Facilitated communication

Facilitated communication (FC), or supported typing, is a scientifically discredited technique that 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 that they are unable to properly use if unfacilitated.

There is widespread agreement within the scientific community and among disability advocacy organizations that FC is a pseudoscience. 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. 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). 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.

James Todd called facilitated communication "the single most scientifically discredited intervention in all of developmental disabilities". 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. "progressive kinesthetic feedback", and "written output communication enhancement". also known as "informative pointing",

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 while the communication partner points to letters of the alphabet on a keyboard or other device. 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.

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" It is also claimed that the facilitator must believe in the patient's ability to communicate. Former facilitator Janyce Boynton, who came to reject the technique after taking part in blind testing, later reported that her training

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:

History

right|thumb|alt=a communication device resembling a computer keyboard with a small liquid-crystal display attached to the top| 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 Oppenheim (U.S.). Studies were made in Denmark in the 1960s and 1970s, It was popularized in the United States beginning in the late 1980s by Arthur Schawlow and Douglas Biklen. FC has also received attention in Asia and Europe.

Early users of facilitated communication praised it for its apparent simplicity. It was promoted as a "teaching strategy" that did not require objective evaluation or close monitoring. This influence is usually attributed to non-conscious movements, and it is thought that facilitators are genuinely unaware that they are controlling the communications.

In 1994, the American Psychological Association (APA), passed a resolution cautioning against the use of facilitated communication, citing the lack of scientific evidence. 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), and the International Society for Augmentative and Alternative Communication (ISAAC) 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". 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." characterizing it as a fad However, promotion of the technique continued, with supporters dismissing empirical investigations as irrelevant, flawed, or unnecessary, and calling FC an "effective and legitimate intervention". As of 2014, the facilitated communication movement remained popular and it continued to be used in many countries. Proponents of RPM deny similarities with FC and state that the prompts are "nonspecific". However, RPM contains subtle cuing that makes it highly susceptible to influence from the facilitator.

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.

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. 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". Other organizations supporting FC have included the Association for Persons with Severe Handicaps (TASH) and the Autistic Self-Advocacy Network (ASAN).

Opponents

Organizations opposing facilitated communication include:

The American Academy of Child and Adolescent Psychiatry (AACAP)
The American Psychiatric Association (APA)
The Association for Behavior Analysis International (ABAI)
The Federal Trade Commission (FTC)
The University of Northern Iowa
The New York State Department of Health
Speech Pathology Australia
The Victorian Advocacy League for Individuals and Disabilities Inc. (VALID) Guidelines for facilitators instruct practitioners to expect the emergence of hidden skills and sensitive personal information, to use anecdotal data to validate authorship, and to avoid objective scrutiny.

Proponents of the technique believed that patients who had not been taught reading, writing, or mathematics could write down complex thoughts and solve multiplication problems. Patients have also been claimed to write books and poetry, advocate for better treatment of people with disabilities, express a desire to get married, decide important medical issues, and, in some cases, report abuses allegedly occurring in their homes. According to psychologist Adrienne Perry, "The adult or child with autism is made a 'screen' for a facilitator's hostilities, hopes, beliefs or suspicions". Autism is often accompanied by intellectual disabilities affecting language and communication which cannot be overcome by supportively holding someone's hand. to promote FC's efficacy despite contradicting a long history of autism research. 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. but these claims are anecdotal and have not been substantiated. Many facilitators deny they are influencing their communication partners' movements, even when faced with evidence to the contrary.

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.

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?" 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? 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. 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. 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.

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) Proponents claim that testing is demeaning to the disabled person,

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." 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. 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.

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: <blockquote>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. However, several 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.</blockquote>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".</blockquote> Multiple other double-blind studies were being conducted at the same time,

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." 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.

The American Psychological Association (APA) issued a statement in 1994 that there was "no scientifically demonstrated support for its efficacy." 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.

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. 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 ensure 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."

Janyce Boynton, who was once 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. 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. 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".

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.

Presentation in the media

Stories of purported successes are still reported in magazines such as Reader's Digest, and plays, and on television shows such as ABC's 20/20 Prime Time Live with Diane Sawyer. 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.

Describing this rapid rise in popularity, particularly in the United States, doctors John W. Jacobson, James A. Mulick, and Allen A. Schwartz wrote: <blockquote>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. 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".

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.

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." 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.

Abuse allegations and facilitator misconduct

There have been instances in which facilitated communication produces allegations of sexual or physical abuse. It is not known whether FC generates more abuse allegations than other suggestive techniques.

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. 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. 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, 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, but she was subsequently put on administrative leave without pay and removed as chair of the philosophy department.

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. Experts evaluating D.J. testified he did not have the intellectual ability to consent to sexual activity. This included requiring her to register as a sex offender. In July 2017, an appeals court overturned her conviction and ordered a retrial, and in 2018 she pleaded guilty to "third-degree aggravated criminal sexual contact" and was sentenced to time served.

The 2023 documentary film Tell Them You Love Me covers the story.

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 could not 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.

References

External links

facilitatedcommunication.org