Later On

A blog written for those whose interests more or less match mine.

Who Is Doing the Pointing When Communication Is Facilitated?

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A very interesting article from the McGill Office for Science and Society by Jonathan Jarry. It reminded of of Clever Hans, the horse, except….

ddressing 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—a technique that claims to allow people with disabilities to communicate eloquently by providing a facilitator to hold their hand, arm, and/or shoulder—lies 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’t 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, her findings were disputed 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 “disabled communication partners”. 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’s 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’s 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 poetry books, deliver TEDx talks, and even write a short documentary film.

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’s a tool for empowerment. It’s 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 reviews of the evidence up until 2018 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 a resolution in 1994 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 not even looking at the keyboard while the facilitator is moving their hand.

So what’s the harm? I was recently told on Twitter that the mere fact that it can’t 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 “an abuse of human rights” 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—possibly because of lack of sleep, depression, illness, mood fluctuations—and 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 Betsy seemingly accused both her brother and father of sexually abusing her. 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 one facilitator has been convicted of rape after getting “consent” from her non-communicative partner through FC. There’s also the truly grim tale of a mother who was found guilty of manslaughter 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.

The “I love you, mommy” 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 “facilitated” his self-expression. Isn’t this a shining example of facilitated communication that works?

The difference is . . .

Continue reading. There’s more.

Written by LeisureGuy

28 November 2019 at 6:32 pm

Posted in Daily life, Science

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