The University of Northern Iowa promotes facilitated communication quackery

Now here’s a topic that I haven’t addressed in a very long time. Basically, it’s a form of harmful quackery that has been shown so many times and in so many ways to be harmful quackery that I have a hard time believing that anyone still takes it seriously. I was wrong, apparently, because there is an “academic conference” devoted to it going on as we speak. Yesterday was day one, and today is the final day. The place is the University of Northern Iowa (UNI). The sponsors are UNI, the Waverly-based Inclusion Connection, and Syracuse University’s Institute on Communication and Inclusion, formerly known as the Facilitated Communication Institute. Yes, as unbelievable as it sounds in 2018, it is a conference on facilitated communication, basically the equivalent of using a Ouija board to “communicate” with severely autistic children:

A two-day University of Northern Iowa-based conference promoting, among other things, “facilitated communication” with disabled individuals will go ahead as planned next week, despite calls from researchers and academics around the globe that it be canceled.

The Midwest Summer Institute — in its fifth year — is co-sponsored by UNI, Waverly-based Inclusion Connection and Syracuse University’s Institute on Communication and Inclusion, formerly called the Facilitated Communication Institute.

The program involves breakout sessions Monday and Tuesday on topics aimed at promoting “best practices that lead to inclusion in environments from education to employment and beyond.”

But 30-plus academics and professionals — from Harvard Medical School, Johns Hopkins University, Emory University, the University of Melbourne in Australia, the University of London in England, and three UNI professors — have sent a letter to UNI College of Education Dean Gaetane Jean-Marie asking her to reconsider supporting the event and its promotion of “this invalidated and demonstrably harmful practice.”

Let’s just put it this way. Facilitated communication is so thoroughly debunked that even its Wikipedia entry says so, referring to it as a “discredited technique” in the very first sentence of the entry on it. Of course, I don’t expect my readers to take the word of Wikipedia on this. I merely used this example to show how thoroughly discredited the methodology is. We’ll get into discussions of more of the evidence shortly, but first it’s worth describing what facilitated communication actually is and how it can fool people who should know better into thinking the
“communicator” is actually communicating with the person with the communication impairment, be it autism, a brain injury, or other condition.

I consider it important to note first that facilitated communication is not used only with severely autistic children. Rather it is a technique that, if you believe its proponents, can be used to communicate with any person with a condition that severely limits his or her ability to speak or otherwise communicate. Indeed, the last time I wrote about a case dealing with facilitated communication in 2010, I discussed the case of Rom Houben, an unfortunate Belgian man who, as a result of a severe automobile crash, was left with a closed head injury resulting in a persistent vegetative state, whom some news outlets had referred to as “coma man.” A Belgian neurologist by the name of Dr. Steven Laureys claimed that Houben, who had been in his persistent vegetative state for 23 years at the time, was in fact conscious and had, through the wonders of a process that was very much like facilitated communication, informed Dr. Laureys of the horrors he had experience, leading Laureys to conclude that in reality Houben in fact was a victim of “locked in” syndrome, a horrible neurologic state in which the patient remains fully conscious but has no control over his body other than his eyes and eyelids. The most famous case of being locked-in is Jean-Dominique Bauby, a French journalist who developed locked-in syndrome after suffering a stroke in 1995. Bauby could communicate through blinking his left eye, which was the only part of his body over which he had any control left. Amazingly, he was able to dictate slowly and painfully his experiences by blinking when the correct letter of the alphabet was reached by the person transcribing his memoirs, which were published as The Diving Bell and the Butterfly and later made into a movie. In any event, when proper testing was done, ultimately Dr. Laureys was forced to admit that he was not actually communicating with Houben and had been fooled by a woman using a version of facilitated communication.

But what is facilitated communication? It’s a method that involves a “facilitator,” who supports the arm or hand of a person with a severe communication impairment as the person types out messages using a keyboard or other pointing device to select a combination of letters, numbers, images, or words. The idea is that some children with severe verbal impairment (or who are even nonverbal) have a higher level of cognitive ability than is observable through their verbal skills, but also lack sufficient motor skills to type or write. Facilitated communication advocates thus claim that, with a little support or help, such patients can communicate their thoughts and desires when a “facilitator” assists him in typing or pointing to letters, words, and images. Such facilitators are trained to hold and support their client’s hand, to help stabilize it, so that they can type out their thoughts.

Here is an video of a facilitator guiding the hand of a nonverbal autistic child using this method:

At certain points in the video, it’s incredibly obvious that the facilitator, whether he realizes it or not, is controlling the boy’s hand, particularly given that the boy is not really very cooperative through much of the video and rarely seems very focused on the task of choosing keys. Here’s another example:

This boy is more cooperative and focused than the boy in the first video, but at many points in the video he still doesn’t seem all that interested in the task and often isn’t even looking at the screen. Indeed, around the 7:30 to 7:40 mark, the boy doesn’t even appear to be looking consistently at the screen as the facilitator fairly rapidly types out a word.

It’s not even controversial in the psychology and neurology community that facilitated communication doesn’t work, that the actual author of the words attributed to the child or person with communication impairment due to severe autism, stroke, brain injury, or other neurological condition is in reality the facilitator. Often, the facilitator doesn’t even realize he or she is doing it. Studies and reviews of the evidence going back decades have concluded that the “communication” coming from facilitated communication is the product of the facilitator, not the client. For instance, Steve Novella (a neurologist) has written multiple times of this phenomenon and summarized the evidence. For instance, a review from 2001 concluded that “Facilitated Communication (FC) studies have clearly established that proponents’ claims are largely unsubstantiated and that using FC as an intervention for communicatively impaired or noncommunicative individuals is not recommended.” The author also points out that there is a relationship between the results of studies of facilitated communications and the level of scientific rigor of the studies. Here, we find a familiar tale, the same tale that we hear when we evaluate studies of acupuncture or homeopathy. The most rigorous studies, with the best blinding, tend to be very negative, while unblinded studies are all positive—often dramatically so. Meanwhile, less than perfect studies tend to show mixed or equivocal results.

If you want to get an idea of how bad the evidence cited in support of facilitated communication is, there was a good summary in a news report from a couple of years back from the Syracuse University independent student newspaper:

The 1996 study was conducted by researchers Donald Cardinal, Darlene Hanson and John Wakeham. The study consisted of 43 FC users being shown a randomly selected word from a list of 100 words while their facilitator was kept out of the room. The facilitators were shown the list of 100 possible words before entering the room.

In all, 3,800 trials were conducted across the 43 students, with each being tested 90 times. Of those 3,800 trials, the correct answer was typed 9.6 percent of the time, which FC advocates see as evidence that the practice works. But in the same study, a correctly-spelled wrong word was typed more often — slightly more than 11 percent of the time.

“That tells you the facilitators are guessing,” said Jim Todd, a psychology professor at Eastern Michigan University.

In the 2000 German study, translated to “Facilitated Communication for Persons With Severe Communication Problems,” six out of seven student subjects were able to correctly solve multiple choice tasks through FC, according to the ICI website. But the same person who came up with the test materials also served as the facilitator, Todd said.

“These are not just methodologically unsound,” Todd said of that study and the rest cited by the institute. “These are some of the most incompetent studies in development disabilities.”

Indeed they are, so much so that the American Psychological Association has declared in a position statement, first noting:

Researchers who observed the facilitation process sometimes observed that those who were presumably being facilitated often answered questions when they were not looking at their typewriters or letter boards. Controlled scientific studies also revealed that if one posed a simple question to a child with severe autism, the child could only answer the question when the facilitator knew the answer. For example, if the facilitator could not see a simple object that the child was asked to name, the child could not name it. Highly trained facilitators who had elicited sophisticated answers from their patients in the past could no longer do so when they were prevented from knowing what the patients were being asked.

The short version of this long story is that study after study showed that facilitated communication didn’t really work. Apparently, the positive results that had generated so much enthusiasm were the results of a subtle process in which well-intended facilitators were answering questions themselves – without any awareness that they were doing so. Based on the findings of carefully controlled studies of facilitated communication, the American Psychological Association issued a resolution in 1994 that there was “no scientifically demonstrated support for its efficacy.”

You read that right. The APA first condemned facilitated communication in 1994, 23 years ago. It’s been known that facilitated communication is pseudoscience and quackery since at least then. But how, one might ask, do facilitators deceive themselves into thinking that their movements of their clients’ hands are representative of what the clients’ want to communicate, even as it’s so obvious in many videos that they’re basically just answering the questions themselves? You might remember that I mentioned an Ouija board early in the post. The reason is that the phenomenon is very similar, with both facilitated communication and Ouija boards operating through the ideomotor effect, which are unconscious, involuntary motor movements that are performed by a person because of prior expectations, suggestions or preconceptions. People experiencing the ideomotor effect are not aware that they are responsible for the the movements and therefore ascribe the movement to an external force or power. In the case of facilitated communication, that “external force” is the client’s arm or hand, which the facilitator perceives as guiding him to the “correct” letter, word, or picture. The same effect is responsible for people believing that dowsing rods work.

Let’s look at the agenda of the actual conference now. The tracks are color-coded, with green being the facilitated communication track, much of which was yesterday, with the blurb:

This series features nationally-recognized Master Trainers in the world of Facilitated Communication. Access background information as well as hands-on activities for those who are typing, exploring typing or supporting those individuals. All are welcome to attend & engage.

The “nationally recognized Master Trainers” are Harvey Lavoy III, Tracy Thresher, and Pascal Cheng. All are affiliated with Saved By Typing, which claims that it “gives a voice to the voiceless” through facilitated typing (another name for facilitated communication, which is also sometimes called the rapid prompting method and other names). As is typical of such believers, it doesn’t cite much in the way of evidence, but it does include a page of YouTube videos purporting to demonstrate how facilitated typing works. Most are no more convincing than the ones I embedded above.

So what’s the harm? If you don’t know the history, you might think that facilitated communication is a harmless quirk, but it causes harm on multiple levels. First, it falsely represents what the nonverbal or communication-impaired client wants. Second, it provides the parents and caregivers of such clients a false view of what the client wants. Worse, though, facilitated communication has resulted in false charges of abuse. The most famous of these is the Betsy Wheaton case. Janyce Boynton, the facilitator who worked with the Wheaton family, published an article telling the tale in 2012 about case. Spoiler: An investigation ultimately turned up no evidence other than Boynton’s facilitated communication sessions.

In 1992, Betsy Wheaton was a 16-year-old girl with severe autism who was nonverbal. In her article, Boynton describes how, during her facilitated communication sessions with Betsy, she came to believe that Betsy had been abused:

It is difficult to pinpoint exactly where the idea of sexual abuse originated. Betsy was, in the days leading up to the reporting, exhibiting an increase in violent outbursts—hitting and scratching, mostly. Unfortunately, it was not unusual for us (special educators) to attribute abrupt or unexpected behaviors to possible abuses at home. On occasion, this was true, but in reality, these outbursts in the children we served were caused by many different factors: oncoming illness, lack of sleep, depression, disruptions at home not due to abuse, or just plain grumpy moods that all of us experience from time to time. I do not think anyone really considered the full impact of what we said. I certainly did not. We were careless in our assumptions. It was, I suppose, a way of venting frustration when disruptive, sometimes frightening outbursts occurred. I had no clue how insidious this type of thinking can be, or how much it could influence my behavior, whether I was conscious of it or not.

I had never before been hit by Betsy—or by any student, for that matter. She was quick and powerful. She hit me hard in the face. Looking back, I understand that these punches and, later, scratches were the clearest communications I had ever received from her. I do not know what her thoughts were, exactly, but at the very least, she signaled me—in nonverbal, brutally clear ways—to stop. Stop touching her hand. Stop sitting so close. I do not know. Just stop. Instead of listening to her, I persisted with the facilitation. I still carry a scar on my wrist where she dug in hard. And, before I go any further, I want to apologize, again, for not listening to her.

The physical blows from someone I thought trusted me somehow allowed me to make an erroneous psychological leap: that she was abused. I convinced myself that Betsy was acting out. Shortly afterward, messages started appearing on the page to “confirm” this belief. I was horrified. With these words, I felt that my deepest fears for the child were realized.

It’s very much worth reading the entire article, knowing that Boynton eventually came to reject facilitated communication, both on the evidence and as a result of the Wheaton case. In the article she agonizes about how she could have contributed to the harm she caused to Betsy and her parents by leaping to the conclusion that Betsy had been abused based on so little and reporting it to the guidance counselor, who reported it to the authorities. Particularly telling is the passage where Boyton discusses attending a facilitated communication conference incognito and listening to a discussion of abuse accusations under facilitated communication. “Expert” facilitators recommended using a naive facilitator to confirm any accusations of abuse, but also stated that such accusations were only to be expected, because children, “previously locked in broken bodies, were, for the first time, able to tell their own stories, so, naturally, they were confiding to their communication partners about all aspects of their lives, including abuse and neglect.” She began asking herself if she was one of those “bad facilitators.”

Fortunately, she confided her doubts about facilitated communication not to the leadership promoting the practice, but to Betsy’s guardian ad litem‘s opinions and advice. This guardian had been appointed after the accusations of abuse and urged Boynton to undergo objective testing, which she reluctantly did, noting that she had been taught that “skeptics” were not her friends. Not surprisingly, the testing failed, leading to Boynton’s horrified realization that facilitated communication was bogus. She was devastated:

I felt such devastation, panic, pain, loneliness—a myriad of emotions difficult to put into words. The whole FC thing unraveled for me that day, and I did not have an explanation for any of it. Almost immediately, I started rationalizing away the truth. Though it was not true, I went away from the testing telling myself that the situation had been hostile, the evaluator had been hostile, everyone had turned against me. Incredibly, I even tried facilitating with the child in the week or two after the testing, resulting in more outrageous and false allegations. The parents, understandably, asked that I no longer work with the child. I felt tremendous loss.

Later:

The guardian ad litem gave me some scientific studies to consider—studies I would have dismissed earlier as anti-FC propaganda. But, these studies replicated what I had experienced personally in the test situation. The truth about FC resonated with me. It was—and always had been—a fake.

Boynton has now been leading the effort to get UNI to reconsider hosting its facilitated communication conference. On May 15, she sent a letter signed by a number of academics to the UNI leadership. (Disclosure: I signed the letter, along with a number of other academics. It’s a disclosure I’m happy to make.) Unfortunately, her effort failed—this year. This is, unfortunately, the fifth year that UNI has been hosting this conference. Sadly, ideology wins out over science, and the UNI leadership has not been receptive to criticisms of facilitated communication as quackery and pseudoscience, even as UNI took heat on Twitter over the weekend.

Sadly, quackery like facilitated communication is difficult to eradicate. We’ve known, for instance, that homeopathy is quackery for two hundred years, and it’s still around. Facilitated communication arose in Australia in the 1980s, having been developed by Australian author Rosemary Crossley, but it’s already shown itself to be amazingly tenacious and resistant to evidence, with its promoters and practitioners immune to disconfirming evidence, no matter how harmful the practice is.

This has been going on too long. It’s definitely time to stop exposing people, especially children, to this quackery.

ADDENDUM: Susan Gerbic notes that a major donor to UNI, Jean Trainor, has a son with Joubert syndrome who is nonverbal. She is a major believer in FC: