Back in 2009 I wrote a post called “Wanting to believe in miracles.” It was about the case of Rom Houben, a severely brain-damaged patient in Belgium who was said to be communicating complex thoughts through a method known as facilitated communication, in which a brain-damaged or autistic patient (often a child or teenager, in the case of autism) is helped to “write” through a facilitator guiding his/her hand to spell on a computer or letter board.
Houben’s was a wonderful story, and many people were deeply touched and inspired by it. But I was extremely skeptical, having seen an excellent documentary on Frontline called “Prisoners of Silence” that debunked the vast majority of cases of facilitated communication which, like Houben’s, use another person to guide the subject’s hand. And so I wrote:
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.
Read the whole post if you want a more thorough background about the who, what, and why, of the case, and also a rather extensive debate from commenters as to whether I was being too skeptical or not.
But somehow I missed the announcement, just a few months later, that the chief doctor on Houben’s case—the person who had attested to his remarkable abilities and was convinced they were real—had announced that he’d been mistaken:
Houben’s neurologist, Dr. Steven Laureys, says a scientific test has shown that his patient cannot answer even simple questions…
Since [making his initial reports], he has tested Houben and some other patients more rigorously.
A few days ago, Laureys and his research team presented the results of those tests at a scientific meeting in the United Kingdom.
Laureys says they showed the patients an object, or spoke a word. Unlike earlier interactions with Laureys, the facilitator was out of the room for that part of the test. Afterward, the facilitator was brought back in to help the patient answer questions.
“We presented three cases after traumatic brain injury. Two failed the test. And that was including Rom,” says Laureys.
In the test, the man who was supposed to be writing a novel failed to identify an apple through facilitated communication.
It’s sad. Sad that so many people can be fooled—including scientists, despite the fact that it’s been known for many years that facilitated communication has only a tiny percentage of true successes. As I wrote in my earlier posts, I think the majority of believers are sincere and not con artists, although I suppose that some are knowing dissemblers. Some of the honest believers are parents and educators who want desperately to believe that their children or patients really have a great deal more promise and abilities than they seem to possess, and that some wonderful day the wall between them can be broken down and the parents/workers will have finally have access to their thoughts. Then the fruits of the parents’ and teachers’ hard and loving labors will finally be harvested.
But most of the time it is not to be.
In the case of Houben’s doctors, it is curious that they originally claimed to have performed the proper tests:
Initially, Dr. Laureys said that he had verified that the facilitated communication was genuine, by showing Houben objects when the facilitator was not present in the room, and later asking Houben to recall those objects.
But after a few tests, when Dr. Laureys wanted to perform more rigorously-controlled experiments, the facilitator balked. Interesting, no? And then:
Using a different facilitator, subsequent testing under properly controlled conditions in which fifteen objects which were shown to Houben over a period of weeks was performed, Houben was unable to communicate knowledge of any of the objects which had been shown to him during the facilitator’s absence.
I have little doubt that there are people who still believe in Houben’s amazing abilities, but his doctors and others who work with him are no longer among them.
I’m writing this not just to say “I told you so”, although I do feel that my position has been vindicated. I am writing it because I continue to be astounded at how many people fail to exercise even a moderate degree of skepticism when a story is one they really want to believe.
If you watch the video from Frontline that I linked to above (there is also a transcript of it here), you will see that not only is belief in this sort of thing a sad example of hopeful self-delusion, but it can actually lead to helpers making false accusations of child abuse through their “facilitation” of the thoughts of autistic children.
What brought this all to the fore—and led me to read the update on Houben for the first time—was when a member of my book group suggested we might read The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, by Naoki Higashida (English translation; the text was originally published in Japanese in 2006) for our next meeting. The book was published in late August of 2013 and has received a lot of press since, including a bunch of glowing reviews and a huge endorsement by Jon Stewart of The Daily Show that propelled the book to a number-nine spot on the Times best seller list.
The minute my book group friend mentioned the subject matter of the book, my alarms went off. I asked her whether she knew how the book had been written—had the boy used facilitated communication?
[To be continued in Part II…]