Back from the dead? Facilitated communication and the strange case of Rom Houben
In February the BBC reported that the Belgian man who appeared to be communicating after a 23-year coma wasn't. Sceptic Nicholas Pearson was on it for us back in November
This article was originally published in November 2009. In February 2010 it was revealed, after a series of tests similar to those conducted by James Randi described below, that Houben was not communicating after all. “We'll simply have to find another way to him," Laureys says.
This week a Belgian man made headlines worldwide. Rom Houben is the man whose brain has come back from the dead. “I will never forget the day they finally discovered what was wrong,” he was quoted as saying. “It was my second birth.”
After a car accident left Houben, an engineering student, paralysed and in a deep coma, he was for a long time thought to be in a persistent vegetative state. But then three years ago Dr Steven Laureys, clinical professor of neurology at the Liège University Hospital and head of the Coma Science Group, found that Houben’s cerebral cortex was still active, despite him having failed the internationally accepted Glasgow Coma Scale to assess his eye, verbal and motor responses.
Dr Laureys and his team used modern scanning technology not available at the time of the accident to study Houben’s brain and concluded that he may be suffering from "locked-in syndrome", in which people are unable to speak or move but are able to think and reason. Since the discovery Houben has “spoken” with the aid of a helper (who we see in news footage holding his hand as he types out his words on a special keyboard) and his poetic, harrowing phrases have been widely reported. “Just imagine. You hear, see, feel and think but no one can see that. You undergo things. You cannot participate in life."
The words raised suspicion among sceptics, however. Arthur Caplan, director of the University of Pennsylvania’s Center for Bioethics, points to the decades spent powerless and in complete isolation, known to be capable of causing severe psychological and cognitive damage. “You’re going to lie for 23 years in a hospital bed with almost no stimuli, and then sound completely coherent and cogent?” he said. “Something is wrong with that picture. It sounds too lucid, like someone prepared these things to say. I’m not saying it’s all a fraud, but I want to hear a lot more.”
The main point of contention is the use of Houben’s “helper”, as this appears to be a case of “Facilitated Communication” (FC), a controversial technique that has previously been used with profoundly autistic children and other communicatively-impaired individuals. In facilitated communication the facilitator supports the arm of an incapacitated person while using a keyboard or similar device to spell out words and sentences. In cases involving autistic children this was found to be due to the ideomotor effect – the facilitators were typing, unaware of their own unconscious movement. The same phenomenon has been investigated and found to be responsible for dowsing and Ouija boards.
In the United States five major national professional bodies have now adopted a formal position of opposing the acceptance of FC as a valid mode of enhancing expression for people with disabilities. The Association for Behaviour Analysis even describes FC as a "discredited technique" and warns that "its use is unwarranted and unethical."
In the early ‘90s James Randi, the legendary sceptic and challenger of paranormal and pseudoscientific claims, was invited to the University of Wisconsin-Madison where they were trialling FC with autistic children. Randi had intended to spend several days at the facility but was dismissed after the second day.
He was amazed by the self-delusion of the scientists there; a seven-year-old child with complicated social and communication problems typed out “I need a new hypothalamus”. Randi said “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!” He describes the whole experience as heart rending.
To test the claims of those working with the children, Randi conducted an experiment. While their facilitators were out of the room, the children were shown cards with everyday words written on them, and the words were read aloud. In one example the child was shown the word “basket”, it was read aloud and repeated and then shown to those in the room. When the facilitator returned the child was asked to type what the word they had seen and heard was. The typed word was “Madison”. Randi told the child that that was not right and asked her to try again – the word typed out that time was “Woman”. Again Randi said that that was not right. Rapidly the facilitator typed out using the child’s hand “I don’t like this man, send him away. Flossie (the facilitator) you are the only person with whom I can communicate, he is spoiling everything for us.” By this point they had lost control of the child, who was now writhing on the floor.
In another case a boy was lying face down on the floor screaming and thrashing, but was still able to type long, meaningful sentences with the hand being controlled by the facilitator. Randi asked the experimenters how it could be the child communicating while his head was below the level of the table and unable to see the keyboard? They said he could sense where the letters he wanted to press were.
Several peer reviewed studies appear to confirm Randi’s suspicions about FC. Howlin (1997) reviewed 45 controlled trials of FC involving over 350 subjects and in more than 90 per cent of cases the responses were found to be influenced unwittingly by the facilitators rather than the patients. Bebko, Perry and Bryson (1996) found that among students who were capable of responding independently, their responses were worse under facilitated conditions than they were unsupported. A review commissioned by the Department for Education and Employment (Jordan, Jones and Murray 1998) concluded that it would be hard to justify further research into FC.
Randi was deeply affected by the whole experience, particularly the case of a young autistic boy called Michael. Although Michael had some speech and was able to understand what was said to him, he had severe communication problems. Before the experiment began, Randi asked Michael to show him how to play the drum. He found a set of drum sticks and banged on the drum, beaming, and went on to show Randi some of the other instruments he could play. Later on the experimenters sat Michael down in front of a keyboard and asked him to type his name. A woman sat next to him, her job to support his arm. Meanwhile, Randi held a piece of paper in front of the woman’s eyes, blocking the keys from view to prevent her from influencing what is written. The experiment began.
What Michael had typed was nonsense; the scientists in charge of the experiment, disturbed by this outcome, called a halt to proceedings. Holding James’s hand Michael said “are they mad at me?” “No,” Randi said. “They’re mad at me.”
The moving story of Rom Houben has now been seen and heard around the world. Of the coverage, James Randi said “I believe that he is sentient. They’ve shown that with MRI scans”, but of the use of FC he said “You see this woman who’s not only holding his hand, but what she’s doing is directing his fingers and looking directly at the keyboard. She’s pressing down on the keyboard, pressing messages for him. He has nothing to do with it.” In an update to an article on Houben, Randi dissects a video clip of the process: “the ‘facilitator’ is looking directly at the keyboard, while the subject is asleep! There can be no further doubt.”
The work of Dr Laureys and the Coma Science Group revolutionises the way we think about people in comas and their treatment. MRI scans are commonplace for healthy and communicative patients, but to revisit patients diagnosed before the technology existed to try and give them a second chance at life is truly commendable. Houben’s case proves that there may be many more people who could otherwise have been ignored or left to die – in a paper published this week Dr Laureys estimates that as many as four in ten people considered utterly comatose may be misdiagnosed. This story demonstrates a triumph of modern science and the compassion of humanity – to sully that with fallacious nonsense like FC is an insult to all involved.