Here is a mystery. Rom Houben, a Belgian man, was diagnosed as being in a coma for twenty-three years, and he has now made a partial recovery. This has been demonstrated with a series of recently developed brain-scanning techniques (whose predictive value is not entirely known, but they are promising), and he is also opening his eyes. But the story in the media this week goes further than that: it is also claimed that he was conscious all along, but simply unable to move, a well-documented phenomenon called ‘locked-in syndrome’. It has been reported as a news story around the world, from the Sun, Sky news, the BBC, the Guardian (in four separate pieces) and the Telegraph, through to CNN, Der Spiegel, Australian TV news, and hundreds more.
But there is a problem. Mr Houben has described his horrifying experience of being locked in using something called ‘facilitated communication’: someone holds his finger; they can sense where his hand wants to go on a screen; and by moving with him, they help him type. If you watch the TV footage, it all happens very fast, too.
What is known about facilitated communication? Many researchers have compared it to ouija boards, which is an attempt, I think, to be fair. Some facilitators may well believe that they are guided by an external force; but there have been several large reviews of research into this technique, and overall, it’s not good.
The practice was popular in the 1980s and 1990s, and used mostly in severe autism, so that is where much of the work is found. You might feel this is not entirely applicable to someone with locked-in syndrome; equally, you wouldn’t ignore it. A lengthy research review on educational interventions in autism commissioned by the Department for Education and Employment in 1998 found that in FC ‘almost all scientifically controlled studies showed that the facilitator was the author of the communication’. This finding was so clear that they concluded further research would be hard to justify.
An academic review in 2001 looked at all the more recent studies, updating two earlier reviews with negative conclusions from 1995, and found that overall, again, the claims made for FC are unsubstantiated.
If you prefer authorities to studies, the National Autistic Society says that five major US professional bodies now formally oppose the use of FC, including the American Academy of Child and Adolescent Psychiatry, the American Speech-Language-Hearing Association, and the American Association on Mental Retardation. The American Psychological Association issued a position paper on FC in 1994 (at the height of its popularity) saying ‘studies have repeatedly demonstrated that facilitated communication is not a scientifically valid technique’, and calling it ‘a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy’.
My concern about this is pretty simple. If you watch the video of Mr Houben’s facilitated communication in action – and I encourage you to do so – you will see the facilitator looking at the screen and the keyboard, moving Mr Houben’s finger at remarkably high speed to type out a message, while both of Mr Houben’s eyes are closed, with his head slumped sideways across his chair.
Perhaps this was due to bad video editing. It has also been reported that the facilitated communicator was able to correctly identify objects shown only to Mr Houben in private, although that is a less taxing task than the very rapid one-fingered typing shown on TV. But all of these claims can only be assessed in the context of the overwhelmingly negative research on FC.
Journalists and religious commentators are already writing lengthy moral screeds on the implications of this case for our treatment of people in a coma. That seems premature. Mr Houben’s typing may well be genuine, and therefore atypical: nobody can have a meaningful opinion, because newspapers are no place to communicate breakthroughs which are incompatible with large swathes of current knowledge, and based on what seems to be weak and even contradictory evidence.
Now that the amazing case of Mr Houben’s facilitated communication has been made the subject of a huge media sensation around the world, and extensive ethical speculation, I think we can all look forward to seeing it formally assessed and presented in an academic paper by his doctor, Professor Steven Laureys of Belgium’s Coma Science Group. I’ve made a note in my diary for this date next year. Just to check.
Prof Laureys never published such a paper. In 2010, after international criticism, he allowed facilitated communication to be tested more rigorously with Mr Houben. It didn’t work. This was barely reported.