDisabled 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 proposedLate 20th century
Original proponents Rosemary Crossley
Subsequent proponents Douglas Biklen

Facilitated communication (FC), or supported typing, is a scientifically discredited technique, [1] which claims to allow non-verbal people, such as those with autism, to communicate. The technique involves a facilitator guiding the disabled person's arm or hand in an attempt to help them type on a keyboard or other such device which they are unable to properly use if unfacilitated. [2]

Contents

There is widespread agreement within the scientific community and among disability advocacy organizations that FC is a pseudoscience. [3] Research indicates that the facilitator is the source of the messages obtained through FC, rather than the disabled person. The facilitator may believe they are not the source of the messages due to the ideomotor effect, which is the same effect that guides a Ouija board and dowsing rods. [4] [5] Studies have consistently found that FC is unable to provide the correct response to even simple questions when the facilitator does not know the answers to the questions (e.g., showing the patient but not the facilitator an object). [6] In addition, in numerous cases disabled persons have been assumed by facilitators to be typing a coherent message while the patient's eyes were closed or while they were looking away from or showing no particular interest in the letter board. [7]

Facilitated communication has been called "the single most scientifically discredited intervention in all of developmental disabilities". [8] Some promoters of the technique have claimed that FC cannot be clearly disproven because a testing environment might cause the subject to lose confidence. [9] However, there is a scientific consensus that facilitated communication is not a valid communication technique, and its use is strongly discouraged by most speech and language disability professional organizations. [3] There have been a large number of false abuse allegations made through facilitated communication.

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 has also been called "supported typing", [10] "progressive kinesthetic feedback", [11] and "written output communication enhancement". [11] It is related to the Rapid Prompting Method (RPM), [12] also known as "informative pointing", [11] which also has no evidence of efficacy. [13] [14] [15]

The person with disabilities, who is often unable to rely on speech to communicate, is called the communication partner, while the person holding their arm is called the facilitator. The facilitator holds or touches the communication partner's elbow, wrist, hand, sleeve or other parts of the body [16] while the communication partner points to letters of the alphabet on a keyboard or other device. [17] [11]

One device popular with early FC users was the Canon Communicator, which printed a tape of letters when activated. [18] [19] [20] However, two American companies were later charged by the Federal Trade Commission for making "false and unsubstantiated claims" that the device could enable disabled people to communicate using FC. The companies settled and stopped mentioning FC in their advertising campaigns. [21]

Proponents of FC claim that the reason people with autism cannot communicate effectively involves motor issues such as apraxia, and that they "lack confidence in their abilities" [16] [22] but physical support helps them overcome this limitation. However, this claim is unsubstantiated. Research indicates that non-verbal autistics are unable to communicate due to intellectual disability. [11]

The facilitator is depicted as helping the patient with pointing to letters, controlling involuntary arm movements, avoiding mistakes, initiating movement, [23] verbal prompts, and moral support. [17] [24] [25] [26] [27] It is also claimed that the facilitator must believe in the patient's ability to communicate. [28] [29] [30] Former facilitator Janyce Boynton, who came to reject the technique after taking part in double-blind trials, later reported that her training [31] [32] took for granted that the process worked, and that the complexity of facilitation made it hard to realise that messages were coming from her expectations and not from her patients:

When you're facilitating, you're so distracted by other things. You're carrying on conversations, you're asking and answering questions, you're trying to look at the person to see if they're looking at the keyboard...Your brain is so engaged that you lose sight of what's happening with your hand...that's what makes it feel like it's working because the more you practice it, the more the movements feel really fluid. [31] [33] [32]

Scott Lilienfeld, the Dobbs Professor of Psychology at Emory University, writing in The Neuroethics Blog, admonishes practitioners of mental health practice not to ignore their "epistemic duties – responsibilities to seek out and possess accurate knowledge about the world," and wrote:

Ultimately, the proponents of facilitated communication very much wanted to help individuals with autism. But the facilitated communication tragedy teaches us that good intentions are not sufficient. Good intentions paired with grossly inaccurate knowledge and an absence of a self-critical mindset can be disastrous. This tragedy also teaches us that by not attending to their epistemic duties, professionals can do grave harm without intending to do so. [34]

History

Keyboard of the type used in facilitated communication Dynawrite.jpg
Keyboard of the type used in facilitated communication

Techniques similar to FC appeared around the 1960s, with early observations regarding facilitated teaching of children with autism being published by Else Hansen (Denmark), Lorna Wing (England), and Rosalind Oppenheimer (U.S.). [35] Studies were made in Denmark in the 1960s and 1970s, [26] but did not have an impact outside of the country, [26] and the debate there died out in the early 1980s due to a lack of scientific evidence. [26] : 11 

In Australia, special educator Rosemary Crossley independently created facilitated communication in 1977, [26] : 12  where it became popular largely due to her efforts. [19] [34] [36] [37] [38] It was popularized in the United States beginning in the late 1980s by Arthur Schawlow and Douglas Biklen. [39] [22] [16] [19] [23] FC has also received attention in Asia and Europe. [11] [36] [40]

Early users of facilitated communication praised it for its apparent simplicity. [22] [28] [29] [41] [42] It was promoted as a "teaching strategy" [43] that did not require objective evaluation or close monitoring. [29] However, as early as 1991, more than 40 peer-reviewed studies had not only failed to demonstrate FC's efficacy, but indicated that any successes reported were due to facilitator influence. [44] This influence is usually attributed to non-conscious movements, [45] [46] and it is thought that facilitators are genuinely unaware that they are controlling the communications. [21] [47]

In 1994, the American Psychological Association (APA), [48] [49] passed a resolution cautioning against the use of facilitated communication, citing the lack of scientific evidence. [21] They also stated that information obtained via FC should not be used to confirm or deny allegations of abuse or to make diagnostic or treatment decisions. [47] [50] [51] In recognition of the continued scientific evidence against the technique, this was followed by similar statements from the American Academy of Child and Adolescent Psychiatry (AACAP), [49] American Speech-Language-Hearing Association (ASHA), [23] [52] [53] and the International Society for Augmentative and Alternative Communication (ISAAC) [54] In 1998, a British government report concluded that "the phenomenon fails to materialise once facilitator effects have been controlled. It would be hard to justify further research on this". [7] [55] By 2001, it was reported in a comprehensive review of peer-reviewed literature 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." [56]

Many people believed FC had passed its peak, [57] characterizing it as a fad [57] and pseudoscientific. [13] [58] However, promotion of the technique continued, with supporters dismissing empirical investigations as irrelevant, flawed, or unnecessary, and calling FC an "effective and legitimate intervention". [56] [44] [59] [60] As of 2014, the facilitated communication movement remained popular and it continued to be used in many countries. [37] [11] 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. [56]

Facilitated communication is closely related to the rapid prompting method (RPM), in which the facilitator holds the letter board instead of touching the patient. [61] Proponents of RPM deny similarities with FC and state that the prompts are "nonspecific". [62] However, RPM contains subtle cuing that makes it highly susceptible to influence from the facilitator. [61]

Other similarities between RPM and FC include: reluctance or refusal to test their claims in controlled settings (purportedly because the process breaks the trust between facilitator and client), presumed competence, reliance on anecdotal accounts as proof of efficacy, maintenance of practices, techniques and claims that are inconsistent with the known research, claims of extraordinary literacy or intellectual breakthroughs, unconscious verbal or physical cuing by facilitators to obtain the expected responses, and inadequate or non-existent protocols to account for the effects of the facilitator. [63] [64]

In 2019, a dispute about the use of Spelling to Communicate (S2C), a brand of RPM, developed between the Lower Merion School District and the parent of a child attending school there. The parents claimed the child was deprived of a free education because the district declined to pay for a private educational program based on S2C. In December of that year, the hearing officer in the Pennsylvania Office of Dispute Resolution found that there was no evidence that S2C enabled the child to communicate and thus the school district prevailed. [65]

Organizations supporting and opposing facilitated communication

Supporters

In 2010, Autism Spectrum Disorders: A Reference Handbook mentioned the Autism National Committee (AutCom), a parent-led nonprofit, as the main example of an organization that continued promoting facilitated communication, despite research in the mid-1990s which found that facilitators were doing the communicating rather than the children themselves. [66] As of 2022, AutCom continues to state on its website that it "[stands] with autistics, along with their families, friends, and allies, and others who know and respect them, who are working to gain a reliable, autonomous voice", and lists methods it supports including "Facilitated Communication Training (FCT), Rapid Prompting Method (RPM), Spelling to Communicate (S2C), or Informative Pointing Method". [67] Other organizations supporting FC have included the Association for Persons with Severe Handicaps (TASH) and the Autistic Self-Advocacy Network (ASAN). [68]

Opponents

Organizations opposing facilitated communication include:

Claims and evidence

The Anne McDonald Centre, a facilitated communication centre in Melbourne, Australia, directed by Rosemary Crossley Anne McDonald Centre.jpg
The Anne McDonald Centre, a facilitated communication centre in Melbourne, Australia, directed by Rosemary Crossley

There is widespread agreement within the scientific community and multiple disability advocacy organizations that FC is not a valid technique for communicating with those with autism spectrum disorder. [3] Instead, research indicates that the facilitator is the source of the messages obtained through FC (involving ideomotor effect guidance of the arm of the patient by the facilitator). [4] [5] Studies have consistently found that FC is unable to provide the correct response to even simple questions when the facilitator does not know the answers to the questions (e.g., showing the patient but not the facilitator an object). [6]

While video tapes exist that appear to show disabled people communicating through FC, or who have used it as a means to learn independent typing, these videos are widely regarded as inaccurate and misleading. According to one researcher, "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." [50]

Authorship of messages

Researchers attribute the facilitators' beliefs about authorship to the ideomotor effect (also called the Clever Hans or Ouija effect). [78] [45] [19] [22] While proponents say that FC should never involve guiding the patient, researchers attending an FC class in 1993 observed that physical force was used to prevent the patients from moving their hand away from the keyboard. [79] Facilitators may also influence movements without realizing it. [59] Researcher Gina Green 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." [80] Guidelines for facilitators instruct practitioners to expect the emergence of hidden skills and sensitive personal information, to use anecdotal data to validate authorship, to avoid objective scrutiny. [22]

Some observers have reported that while the facilitators were watching the letter board, their communication partners were often distracted, staring off into space, rolling around on the floor, [27] falling asleep, [29] or otherwise not paying attention. [17] [43] In other cases, the communication partners spoke words that conflicted with the words being typed. [9] Individuals described as highly competent would also give wrong answers to simple questions or information that they should have readily known (e.g. the name of the family dog, the names of family members, the spelling of their own name) but which facilitators did not. [16] [81]

Proponents of the technique believed that patients who had not been taught reading, writing or mathematics were capable of writing down complex thoughts and solving multiplication problems. [26] [28] [43] [82] Patients have also been claimed to write books and poetry, [83] [84] advocate for better treatment of people with disabilities, [85] express a desire to get married, [11] [30] have sexual relations, [11] [86] [87] decide important medical issues, and, in some cases, report abuses allegedly occurring in their homes. [36] [88] [89] According to psychologist Adrienne Perry, "The adult or child with autism is made a 'screen' for a facilitator's hostilities, hopes, beliefs or suspicions". [88]

Autism

While proponents of FC claim that autism is primarily a motor control problem that can be overcome with physical support, [16] [29] [38] this view is not accepted by the scientific community. [90] [91] Autism is often accompanied by intellectual disabilities affecting language and communication which cannot be overcome by supportively holding someone's hand. [11] [92] Facilitators reject objective data and use public opinion and qualitative studies [93] [94] to promote FC's efficacy despite contradicting a long history of autism research. [57] [95] [96] In some cases, patients learn to give specific responses to cues from the facilitator, such as in cases where the facilitator only touches their shoulder or does not touch the patient at all. [49] Proponents also say that a few individuals using FC have developed the ability to type independently or with minimal support, [97] but these claims are anecdotal and have not been substantiated. [11] [13] [98] Many facilitators deny they are influencing their communication partners' movements, even when faced with evidence to the contrary. [37] [49]

According to the American Academy of Pediatrics (AAP) clinical report, Identification, Evaluation, and Management of Children With Autism Spectrum Disorder, published in January, 2020, the "Current scientific evidence does not support the use of facilitated communication in which a nonverbal individual is guided to communicate. This differs from augmentative and alternative communication, in which the individual is taught to communicate independently." [99]

Belief in facilitated communication is promoted by its status as a claimed "miracle cure" presented when parents are undergoing stress and grief from learning that their child has a disability. The only evidence of success is the transcript of apparent communication. [79] In some cases of autism, parents reject the diagnosis and say that their child's disability is physical rather than developmental, and with FC or RPM their beliefs are confirmed. [100] [91] Researchers James Mulick, John Jacobson and Frank Kobe state that FC is used to "...stroke their hopes with empty promises, regardless of their sincerity, while reaping personal or political rewards and working hard to prevent systematic verification of their claims". They add that "people with handicaps can be valued members of their families and communities without resorting to appeals to miracle cures" and that genuine help is available, but "advances in treatment and understanding come at the price of rigorous training, dedication to accuracy and scientific standards, and objective verification of all treatment claims". [79]

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?" [21] 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. [101] 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? [9] [11]

Testifying in the Anna Stubblefield court case, psychology professor James Todd called facilitated communication "the single most scientifically discredited intervention in all of developmental disabilities" and that every methodologically sound study of FC has shown it to be invalid. [8] 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. [102] 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. [103] A newspaper editorial from Syracuse University, where the techniques relevant to the case had been taught, called it "inexcusable" and "embarrassing" that the university continues to support FC after over 25 years of research has discredited it. [104]

Opposition to research

Members of the FC movement rely on anecdotal and observational data (e.g., the existence of unique spellings or unexpected skills or revelations made during the communication session) [18] [23] in order to back up their claims. [16] [52] However, because cueing is often subtle and it is not always possible to observe the influence of the facilitator, informal observations and facilitator reports have proven unreliable in determining authorship. [49] [90]

Parents and researchers who questioned FC's effectiveness and supported evaluating FC by objective methods have been accused of being "oppressors of the disabled," told they were narrow-minded, outmoded, evil, jealous they were not the ones to discover FC, [29] and, in some cases, accused of hate speech for advocating a more studied approach. [13] [25] [105] Proponents claim that testing is demeaning to the disabled person, [16] that the testing environment creates performance anxiety, [106] 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. [107]

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." [108] The only way to determine whether communications are truly independent is to perform 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. [13] [109] [106] Even if the facilitator feels like they are not moving the other person's hand, they can still be providing cues that lead to specific letters on the keyboard. [19] [86] [110]

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 article went on to say:

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. [89]

Although proponents say that FC is difficult or impossible to objectively test, psychologist James T. Todd 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. [86]

Blind testing

Despite the FC community's reluctance to participate in testing, researchers outside the community set up blinded experiments to identify who was doing the communicating. Some of the tests were conducted as a direct response to cases involving sexual abuse allegations made through facilitated communication against parents, teachers, and caregivers of people with disabilities. [26] [83] [111] [112] [113] However, a number of controlled evaluations were also 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. [22]

The O.D. Heck Center in Schenectady, New York was one of the first in the United States to go public with their findings, [22] which were that their clients produced meaningful responses through facilitated communication only when their facilitators had access to the correct responses. [52] The report also ruled 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. [21] [114]

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". [9] [37] [49] [69] [95] 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. [115]

Multiple other double-blind studies were being conducted at the same time, [29] and whenever conditions were adequately controlled to prevent the facilitator from knowing the answers to questions, the results revealed facilitator influence, if not direct authorship. [22] [26] [116]

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." [88] By 1995, these results had been replicated by researchers worldwide in at least 24 studies in credible, peer-reviewed research journals using multiple different methods that ensure the facilitator does not know or cannot guess the expected message, or does not look at the letters. [29]

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. [26]

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. [49]

The vast majority of evidence now indicates that facilitated communication 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. [117] The overwhelming majority of studies conducted on the efficacy of this technique has revealed that any "positive" results indicating that facilitated communication has worked can be attributed to the facilitators themselves. [90] Be it the facilitator attributing their own beliefs and views onto the individual, or 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. [118]

The American Psychological Association (APA) issued a statement in 1994 that there was "no scientifically demonstrated support for its efficacy." [119] Finally, even further defining facilitated communication as a pseudoscience, the 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. [119]

Previous proponents

Pat Mirenda, a 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, had included FC in early versions of their textbook Augmentative and Alternative Communication: Supporting Children and Adults with Complex Communication Needs. These versions are quoted in pro-FC literature. However, they decided not to include FC in revised versions, and in 2015 Mirenda stated that she, "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." [120]

Stephen N. Calculator of the University of New Hampshire, an early proponent of FC, later distanced himself from the movement because he could not replicate claims of independent communication in his own research studies. [121] He described 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." [92]

Janyce Boynton, who at one time was a strong FC proponent, is now one of FC's leading critics. In the early 1990s, she was the facilitator for a non-speaking high school girl with autism who seemed to describe having been sexually abused by her parents, resulting in the girl and her brother being removed from their home. However, systematic testing by Howard Shane revealed that the girl could not have been the author of the messages. The case was described in the 1993 PBS Frontline documentary "Prisoners of Silence". Unlike many in the FC-proponent community, Boynton accepted the evidence from Shane's testing and other well-controlled scientific studies. She stopped using FC, convinced her school administration to implement a system-wide prohibition on its use, and apologized to the falsely accused parents of the girl she had worked with. In a presentation at the CSICON meetings in 2019, Boynton argued that most FC facilitators are well-meaning but are caught up in a belief system that leads them to discount the overwhelming evidence that FC does not work. [122] She maintains a clearinghouse of professional articles and media coverage about FC, and helped in convincing the University of Northern Iowa to stop sponsoring an annual workshop that included instruction in FC. [123] As stated by another member of that group (Stuart Vyse), "this is just the beginning. There are a number of other universities and governmental organizations that tacitly or explicitly endorse FC and/or its related techniques, and Ms. Boynton and her allies have their eyes on a number of these future targets". [124]

In 2006, Belgian neurologist Steven Laureys claimed that Rom Houben, a comatose man, was able to type out thoughts on a keypad with the help of facilitated communications. However, when independent tests demonstrated that FC could not produce the correct answers to questions if the facilitator had not been in the room, he agreed that Houben had not been communicating. [125]

Presentation in the media

Stories of purported successes are still reported in magazines such as Reader's Digest , [59] in movies [37] [49] [50] [101] [126] [127] [128] and plays, [129] and on television shows such as ABC's 20/20 Prime Time Live with Diane Sawyer. [22] [25] [29] [37] [52] [130] Thousands of people—teachers, parents, speech pathologists, psychologists—struggling to find a way to communicate with individuals who, otherwise, demonstrated little ability to use words to communicate—adopted FC with "blinding speed" with little public scrutiny or debate. [22] [29] Eric Schopler, then director of an autism education program at the University of North Carolina, Chapel Hill and editor of the Journal of Autism, described promoting facilitated communication with no empirical evidence as "reckless". [131]

Describing this 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. [23]

James Randi, a magician familiar with the ideomotor effect commonly attributed to dowsing and later linked to FC, [45] [132] was called in to investigate facilitated communication at the University of Wisconsin at Madison in 1992, and later called it "a crock that does more harm than good by raising false hopes among families of autistic children". [27] [59] 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." [133]

Institutional support

Syracuse University

In 1992, Syracuse University founded the Facilitated Communication Institute to promote the use of FC. Douglas Biklen was appointed as the institute's first director. In 2010, the name was changed to the Institute on Communication and Inclusion (ICI). It is part of the Center on Disability and Inclusion of the School of Education. According to the ICI website, the Institute "... is an active research, training, and support center, and the nation’s leading resource for information about communication and inclusion for individuals who type to communicate." The Institute carries out training and research in FC and publishes scholarly articles, books, and films. [134] [135]

University of Northern Iowa

From 2014 through 2018, the University of Northern Iowa (UNI) held the Midwest Summer Institute that focused on "inclusive schools, employment and daily living, as well as communication and supported or facilitated typing for people with autism spectrum disabilit[ies] and other complex communication needs." [136] In 2018, following the release of a statement from scientists and academics arguing FC had long been discredited and calling it an "invalidated and demonstrably harmful practice," UNI announced it would stop supporting the conference. [137] [74]

Abuse allegations and facilitator misconduct

There have been instances in which facilitated communication produces allegations of sexual or physical abuse. [89] Often, the alleged abuse is sexual and contains "extensive, explicit, pornographic details." [22] [138] It is not known whether FC generates more abuse allegations than other suggestive techniques. [115] [139]

Researchers suspect that facilitators involved in this type of case may, mistakenly, believe there is a link between early abuse and autism, or suspect familial abuse for other reasons. [115] [139] 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. [29]

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. [9] The charges were dropped when court-ordered double-blind tests showed that Gherardi's son could not write. [140] 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. [106]

By 1995, there were 60 known cases, [139] [141] with many others settled without reaching public visibility. Since then, the number of cases continues to increase. In addition to accusations of sexual abuse, facilitators have reportedly fallen in love with their communication partners and, relying on FC for consent, initiated sexual, physical contact with people in their care, [11] [87] raising serious ethical and legal problems. [86]

Anna Stubblefield

In 2015, Anna Stubblefield, a Rutgers University–Newark philosophy professor, was found guilty of aggravated sexual assault against a man with severe mental disabilities. A proponent of facilitated communication, Stubblefield's web site described her as "certified as a Facilitated Communication Trainer by the FC Institute at the School of Education, Syracuse University. She provides motor planning support for communication and literacy for adults and children." [142] 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, [143] but she was subsequently put on administrative leave without pay and removed as chair of the philosophy department. [144] [145]

The victim was identified as D.J., a 33-year-old African-American man with severe mental disabilities who cannot speak, has cerebral palsy, and is unable to stand independently or accurately direct movements of his body. Based on his disability, his mother and brother were appointed his legal guardians. [143] Stubblefield 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". In 2011, she revealed to his mother and brother that she had had sexual relations with D.J. and said that they were in love, attributing consent to messages received while facilitating. Stubblefield stated that the two of them had a mutually consenting relationship established through facilitated communication. However, testing of D.J. by family members failed to establish the ability to communicate, and Stubblefield was thanked but denied further access to D.J. She continued to attempt to maintain contact with D.J. and began challenging control of D.J.'s legal guardians over him. [143] In August 2011, the family contacted the police. [144] [146]

Stubblefield pleaded not guilty to the charges and said that FC revealed D.J. was mentally capable, while prosecutors said that FC was scientifically discredited and that D.J. did not have the ability to consent to sexual relations. [144] [145] Experts evaluating D.J. testified he did not have the intellectual ability to consent to sexual activity. [8] Facilitated communication testimony from D.J. was not allowed as the technique was ruled unreliable under New Jersey law. [143] After a three-week trial, the jury found Stubblefield guilty of two counts of first-degree aggravated sexual assault. [143] After conviction, the judge revoked bail, saying that she was a flight risk, [143] and she was sentenced to 12 years in prison. [147] This included requiring her to register as a sex offender. [147] [148] In July 2017, an appeals court overturned her conviction and ordered a retrial, [149] [150] and in 2018 she pleaded guilty to "third-degree aggravated criminal sexual contact" and was sentenced to time served. [150] In October 2016, the family was awarded $4 million in a civil lawsuit against Stubblefield. [151]

The 2023 documentary film Tell Them You Love Me by Louis Theroux covers the story. [152]

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.

Schweiger believed the client expressed love for her through FC, which she claimed to reciprocate. 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. [87] [153]

See also

Films

Related Research Articles

Diagnoses of autism have become more frequent since the 1980s, which has led to various controversies about both the cause of autism and the nature of the diagnoses themselves. Whether autism has mainly a genetic or developmental cause, and the degree of coincidence between autism and intellectual disability, are all matters of current scientific controversy as well as inquiry. There is also more sociopolitical debate as to whether autism should be considered a disability on its own.

<span class="mw-page-title-main">Neurodiversity</span> Non-pathological explanation of variations in mental functions

The neurodiversity paradigm is a framework for understanding human brain function that recognizes the diversity within sensory processing, motor abilities, social comfort, cognition, and focus as neurobiological differences. This diversity falls on a spectrum of neurocognitive differences. The neurodiversity paradigm argues that diversity in human cognition is normal and that some conditions generally classified as disorders, such as autism, are differences and disabilities that are not necessarily pathological.

<i>Autism Is a World</i> Documentary promoting a discredited communication technique

Autism Is a World is an American short subject documentary film by Academy Award Producer and Director Gerardine Wurzburg and allegedly written by Sue Rubin, an autistic woman who is said to have learned to communicate via the discredited technique of facilitated communication. It was nominated in the 77th annual Academy Awards for Best Documentary Short Subject.

Discrete trial training (DTT) is a technique used by practitioners of applied behavior analysis (ABA) that was developed by Ivar Lovaas at the University of California, Los Angeles (UCLA). DTT uses mass instruction and reinforcers that create clear contingencies to shape new skills. Often employed as an early intensive behavioral intervention (EIBI) for up to 25–40 hours per week for children with autism, the technique relies on the use of prompts, modeling, and positive reinforcement strategies to facilitate the child's learning. It previously used aversives to punish unwanted behaviors. DTT has also been referred to as the "Lovaas/UCLA model", "rapid motor imitation antecedent", "listener responding", "errorless learning", and "mass trials".

High-functioning autism (HFA) was historically an autism classification to describe a person who exhibited no intellectual disability but otherwise showed autistic traits, such as difficulty in social interaction and communication, as well as repetitive, restricted patterns of behavior. The term is often applied to autistic people who are fluently verbal and of at least average intelligence. However, many in medical and autistic communities have called to stop using the term, finding it simplistic and unindicative of the difficulties some autistic people face.

<span class="mw-page-title-main">Augmentative and alternative communication</span> Techniques used for those with communication impairments

Augmentative and alternative communication (AAC) encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language. AAC is used by those with a wide range of speech and language impairments, including congenital impairments such as cerebral palsy, intellectual impairment and autism, and acquired conditions such as amyotrophic lateral sclerosis and Parkinson's disease. AAC can be a permanent addition to a person's communication or a temporary aid. Stephen Hawking, probably the best-known user of AAC, had amyotrophic lateral sclerosis, and communicated through a speech-generating device.

Douglas Paul Biklen is an American educator, fine art photographer, leading proponent of facilitated communication, a scientifically discredited technique which purports to allow non-verbal people to communicate; and an advocate of educational inclusion. A graduate of Bowdoin College, Biklen joined Syracuse University in 1969 and completed his doctorate there in 1973. He was controversially appointed Dean of the Syracuse University School of Education in 2005 and retired in 2014. Biklen has authored and co-authored several books and served on production teams for several documentary films, including 2004's Autism Is a World.

<span class="mw-page-title-main">Autism therapies</span> Therapy aimed at autistic people

Autism therapies include a wide variety of therapies that help people with autism, or their families. Such methods of therapy seek to aid autistic people in dealing with difficulties and increase their functional independence.

<span class="mw-page-title-main">Classic autism</span> Former neurodevelopmental disorder now classified under autism spectrum disorder

Classic autism, also known as childhood autism, autistic disorder, (early) infantile autism, infantile psychosis, Kanner's autism, Kanner's syndrome, or (formerly) just autism, is a neurodevelopmental condition first described by Leo Kanner in 1943. It is characterized by atypical and impaired development in social interaction and communication as well as restricted, repetitive behaviors, activities, and interests. These symptoms first appear in early childhood and persist throughout life.

Rosemary Crossley was an Australian author and advocate for disability rights. She was one of the first major advocates for facilitated communication (FC), a scientifically discredited technique which purports to help non-verbal people communicate. Crossley was the director of the Anne McDonald Centre near Melbourne, Victoria, which provides assessment and augmentative communication services in Victoria, Australia. The award-winning 1984 film Annie's Coming Out, known as Test of Love in the USA, was made about her work and life with a woman named Anne McDonald, whom she met at St Nicholas's Hospital in Melbourne in the 1970s and later brought to live with her. Crossley dedicated her life to helping those with little or no functional speech. She died after a short battle with cancer on 10 May 2023, at the age of 78.

Disability abuse is when a person with a disability is abused physically, financially, sexually and/or psychologically due to the person having a disability. This type of abuse has also been considered a hate crime. The abuse is not limited to those who are visibly disabled or physically deformed, but also includes those with learning, intellectual and developmental disabilities or mental illnesses.

Autism, also called autism spectrum disorder (ASD), is a neurodevelopmental disorder characterized by symptoms of deficient reciprocal social communication and the presence of restricted, repetitive, and inflexible patterns of behavior. Autism generally affects a person's ability to understand and connect with others, as well as their adaptability to everyday situations, with its severity and support needs varying widely across the underlying spectrum. For example, some are nonverbal, while others have proficient spoken language.

Marjorie Anna Stubblefield is a former professor of philosophy at Rutgers University–Newark, practitioner of facilitated communication, and convicted sexual assaulter. Stubblefield was found guilty of raping a man with severe mental disabilities whom she falsely claimed to have enabled to communicate using the controversial practice of facilitated communication. She was sentenced to 12 years in prison. In October 2016, the family was awarded $4 million in a civil lawsuit against Stubblefield. The 2023 documentary film Tell Them You Love Me covers the abuse case.

<span class="mw-page-title-main">Howard Shane</span> American autism researcher

Howard C. Shane is director of the Autism Language Program and Communication Enhancement Program at Children's Hospital in Boston, Massachusetts, former director of the Institute on Applied Technology, and associate professor at Harvard Medical School. He is internationally known for his research and development of augmented and alternative communication systems to support the communication needs of people with neuromuscular disorders, autism and other disabilities.

Discrimination against autistic people involves any form of discrimination, persecution, or oppression against people who are autistic. Despite contention over its status as a disability, discrimination against autistic people is considered to be a form of ableism.

The rapid prompting method (RPM) is a pseudoscientific technique that attempts to aid people with autism or other disabilities to communicate through pointing, typing, or writing. Also known as Spelling to Communicate, it is closely related to the scientifically discredited technique facilitated communication (FC). Practitioners of RPM have failed to assess the issue of message agency using simple and direct scientific methodologies, saying that doing so would be stigmatizing and that allowing scientific criticisms of the technique robs people with autism of their right to communicate. The American Speech-Language-Hearing Association has issued a statement opposing the practice of RPM.

Deej is a 2017 documentary about David James (DJ) Savarese, a nonspeaking autistic teenager who communicates with a voice synthesizer. The film has been criticized as using the scientifically discredited facilitated communication technique; however, it has been stated that Deej actually used augmentative and alternative communication, which is often mistaken for facilitated communication.

Soma Mukhopadhyay is credited with creating rapid prompting method, a pseudoscientific technique that attempts to aid people with autism or other disabilities to communicate through pointing, typing, or writing. It is also known as RPM and Spelling to Communicate.

Ido Kedar is a non-speaking autistic person who has been described as having learned to communicate through the rapid prompting method, a pseudoscientific technique that attempts to aid people with autism or other disabilities to communicate through pointing, typing, or writing. He is credited as the author of an opinion piece and two books, the book Ido in Autismland and the novel In Two Worlds.

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