Tuesday, November 24, 2009

The Truth About Houben, Locked In for 23 Years.

It is a real-life horror story. Trapped in your body for 23 years, fully conscious yet unable to communicate with those around you. The state is called "locked in" and the prospect of it happening to any one of us is alarming. We all fear the helplessness that such a trauma could bring.

As expected, the recent "awakening" of Rom Houben, a Belgian man thought to be in a persistent vegetative state since a car crash in 1983 and newly discovered as "locked in" is causing "pro-life" groups around the world to rally for suspension of assisted suicide laws.

I think the story is horrifying, yet I find it's emergence right now to be somewhat dubious. And the facts regarding Houben's initial diagnosis, 23 years if "imprisonment," and recent ability to communicate all remain unclear.

According to some reports, the Glasgow Coma Scale was used to make Houben's initial diagnosis. Yet EEG testing, a more conclusive yet still contested method of monitoring brain activity, has been in existence since the early '80s. Houben's "consciousness" was discovered in 2006 during a study at the University of Liege by Dr. Laureys who reported his findings in 2006.

Most stories about Houben tend to focus on the dramatic human element of the story. Houben's mother reportedly believed that her son understood every word she said ("I never gave up hope"), and contacted a specialist 3 years ago to request extensive testing on her son.

Stories about Mr. Houben's case are also focusing on the dilemma advocates for aid in dying and removal from artificial means of life support must face in the light of his "discovery."

Little is reported of the science behind the diagnosis, however. And still less is asked about the method Houben and his caregivers use to facilitate his communication. On a segment on MSNBC by Dr. Nancy Mr. Houlan is shown "communicating" via a computer keyboard, using what is called facilitated communication. As one writer, James Randi, a doctor familiar with facilitated communication, noted yesterday at randi.org:

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. The Clever Hans Effect is notorious in psychology. Early in the last century, a horse named Clever Hans - in German, der Kluge Hans - was claimed to have been able to perform arithmetic and other simple intellectual tasks. In 1907, psychologist Oskar Pfungst showedconclusively that the horse was not actually performing these mental tasks, but was reacting to cues provided by his trainer.

My tests of autistic children at the University of Wisconsin-Madison clearly showed that FC was simply a tragic farce. My findings were totally ignored. The full account of this matter will be discussed in detail in my next book, A Magician in the Laboratory.

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 lookingdirectly 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.

Dr. Snyderman, how did this get by you? The evidence is right there on the screen! Others have solved this fraud. The Association for Behavior Analysis International (ABAI), the American Academy of Child and Adolescent Psychiatry, and the American Association on Mental Retardation, have no doubts about this. ABAI calls FC a "discredited technique" and warns that "its use is unwarranted and unethical." The Association for Science in Autism Treatment reviewed the research and position statements and concluded that the messages typed were controlled by the facilitator, not by the individual with autism, and that FC did not improve language skills.

We critics of FC question why people can apparently give speeches in public - via a keyboard and a "facilitator" - and go to college - similarly "assisted" - yet they cannot answer a series of simple questions under controlled conditions! Psychologist Daniel Wegner, professor of psychology at Harvard University and a fellow of the American Association for the Advancement of Science has stated that facilitated communication is a striking example of the ideomotor effect, and tests of FC show that it is a complete fraud, farce, and delusion!

I don't find Mr. Randi's diagnosis via video any more convincing than Dr. Frist's similar diagnosis of Terri Schiavo via video in 2005. But his point about Houben's manner of communicating raises questions.

As expected, Houben's story is widely being used by "pro-life" groups in the US to condemn the removal of Terri Schiavo from artificial nutrition and hydration (ANH), just at a time when the USCCB has changed their policy regarding removal of ANH, saying that this type of feeding is "obligatory" and will not be removed from patients in Catholic hospitals, regardless of the patient's or family's wishes.

A number of other factors seem to be at work in the story as well, one of which is the contested nature of assisted suicide in Belgium, which established, with regulations, the legality of assisted suicide in 2002. After Switzerland, it was the second country to do so. Groups there are still working vigorously to prevent it.

In response to the increased number of assisted suicide laws throughout the world, the Catholic church and evangelicals have stepped up their efforts to elevate "euthanasia" as a primary cause of concern. We can expect to hear Houben's name in the discourse for some time to come. I'm already seeing over-sentimentalized articles that are amplifying the "cries of the helpless," and "imagine the silent screams of the euthanized!"

This story resonates with us because it plays on our must fundamental fears of vulnerability and physical disability and plays with our innate avoidance of end of life issues. It should not, however, be confused with Death with Dignity, which honors the request of the patient, nor should it be extrapolated as representative of all the persistent vegetative patients in the country.

For more information on Behavior Analysis, see here

Read more stories about Houben here, here, here.

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Blogger James Randi said...

This is James Randi. I am not a doctor of any sort, as stated in this article. I'm a lay observer who investigates claims of paranormal, occult, and supernatural claims, from my particular specialty as a professional conjuror. Please do not attribute titles or positions to me other than these...

Thank you.

October 8, 2012 at 7:53 AM  

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