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.

If you like what I do, and you want me to do more, you can: buy my books Bad Science and Bad Pharma, give them to your friends, put them on your reading list, employ me to do a talk, or tweet this article to your friends. Thanks! ++++++++++++++++++++++++++++++++++++++++++

57 Responses

  1. danielrendall said,

    December 5, 2009 at 1:44 am

    I found the video extraordinarily convincing. It certainly didn’t look as if the facilitated communicator was simply yanking his finger around with suspicious speed and precision. No, wait… actually it did look a bit like that.

  2. danielrendall said,

    December 5, 2009 at 1:58 am

    Sorry, maybe that last comment was a little flippant. More seriously, surely one could test FC by asking the subject (via the FC) about their life and knowledge, some of which are legitimate questions, and some of which presuppose things which aren’t true (in the manner of Terminator enquiring about Wolfie in T2 to ascertain whether John’s foster parents are dead). If the subject (via the FC) attempts to answer the nonsensical questions with plausible answers, that would suggest that the FC is winging it. Has this been done? Or am I missing something obvious?

  3. chris lawson said,

    December 5, 2009 at 3:46 am

    Daniel, the experiment has already been done and it was much simpler than that. You show the facilitator one photograph and the subject another and then you ask about the photograph. And the result? “After three months, running hundreds of trials with 12 students and 9 facilitators, there was not one single correct response.” (

  4. cormorant said,

    December 5, 2009 at 4:49 am

    You can see that he IS conscious though. In the video someone walks up to him and puts their face close to his and he flinches away.
    Doesn’t that mean he’s definitely not in a coma anymore?

  5. j0ni said,

    December 5, 2009 at 5:59 am

    @cormorant that’s not so much at issue as is the question of whether the statements attributed to him are actually his. Worst case, he is in fact conscious, but his communication has been effectively hijacked by FC.

  6. danielrendall said,

    December 5, 2009 at 8:54 am

    @chris Thanks for the link. It amazes me that techniques like this, of which the efficacy is not so much unsupported by evidence as actively refuted, are given any kind of official sanction anywhere. Yet evidently they are, and the comment in that article about professional staff being “ostracized” for not believing is exactly what you’d expect to happen when it does. All very depressing.

    I wonder what the FC community say in the face of experiments which show them to be in error? Do they pull a homeopath-confronted-with-RCT and claim that it can’t be tested in crude tests or that the effects go away when you try to measure them?

  7. gmansford said,

    December 5, 2009 at 9:48 am

    Well done Ben on running this. The gullability of the press never ceases to amaze me. The only shining light is the Daily Mail which was sceptical from the start (never thought I’d use that word for that paper). I thought the Clever Hans phenomena was well known but clearly not to newspaper editors looking for a good story.

    I thought your article gave a good balance of asking people to judge for themselves, presenting the background science, without going into the exploitation of this man by his “carers” and the potential impact on his poor wife.
    Still waiting for the Editor of the Guardian to run a piece retracting their ridiculously gullible articles.

  8. billyo said,

    December 5, 2009 at 10:02 am

    I like the bit in the video where it says “specialists have taught him to communicate using a special keyboard”. There’s nowt special about that keyboard. There’s “something” about the magic way he’s waving his arm around.

  9. PhilEdwards said,

    December 5, 2009 at 10:10 am

    I used to ‘board’ sometimes for my friend John, who had severe cerebral palsy; I was pretty good at it, which meant that I could usually tell which letter he was pointing to without him having to press his nose right onto the board. But I guessed wrong sometimes and had to start again –

    P: C, O, N, S, I… “considerable”
    J: [groans, shakes head]
    P: OK. C, O, N, S, I, D… “considerably”
    J: [groans louder]
    P: OK, sorry about that. Go again. C, O, N, S, I, D, E… “consideration”? OK. “Consideration”… O, “of”… T, “the”…

    And so we’d go on. Even with motions as definite as John made, to do it without any false starts & without any confirmation or disconfirmation would be miraculous. To ‘read’ impulses towards particular letters from one finger, whose owner isn’t even looking at the board… no.

  10. Saturn5 said,

    December 5, 2009 at 11:03 am

    Thanks again, Ben, for teaching me to be more sceptical. I suppose I thought of The Diving Bell and the Butterfly and imagined he was communicating in a similar way. Or was Bauby similarly hijacked? Hard to say, but I must learn to ask the questions for myself.

  11. natsils24 said,

    December 5, 2009 at 11:21 am


    Bauby did indeed have locked in syndrome, however he retained the ability to blink. So he would blink when someone reciting a French ordered alphabeat got to the correct letter. Really remarkable, well in fact that is a complete understatement.

  12. thatgingerscouser said,

    December 5, 2009 at 12:05 pm

    How come ‘Brilliantly’ has been spelt with 4 ‘l’s? Has Ben been using facilitated communication himself??

  13. botherer said,

    December 5, 2009 at 12:19 pm

    I don’t know if a post-Singhgate Guardian means you can no longer state that nonsense is nonsense, but this article on seems to get rather more convincingly to the point:

  14. botherer said,

    December 5, 2009 at 12:22 pm

    Apologies – the above comment was not meant to come across as a snide dig. Rather, a concerned worry. But I’m a buffoon.

  15. Guy said,

    December 5, 2009 at 1:12 pm

    Spelling – this went out in The Guardian remember!

  16. Daibhid C said,

    December 5, 2009 at 1:21 pm

    @cormorant – I think there’s no question he’s conscious (Ben refers to him opening his eyes, which makes it even odder that he has them closed when supposedly trying to communicate).

  17. mattyturner said,

    December 5, 2009 at 2:52 pm

    Of course if the woman helping him type (or typing) can’t speak English in that video than presumably he’s doing the replying?

  18. kim said,

    December 5, 2009 at 3:02 pm

    If he’s not looking at the keyboard, how can he possibly be directing the typing? The whole thing is ludicrous.

    In a way, it’s cheered me up. The thought that he’d been conscious but paralysed for 23 years was giving me nightmares. (I suppose he *may* have been conscious for 23 years, but we can’t know for certain.)

  19. jcroot said,

    December 5, 2009 at 3:23 pm

    Also distressing is the fact that any news outlets are terming this a coma at all (as in the link above [], rather than calling it what it is – locked in syndrome. I’m sure this will have all the usual social commentators out there using this as an example of why life supporting measures should never be removed given a chance of recovery like this one when this is in fact not an example of recovered coma.

  20. jcroot said,

    December 5, 2009 at 3:32 pm

    In fact, what potentially makes this story unique is the fact that apparently his physicians missed the diagnosis of locked in syndrome for over twenty years of observation.

  21. Joe said,

    December 5, 2009 at 3:49 pm

    Surely whether this guy is able to communicate or not could be really easily tested. 4 piezoelectric sensors placed around his typing finger would measure really small movements (much more accurately than a person) and could be converted into the movement of a mouse pointer on a screen.
    Has this been tried at all?

  22. Guy said,

    December 5, 2009 at 3:50 pm

    JCroot – Remember that the person telling you he was locked in is also the person telling you that he can type at some ridiculous speed without looking at the keyboard. The press get very impressed when brainscans are involved but as Ben pointed out, there has been no publication in peer reviewed journals on this case. It seems clear to me from the video clip that he isn’t typing but his “speech therapist” is. Whether he was locked in is uncertain if he can’t communicate to tell us. I’m waiting for the published paper.

  23. jcroot said,

    December 5, 2009 at 4:05 pm

    good point guy – I should be more skeptical. Is the evidence for his awareness solely from the FC? I had seen somewhere that he was also able to answer yes no with his foot.

  24. pv said,

    December 5, 2009 at 4:41 pm

    People, especially media hacks and religious fanatics/leaders, are desperate for miracles. Miraculously there is always someone on hand to oblige – or, if I may be so bold, facilitate.

  25. robP said,

    December 5, 2009 at 4:51 pm

    Joe and jcroot are on the right track: can Rom Houben communicate even one bit of information independently, by moving an eye, a foot,
    a finger, whatever? If so, we can ask him if he is recieving and sending communication. (And in this case communication could begin as with Bauby, without FC.) If he cannot communicate independently then we really don’t know what’s going on.

  26. sunkeeper said,

    December 5, 2009 at 6:27 pm

    I use to facilitate students who were non verbal and on the autism spectrum. That was back in the 90’s. I can tell you from experience that it did help the students who could not verbally communicate. There was a lot of speculation in that people thought that it was the facilitator doing the movements. In my case it was not!
    I only supported the students wrist and the student would move his own hand. Unfortunately for the students, the Toronto Catholic District School Board did away with facilitated communication. It was politically motivated!!!!!
    As I watched the video I wondered myself why the facilitator was moving very fast. The way it is suppose to be done is to just support the wrist and make sure the pointer finger is touched the keys.

    Lorraine from Toronto, Ontario Canada

  27. sunkeeper said,

    December 5, 2009 at 6:33 pm

    I viewed the video again. There was no way that the young man was communicating. His eyes were closed.
    The facilitator was doing all the work.

  28. Saturn5 said,

    December 5, 2009 at 7:07 pm

    I don’t think the video alone should be taken as evidence against. It has been known that the media set up events from time to time, has it not? I can imagine a producer/reporter/cameraman asking ‘can you show me what this facilitated communication looks like?’

    However, Ben’s questions remain valid. I’ll be interested to hear more.

  29. Omanyte said,

    December 5, 2009 at 10:57 pm

    Ben, you are being kind and careful in your assessment, calling this a ‘concern’. I think this case is a complete fabrication of the ‘facilitator’ and she is making up all of the typing for Rom Houben. Look at her deliberate typing holding his hand, while his head is turned away and … his eyes are closed! No one who is healthy can type like that, not even with a facilitator – and he’s been disabled for 23 years!

    His doctor is not going to do any of the tests, because in an interview on Dutch television he was convinced that Rom was ‘locked in’, and I feat he’ll probably will go about looking for more evidence for just that.

    Readers may want to check out James Randi’s blog: check out – he calls it a “Cruel Farce”, “which has to stop”. I think I agree with James.

  30. Guy said,

    December 6, 2009 at 11:00 am

    Saturn, you say that you don’t think the video should be taken as evidence against. The doctor involved has been investigating this man for 3 years I believe. He has published widely on this subject matter (and no others) yet hasn’t published anything that I can find about this man. So we can only go on the evidence that he has produced to the media. His choice, and he seems to feel we should be convinced by it. We are not.

    If he can add to it with peer reviewed publication, then with the usual provisos, we may give less importance to the video.

    I’m fascinated by the role of the wife in this. Reports say that she’s been taking him around European clinics for years. I’m finding it hard to see this case as anything other than abusive of this man. When I hear that “he” is “writing” a book, then further alarm bells ring. After all this publicity, it’s bound to be a best seller and earn lots of money.

  31. Saturn5 said,

    December 6, 2009 at 12:45 pm

    @Guy: I mean that the film of Mr Houben typing could just be ‘here’s how the typing works’, or ‘here’s the machinery’ for TV, rather than meant as an actual demonstration of FC. It could be meant as an actual demonstration, but we don’t know that, do we? So until we know whether this is meant by Prof Laureys to show actual FC then I don’t think this makes the case against on its own.

    We have to be sceptical both ways, don’t we? We can’t say media evidence is unreliable one way, but not the other, can we?

    There’s plenty of other better evidence to consider which leaves us in doubt as to the reality of this story, and which Ben has indicated. We hope for better evidence one way or the other in this particular case soon.

  32. Guy said,

    December 6, 2009 at 2:15 pm

    The video as such might just be a demo, but this was part of a press conference, where journalists asked him questions about what it was like to be “locked in” for 23 years. He answered through the medium of his “speech therapist” typing for him. He/she produced lengthy complex answers very quickly through a touch screen.

    I doubt whether we will hear anymore on this until the book hits the shops, when it will be heavily promoted again. Like Ben I am dubious that there will ever be a peer reviewed paper on this.

  33. birkett83 said,

    December 6, 2009 at 3:29 pm

    PZ Myers posted an article about this, including the suggestion that since according to the reports, Rom Houben “speaks” Flemish, they could get a non-Flemish speaker to aid his “assisted communication”. If he can demonstrate the same speed and accuracy typing Flemish with the help of someone who doesn’t understand it, then the words must be his own.

    I think that would serve to convince everyone if he could accomplish it, and more likely, I’m sure his loving family would produce some bullshit about how he had a real close connection with his previous assistant and that’s why it’s not working any more.

  34. cheezy said,

    December 6, 2009 at 3:38 pm

    As usual, the story got a bit mangled up by the press. This story follows from the acutal research done by Steven Laureys (and others), which was published in July in “BMC Neurology” (“Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment”) [ ]. In their study, they found of the patients diagnosed as being in a vegetative state, 40 percent weren’t. That was the most important outcome of the study.

    “Der Spiegel” wanted to do a story about it (after reports in other countries), and asked for a “human case”. Rom and his family already appeared in the press before, and they agreed for an interview.

    Important to note here is that the doctor (who is apparently not his regular doctor, but only studied him as one of the subjects of his research), is sceptical about the facilitated communication too. He believes Rom can communicate (he has been communicating with his environment for three years now, first with his foot), is not in a vegetative state, but distances himself from the facilitated communication (which is done by personnel of the institute that takes care of Rom, which is not the same as the institute Dr. Laureys is working for).

    In the hope this untangles the case a bit, so we can seperate the “vegetative state or not” discussion from the “facilitative communication” discussion. And clear up the role of Dr. Laureys too.

    This comment was based on an interview with Dr. Laureys published on the Flemish newspaper “De Standaard” on the 28th of November 2009.

  35. Guy said,

    December 6, 2009 at 4:43 pm

    Thanks for that Cheezy. I was certainly wondering what Dr Laureys’ role was, as from his publications he appears to be legit. If these aren’t his claims at all and we’re just down to Clever Hans and the whole FC charade then it seems a bit clearer. Thanks again.

  36. WilliamSatire said,

    December 6, 2009 at 9:03 pm

    I blogged about this a few weeks ago.

    In my really childish posting. Mine pretty much says the same thing. Without the cleverness…

  37. mikewhit said,

    December 7, 2009 at 12:46 pm

    Typo alert – “The practise was popular” -> “The practice was popular”

    Like advise (verb) and advice (noun) !

  38. mikewhit said,

    December 7, 2009 at 12:50 pm

    “someone reciting a French ordered alphabeat” – what, not those annoyingly upbeat Danish popsters ?

  39. Mijin said,

    December 7, 2009 at 5:40 pm

    “The only shining light is the Daily Mail which was sceptical from the start (never thought I’d use that word for that paper).”

    Clearly any skepticism hasn’t lasted:

    At least some of the comments question FC.

  40. Health Pain said,

    December 8, 2009 at 1:15 pm

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  41. Mr Trousers said,

    December 8, 2009 at 3:28 pm

    FC has been absolutely debunked, but as the case with other belief-based attitudes (ghosts, alien visitations etc) those that believe continue to do so in the face of any evidence. The most depressing are those whose subconcious desire to help has overwhelmed their ability to view the situation dispassionately. All the trials and experience shows that even showing them how it was donw they’ll still claim things like “In my case it was not!
    I only supported the wrist”.
    As to whether Houben himself is aware, well a pretty well regarded Neurologist seems to say that some scans show he is. So far I’ve not seen that Doctor claim since when, or how much. So all that appears to be media hooplah.
    My best guess would be ‘minimaly concious’.
    It’s heart breaking, but families always (understandably) think their case is different. That squeezing their hand is a good sign. That they definately reacted. They really know they are here. I can’t fault Houbens mother for hoping, but I do fault that supposed facilitator.

  42. jaap said,

    December 9, 2009 at 8:44 am

    “a well-documented phenomena”
    The singular is phenomeNON!
    Sorry, it’s a pet peeve of mine. Carry on.

  43. DevonDozer said,

    December 9, 2009 at 11:19 am

    Amazing. Even so, there is a very uncomfortable parallel between belief in FC and belief in the AGW (AKA climate change) boondoggle. Many of those being labelled ‘Denialists’ by the MSM seem to be asking ‘good science’ questions. They are even coming up with some interesting facts and figures, despite being accused of all manner of things, as far as I can see without grounds.

    The belief thing is alive and well elsewhere. In the case of AGW/CC it is largely taxpayer funded and with much bigger consequences! Bishop Hill’s blog has lots of links to explore.

  44. mikewhit said,

    December 9, 2009 at 6:03 pm

    Ben, Shouldn’t you update your Talks page to include Any Questions:
    “Eddie Mair chairs the topical debate from Bracknell, Berkshire. The panellists are Northern Ireland secretary Shaun Woodward, shadow work and pensions secretary Theresa May, David Laws, the Liberal Democrat spokesman on children, schools and families, and Dr Ben Goldacre, author of Bad Science.”

  45. csrster said,

    December 10, 2009 at 11:43 am

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  46. pseudomonas said,

    December 10, 2009 at 12:44 pm

    crster: I’m pretty sure that Health Pain is automated spam.

  47. kingal86 said,

    December 10, 2009 at 4:29 pm

    I never even thought of wondering how he was communicating or if it could be manipulated. 🙁 I guess I presumed it something like whatever it is Stephen Hawkin does.

  48. rob212 said,

    December 10, 2009 at 6:33 pm

    Oh come on people! There’s only one thing worse than crazy quacks and snake-oil pushers and that’s people who, on being told everything is ‘fake’, instantly agree without thinking for themselves!

    In other words, when Ben points out something doesn’t seem ‘quite right’, don’t all go starry-eyed and ‘wow! you’re so right!’ just because it’s Ben. Use your own brain to peer-review his articles!

    It’s obvious what’s going on in that video. Anyone who has worked in television can instantly spot it, as I did. It was a reconstruction for the camera to illustrate the patient spelling out words, done quickly to fit into a short news bulletin.

    The patient obviously has poor motor co-ordination and to spell out a word likely takes several minutes. That news bulletin is 34″, and the clip of him spelling out words is about 15″, not enough illustrate the words being spelled-out for the news package if he spells them out in his normal speed.

    To illustrate the ‘concept’ of man in coma spelling out words, the producer has obviously asked the nurse to re-construct what happens during a whole session. I can almost hear the producer now:

    “Oh, he’s asleep is he? Oh dear we wanted to film today. Can you just take his hand and pretend that he’s spelling them out? That’s right, just point his hand to several letters to spell out a word for the shot”

    So was the news package ‘faked’? Not *really*, but it was dishonest and rather silly because anyone watching it who hasn’t worked in television, that doesn’t understand how set-up shots are gathered, is instantly suspicious.

    So rather than getting all excited about things, just chill and realise the story is still likely ‘genuine’. It’s just the way TV news has represented things, is not.

  49. Guy said,

    December 10, 2009 at 7:05 pm

    As a person who emailed Ben suggesting he ran a piece on this the day it first hit the papers, I will ignore your first paragraph.

    No 34 syas- Important to note here is that the doctor (who is apparently not his regular doctor, but only studied him as one of the subjects of his research), is sceptical about the facilitated communication too. He believes Rom can communicate (he has been communicating with his environment for three years now, first with his foot), is not in a vegetative state, but distances himself from the facilitated communication (which is done by personnel of the institute that takes care of Rom, which is not the same as the institute Dr. Laureys is working for).

    This suggests that there might be more to it than a retake for the cameras. With the long and dishonourable history of FC, we also have a right to be cynical.

    So yes, it may be legit. Or it maybe exploiting a man to get the book selling well and another terrible example of FC. Only time will tell.

  50. Mr Trousers said,

    December 10, 2009 at 10:28 pm

    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. Oh man, what a hero. 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. And it’s not just that either as what you’ve completely missed is the fact that Facilitated Communication is utter crap even if you’re going really, really, really slowly.
    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?

    On a side note, the brief, unsubstantiated mentioned I saw that a Doctor had tested him to see if was the patient communicating or not, can’t be believed either. He may very well be a great Doctor but that doesn’t mean he’s bound to be great at a test like that.