Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice
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facilitated communication (FC) ("supported typing")
FC is amazing because it has surpassed all other junk science fads, affecting families, schools, universities, the law, and even the arts. --Brian J. Gorman
Facilitated Communication (FC) is a technique that allegedly allows communication by those who were previously unable to communicate by speech or signs due to autism, mental retardation, brain damage, or such diseases as cerebral palsy. The technique involves a facilitator who places her hand over that of the patient's hand, arm or wrist, and guides a finger to letters, words, or pictures on a board or keyboard. The patient is allegedly able to communicate through his or her hand to the hand of the facilitator which then is guided to a letter, word, or picture, spelling out words or expressing complete thoughts. Through their facilitators, previously mute patients recite poems, carry on high level intellectual conversations, or simply communicate. Parents are grateful to discover that their child is not hopelessly retarded but is either normal or above normal in intelligence. FC allows their children to demonstrate their intelligence; it provides them with a vehicle heretofore denied them. But is it really their child who is communicating? Controlled tests demonstrate conclusively that the only one doing the communicating is the facilitator.
The American Psychological Association has issued a position paper on FC, stating that "Studies have repeatedly demonstrated that facilitated communication is not a scientifically valid technique for individuals with autism or mental retardation" and describing FC as "a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy."
Facilitated Communication therapy began in Australia with Rosemary Crossley. The center for FC in the United States is Syracuse University, which houses the Facilitated Communication Institute (FCI) in their School of Education. The FC Institute was established in 1992. It conducts research, provides training to teach people to become facilitators, hosts seminars and conferences, publishes a quarterly newsletter and produces and sells materials promoting FC, including a six-part video series for $50 per video ($250 for the series). [new] In what might be called a nod to Orwell and Newspeak, FCI is now called the Institute for Communication and Inclusion and FC is now called "supported typing."* [/new]
While several studies have indicated that facilitated communication does tap into the mind of a person who heretofore had been incommunicado, most studies have shown that facilitated communication only taps into the beliefs and expectations of the facilitator. Many control studies have failed to produce strong evidence that facilitated communication works. Defenders of FC routinely criticize as insignificant or malicious those studies that fail to validate FC. Yet, it is unlikely that there is a massive conspiracy on the part of all those who have done research on this topic and have failed to arrive at findings agreeable to the FCI.
There have been numerous critics of FC, including Gina Green, Ph.D., Director of Research at the New England Center for Autism, Southboro, Massachusetts, and Associate Scientist at the E.K. Shriver Center, Waltham, Massachusetts, and Howard C. Shane, Ph.D., Director of the Communication Enhancement Center, Department of Otolaryngology and Communication Disorders at Children's Hospital, Boston, and Associate Professor of Otolaryngology in the Harvard Medical School. A very damaging, detailed criticism was presented on PBS's "Frontline", October 19, 1993. The program was repeated December 17, 1996, and added that since the first showing, Syracuse University has claimed to have done three studies which verify the reality and effectiveness of FC, while thirty other studies done elsewhere have concluded just the opposite.
The Frontline program showed facilitators allegedly describing what their clients were viewing, when it was clear their clients' heads were tilted so far back they couldn't have been viewing anything but the ceiling. When facilitators could not see an object which their client could see (a solid screen blocked each from seeing what the other was seeing) they routinely typed out the wrong answer. Furthermore, FC clients routinely use a flat board or keyboard, over which the facilitator holds their pointing finger. Even the most expert typist could not routinely hit correct letters without some reference as a starting point. (Try looking away from your keyboard and typing a sentence using just one finger held in the air above the keyboard.) Facilitators routinely look at the keyboard; clients do not. The messages' basic coherence indicates that they most probably are produced by someone who is looking at the keyboard.
Nevertheless, there are many testimonials supporting FC, namely, letters from clients who are grateful to FC for allowing them to show to the world that they are not retarded or stupid. Some of them may be from people who have been genuinely helped by FC. It seems that the FCI treats the retarded, autistic and those with cerebral palsy. I have had several students with cerebral palsy. As students, they have been no better and no worse than most of my other students. They have used assistants who helped translate their communication for me. Usually, the student had a card (with letters or words or pictures) on his or her lap. The student would point to letters or words and sometimes speak; the assistant would translate for me. Anyone familiar with Helen Keller, Stephen Hawking or Christy Brown knows that blindness, deafness, cerebral palsy, multiple sclerosis, amyotrophic lateral sclerosis (ALS), or physical or neurological disorders, do not necessarily affect the intellect. There is no necessary connection between a physical handicap and a mental handicap. We also know that such people often require an assistant to facilitate their communication. But what facilitators do to help the likes of a Hawking or a Brown is a far cry from what those in the facilitated communication business are doing.
It may well be that some of those helped by FC suffer from cerebral palsy and are mentally normal or gifted. Their facilitators help them communicate their thoughts. But the vast majority of FC clients apparently are mentally retarded or autistic. Their facilitators appear to be reporting their own thoughts, not their patient's thoughts. Interestingly, the facilitators are genuinely shocked when they discover that they are not really communicating their patient's thoughts. Their reaction is similar to that of dowsers and others with "special powers" who, when tested under controlled conditions, find they don't have any special powers at all.
If FC worked one would think that it would be easy to test by letting several different facilitators be tested with the same client under a variety of controlled conditions. If different "personalities" emerged, depending on the facilitator, that would indicate that the facilitator is controlling the communication. But, believers in FC claim that it only works when a special bond has been established between facilitator and patient. It is interesting that the parents and other loved ones who have been bonding with the patient for years are unable to be facilitators with their own children. FC needs a kind stranger to work. And when the kind strangers and their patients are put to the test, they generally fail. We are told that is because the conditions made them nervous. These ad hoc excuses sound familiar; they sound like the complaints of parapsychologists.
Despite much criticism and many experiments demonstrating that the messages, poems, brilliant discourses, etc., being transmitted by the facilitators originate in the facilitators themselves, the FC Institute is going strong. With support groups all over the world and a respectable place at a respectable university, there is little chance that FC will soon fade away. Those within the FC movement are convinced FC "works." Skeptics think the evidence is in and FC is a delusion for the most part. It is also a dangerous delusion. Critics have noted a similarity between FC therapy and repressed memory therapy: patients are accusing their parents and others of having sexually abused them. Facilitators are taught that something like 13% of their clients have been sexually abused. This information may unconsciously influence their work. The facilitator cannot imagine that he/she is the source of the horrible charges being expressed. Neither can school administrators or law enforcement authorities who believe FC is a magical way to tap into the thoughts of the autistic or the severely retarded. With repressed memory therapy the evidence emerges when a "repressed memory" is brought to light or when a child is interrogated by therapists trained to treat sexually abused children. There is overwhelming evidence that many repressed memories of sexual abuse, as well as many "memories" of interrogated children originate in the minds and words of therapists who suggest and otherwise plant them in their patients' minds. Similar findings have been made with FC: facilitators report sexual abuse and their messages have been used to falsely charge parents and others with sexual abuse of mentally and physically handicapped persons.
The criticisms of FC as another therapy leading to a witch-hunt, turning decent parents into accused molesters of their handicapped children are not without justification. How is one to defend oneself against an allegation made by someone who can never be interrogated directly? Missy Morton, an expert from the FC Institute suggests the following:
One facilitator can in any given case be mistaken, or can be influencing the person, and as a precaution it is helpful to have the message repeated to a second facilitator. If this is not immediately feasible a decision has to be taken as to whether the situation will allow any decision to wait until a second facilitator can be introduced. If with a second facilitator the message is confirmed in detail then it may be taken as confirmed that an allegation has been made. ("Disclosures of Abuse through Facilitated Communication: Getting and Giving Support," Missy Morton, Facilitated Communication Institute Syracuse University Division of Special Education and Rehabilitation, May 1992.)
If there were evidence that facilitators were usually reporting the thoughts of their clients, there would still be concern for ensuring that the rights of the accused were not abused. But as the evidence is overwhelming that in most cases of FC, the facilitator is reporting his or her own thoughts, the effort to ensure against false accusations should be enormous. Yet, those in the forefront of the movement indicate how trivial they take the problem to be when they focus on problems of ambiguity. Here is Ms. Morton's warning issued to facilitators:
Facilitated communication is never as fast or as fluent as normal speech. Messages tend to be short, even telegraphic, and may omit grammatical bridges. It is not always clear what message the person is trying to get across with the words he or she has spelt out.
The message may be incomplete;
One person spelt out MY FATHER IS F...ING ME - clear enough, you would think, if the facilitator hadn't carried on to get MY FATHER IS F...ING ME AROUND.
The letters or words chosen may not be those that the student really intended.
This way of dealing with ambiguous communication seems hopelessly inadequate. What is needed is some way to prevent facilitators from unjustly accusing parents of heinous acts against their children. It is likely that if most of the facilitators kept reporting sexual abuses, this movement would have gotten nowhere. The grieving, hopeful parents would never put up with such abuse.
Frontline Program on facilitated communication:
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new Boynton, Janice. 2012. Facilitated Communication—what harm it can do: Confessions of a former facilitator. Abstract "This article is a response to the most recent media coverage of sexual abuse allegations against parents obtained through Facilitated Communication (FC). Some parents, caregivers, educators, and researchers continue to use FC, despite overwhelming evidence within the scientific community that messages obtained through FC are facilitator-authored. In 1992, I was the facilitator in the Wheaton case and, through the guise of FC, brought sexual abuse allegations against the family of the autistic child, Betsy, with whom I worked. Authorship of the messages were challenged through scientific testing. The results of the testing concluded beyond doubt that I, not the child, authored the messages. Despite my reticence to give up my belief in FC, I could no longer ignore the scientific studies that replicated my own personal experiences with the purported technique. What follows is an overview of how I became involved with FC, how the sexual abuse allegations surfaced, and what happened when my belief in FC was challenged through scientific testing."
It is a rare thing of beauty to see someone change her mind on the basis of the scientific evidence when that evidence contradicts what she knows in her heart to be true from personal experience. [/new]
Beck, A.R. & Pirovano, C.M. 1996. “Facilitated Communicators’ Performance on a Task of Receptive Language.” Journal of Autism and Developmental Disorders, 26 (5), 497–512.
Eberlin, M., McConnachie, G., Ibel, S., & Volpe, L. 1993. “Facilitated Communication: A Failure to Replicate the Phenomenon.” Journal of Autism and Developmental Disorders, 23 (3), 507–530.
Gorman, Brian J. "Facilitated Communication in America: Eight Years and Counting," in Skeptic, vol. 6 no. 3, 1998.
Mostert, M.P. 2001. “Facilitated Communication Since 1995: A Review of Published Studies.” Journal of Autism and Developmental Disabilities, 31 (3), 287–313.
Regal, R.A., Rooney, J.R., & Wandas, T. 1994. “Facilitated Communication: An Experimental Approach.” Journal of Autism and Developmental Disorders, 24 (3), 345–355.
Simpson, R. L., & Myles, B. S. 1995. “Effectiveness of Facilitated Communication with Children and Youth with Autism.” The Journal of Special Education, 28 (4), 424–439.
AN EXPERIMENTAL ANALYSIS OF FACILITATED COMMUNICATION by Barbara B. Montee, Raymond G. Miltenberger and David Wittrock NORTH DAKOTA STATE UNIVERSITY
Facilitated Communication Persists Despite Scientific Criticism by Steven Novella, Neurologica
new Web chat replay: What is facilitated communication? Detroit Free Press staff writer L.L. Braiser hosted a Web chat with professor James Todd of Eastern Michigan University, who has studied facilitated communication extensively. It was through facilitated communication, in which the subject’s hand is guided on a keyboard, that Julian and Thal Wendrow’s 14-year-old autistic and mute daughter alleged that her father had been sexually abusing her. [See the next news item for rmore on the Wendrow's trial by pseudoscience.] [/new]
Handler beliefs affect scent detection dog outcomes I couldn't decide whether to link this story under Clever Hans or facilitated communication, so I'm placing it in both entries. It seems that sniffer dogs aren't doing the finding, their handlers are. At least that's what a study of 18 dogs and their human handlers found. The study is small and didn't use drugs or explosives. Next step?
Dad's arrest in sex case results in $1.8M settlement Three years ago police in West Bloomfield, Michigan, arrested a man and accused him of raping his autistic daughter. The charges were based on the testimony of a woman practicing facilitated communication. The child can't speak but the faciliator, a school aide, reported that the 14-year-old autistic girl, who can't speak and functions at the level of a 2-year-old, was telling her that her father began raping her when she was 7 and her mother stood by. There was no physical evidence the girl had been assaulted. Recently the township's insurance carrier agreed to pay Julian and Thal Wendrow $1.8 million to settle a wrongful-arrest suit.
Just when you thought medical reporting in the mass media couldn't get any worse, you're proved wrong again. The media are hot on the story of Rom Houben, who allegedly began communicating in sophisticated prose after 23 years in a vegetative state. Most of the stories I've seen on the topic claim Houben is using a computer to communicate. The Sacramento Bee has an AP story from Raf Casert that claims Houben "communicates with one finger and a special touch screen on his wheelchair." Casert describes an interview where Houben is depicted as "punching the message into the screen." The article does not mention that Houben's arm and finger are (literally) being manipulated by a facilitator when he supposedly communicates. (An online article by Casert does name the facilitator—she's called a "speech therapist," however—and describes how she "assists" Houben. I call her activity the clever Linda phenomenon.)
Here is what his facilitator typed and is being passed on to the unsuspecting world as coming from a brain that has been silent for over two decades:
I am called Rom. I am not dead. The nurses came, they patted me, they sometimes took my hand, and I heard them say "no hope." I meditated, I dreamed my life away--it was all I could do. I don't want to blame anyone--it wouldn't do any good. But I owe my life to my family. Everyone else gave up.
I studied what happened around me as if it were a tiny piece of world drama, the bizarre peculiarities of the other patients in the common room, the entry of the doctors into my room, the gossip of the nurses who were not embarrassed to speak about their boyfriends in front of "the extinct one." That made me an expert on relationships.
James Randi correctly spotted the hoax in his latest blog entry and refers those who want to get the truth to view the first few minutes of a video being shown on MSNBC here. It is obvious that this poor fellow is having his finger dragged by his facilitator to letters on a board. (Here's another video where Rom's eyes are closed while the "therapist" moves his hand facilely across the keyboard.)
Steven Laureys, head of the Coma Science Group and neurology department at the University of Liege in Belgium, is the expert who is promoting this hoax as a medical "mistake." He claims that 25% of people in a coma are misdiagnosed* and that 40 percent of the patients diagnosed as being in a vegetative state are in fact minimally conscious.* (Laureys doesn't mention that he's one of the authors of the study.) (Stephen Novell has noted that efforts are "underway to develop better tools for assessing residual conscious function in patients in a PVS [permanent vegetative state] or MCS [minimally conscious state] and to correlate these findings with recovery [for better prediction. For example, functional MRI scanning has been used to look for conscious processing in those in an apparent PVS.]")
Laureys says that PET scans were used to determine that Houben is in a MCS rather than a PVS. (PET scans measure blood flow.) Houben's mother has taken him to the U.S. five times over the years, trying to find a doctor who would give her hope that her son would recover. She finally found Laureys in Belgium. He is making the most of the situation and has the mass media beating a path to his clinic's steps. The hoax has been pounced on by the anti-right-to-die crowd and will probably reopen the disinformation campaign aimed at destroying health care reform in the U.S. The god-of-Abraham-is-good crowd will be crowing about this latest "miracle." I'm sure we'll hear that Obama's "death panels" would have executed this poor fellow. One media vulture is using the disinformation to argue that Terri Shiavo's death was an unjustified homicide. The Associated Press reports that Rom is writing a book "about his experiences."* I'm sure there will be few movies to follow.
As Randi says: I'm outraged. This is a sad story that shouldn't end in exploitainment.
Here are some of the media reports:
Rom Houben, Man In Coma For 23 Years, Was Fully Conscious, Mom Says
Huffington Post -
For 23 torturous years, Rom Houben says he lay trapped in his paralyzed body, aware of what was going on around him but unable to tell anyone or even cry out.CBS News -Belgium's Rom Houben uses his touchscreen to communicate during an interview in Zolder, Belgium, Nov. 24, 2009. Houben was misdiagnosed for 23 years as ...CBS - After 23 years in a coma, a Belgium man had an amazing awakening and says he was conscious while in the coma. Elizabeth Palmer reports.CNN International -London, England (CNN) -- A Belgian car crash victim who was misdiagnosed as being in a vegetative state for 23 years was conscious the ...ABC News - A paralyzed Belgian man who spent the past 23 years incorrectly diagnosed as being in a vegetative state, was fully conscious and could hear ...RTE.ie -A Belgian car crash victim who was paralysed for 23 years but unable to communicate was not in a coma, a new study has revealed. ...Belfast Telegraph - A man presumed to have been in a coma for 23 years has spoken of his “second birth” after doctors realised that he had been fully conscious all along but ...
At least one report included a bit of skepticism:
Arthur Caplan, a bioethics professor at the University of Pennsylvania, said he is skeptical of Houben’s ability to communicate after seeing video of his hand being moved along the keyboard.
“That’s called ’facilitated communication,’” Caplan said. “That is ouija board stuff. It’s been discredited time and time again. When people look at it, it’s usually the person doing the pointing who’s doing the messages, not the person they claim they are helping.”
Caplan also said the statements Houben allegedly made with the computer seem unnatural for someone with such a profound injury and an inability to communicate for decades.
What would Carl Sagan say? Something similar to what these folks wrote:
Another contender for the worst medical reporting ever: "Coma man" by Orac Another thing I'm not sure of, having insufficient information to make an informed speculation, is whether Professor Laureys has let himself be duped or whether he's party to some sort of deception. I'm inclined to give him the benefit of the doubt and conclude the former. After all, as James Randi and others have shown time and time again, scientists are among the easiest to fool.
Man in Coma 23 Years – Is He Really Conscious? by Stephen Novella This is a wonderful story for the media. But to this neurologist, and I would think to any critically-thinking journalist, some questions come to mind. The biggest problem with this case as presented is that the finger-typing of Mr. Houben looks suspiciously like facilitated communication.
The Coma Man Hoax: Rom Houben's "Communication" Is "Ideomotor" Ouija Board Effect by Michael Shermer Dr. Sanjay Gupta missed it on CNN, Dr. Nancy Snyderman missed it on MSNBC. And neuroscientists untrained in skepticism and the history of facilitated communication all missed it.
Reborn Coma Man’s Words May Be Bogus by Brandon Keim According to Randi, facilitated communication could only be considered credible if the facilitator didn’t look at the keyboard or screen while supporting Houben’s hand, and helped him type messages in response to questions she had not heard, thus ensuring that Houben’s responses are entirely his own.