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:
89 replies on “The University of Northern Iowa promotes facilitated communication quackery”
Thank you so much David for this article. Janyce is a major blessing to us all.
One of the most powerful arguments against facilitated communication is that it actually robs the disabled person of their voice. What we hear is the facilitator’s “voice” not the subjects. This is something Boynton articulates powefully when she talks about Betsy (unsuccessfully) trying to communicate with her on that fateful day.
That is indeed a powerful argument against FC quackery.
Two cases in The Netherlands:
Thiandi Grooff, who has graduated with FC. She had braindamage and was severely handicaped. Her IQ was supposed to be around 30.
Niek Zervaas, who said he wanted to stop taking his medicines, through FC and died.
Is there any basis to expect the people for whom FC is used are able to spell?.
A good first question, Doug.
Why should autistics and other persons who have never even been taught the alphabet suddenly be expected to be able to type answers to questions? And they can’t tell me they teach it as part of FC training. That’s BS.
No judgment here (because you raise a good point and the terminology is a new concept) but saying “autistics” is a little like saying “the Blacks.” Instead, referring to them as “people with autism…” is an easy way to show people in the special education field that you’re speaking the same language.
No judgment here (because you raise a good point and the terminology is fairly new), but saying “autistics” is a little like saying “the Blacks.” Instead, referring to them as “people with autism” is an easy way to show people in special education that you’re speaking the same language.
Actually, Tristan, most of us on the spectrum prefer to be called “autistic”, not “person with autism”. That’s because being autistic influences how we perceive, interpret, and interact, with the World around us. If I wasn’t autistic, I wouldn’t be me.
Before you presume to speak for a group, first listen to people of that group.
@Tristan
While I certainly wouldn’t presume to speak for all autistic people my personal preference matches Julian’s. I wouldn’t go into a huff about it or anything but for me personally reaching the understanding that my autism is an integral part of who I am rather than some sort of separate disorder was significant and helpful. It’s a key part of what makes me, well, me.
@JulianFrost and @motosubatso
You’re actually talking about something else than my original point…you prefer to be called “autistic,” which makes sense because it is an adjective describing who you are. What I was correcting @Panacea for was when he said “why should autistics…” which uses the term as a noun and groups them all together. I’m guessing you wouldn’t call yourself “an autistic” because that would imply that all people with autism are the same (which you know is not the case).
Saying “I’m autistic” is different than saying “I’m AN austistic.” Saying “I’m black” is different than saying “I’m A black.”
You guessed wrong.
I disagree that it would imply that.
One last thing: if you’re thinking of responding to this, don’t. When you find yourself in a hole, it’s best to stop digging.
Yes you read stories of people with severe intellectual disabilities, who have never had schooling but who are, while using FC, literate and quite articulate. It would be interesting to know if they make the same spelling mistakes as their facilitator. It reminds me of that other great “con” from the 80’s – recovered memories, I hope that one doesn’t come back as well.
There already seems to be a ‘fad’ growing at the moment that Medically Unexplained Symptoms are due to repressed mental trauma. Or maybe I’m just becoming more aware of it.
Alas, “recovered memory” therapy has really never gone away. It has been used in Attachment (Holding) Therapy for the last four decades. There are numerous other “therapies” that try to retrieve repressed memories, stored “at the cellular level,” of incidents of early trauma.
The modern FC equipment is a tablet computer with a word predictor similar to what you have on your smart phone. Even without a facilitator a disabled person might learn to generate complete grammatical sentences by appropriate use of the word completion keys. They could possibly even be meaningful, depending on how aggressive the prediction algorithms are. E.g, a tablet might contain a library of 10,000 meaningful sentences and only generate something from the library. Indeed, there are programs for the severely physically disabled that just parse down a customized tree of possible statements based on one or more key inputs. I don’t think they could have much meaningful context, but I’ve seen some (presumably) edited texts which were vague enough for me to believe that this is how they were generated.
So far as I can tell the people selling these things don’t discuss what the algorithms are, so maybe I am being extra-cynical about it.
If they’re using predictive algorithms such as now available by default in most smartphones and tablets, then they could write apparently sensible statements entirely by chance. You could get comprehensible (if rather erratic) tweets out of one of those ether birds with a tablet stylus taped to its snout and aimed at a text input field on a smartphone.
Through facilitated communication (FC), my severely autistic son learned how to tear paper into small pieces.
This FC acquired skill allows him to effectively sit at a workstation and tear paper items (~10 cents/hour pay).
In my opinion, he enjoys this job task because this is one of his self-motivated activities during “family time”.
@Orac,
I’m going to make several paper copies of this post and watch my son rip it to shreds.
@MJD:
A wise man speaks because he has something to say. A fool speaks to say something.
Dear Julian,
Recently, Orac terminated a comment which I felt added clarity to a post.
@Orac,
Comments in auto-moderation that fail to move forward should at least be recognized.
Much effort goes into commenting after reading your well-written posts.
Q. Could you a least communicate to the reader that a comment has been terminated.
For example:
Comment terminated from MJD on June 19, 2016 at 9:08 AM.
@ Orac’s minions,
If it seems like I’ve been away you can blame Orac.
Oh, damn it, Orac, I really thought The Bear of Very Little Brain had gone away, and now we know you were only hiding him from us. He should be grateful that you spared him from embarrassing himself once again.
I worked in residential care for adults with disabilities back in the late eighties and early nineties. Mostly, I worked with people who been diagnosed as mentally retarded at birth and who had bee institutionalized for most of their lives. I had a lot of fun helping them explore the world once they moved into residences in the community. However, for a while, I worked in a group home (six residents) who were mostly young men with autism. FC was making inroads. And I understand why some very dedicated people were excited about it. We were doing that job because we genuinely cared about these people. And it was incredibly frustrating not to be able to communicate. I remember being very excited about the prospect of being able to, finally, break through some of those walls. I was never a facilitator but people I knew and trusted were.
I am a speech-language pathology student at UNI, and just know that not every use of the term “facilitated communication” is understood as a facilitator speaking for a person. In my major, we use the term occasionally to refer to setting up an environment in which someone can use an AAC device. For instance, getting the person situated so they will not slump in a chair, making sure the device is working properly, giving prompts to the individual like “use your board to show me” and so on. A way to “facilitate communication” by providing the means to communicate…not the google definition, we just combined two words that arent “make talk.” In class, we have been told by professors to be weary of facilitated communication in the context above, so do not buy into the notion that our faculty and staff are gullible. Many within the department have worked at facilities such as John Hopkins and Mayo, and they operate by EBP. In my opinion, if the University finds value in showing multiple perspectives on this issue, then they may just be acknowledging that there is more than one side to any coin. Consider that the efficacy of facilitated communication may be debated in the same manner as Eastern medicinal practices; sometimes science does not back the things that people choose to believe. Audiologists would never recommend ear candling, yet some people swear by it from personal experiences. As a professional, one wouldn’t practice FC because of the lack of evidence-based results (ASHA guides speech pathologist to only practice according to EBP). But despite my disapproval of the facilitated communication above, I respect the rights of those who want to listen and learn before deciding for themselves. Do not discredit Northern Iowa for providing access to multiple perspectives, thanks.
There is not “more than one side” to this coin. FC as taught in the conference hosted by UNI was thoroughly refuted scientifically almost 25 years ago and had been refuted multiple times since then. It is pseudoscience. There is no “other”side. By tolerating it (whether they accept FC or not) UNI faculty are contributing to the perpetuation of a practice that harms those with severe impairments in communication.
You might want to consider that UNI is engaging in “education malpractice” by promoting a practice that has been thoroughly discredited, has the potential of significant harm to the public, and violates an individual’s rights to personhood. This could result in serious repercussions in UNI’s ability to secure funding and donations.
I realize how easy it is to conflate the facilitation of communication with the specific therapy called Facilitated Communication. But the term is real, and you would do well to understand what it means, so that you understand the very serious danger that it poses. FC survives in part because of people, including professionals, conflating it with more benign activities and innocently defending what is actually a rather damaging form of quackery.
Consider this: Attachment Therapy seems like a reasonable thing, and many defended it because if you adopt an older child and they struggle to incorporate into your family, surely you’d seek therapy to help with that attachment, right? Well, the actual practices performed under the label of Attachment Therapy were actually pretty horrific, and many people, including professional psychologists and family therapists, didn’t realize just how bad until there had been a death. (A child suffocated during a “rebirthing” exercise that was taught as part of Attachment Therapy, in which the child is put through a simulated birth by being wrapped tightly in towels, sat upon by the therapist and the adoptive mother, and then verbally abused with the intent this will motivate the child to push their way out. Many professionals had no idea that Attachment Therapy could possibly include anything so abusive and dangerous.)
“Audiologists would never recommend ear candling”
FYI, ear candling is not primarily recommended for hearing problems, which is what an audologist specializes in. It’s recommended for things like the common cold, cancer, allergies, and, like a lot of quackery, eventually pretty much everything else. Perhaps you meant “otolaryngologist”? In any case, while you’re right that most licensed professionals will not recommend candling, as it has no value and can damage a person’s ears, it doesn’t give the right to sell it as harmless or represent it as definitely effective. There is such a thing as false advertising, after all.
“I respect the rights of those who want to listen and learn before deciding for themselves. ”
I respect their rights as well, but this isn’t like deciding whether to try painkillers or acupuncture for your arthritis. The people who make decisions about facilitated communication are the not the patients, and if it’s bunk, supporting these people’s right to try FC is denying another person’s rights in a very deep way. This can destroy lives. And the only thing worse than having difficulty communicating is having someone else communicate wrongly on your behalf while you are powerless to communicate the truth. Imagine, if you will, the horror of being locked in. Now imagine a well-meaning practitioner communicating on your behalf, and saying things you do not want. A person requested euthanasia once via FC — just think about that before dismissing this as harmless. Would you, in that circumstance, be grateful or horrified that charlatans were allowed to present FC as valid?
You’re a speech pathologist. You help people communicate. What could be worse than someone stealing their patient’s voice and substituting their own?
I don’t for one second think that you or your staff are gullible, or at least any more so than the general public. But I do think you are underestimating the danger here. This is not something harmless, like someone wanting to balance a room’s feng shui in hopes it helps reduce a patient’s stress.
“The people who make decisions about facilitated communication are the not the patients,”
Callie, you’ve hit the nail on the head with this. The patient is not the one making the decision about this “therapy.” There is no informed consent, just a big show with the patient as the unwilling star. I say unwilling because you cannot get informed consent from the patient himself, thus the decision to participate is not freely made.
This is unethical to the extreme. It’s not like giving a medical treatment that has data to show efficacy. The data shows the exact opposite, so to continue to have patients participate in this farce is little better than a carnival sideshow from the 19th century.
“You’re a speech pathologist. You help people communicate. What could be worse than someone stealing their patient’s voice and substituting their own?”
Again, Callie hits the nail on the head. This is the fundamental problem with so called “facilitated communication.” The evidence clearly shows it is not the patient who is speaking but the facilitator. Unethical; there is no other word for this.
In all due respect, I have never heard of the term facilitated communication construed to mean positioning an individual, setting up the environment or checking the functional operation of an AAC device. Universities have a responsibility to be upholding methodologies that are research based and ethical. Of course, people can choose to believe as they wish, but not using state and federal funding. You miss the point on multiple perspectives. Professionals have ethical responsibilities. Otherwise, we’d simply ask families which menu they wish for treatment: FC, hyperbaric oxygen chambers, charcoal? This lack of respect for research preys upon the most vulnerable in our society, and we should expect no less for them in terms of credentialed personnel and research based methods as we would expect for their non-disabled peers.
“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..”
which is why it is so appealing to some unrealistic parents to want to see a cure right around the corner or believe that there is not really a severe disability. I believe someone at AoA once sung the praises of FC. I should look around the usual suspects’ places to see if anyone is still promoting FC.
@ MJD:
First of all, WHO are you to tell Orac how to run his blog?
Secondly, I wouldn’t blame Orac that you’ve been largely absent of late: I’d thank him.
If the effort you put into commenting is not rewarded, you should learn that perhaps your viewpoint is not as valuable as you imagine. Our benevolent host is instructing you as a professor might by striking through several paragraphs in one of your essays as useless, clueless or not particularly imbued with meaning
HOWEVER that professor is being paid for dealing with you.
Orac is extremely kind: another SB writer might just cut you altogether.
My understanding is that support for the new blog comes out of Orac’s own pocket (after science blogs finally expired). Orac is being quite kind indeed.
There have been a few users of FC methods that have been shown to have genuine communication, but all the examples I’ve seen are people who can also communicate via typed word independently, so they strike me as people who learned typed communication in spite of, not because of, FC. I have a relative who is non-verbal (though not autistic), so I recognize that helping them develop communication can be difficult and require creativity, but even if FC worked for a small percentage of subjects, the usurping of all the rest means the risk outweighs any remote benefit.
I genuinely thought this had disappeared.
Obviously not and Terrie will no doubt provide citations to accompany her anecdote.
I’m not exactly how I’m supposed to provide citations to show that people who communicate independently using typing and have also had a facilitator at some point in their life are examples of coincidence and did not benefit from FC. But if you have ideas, I’m game.
If you’re skeptical that some non-verbal autistic people can type independently, here is a story from ABC about one such young woman:
https://abcnews.go.com/2020/MindMoodNews/story?id=8258204&page=1
It is rare, though, and shouldn’t be confused with FC.
The example I was thinking of was DJ Savarese. His father thinks FC was a factor is his son’s success, and DJ himself has written on his use of a facilitator, but I’ve also read descriptions of the variety of language learning methods his parents used to teach him reading and writing and suspect that any benefits he might have gotten from the use of FC were a coincidence and peripheral. (For instance, Savarese mentions the facilitator helps as a buffer between him and other people).
Given that I’ve heard from even some verbal autistic people that they prefer communicating in writing and find it easier, I think there is a need for methods of exposing autistic keys to text-based communication and I think we’re probably missing some non-verbal kids who would benefit. But that’s a whole different issue.
I also think the FC narrative falls prey to the idea that someone’s worth is improved by their being able to communicate on a specific intellectual level. I mentioned that I have one relative who is non-verbal. He also has some fairly profound intellectual disabilities. Even as an adult, with years of work, his communication uses a mix of a basic PECS system and maybe 20-30 ASL signs. There’s no magical revelation of intellect, and fake stories of such diminish his very real accomplishments and those of the professionals who put in a ton of work to get him where he is.
I remember some TV show (60 minutes?) de-bunking FC and one of the pieces of evidence was one young person who could type independently but always wrote of themselves in the 3rd person. When they started with FC they suddenly wrote in the first person and made terrible accusations of abuse.
If the FC was real, why would this person change the way they wrote about themselves?
Prisoners of Silence was an excellent Frontline episode on FC.
I worked for a company in Olympia years ago that was likely using FC; at the time I didn’t know anything about it, except that I saw a video on it at a big training thingy. This would have been 2007-2008; I wonder if they are still doing it. (I never personally did FC, nor did anybody I knew or worked with there.)
Technological advances make it possible today for almost any non-verbal person who wants to communicate INDEPENDENTLY to do so. Consider Stephen Hawking who was able to communicate independently using a cheek muscle.
(By the way, Hawking was helped in setting up this device by Howard Shane, the speech professor who ran tests that exposed FC as entirely ineffective in the 1990s, shown in the remarkable Frontline program “Prisoners of Silence.” https://www.youtube.com/watch?v=5sO9LyXuOQY)
There was a recent case of real physical harm caused by FC: the Anna Stubblefield case. She worked with a severely disabled young man using FC, “unlocked” him, eventually developed romantic feelings toward him, decided they were in love and had sex with him. She went to jail for rape. This was 2011-2015.
Here’s the NYT article: https://www.nytimes.com/2015/10/25/magazine/the-strange-case-of-anna-stubblefield.html
Oh how could I have missed this?
” even its Wikipedia article…”
Of course, sceptics like you would quote them
I attended this conference’s keynote on day 2. The three “facilitatees” on stage did not receive the egregious hand-over-hand typing as shown on many debunking sites. However, there was constant hand-on-shoulder, for which I imagine the ideomotor effect could still apply. In addition, the facilitators were clearly speaking to the individuals as they typed, although I could not hear many details.
The main point of the session was valid: Presume competence. Difficulty communicating does not mean the person is dumb. The people on stage had clear intelligence and required varying levels of support, which says nothing to the benefit of FC because their progress could very well be DESPITE the practice.
Final point: it is FALSE to say that “there is a lack of evidence.” On the contrary, there is LOTS of evidence…but it consistently shows that FC does not work and takes away valuable time that can be spent with training that actually helps (like communication devices…PECS, etc.).
“The main point of the session was valid: Presume competence. Difficulty communicating does not mean the person is dumb. The people on stage had clear intelligence and required varying levels of support, which says nothing to the benefit of FC because their progress could very well be DESPITE the practice.”
^^^^ This.
It’s one of the things which frustrates me the most in FC : its proponents were in some ways very innovative for their time, and it is now admitted that non intellectually deficient people still need augmentative and alternative communication.
Criticisms might have been dismissed by invoking the strawman that skeptics simply think that autistic people were not intelligent and should not be given alternative tools of communication. While this line of thinking might have existed in some professionals at the time, it does not mean that every critic thought like that, far from it.
There is something deeply gross about the habit of FC advocates and similar of mass well-poisoning. The idea is to create the false impression that skeptics don’t care about the clients involved.
The FC quacks are, as far as I can tell, mostly sincerely interested in helping nonverbal people. This and their dishonest attacks on skeptics, however, indicate insufficient interest in the hard work of rational evaluation of strategies for their work. It’s sad and hard to admit, but FC simply does not work and those doing it are at best wasting everyone’s time.
Sincerity is such an overrated virtue. The idea of FC is not totally implausible, but the evidence is in; it doesn’t work. All the sincerity in the world does nothing to help the nonverbal; it diverts work time away from interventions that might actually help people.
Skepticism: we want to do things that help actually, not things that make us feel good because we sincerely believe they help. I also hope more skeptics will speak out more loudly about the casual verbal abuse they receive. It’s slimy.
Are the facilitators always speakers of the same language as those they assist? I’d like to see if the assisted suddenly learn to speak a new language when introduced to a facilitator that speaks it. Especially if the facilitator does not speak\understand the expected language of the assisted.
Orac writes,
Let’s just put it this way.
MJD says,
Facilitated communication (FC) is in its infancy.
It is estimated that there are ~6,500 spoken languages, will artificial intelligence (AI) create many more languages and allow FC to evolve into a Universal Translator?
@Orac,
Remember what you said about artificial intelligence and medicine:
” AI is very likely to be quite important in years (more likely decades) to come in healthcare. Maybe one day it will lead to a real Tricorder, just like in the original Star Trek series.”
https://www.amazon.com/Patents-Artificial-Intelligence-Michael-Dochniak/dp/1527506649
In parallel, maybe one day AI assisted FC will lead to a real Universal Translator just like in the Star Trek series.
In its infancy? That’s an interesting interpretation for something that was debunked more than two decades ago. And by “interesting”, I mean you are full of shit.
Julian Frost writes,
That’s an interesting interpretation for something that was debunked more than two decades ago.
MJD says,
Here’s an analogy that may provide understanding to the the phrase, “Facilitated communication is in its infancy.”
Analogy:
Historically, intersections with a four-way stop have failed to safely and effectively regulate traffic flow.
A design change (tweak) to said stop created a roundabout for improved safety and traffic flow.
https://en.wikipedia.org/wiki/Roundabout
@ Julian Frost,
Artificial intelligence will be a roundabout way of enhancing facilitated communication.
“…debunked more than two decades ago.” Is that right? I thought it had been longer than that.
Whit these shiny google glasses and the AI we are developing nowadays, it’s a bit of a shame that more research isn’t going in making the effort of inserting visual cues on such glasses for autistic people. The money is not necessarily going in the right direction…
There is! I just saw it on Nova Wonders (on PBS) on the episode about AI called “Can we Build a Brain”. It’s a very simple system that uses emojis projected on glasses to help people identify what emotion the person in front of them is showing. I think it’s mostly used as an educational tool, so you wouldn’t wear it all the time, but maybe a later version you could.
(You can watch the whole episode on the PBS app for free, at least right now. I’d put in a link but it’s tied to your local PBS station.)
Here’s an example of facilitated communication (FC) using a guitar.
Notice that the musician’s touch encouraged the autistic girl to participate.
Let’s encourage not discourage FC.
“Facilitated Communication” has a clear definition, and what that musician was doing was NOT Facilitated Communication. He placed her hand on the guitar so she could touch and strum it. He did not hold her hand to strum the guitar, but let her strum it on her own.
Once again, you comment on something you know precious little about, and I agree with Denice. You should be placed back in moderation.
I’ve never believed in “Let it be written, let it be so.”
@ Julian Frost,
Facilitated “keyboard” communication
Facilitated “artificial intelligence” communication
Facilitated “respectful insolence” communication
Is the value in the details?
Words and phrases have meanings. Your choosing to “expand” the meaning of “Facilitated Communication” does not make it so.
Julian Frost writes,
He did not hold her hand to strum the guitar, but let her strum it on her own.
MJD says,
Yes, in the world of facilitated communication it’s called fading.
Fading is a process wherein the facilitator initiates the communication process and then gradually encourages the individual to explore/learn independently thereafter.
The gifted musician had an excellent fading technique.
To my dearest fellow and sister minions:
I would like to initiate a totally unscientific poll** in order to evaluate whether my own guesses reflect what most minions feel about MJD or not:
-for a while we were not blessed with comments from him
-THEN we were treated to a few.
SO what do you think?
Of course, I do NOT wish to influence Orac by this exercise in any way BECAUSE IT’S HIS BLOG ( and his law) and thank the non-existent lord for that
BUT I think that the minions’ comments might prove instructive to MJD himself who doesn’t seem to be much affected by censorship or lack thereof.
So in the interest of instructing social skills or social cognition or cluefulness.
What do you think?
** mostly for the comedic value of responses from our resident wags and critics- including ORD obviously
Orac encourages tough love, so bring it on my friends.
My take? It can be fun to poke Jello with a stick, but you don’t learn anything and any enjoyment is short lived.
I found it interesting that he cited himself above. That got an eyebrow raise from me.
It is respectful, and informative, to reference the book so inquisitive minds can verify that Orac’s quotation is present therein.
@foolish physicist,
Sometimes your damned if you do and damned if you don’t – sending you a wink.
Not to put too fine a point on it, but the use of that quotation was very self-serving. If you were shooting for informative, you should have just cited Orac directly rather than citing an account of you claiming he said it. Do you understand how bizarre that looked?
I enjoyed the music from the video, nice exchange with the child and the musician. I found it interesting to see a bit into the mind of Dochniak so I can see how they expand the meaning of words so that they can make things fit. Fascinating.
MJD, AKA The Bear of Very Little Brain, let me address you directly.
ORD says:
MJD, I am on the autism spectrum, and I know what happens when someone makes an ass of her/himself. Fortunately, as I grew up and grew more sophisticated in the ways of social interactions, I learned from my mistakes, and I learned that it was less important to save face than to admit that I am wrong when I am wrong, and this has taught me how to be wrong less often.
It is a life lesson I wish I had learned decades earlier than I have.
Just a word to consider, old son.
I’ve gotten quite good at ignoring him. The fact that he posts in a consistent and very odd manner makes it that much easier. I do occasionally wonder why he does keep posting. He’s sort of the really upleasant version of the younger sibling who follows you everywhere and wants to hang out with you and your friends even though he still picks his nose and oogles your female friends.
Dude is, at best, a jack-off. He does not even represent any particular thread of mass woo-belief, nor does he write with any particular competence or charm, Orac can do what he wants obviously; I’d consul booting the mofo for good.
Julian Frost writes,
Words and phrases have meanings.
MJD says,
The word “facilitated” in Facilitated Communication (FC) is a verb.
It’s ignorant to apply respectful insolence to a verb.
Alternatively, it’s logical to apply respectful insolence to a noun (i.e., facilitator).
Example: Facilitator-Biased Communication (FBC)
Q. What’s the difference between FC and FBC.
A. FBC deserves respectful insolence.
It’s an adjective, not a verb.
foolish physicist writes,
Not to put too fine a point on it, but the use of that quotation was very self-serving.
MJD says,
In continuation, the use of the nym “foolish physicist” may be considered self-serving in that your words are often substantially free of foolishness.
What is more deceptive?
A. The physicist who is foolish.
B. The physicist who wants others to believe he/she is foolish.
Answer: B
It’s pretty easy to skip over posts from the few here who rarely (or in MJD’s case, never) have anything useful to impart.
[…] The University of Northern Iowa promotes facilitated communication quackery June 19, 2018 […]
Thank you for your considered responses, minions!
I notice that no one is really sticking up for MJD or advocating for his release from bondage.. I mean, automoderation
OBVIOUSLY Orac knows what is best to do. He always does.
I’ve sometimes imagined that our magnanimous host had an ulterior motive in allowing comments by MJD – besides showing his lack of heartlessness- which might be to guide readers in what NOT to do or to illustrate how unfounded woo proliferates within its host killing off critical thought at a rapid pace. Or perhaps that MJD might take a hint from others’ reactions and CHANGE. Or something else which I cannot fathom as yet.
At any rate, carry on.
It’s his blog. Orac can do as he likes with it. I barely read MJD’s comments any more, unless he says something unusually and spectacularly stupid.
Then I have fun 🙂
Denice Walter writes,
Or something else which I cannot fathom as yet.
MJD says,
It time to show your quality, Denice.
Convince Orac to invite MJD to write a post for Respectful Insolence.
Topic: SBM flirts with alternative medicine – A dirty little secret.
https://www.respectfulinsolence.com/guest-posts/
@ MJD:
Srsly.
I always show my quality thus I would NEVER try to convince Orac ( or anyone else) to let you write a post.
Please notice that not one of the minions who responded to my query had anything encouraging to say to you or about you: * au contraire*, they seemed mostly dismissive or downright insulting.
Dave offered you meaningful advice. Take it.
I’m glad you used the Ouija board analogy, that was the first thing I thought of when I read up on Facilitated Communication, of which thing I had never before heard.
My former boss is Swiss German, but he learned read and write High German. He told to me, that he does not understand written Swiss German, but must spoke the words out to himself first.
Before typing you must learn to write, and before learning to write you must learn to speak. Hearing impaired persons do not type, they use sign language.
@Aarno Syvänen,
Perhaps I’ve lost track of the conversation, or misunderstood what you meant, but hearing impaired persons can certainly type. I have one cousin profoundly deaf from birth and another who is extremely hard of hearing, and they are both completely literate. My husband had an aunt and uncle who were both deaf, and they communicated with people who could not sign, bu writing notes. I could go on, but I’m going to assume I just misunderstood you and probably need another cup of coffee.
I meant that hearing impaired prefer sign language. This is because written language is same as spoken, of course, instead saying a you write a.
Aarno Syvänen, Thank you for answering.
I think it’s a mischaracterization to say that all hearing impaired persons prefer sign language.
I’ve known many hearing impaired persons. Some grew up learning sign as their method of learning to speak, and learned to read and write the same way everyone else does. Others lose hearing after learning to speak, and learn to read and write the same way everyone else does. Remember, inability to hear does not necessarily mean there is anything wrong with the vocal cords. Speech therapists are adept at assisting the deaf to learn to control their vocalizations so they can learn to speak. And of course, some will get cochlear implants that restore all or part of their ability to hear.
I’ve had several nursing students who were profoundly hearing impaired, and did not sign. Two had cochlear implants they could plug a specialized stethoscope into for assessing lung, heart, and bowel sounds.
As with anything in life, YMMV.
People’s medicine really works! For example, it helps me to lose weight bath. Visiting the procedures, I pursue the main goal – to remove fluid from the body through the skin and the respiratory tract. It is important to remember that along with this the body leaves not only harmful, but also useful substances, that is why it is necessary to immediately fill the lack of the latter. In order to achieve a higher effect, in my opinion, it is necessary to visit the “dry” bath, in which there is no superfluous steam. The most suitable temperature for the gradual heating of the human body is about 80-100 ° C, while the humidity of the air should be about 40%.
Ramzes, is this an example of facilitated communication? So who is holding your hand while you type such inane off topic nonsense?
I’ve worked in disability support for decades and seen a lot of AAC (augmentative/alternative communication) methods used independently by a lot of non-verbal clients. I’ve set up a few AAC aids in my time, too- from flashcards to pictureboards to ipads- for non-verbal clients with moderate to severe intellectual disabilities who couldn’t use an alphabetical keyboard, both children and adults. I’ve never seen FC used or met a support worker who advocates its use, perhaps because I’m Australian and the FC quackery started here. I’m horrified the University of Melbourne University took part in the FC conference.
Watching those videos, one question jumped out at me- why FC when both boys clearly had the motor skills to use the touch screen board independently?
In the first video, we see the boy take the cap on and off a bottle of water, we see him open and close a zip, we see him open a muesli bar wrapper- so why FC?
In the second video, we briefly see the boy explore the touch screen independently at the end when the “facilitator” is talking to the mother, so again, why FC?
Those videos have left a bad taste in my mouth. They’ve made this old support worker cranky, and here’s my answer to my own question. Setting up an AAC aid is hard work and a humbling experience. You’ve worked with the individual you support to produce a set of cards or a pictureboard or an ipad and you pat yourself on the back because you know the individual’s needs and wants so well you have produced a pretty useful communication aid, only to discover it’s riddled with errors and omissions because you didn’t know the individual’s needs and wants half as well as you thought you did. You discover the AAC aid is and always will be a work in progress. You realise it’s hit and miss. You notice symbols/picturegrams/photos you believed indispensable to the individual are never used or worse- he can’t use the aid at all because the symbols/picturegrams don’t connect to real life for him, so you scrap that aid and start again.
FC, on the other hand, removes all that work, doesn’t it? It’s instantaneous. No need to work with the individual to produce a tool set he can use to communicate freely and independently, because it’s assumed he is utterly incapable of communicating alone and someone will always be the tool. And you produce smiles! You make parents happy! You can “facilitate” a child with autism telling his mother he loves her! What a buzz!
And best of all, once the parent learns how to “facilitate”, the “conversations” will always be at their convenience, when they have time to sit down for a chat. They’ll never be confronted by…say…their non-verbal little boy or girl who’s mad for loud toys with flashing lights hitting the “battery” button on the ipad over and over and over again because the toy stopped working and this is the 20th toy this morning, or their angry non-verbal adult son or daughter using the ipad to tell them to ” f*ck off” – the son or daughter will just have to wait until the parent has time to sit down and facilitate the outburst.
” … their angry non-verbal adult son or daughter using the ipad to tell them to ” f*ck off” …”
Hysterical! This actually happens to me all the time; I’m routinely told to “F*ck Off”, in text, by my 14 year old Autistic son.
He’s also adept in saying “Fck Off” in “sign language” & the last time anyone coached him to “Use your words …”? He screamed “I’m so fcking PISSED!” … at the top of his lungs on the crowded front lawn of his elementary school. (well; they asked …)
I think this FC thing is a crock. I agree that it is quackery. It’s also a waste of valuable & rare resources.
I also understand that in this particular case & with this particular institution; those resources were privately funded by a mother of a non-verbal son. Those resources are her’s to do with as she pleases & although I think she is being exploited; this brings her some comfort.
I wish I had the financial resources to entertain MY thoughts … Anyway.
Disclaimer: I am an ASD mom of an Aspie 23 year old son & a profoundly ASD 14 year old son. They are the seventh & eleventh children out of my eleven. I don’t much care if that bothers anyone; it’s an asset vs an obstacle for providing perspective & the world will be a better place due to every single one of them.
If you must, blame my amygdala.
I also don’t much care about nouns, verbs & the use of “Autistic”, “a person with autism”, etc. I’ll say it how I want to & the latter involves more typing. I view autism as a disability. Primarily because it’s dis-abeling. I fail to see why that’s controversial.
I’m tired of vast amounts of money being diverted to pretend to study Autism. FC seems to be another game of “let’s pretend!”
😉
@MJD
Re: “Fading is a process wherein the facilitator initiates the communication process and then gradually encourages the individual to explore/learn independently thereafter.”
Yes indeed, and in an AAC method set up to be used independently and spontaneously by the individual, that’s exactly what happens, but in the facilitated communication Orac is talking about, shown in the videos, there’s no scope for the individual to explore/learn independently. The individual is deemed incapable of using a touch screen without someone else supporting their wrist.