Conscious "coma man"'s words seemingly delivered via discredited "facilitated communications" technique

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44 Responses to “Conscious "coma man"'s words seemingly delivered via discredited "facilitated communications" technique”

  1. Anonymous says:

    What they should do is get Derren Brown to work as the communicator. After seeing his performance in Italy on Channel 4′s 3d magic special he’d be the ideal person to use.

  2. crashgrab says:

    “without more information, it’s impossible to say whether the words attributed to him that we’re reading are his, or a product of his facilitator’s unconscious mind.”

    Or what about a product of his facilitator’s conscious mind? What if his facilitator has an agenda regarding the care of the paralyzed/comatose, or worse, just want attention? Those could be reasons to fake communications from a comatose patient.

    I’m not saying it isn’t real, but the more I read about this I’m unsure.

  3. Anonymous says:

    I read that he can move a toe, and that it was this method he first used to communicate his awareness. So, it would be a simple matter for him to be interrogated (this is what it would amount to, imho) in order to verify that he is, indeed fully aware.

    reCapthca sez: ignites Loving

  4. crashgrab says:

    Could they test to see what areas of the brain are active while he’s trying to communicate? Wouldn’t there be some way to tell whether language centers are being active?

  5. LLChris says:

    It’s interesting, though surprising, seeing people here whining about FC (facilitated communication) being such a scam and all that. As a carer for people on the spectrum I’d like let you know that people are affected by autism in different degrees of severity before asking you one thing:

    If only one of them writes a book via FC as a young adult and his condition improves over the years due to endless hours of therapy and training, and he then, 10 years later is able to write a book on his own about how helpful the FC was, what is your answer? “Yeah, well maybe your helper was no scam, but all the others are!” “You’re hallucinating!”? “Shut up!”? “Who gives a toss?”?

    Yes, there are several authors one the spectrum out there and yes, this applies also for “coma-man”. So please, cut them some slack before grouching about something you never did for yourself or even remotely know about.

    • warreno says:

      Do you have the slightest shred of evidence to back up the claims you’ve just made? A single title by a single author whose story bears out your assertions? Or are yu just a prattling nincompoop?

    • phisrow says:

      Did you, in fact, just make an argument from hypothetical anecdote? Srsly?

      If FC wants to be more than a ouija board with a special needs kid attached, all it has to do is perform reasonably above chance on any of the simple double blind exercises where it has thus far notably failed to do so.

      It isn’t a difficult standard, nor an unfair one. It simply means that FC has to work even when the facilitator does not know the correct answer. Until that simple standard of proof can be met, the fact that FC is an excellent source of inspiring anecdote and a poor source of data will be suspicious rather than confirmative.

      • LLChris says:

        What exactly was hypothetical in my example? Maybe I was not clear enough, but books have already been written by people severely affected by autism with help of FC AND after several years on their own. http://en.wikipedia.org/wiki/Birger_Sellin is a prominent example of this group of authors, yet the scientific community seemingly strives to keep this group out of sight while discussing FC. I tend to believe it’s because as soon the authors become noted, they’ve already left the stage of FC for autarky, thus having nothing in hand to prove their claims.

        @arkizzle
        You may be right, my examples were exaggerative, but if you follow the discourse around FC “it’s amazing anyone still falls for it anymore” is generally the first reaction to it. As the headline says: “… delivered via discredited FC” In my humble opinion it is ‘discredited’ by some but still ‘discussed’ by most. All I tried was to point my finger at the fact, that what’s seemingly so obvious in most cases is not.

        And as much as I like James Randi for criticizing all the bogus stuff from Uri Geller to Peter Popoff for swindling people out of their money, I do think it’s myopic from him to discredit the FC the very same sensational way, although 95% of FC is done within a family with reasonable success (in the eyes of the concerned) and thus has not deserved the same treatment (in sense of a public discrediting out of dissent) as those money grifting fainaiguers.

        And last but not least I think that a direct way of communication via BCI would be a more believable way than FC (in terms of verifyability), but it’s still preferable to not trying to communicate at all.

        • Beelzebuddy says:

          What is it with autism and viciously defending one’s own brand of hokum against the doubters and deliberate naysaying by the scientific community?

          95% of FC is done within a family with reasonable success (in the eyes of the concerned) and thus has not deserved the same treatment (in sense of a public discrediting out of dissent) as those money grifting fainaiguers.

          Reread this sentence you just wrote. Do it again until you understand why we (rightly) call it junk science.

          • Snig says:

            Part of it was some recent cognitive dissonance within science concerning the epidemic. When your kid, and ten others out of a thousand are diagnosed with a condition that is supposed to only occur once in 10,000, and you anecdotally know so many other families with kids with this 1 in 10,000 syndrome that you begin to doubt the established science. It was once “woo-woo” to question the 1 in 10,000 number. At the time my kid was diagnosed, there was also great ballyhoo about it being genetic, and short shrift given to possible environmental changes. Several families with siblings on the spectrum, but no one knowing of autism in their family. The numbers have now changed, and the CDC now admits there’s a possiblity that an environmental agent may be partly responsible.

            It also can be a pretty disabling syndrome for the family to have to deal with, that often varies widely in severity with “good days” being bearable and “bad days” not so good. A lot of the interventions have been only weakly assessed, so any kind of intervention that seems to lead to a few more good days is likely given more credence than it deserves.

            Some of the interventions that have been eventually been somewhat supported by research, like ABA, were of course once just woo-woo.

  6. Anonymous says:

    would it make a difference if the translator did not speak the language of the patient?

    -milkshake

  7. Spike Jones says:

    Ask him a series of questions about his life from before his accident that his facilitator could not know the answer to. Seriously, has no one thought of this yet?

  8. octopod says:

    well, duh

  9. arkizzle / Moderator says:

    LLChris,

    Not one person above has a single unkind word for Houben, and I think you are mischaracterizing the conversation so far with words like “Shut up!” and “Who gives a toss?”. Commenters here have criticized a technique that has been roundly disputed by the professional medical community. No one is denying Houben’s cognition.

    There are clearly better and worse variations on the system (more or less provably authentic) and it seems that if blind, or double blind, facilitation was done, more consistant results might appear.

    Perhaps if you have specialist knowledge to add, you could share it and enlighten us, rather than picking on something fairly prosaic and reacting like we’re monsters for opining in that direction. No one is suggesting turning our back on autism or coma victims, only arguing for better implementation of FC in appropriate circumstances.

    The procedure is controversial, since a majority of peer reviewed scientific studies conclude that the typed language output attributed to the clients is directed or systematically determined by the therapists who provide facilitated assistance. Some peer-reviewed scientific studies have indicated instances of valid FC, and some FC users have reportedly gone on to type independently.
    - wikipedia

  10. Eric Ragle says:

    As all of the various outlets began filtering this story out yesterday, I couldn’t help but think that if this man was locked inside his own head for all that time, what are the chances he would be sane? I know there is really know way to know but at some point this man had to lose some mental capacity just from the isolation and frustration.

    Any way, that’a a bit off course for this thread. The technique they used to help him “communicate” does seem dodgy, especailly since I believe the results would be more accurate with computer communication.

  11. libraryboi says:

    A video aired on CBS and available on their site (see below) is a damning indictment of the failure by the global media to cover this story with any accuracy. His eyes are clearly closed yet the typing continues with considerable speed and accuracy. How can you type if you can’t see the screen?

    http://www.cbsnews.com/video/watch/?id=5759694n&tag=contentMain;contentBody

  12. Lester says:

    What is amazing is how quick most folks — myself included — were to accept this story at face value. I was taken in with the horror-story notion of being trapped in your own body, that questioning the story didn’t even occur to me until I read Randi’s blog entry on JREF.

    Even Nancy Snyderman and Sanjay Gupta — trained physicians — fell for it, which reminds me of how easily the “experts” can be tricked. Read about Project Alpha, if you haven’t before. There’s a good writeup on wikipedia.

  13. Anonymous says:

    @Lester (#16)

    “What is amazing is how quick most folks — myself included — were to accept this story at face value.”

    Interestingly, this also applies to James Randi…
    ;)

  14. voxluna says:

    A little late to the game, but there’s a guy in Tampa named Mike Phillips who communicates with just the flick of his eyebrow. When he was first featured on This American Life (Google it), he was typing with just one thumb, but his disease progression has caused even more problems since then. http://lithiumcreations.com is his blog.

    I had heard reports of the “coma” story in the background, but when I actually saw a video package, I simply couldn’t believe they took it hook, line and sinker. NO ONE questioned this woman jamming buttons on a keyboard faster than the guy could look at them… as he sat drooling and disaffected. In fact, AFAIK, BB is still the only place it’s been brought up.

    Locked-in syndrome makes for great, scary news, but I wouldn’t trust this facilitation business as far as I could throw it. Randi FTW.

  15. Anonymous says:

    Berger Selin still uses FC. They describe it as “withdrawing”, but all this means is that Berger is held by the shoulder rather than the hand. There is still someone giving cues, and is still FC- if you have evidence otherwise I would be interested to see it. Otherwise, its rather far from your anecdote.

    Furthermore, even if that happened, it wouldn’t change that we know most FC is the facillitor and so that would still mean we should demand evidence in each individual case.

  16. nanuq says:

    I’m mostly thinking how devastated the family will be once they accept that the communication method they pushed for is giving them false answers. As it is, conventional communication methods are never going to be as good.

  17. wil9000 says:

    NPR had this story yesterday, and many listeners have complained, along with me, that the story was accepted so credulously. Hopefully they will follow up with the sad truth. And in response to Nanuq, the family will never accept that he is still in a coma. They’ll just stay trapped in their delusion. We all wanted to believe that a miracle could happen. Everyone wants a happy ending, but this isn’t it.

  18. Boondocker says:

    This is a really interesting story; from my point of view, the most interesting part is that they don’t mention trying any other forms of augmentative/alternative communication. This part:

    Houben has since proven able to answer yes-or-no questions with slight movements of his foot.

    If he can answer yes/no questions accurately with his foot (and the accurately part is very important, obviously), then he can use at least one form of partner-assisted communication. Watch this:

    Partner Assisted Auditory Scanning

    By substituting a foot movement for the eye blink in the video (and by having the alphabet board visible to partner and patient), Tom could have a means of communication that would probably be more reliable than the facilitated communication thing.

    The most important thing, of course, is that this system is able to be learned really easily. That means that more than one person can act as Tom’s partner, increasing the reliability of the interpretation.

  19. Snig says:

    Another obvious way to test it is that the guy speaks 4 languages.

    If only we could find someone who speaks fewer languages..

    Stand back Europeans, this looks like a job for an American!

  20. Anonymous says:

    Who not let someone who doesn’t speak the language perform this so-called facilitated communication? That’s as double blind as it gets.

  21. poolshark says:

    @OoOoOo: I confirm that it is indeed the episode “Cruel and Unusual” (seasion 5, episode 19).

    There was another episode where they trick somebody into confession by pretending a person in a coma is able to respond to simple yes and no answers, but that episode was not about facilitated communication.

  22. Toast says:

    When I saw this story, I immediately thought of this Frontline story from 1993, “Prisoners of Silence”

    http://video.google.com/videoplay?docid=3439467496200920717

  23. LemonOne says:

    I read that the facilitator reacts to the subtle pressure expressed by Houben. If that was the case, couldn’t you hook up an electronic device that would be a thousand times more sensitive to changes in pressure. Wouldn’t that be as accurate if not more than the facilitator?

    • Ted8305 says:

      If that was the case, couldn’t you hook up an electronic device that would be a thousand times more sensitive to changes in pressure.

      Yes, but ouija boards hooked up to electronic devices just don’t produce the same kind of results.

  24. Anonymous says:

    I heard the NPR piece on this today, and I think the facilitated communication was worked out by his family. He is now communicating via computer, according to the doctor attending him.

  25. No Imagination says:

    If it’s really Houben, the answers should come without the facilitator being able to see the screen, and especially not the keyboard. Hearing the questions should be irrelevant. The system could be safeguarded by Houben being required to use his foot to confirm or deny that he wanted to say what appeared on the screen.

  26. kiloseven says:

    .- -. — – …. . .-. | –. — — -.. | .-. . .- … — -. | – — | .-.. . .- .-. -. | — — .-. … . | -.-. — -.. . | – …. . | — .-. .. –. .. -. .- .-.. | -.. .. –. .. – .- .-..

  27. Brainspore says:

    “Facilitated Communication” is one of those things that’s so easy to test that it’s amazing anyone still falls for it anymore… all you need to do is ask the subject a simple question when their “translator” is out of the room and see if they can answer it afterward.

    I hope that they find a way to let this poor guy communicate for real. If they do his first words will probably be “get this damn scam artist the hell away from me!”

  28. Anonymous says:

    Thank you. I just saw the earlier article and tried to comment on this issue, only to get an error message.

    If he is conscious in there, and that’s far from certain given the dodgy doctors involved (it may be the case, and at least there’s a chance of it being accurate, unlike the “facilitated communication”), then the only thing worse than that must be knowing that someone is using your finger to poke out bullshit messages and claiming to speak for you.

    Facilitated communication is one of the more vile and disgusting forms of medical woo.

  29. Anonymous says:

    Hook him up to a braingate-like gizmo… control the cursor directly with his brainwaves!

  30. Anonymous says:

    Wait. . . Ouija Boards have been discredited? No wonder these guitar lessons I’m getting from Jimi Hendrix are making me sound more like Frank Marino.

  31. Patrick Arcee says:

    Hey. I used to work as a highly respected facilitative communicator! I only quit because all my clients ever wanted to do was browse for ‘furries’.

  32. Anonymous says:

    Cory, you’re being a wee bit too kind. A facilitator isn’t necessarily typing out messages “subconsciously”. It may just as well be an out and out fraud, or a well-intentioned fakery that starts out small and private but grows large and public.

  33. Anonymous says:

    Surely after 23 years of inability to communicate, you would spend at least one whole year screaming and then another 2 shouting at everyone due to the rage you have built up from being incomunicado inside a woken coma? Not “I am very well thank you, how are you?”

    I saw this on the news http://bit.ly/7SRvX7 and the speed at which the interpreter/facilitator typed, all the while looking over Rom’s shoulder at the screen, and the generic nature of the responses represented a general fictitious ness that made it difficult to suspend disbelief.

  34. OoOoOo says:

    There was a whole “Law and Order” Episode about this a few years ago. I was trying to find the episode, but people on the net think it was “Cruel and Unusual” and I think it was a different one. Oh well. Anyway, Jack McCoy debunks the whole facilitated communication thing and the mother has to realize that she’s been communicating with herself for many years. Sad.

  35. apoxia says:

    Thanks so much for posting this! My partner and I watched a TV news report on this and when we saw footage of a woman performing facilitated communication with the man we both looked at each other and were not impressed. We have both learnt about the farce of facilitated communication in our undergrad psyc studies. What surprised me especially was the blatency. On the news footage I saw the man had his head to the side and HIS EYES CLOSED while the communicator intently looked at, and typed on the keyboard with his hand.

    This really is a disgrace, I seriously hope he has been given access to better communication options, they certainly exist!

  36. Anonymous says:

    Easy way to test this. Have an impartial person say a number to the coma person while they are alone. Then have the facilitor come back in and ask the coma person to repeat the number. If they are lucid and faciliation of this sort works then it should be no problem.

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