Coma, Dubious Science, and False Hope
Facilitated communication again misleads the media – and the public
Posted Nov 25, 2009
As George Santayana is supposed to have said, "Those who forget history are doomed to repeat it." Well, he may not exactly have said exactly that (see Thomas, R.K., 2007, Recurring errors in recent history of psychology textbooks. American Journal of Psychology, 120, 477-495), but I like the quotation anyway. As we note in our recent book, "50 Great Myths of Popular Psychology: Shattering Widespread Misconceptions about Human Behavior" (Lilienfeld, Lynn, Ruscio, & Beyerstein, 2010, Wiley-Blackwell), many psychological urban legends are repeated ad nauseum despite researchers' repeated attempts to debunk them -in part because these myths often make for such feel-good news stories. Perhaps nowhere is Santayana's wisdom more apt than in the news media's habit of uncritically reporting psychological and medical "breakthroughs" while blatantly ignoring previous scientific findings.
The most recent example of the media's collective amnesia along these lines comes from a news flash that caught my attention this past Monday (November 23rd). That day, a host of news organizations - CNN, Fox News, MSNBC, and many others - reported that a 46 year old Belgian man, Rom Houben, who has laid in a coma for 23 years following a devastating car accident, had in fact been erroneously diagnosed as being in a vegetative state. For over two decades, his physicians had assumed that Houben was unconscious and entirely incapable of communicating.
Guess what? Well, the news media proclaimed with supreme confidence, they were all wrong. Numerous television stations showed heart-wrenching video footage of Houben, with the help of his caregiver, typing out eloquent sentences on a specialized keyboard attached to his wheelchair. "At some moments it was terribly lonely but I knew my family was believing in me," he typed. ""I simply want to enjoy life. I notice a big difference now I'm back in contact with the world." One would be hard-hearted indeed not to be moved.
Virtually all news organizations reported this story with nary a whiff of skepticism. CNN's Campbell Brown carried an interview with a neurologist who suggested that a misdiagnosis of Houben's condition was entirely possible if not plausible, and Brown expressed astonishment at the wonderful news of Houben's newfound ability to communicate. Sky News, in an online story carried by Fox News' Web Site, wrote that "An engineering student thought to be in a coma for 23 years was actually conscious the whole time, it has emerged."
I should be clear that I do not know whether Houben is conscious. I very much hope he is. I also do not know whether he can genuinely communicate. I very much hope he can.
But there is ample reason for skepticism on both fronts. Indeed, in watching the video of Houben's typing, I was left with an eerie sense of déjà vu. In the early 1990s, the news media were making similar extraordinary claims about the capacity of individuals with autism, some of whom were entirely mute, to communicate on keyboards or letter pads with the aid of assistants. The "breakthrough" technique that the media trumpeted, called facilitated communication, had been imported from Australia and was spreading like wildfire throughout the United States, largely due to the dissemination efforts of Douglas Biklen, an energetic and well-meaning professor of education at Syracuse University. Here was the rationale: According to Biklen and others, experts were completely wrong about autism. Autism, Biklen maintained, was not primarily a mental or neurological disorder at all. It was essentially a motor disorder. Individuals with autism were incapable of communicating not because of severe language and cognitive deficits, as had been widely assumed, but rather of motor deficits, resulting in an inability to articulate words verbally or type words independently on a keyboard. But - and here's the catch - with the aid of a facilitator who offered gentle resistance to their hands, these individuals could now suddenly communicate. And communicate they did - often in profoundly moving sentences that spoke of their love for their parents, of their hopes and dreams, and of their at last feeling liberated at being able to reach out to others while being trapped in an impaired body. In some cases, these individuals also "revealed" nightmarish stories of sexual and physical abuse at their parents' hands.
Yet facilitated communication, which became a craze in the United States for several years, turned out to be a cruel illusion. Numerous carefully controlled studies showed that facilitated communication actually works by means of a "Ouija board effect," better known to psychologists as an ideomotor effect. When facilitators and individuals with autism were flashed different words (for example, if the facilitator saw hamburger and the individual with autism frankfurter), it was invariably the word seen by the facilitator (in this case, hamburger), not by the individual with autism, that was typed out. Without realizing it, facilitators were guiding autistic individuals' hands and fingers to the letters on the keyboard, unconsciously typing out the intended words themselves. Although there a few lone holdouts in the academic community - as there are on almost any issue - the overwhelming scientific consensus is that facilitated communication just doesn't work. It's a result of facilitators' (entirely understandable) wishful beliefs inadvertently creating reality. Remarkably, however, facilitated communication appears to be mounting a valiant comeback in the autism community, no doubt aided and abetted by CNN and other media organizations that have given it a virtual free ride in coverage over the past few years.
Remarkably, none of the media outlets I've seen cover the Houben story appear to recognize the obvious link between the 1990s facilitated communication fiasco and his tragic case. If one watches the video of Houben (see http://www.cnn.com/2009/HEALTH/11/24/coma.man.belgium/index.html?eref=ig...) , it's clear that the "communication" in which he is engaging is actually facilitated communication. His assistant is quite plainly guiding his fingers toward certain keyboard letters, just as tens of thousands of facilitators did during the facilitated communication craze over 15 years ago. Moreover, it's not evident from the video how much of the time Houben is even looking at the keyboard while typing. As of today, only a handful of courageous individuals, such as bioethicist Arthur Caplan, neurologist Steven Novella, and former magician and intrepid paranormal debunker James "The Amazing" Randi, have raised serious questions about the Houben claims, pointing to the obvious use of facilitated communication in the video footage. But aside from that, it has mostly been deafening silence. The media have once again swallowed a feel good story, hook, line, and sinker, without even minimal scientific scrutiny.
None of this proves, of course, that Houben can't communicate. Perhaps he can. But without the proper well controlled scientific tests - which could quite easily be carried out - there's no way to know.
What's wrong with hope, you might ask, especially on the eve of the Thanksgiving holiday? And it's still several weeks away from Christmas, so why I am playing the role of a prematurely arriving Grinch? Hope is indeed a wonderful thing, but only when it's genuine. In the long run, nothing is crueller than false hope, which can unfairly raise expectations - in this case, of the loved ones and friends of people in comas - and then just as abruptly dash them. Let's ourselves hope that the Houben story isn't yet another case of a pernicious psychological myth repeating itself.