By now you’ve probably all heard the remarkable case of Rom Houben, the young man trapped in a paralyzed body for 23 years, unable to communicate and thought to be in a vegetative state. Recent brain scans indicated much more activity inside his mind than anyone had dreamed, and now he’s communicating complex ideas about what he’d been thinking and feeling all these years.
It’s a wonderful story, and we’d all like to believe it’s true—that Houben has come back to the land of the living and communicating, and can now tell his loving parents that he felt “blessed with my family.”
Trouble is, I don’t think it’s true.
Let me explain. I was touched by the news when I first heard it, and eager for more details. But when I looked at this video, just a few seconds of watching the way Houben communicates gave me the sinking feeling that this was another example of the extremely suspect technique known as facilitated communication.
Facilitated communication was thought to be a big breakthrough in the field of autism. But it turned out, for the most part (with a tiny number of exceptions) to be a product of hope and nothing more.
Here is some information from the Amazing Randi about how it works:
I cannot understand how anyone, professional medical person or layman, can continue to believe that the farce known as “Facilitated Communication” [FC] represents anything other than a fantasy that was begun back in 1977, when an Australian woman named Rosemary Crossley came up with the idea that autistic persons could express their thoughts via a keyboard when their hand was “supported” by what she called a “facilitator.” In 1989, Douglas Biklen, a sociologist and professor of special education at Syracuse University, eagerly took up her cause, and as a result vast sums were donated to SU by friends and family members of autism victims – money that was simply wasted in futile “research.”
I personally investigated this matter. In March of 1992 I was contacted by Dr. Anne M. Donnellan, of the University of Wisconsin-Madison, who asked if I would be willing to participate in an investigation of FC as used with autistic children. I was already familiar with FC, and suggested to her that I felt the researchers were perhaps under the influence of the Clever Hans Effect [CHE], also known as the “ideomotor effect,” in which the trainer – the facilitator in this case – was unconsciously transmitting the information to the autistic child. This possibility was emphatically denied by Dr. Donnellan, and I was assured that every care had been taken to ensure that the CHE was not in operation…
My tests of autistic children at the University of Wisconsin-Madison clearly showed that FC was simply a tragic farce…
The “facilitated communication” process consists of the “facilitator” actually holding the hand of the subject over the keyboard, moving the hand to the key, then drawing the hand back from the keyboard! This very intimate participatory action lends itself very easily to transferring the intended information to the computer screen. In the video you have just viewed, it is very evident that (a) the “facilitator” is looking directly at the keyboard and the screen, and (b) is moving the subject’s hand. The video editing is also biased, giving angles that line up the head of the subject with the screen, as if the subject were watching the screen.
This man in the msnbc.com piece is not seeing the screen. He is not aware of what is going on. He is an unknowing victim of these charlatans. A simple test – such as that done on October 19th, 1993, in a Frontline (PBS) documentary highlighting these concerns, “Prisoners of Silence,” would prove that FC is a total fraud. This powerful and comprehensive program proved that FC was a delusion.
The reason I immediately recognized what was probably happening with Mr. Houben is that I had seen that Frontline documentary when it had first aired. It was so dramatic and memorable, disturbing yet convincing and ultimately tragic, that I never forgot it. I disagree with Randi on one point: I believe that neither the facilitators nor the experimenters were charlatans, exactly, because they did not know the truth until the experiments revealed it—they believed, too, because they wanted so badly to be able to reach these children. The movements of the facilitators are quite subtle and unconscious, the whole thing working somewhat like the old-fashioned Ouija board.
What’s really going on with Rom Houben? Evidence indicates that he does have more ability to communicate and think than originally believed: for example, he can tap his foot yes and no in answer to some simple questions, and his brain scans indicate some sort of activity. So he has probably retained the ability to communicate in a basic way, but the articulate sentences he supposedly generates through the facilitated computer are extremely suspect, and are probably generated by the hopeful mind of the facilitator, whether she knows it or not. This could be tested rather easily, by asking him a question to which he would be expected to know the answer but about which the facilitator would be expected to know nothing.
One of the most interesting things about this case, if my theory turns out to be correct (and here is another observor who shares it), is how eager people are to be fooled, if they really want to believe, and how ignorant the world (both the physicians and the journalists) still is about the perils of facilitated communication.
I had the advantage of having seen the Frontline documentary. But I wouldn’t have thought that to be necessary. One look at the videotape of Houben and his helper should have at least raised questions in the minds of observers.