Addressing the topic of facilitated communication in a public arena feels like walking into a military academy with a target on your back. It requires disentangling the emotions from the science, because these emotions run high. This is akin to criticizing religion.
At the core of facilitated communication鈥攁 technique that claims to allow people with disabilities to communicate eloquently by providing a facilitator to hold their hand, arm, and/or shoulder鈥攍ies a significant question, one to which scientists have an answer but which believers in the technique routinely dodge: who is doing the pointing?
A brief history of facilitation
The seed for facilitated communication (FC) grew in the 1960s but it didn鈥檛 fully germinate until the 1970s in Australia, when special educator Rosemary Crossley used it on 12 children with physical and mental handicaps. Right from the get-go, by the hospital and the Health Commission of Victoria. Undeterred, Crossley founded the DEAL Communication Centre (now the Anne McDonald Centre) to offer this therapy and, in 1989, educator Douglas Biklen saw Crossley in Australia and transplanted FC into the United States, specifically Syracuse University.
Facilitated communication targets 鈥渄isabled communication partners鈥�. They may have cerebral palsy or a head injury; they may have Down syndrome or some other intellectual disability; or they may be at the severe end of the autism spectrum. For one reason or another, they are often unable to speak, write or type unassisted. A facilitator comes along and holds the communication partner鈥檚 limb to get them to type on a keyboard or to point at a letter board. Through this facilitation, individuals who had been thought of as unable to communicate or even as intellectually disabled are revealed, very quickly after the start of FC, to have rich inner lives. To people who believe in the miracle of FC, the facilitation demonstrates that what was first thought of as a mental disability is in fact purely a motor problem. It鈥檚 the equivalent of using a cane to compensate for a wobbly ankle. People whose communication has seemingly been facilitated in this way have gone on to write, deliver, and even write.
I visited the websites of some autistic people who believe that FC genuinely works. There are even self-advocacy autism associations that endorse FC. To its advocates, FC seems more than just a therapy; it鈥檚 a tool for empowerment. It鈥檚 about giving a voice to the voiceless, hearing their stories, emancipating them from their bodies to turn them into outspoken decision makers.
If this all sounds too good to be true, then we have to ask ourselves a very important question: how would we test for this? What kind of test could we devise that would assure us that the person doing the typing is indeed the partner with the disability and not the facilitator?
The scientific debate ended two decades ago
The answer to the question is to separate the facilitator from the communication partner. Imagine asking the facilitator to leave the room, showing an object to their partner then hiding it, and bringing the facilitator back in the room. Can the two of them type out the name of the object? The answer is no. Several trials were conducted in this way (also by using pairs of headphones that played back different words to the facilitator), and these studies revealed that it was the facilitator who was doing the pointing. Systematic have summarized the state of our scientific knowledge: there is no evidence that FC is a valid form of communication for people with severe communication disabilities. The American Psychological Association even issued to this effect.
Even without the knowledge of these scientific trials, we can watch videos of FC and often see for ourselves that the people being assisted are frequently while the facilitator is moving their hand.
So what鈥檚 the harm? I was recently told on Twitter that the mere fact that it can鈥檛 be replicated under laboratory conditions is no reason to dismiss it. As long as it makes people happy, I was told, let them indulge.
It first bears mentioning that putting words into the mouth of an individual with a severe communication impairment is, at the very least, highly problematic and has been called by some. If we value the self-expression of these individuals, we cannot endorse trickery. But the harmful aspect of FC is not limited to this mirage of communication.
It turns out that several people have been accused of sexual abuse through FC. A child with a communication disability starts behaving aggressively with their facilitator鈥攑ossibly because of lack of sleep, depression, illness, mood fluctuations鈥攁nd the facilitator, who has been told to expect physical and sexual abuse with some of their clients, gets the child to type out that they were abused. The child is taken away from their parents, an investigation takes place, but the parents are eventually found to be innocent.
This famously happened to Janyce Boynton, who was a facilitator in Maine in 1992 dealing with a 16-year-old nonspeaking autistic girl, Betsy. It was through FC that. But a speech pathologist tested Betsy and Boynton, showing them different pictures. And it was the names of the pictures shown to Boynton, the facilitator, and not Betsy that Betsy would type out.
Janyce Boynton has since renounced FC and has become a vocal critic of this discredited technique. But a number of relatives of children with a disability have been accused in this way of molestation, and at least after getting 鈥渃onsent鈥� from her non-communicative partner through FC. There鈥檚 also the truly grim tale of a mother who was found for the death of her eight-year-old autistic son, justifying it by claiming he had told her, through FC, that he wanted to die.
For those who want to delve deeper into 鈥淗ow can facilitators deceive themselves鈥�, click here
The level of self-deception at play with facilitated communication (FC) may appear to defy explanation, but there are a few reasons why a facilitator could genuinely not realize that they are the ones feeding words into their partner.
One explanation for the deception lies in the brain鈥檚 ability to translate suggestions and expectations into involuntary movements. This is known as the The heart-shaped planchette of a Ouija board, used to talk to supposed spirits, moves through this very effect: muscle movements at the fingertips cause the planchette to spell out words while its owner does not even realize it. Similarly, this ideomotor effect could play a role in making the facilitator think they are not guiding the movements of their communication partner.
Combined with the ideomotor effect鈥攚hich hides true authorship even in the mind of the author鈥攁re a number of psychological factors and tactics that facilitate the deception. The saviour effect, for example, can be a powerful motivating factor. The idea that only you can save this person from their disabled body can make common sense disappear. One mentions the disembodied 鈥渨e-feeling鈥� people get from working in a group, where the origin of actions gets lost in the team, another way in which the brain can get fuzzy on who鈥檚 doing the pointing. Ex-facilitator that if the child apparently spells out 鈥渟andwich鈥� through FC but chooses to eat pizza, it鈥檚 not seen as a weird discrepancy but rather as 鈥渉er burgeoning decision-making skills and her right to change her mind.鈥� Any strange contradiction can be soothed away by talking to other FC advocates who will reassure you that these things do happen.
This constellation of facilitating elements end up supporting a 鈥渇antasy version鈥� of the disabled communication partner, like a character in a book whose personality, tastes, and desires are in fact decided by the writer. And when skeptical scientists come in to test whether FC truly works and the facilitator is revealed as the unwitting puppet master, some facilitators will attribute this to the bad vibes in the room. 鈥淭hey sense your doubts,鈥� one facilitator about the assistees who suddenly can鈥檛 perform in the presence of skeptics. 鈥淲hen sensing this, they could totally refuse to communicate.鈥� If this sounds familiar, it鈥檚 because it鈥檚 the same gambit made by psychics who quickly loose all extrasensory powers in the presence of scientists and magicians.
At the , there are facilitators who believe their partners have psychic abilities, are divinely inspired or even that they are the reincarnation of Biblical figures. And that鈥檚 where we see that, for some, FC is most definitely a belief system.
Janyce Boynton summarized what happens in the mind quite succinctly in her piece : 鈥淭hink the words. Type the words. See the words. Believe the worlds. And things spiral out of control.鈥�
听
The 鈥淚 love you, mommy鈥� delusion
I have seen the following argument being made: Stephen Hawking had a communication disorder but no one questioned the words coming out of his machine, which 鈥渇acilitated鈥� his self-expression. Isn鈥檛 this a shining example of facilitated communication that works?
The difference is that Hawking鈥檚 communication impairment came as a result of a neurodegenerative disease. He could speak and write before its onset, and a machine was subsequently built to recognize the cheek twitches he still had control over. This is very different from FC, where a human being with a mind of their own is moving the limb of someone who quite often has never spoken or written. (Ironically, one of the people who created Hawking鈥檚 communication system, Howard Shane, is also an outspoken critic of FC.)
In, authors Jacobson, Mulick and Schwartz list a number of hallmarks of pseudoscience which FC exhibits. Powerful testimonials鈥攐ften aided by a media machine hungry for medical miracles鈥攁re the leading form of evidence. Would-be facilitators who fail are blamed for their ineptitude or lack of belief. When scientific research is quoted, it is carefully curated to put FC鈥檚 best foot forward, ignoring many rigorous studies. And as, proponents change the type of research they conduct when good studies don鈥檛 show what they want by doing less discriminating studies: looking at writing styles and analyzing eye movement, for example.
A hundred years ago, a horse known as Clever Hans impressed the public by being able to count, keep track of the calendar and spell out words, all by tapping its hoof. A scientific investigation revealed, however, that the horse was merely responding to the unconscious bodily movements of its trainer, who would lean forward when a question was asked and straighten up when the horse had reached the correct number of taps.
We can be amused by Clever Hans, because Hans was a horse, but facilitated communication is no laughing matter. It can awaken deep emotions in parents who are quickly afforded There is tremendous power in the sight of a child who has never been vocal or able to write and who suddenly types out 鈥淚 love you, Mommy鈥�, enough power to refuse proof of authenticity.
Facilitated communication seduces many people with the mirage of making dreams come true. Unfortunately, it only ventriloquizes people. And these people deserve better.
Take-home message:
-听Facilitated communication is supposed to help people who can鈥檛 speak, write or type on their own.
- Scientific research has shown again and again that it is the facilitator and not the person whose communication is being facilitated that is doing the actual typing and pointing.
- Facilitated communication puts words into the mouths of people and has even led to multiple accusations of sexual abuse that turned out to be false
Want to comment on this article?
