So brilliantly you’ve presented a really transgressive case through the mainstream media

December 5th, 2009 by Ben Goldacre in anecdotes, bad science, evidence | 57 Comments »

Ben Goldacre, Saturday 5 December 2009, The Guardian

Here is a mystery. Rom Houben, a Belgian man, was diagnosed as being in a coma for 23 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 goes further than that: it is also claimed that he was conscious all along, but simply unable to move, a well-documented phenomena called “locked in syndrome”. This has been reported as a news story around the world, in The Sun, Sky news, CNN, the BBC, the Telegraph (repeatedly), Der Spiegel, Australian TV News, The Guardian (in 4 separate pieces) and hundreds more.

One thing raises alarm bells. Mr Houben has been describing his experience of having locked in syndrome through something called “facilitated communication”: someone holds his finger, can sense where his hand wants to go on a screen, and helps him type, pretty rapidly, if you watch the TV footage.

So it doesn’t seem unreasonable to look at what is known about facilitated communication. Many have compared it to ouija boards, in the sense that facilitators may fully believe they are following an external force, when in reality they are generating purposeful movements themselves. While there’s no space here to describe all the studies ever conducted (and I wouldn’t claim to have read them) I can tell you about some large reviews of the literature which seem competent.

The practise 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, but 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” and concluded that it would be hard even to justify further research.

An academic review in 2001 (links online) 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 the American Academy of Child & 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 (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, at – 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 the 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. 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.

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57 Responses

  1. Xobbo said,

    December 11, 2009 at 6:46 am


    Health Pain isn’t automated spam, he’s really communicating! You just don’t understand him because you don’t have the right connection with him!

  2. rob212 said,

    December 11, 2009 at 9:47 am

    Thought of that and promptly dismissed it. Something you are dismissing without thought is that fact that news presenters and producers really love turning the screws by really emphasising how long it might take someone to type out an answer.

    Eh? What on earth are you talking about?

    And boy oh boy that presenter is showing such compasion.
    No, you show the process, then abreviate it. You don’t abreviate and not have one single, solitary report mention it.

    This too; what on earth are you saying? You paragraphs don’t make sense

    AND then there are the actual answers he’s given, even if you somehow get over the first two hurdles and still choose to believe that it really is the man himself you have to explain how come he’s so articulate

    Why would he not be articulate?

  3. Caitlin said,

    December 11, 2009 at 1:29 pm

    I heard about this a week or so ago (before I’d ever heard of Bad Science) and didn’t think to question it. Like kingal86, I just assumed the special keyboard was something that directly responded to minute movements in Houben’s finger. It’s amazing how you fill in the gaps in news reports and make assumptions which are completely wrong without even thinking about it!

  4. Guy said,

    December 11, 2009 at 2:48 pm

    There is today in the Guradian a very strange right to reply piece, saying that FC isn’t always bad and that perhaps he is just learning to improve his typing by looking the other way whilst she concentrates on typing at 20 words per minute.
    Very strange argument but quite amusing. No comment however on the possible abuse or manipulation of this man.

  5. Mr Trousers said,

    December 11, 2009 at 11:30 pm

    Apparently it’s being looked into. A quiet resolution to this would be what’s best for the family I think.

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  7. heavens said,

    January 26, 2010 at 11:46 pm

    To quote Ben, “I think you’ll find it’s a bit more complicated than that.” FC (and related) for a kid that could speak perfectly except for having trouble organizing the muscles required to physically produce the sounds is different from FC for other purposes.

    I’ve been introduced to a 20-year-old man with moderately severe autism, and who could be the poster child for FC. He does what they insist is “FC” at an advanced level, by which I mean that he types by himself, and has had private conversations without any FC person present, but who usually wants the soothing presence of a familiar person while he types (at least if the sentence is longer than a couple of words or on any subject other than food — and for his favorite food, he’ll happily tell you verbally what he wants, although it might take a try or two). I’m perfectly convinced that you can’t type sentences for someone when you have two fingers lightly resting on his elbow.

    Having closed eyes doesn’t bother me: I can type with my eyes closed; can’t you? But some of these other things… Wow, I can’t believe that anyone would believe it. FC-generated statements are certainly not evidence of locked-in syndrome. It reminds me of the “psychic” who famously read a book on cold-reading techniques and realized that’s what she’d been doing her whole career.