Rom Houben's Coma Real, Communication Maybe Not
The news media has been abuzz recently over the curious case of a Belgian man named Rom Houben. Houben, badly injured in a 1983 car accident, was diagnosed by doctors as being in a persistent vegetative state until 2006, when a sophisticated brain scan was done. Doctors were shocked to find that his brain was in fact active, and the discovery ignited a debate about the mental functioning of seemingly comatose patients.
The affliction that Houben is suspected of having is called "locked-in syndrome," perhaps best known by its depiction in the 2007 Academy Award-nominated French film "The Diving Bell and the Butterfly," which was written (actually, transcribed from a series of eye movements) by a stroke sufferer named Jean-Dominique Bauby.
As Steven Novella, a neurologist at the Yale University School of Medicine noted on his Neurologica blog, "Typically when patients are locked in there is identifiable damage that can produce widespread paralysis, but the cortex should be relatively spared. In addition, there are typically some residual functions remaining, like eye movements…. More likely is the possibility that Mr. Houben was initially comatose but then over the years his brain function improved until he was able to be conscious. But by that time he was paralyzed and debilitated, and so not able to move to demonstrate his consciousness – locked in. Also by that time he would likely be in a chronic care facility and may not have had close neurological exams."
Houben's ordeal is medically fascinating, but what really captured the public's attention was the man's description of his decades of being completely aware of his surroundings yet unable to communicate or move. He wrote movingly and at length about his treatment and tragic condition, published last week in a German newspaper.
However, questions have been raised about whose words those are. Houben's injuries have left him unable to move his limbs, and therefore he "wrote" the words with the help of an assistant who guided his fingers to a specially-made keyboard. Was she helping him type, or typing for him?
Videos of Houben's "communication" clearly show that he is often not even looking at the keyboard upon which his messages are being spelled out. This is a huge red flag that something is amiss.
This technique, called facilitated communication, has been discredited for years. In the 1980s and 1990s facilitated communication was claimed to help autistic children and others with limited communication abilities. The idea is that the patient's lack of communication is not due to an underlying cognitive disorder, but instead to motor disorders such as those affecting the ability to coordinate speech or move limbs. This technique was developed in the 1970s by an Australian woman, and introduced in the United States by Douglas Biklen, a special education director at Syracuse University. It was first seen by many as a miraculous breakthrough, but doubts soon emerged about its validity.
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As more research was done, it became clear that the messages autistic children were sending (the words, diction, and grammatical structures) much more closely matched those of the assistant than the autistic child. Often the child wasn't even looking at the keyboard or letters, yet continued to type out messages. Furthermore, when the child was asked questions only the child knew (but the facilitator didn't), the child was unresponsive or gave incorrect answers. This disproven technique was used to conduct interviews with Houben and type out his messages.
The case of Rom Houben offers hope that other patients in a persistent vegetative state might also be able to recover some functioning. It seems that while Houben's recovery is real, his description and account of it is likely a fiction.
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Benjamin Radford is managing editor of the Skeptical Inquirer science magazine. His books, films, and other projects can be found on his website. His Bad Science column appears regularly on LiveScience.