Respectful Insolence

A couple of months ago, I wrote about a case that demonstrated conclusively just how easily even respected researchers can be taken in by psuedoscience. Of course, I was not alone. A number of others, including Steve Novella, James Randi, bioethicist Art Caplan, Hank Schlinger, and myself, recognized the reports that a Belgian man named Rom Houben, who had been in a coma for 23 years, was actually conscious and could communicate with the help of a “facilitator” named Linda Wouters was in fact nothing more than the example of the quackery known as facilitated communication. This is a particularly pernicious form of pseudoscience that has resulted in great harm. False accusations of abuse have arisen from questioning of children with severe, nonverbal autism, cerebral palsy, and other conditions rendering them nonverbal; lives have been destroyed.

What is facilitated communication? For those who don’t remember or have never heard of it before, advocates of FC tout is as a means of communicating with patients who cannot communicate for whatever cause, brain damaage, stroke, paralysis, or other neurological conditions like autism. The basic idea is that a “facilitator” holds the patient’s hand over a keyboard or a board with pictures or letters and guides the patient’s hand to them in order to “facilitate” communication. The claim is that such patients can somehow signal their intent in response to questions by moving towards a letter or a picture and that the facilitator can understand and interpret what can sometimes be small motions towards letters or pictures, even to the point of reciting poems or writing long and eloquent articles. In reality, FC is nothing more than the ideomotor effect writ large, in which a “facilitator” is in reality doing the communicating, not the patient, as I described in my two previous posts on this case. Just look at the videos I included in each post if you don’t believe me. As we shall see shortly, the story was just too good to be true.

To recap, Rom Houben had been previously thought to be in a persistent vegetative state and thus not conscious and not able to communicate in any way. Then in November Houben’s doctor, Dr. Steven Laureys, announced to the press as part of interviews after a press release for a new study of his that Houben is in fact conscious, having been misdiagnosed 23 years ago and the misdiagnosis not having been discovered until now. The study itself involved using newer diagnostic tests to reevaluate patients diagnosed as being in a persistent vegetative state, and Laureys concluded that over 40% thought to be in such a state actually have some level of consciousness. In and of itself, that is an important observation. Unfortunately, Dr. Laureys chose to use Rom Houbens as an example of one of these patients, and that’s where the trouble came in. As part of the evidence that Houbens is conscious, Laureys included the facilitated communication, which had become quite spectacular, with Wouters attributing all sorts of heartrending observations to him, statements such as describing the discovery that he was conscious as his “second birth.” When asked how he survived 23 years in such a state, he replied through his facilitator, “I meditated, I dreamed that I was somewhere else.”

Through it all, Dr. Laureys stubbornly clung to his belief and story that Mr. Houbens really was communicating through minute motions of his fingertip, one of the only motions that Mr. Houbens could make, and that Houben’s tiny movements of his finger were being “translated” by Ms. Wouters into pointing and typing on a keyboard. Unfortunately, as I and others pointed out before, in many of the videos there were times when Houbens was typing when his eyes were clearly closed or he wasn’t even looking anywhere near the vicinity of the keyboard, making it very difficult to imagine how he could see the letters to point at them but easy to imagine how Wouters could have been guiding his finger to each letter. Even more difficult to believe, Houben’s finger flew between keys as fast as some of the best hunt and peck typists I’ve seen. It was thus very tough to believe how Houbens, with all the neurologic damage he suffered and his new diagnosis of locked-in syndrome, could possibly manage to twitch his finger that quickly and accurately. In most cases of communication with the locked in or near locked in, communication is painstakingly slow; for example, Jean-Dominique Bauby. When all this was pointed out to Dr. Laureys and he was questioned about whether some sort of blinded test had been done in order to exclude the possibility that Wouters was guiding Houben’s hand, he haughtily dismissed such concerns, asking us in essence to trust that he, as a “scientist and a skeptic,” had convinced himself that Houbens was communicating, the implication being that you should too. We now know that Laureys apparently did a simple test but didn’t do any real controls that would have ruled out the the facilitator as the person who was really doing the communicating.

Now he has done those tests. This is a good thing for which Dr. Laureys should be congratulated, even as I chastise him for having been so easily duped and having clung so stubbornly to his view. Still, better late than never. According to this article in Der Spiegel (German version, English version), the whole thing was exactly as the skeptics thought it was:

The staff at Houben’s care center first tried an on-screen keyboard that he could operate using his right index finger, which is not fully paralyzed. For a while, it seemed like a good idea and, after some practice, Houben was able to type rather quickly. He made many mistakes, but his messages were understandable. Still, using that method required the assistance of a speech therapist, who stood behind him to support his hand.

At one point, Laureys, the neurologist, claimed that he had ruled out the possibility that it was actually the speech therapist doing the writing. But it turns out that his checks weren’t quite thorough enough. Obtaining reliable results requires a rather protracted procedure. Patients with serious traumatic brain injuries are not always capable of following difficult instructions. They also sleep a great deal, and sometimes they sink into extended periods of delirium. In order to rule out false negative results, repeated tests need to be conducted over the course of several weeks.

Laureys has now carried out those tests, and his results hold that it wasn’t Houben doing the writing after all. The tests determined that he doesn’t have enough strength and muscle control in his right arm to operate the keyboard. In her effort to help the patient express himself, it would seem that the speech therapist had unwittingly assumed control. This kind of self-deception happens all the time when this method — known as “facilitated communication” — is used. (As a result, the things that Houben was attributed as saying to SPIEGEL for an article printed in November 2009 were also not authentic.)

In the more recent test, Houben was shown or told a series of 15 objects and words, without a speech therapist being present. Afterward, he was supposed to type the correct word — but he didn’t succeed a single time.

None of this should come as any surprise. It was only Laureys naivete and arrogance that could have led him to react to criticism the way he did. I can understand how he was probably miffed that the whole issue of FC had overshadowed the findings of his study, which actually did report important findings, but he has no one to blame but himself. When people familiar with FC and how belief that FC has opened up communication with people formerly thought unreachable tried to warn him, he dismissed such concerns, apparently thinking himself too scientific and too skeptical to be so easily fooled. Clearly, Dr. Laureys forgot the first principle of science so well enunciated by Richard Feynman:

The first principle is that you must not fool yourself – and you are the easiest person to fool.

Dr. Laureys epitomizes this observation. At least he finally came around–mostly–which is the difference between a scientist and a crank.

Perhaps the most disturbing part of this whole story is that it is still possible that Houbens may be conscious. If he is, in fact, conscious, then his facilitator stole from him his voice, speaking for him and manipulating him like a puppet to say what she thought he must be feeling. That she was probably unaware that that is what she was doing and completely believed that she was helping him to communicate does not excuse this. Imagine, if you will, that you are Rom Houben. Imagine further that you are conscious but have no motor control over your body other than (apparently) the tip of one finger. Finally, imagine that some fool credulous woman has come to believe that she can translate your intentions and thoughts by moving our finger around a touch screen keypad. Not only has your voice been stolen, but the belief of your family and your doctor that FC has allowed you to communicate has guaranteed that the team taking care of you will stop looking for ways to communicate with you or, at the very least, not look very hard.

I can’t even begin to imagine how horrible that would be.

Fortunately, the search for a means of communicating with Houben has resumed:

Now the work with Houben will have to start all over again. But there is one thing for sure — images taken of his brain activity reveal that it is behaving only slightly differently from that of a healthy brain. As a result, researchers are fairly certain that Houben is conscious — and they find themselves in the desperate position of a rescue team trying to dig out a person from under the rubble.

Attempts to use a pedal, which Houben pressed with his right foot, had already failed before. He actually was able to press the pedal down, but spasms usually made him unable to lift his foot back up. “We’ll simply have to find another way to him,” Laureys says.

Let’s all hope that if Houben is really conscious Laureys succeeds now that he has realized that he had been duped. I’m glad that Laureys is finally looking for other ways to communicate with Houben, but irritated that his intransigence and naivete delayed the search at least three months, if not many more. Rom Houben payed the price. The rubble on top of him, to follow the analogy used in the article, is much higher than it needed to be because Laureys inintentionally piled more rocks on while trying to dig him out. Fortunately, he has realized the error of his ways, at least in Houben’s case, and is trying to rectify the situation. Also, it should not be forgotten that his other work trying to find ways to communicate with victims of severe neurological damage or conditions that render them unable to communicate is very important.

Finally, now that it’s been clearly shown that Houben was not communicating through FC, that leaves just two final questions. First, what will happen to Linda Wouters, the speech therapist and believer in FC who led Houben’s family and medical team so far astray through her use of bogus FC to convince them that Houben was communicating with them? Second, now that Dr. Laureys has admitted that it was not really Houben communicating through FC but rather Wouters, will the press lavish as much attention on this story as it did in November on the original reports of the “miraculous” results FC had allegedly produced in allowing Houben to communicate? Thus far, all we see is a single report in a German publication. Will we soon see followup stories on the international news organizations that publicizd the original story in November?

I’m not going to hold my breath waiting.

Comments

  1. #1 Travis
    February 15, 2010

    I am glad they have apparently come to this conclusion and are looking for new avenues to help this man communicate. How sad it would have been to find that he is indeed conscious only to keep him trapped by accepting and stopping at a method of communication that is so useless. And if he was aware that this was happening and powerless to stop it it would be an even greater tragedy.

  2. #2 MaikUniversum
    February 15, 2010

    thank god, I mean.. thank science actually, that this whole crap with FC is over.. For now, at least. I wish him (Laureys) luck now. Maybe he will succeed. I do hope.

  3. #3 Alan Kellogg
    February 15, 2010

    Laureys demonstrates how most anybody can fall prey to the temptation of ego and pride. One psychiatrist kept expounding the idea that autism is due to callous, uncaring parents, so thousands suffered because of it. Today there are those convinced they can’t be wrong about the sasquatch, and so years of valuable research have been wasted.

    A good scientist knows he might be wrong. A bad scientists insists he can’t. Add in the glow one gets from lauds and praise, and being able to admit to error can become the next thing to impossible. Dr. Laureys has wasted our time, wasted limited resources, and disappointed people around the world with relatives and loved ones in persistent vegetative states. He has provided false hope, and provided false advice; which makes him a false counselor. He can either correct his errors, or become part of the woo brigade. That is what it comes down to.

  4. #4 ZenMonkey
    February 15, 2010

    There was so much press and chatter about this when it happened. I wonder if this “new” truth about the case will garner as much attention. I’m not laying odds on it.

  5. #5 Bill
    February 15, 2010

    Laureys’ diagnosis of minimally conscious was based on the Houben being able to press the foot pedal to give “yes/no” answers.

    If all Houben can do is press on the pedal when he hears a voice (but not release it), that sounds more like a muscle spasm than a valid clinical response.

    Which calls into question Laureys’ conclusion of minimally conscious.

    Especially since Laureys himself has a pre-existing bias to find patients previously diagnosed as PVS are not PVS.

    At this point, given the history of the case, I’d have to see Houben evaluated by an independent neurologist before believing Houben was not PVS.

  6. #6 paranoid android
    February 15, 2010

    I recently learned that a famous book “written” by an autistic German man was actually written via FC with the help of his mother. I guess the mother’s intentions were good, but knowing how FC really works makes the whole story very creepy and sad.

  7. #7 Breton
    February 15, 2010

    Hi
    The article alludes to another patient who was able to answer all questions correctly through a facilitator.

    ‘This doesn’t necessarily discredit facilitated communication altogether. Laureys analyzed another paralyzed test subject who answered all 15 control questions correctly despite having a comparable brain-damage diagnosis. “That means it is really necessary to verify every single case,” Laureys says.’

    Any comments? The article doesnt really expand on it any further. Does this mean that FC is still being used with other patients despite appearing bogus?

  8. #8 llewelly
    February 15, 2010

    It’s good news to hear that Dr. Laureys has realized FC was not working.
    Hopefully this will serve as a lesson for others who might otherwise be fooled by FC.
    Thank you, Orac, for following this issue.

  9. #9 Becca
    February 15, 2010

    I’ve stayed away from this one for a bit but I think now might be a good time to join in.

    There are loads of reasons why a person does not communicate verbally and the majority of the time it is because the person in question is not capable of using language. This would include profoundly intellectually impaired people, which covers a good few brain injured adults as well as, say, people with end-stage Alzheimer’s or catastrophic congenital defects. Needless to say there is absolutely nothing that will magically give any of those people access to language – just ain’t gonna happen. Some might manage various other basic forms of communication, crying when distressed and such, but essentially they’re stuffed as far as using words to communicate goes.

    Then there are the others. People who do have the cognitive capacity to communicate in conventional language but who either a) are being hampered by a lack of skill or anxiety (eg a small number of autistic folk as well as deafblind kids who pretty much don’t know how yet) and – the majority – people who are so profoundly physically impaired – like Houben, possibly? – that current technology cannot assist them to communicate alone.

    The autistic kids might be taught to type or to use some other form of AAC. The deafblind ones will hopefully learn sign language, and maybe even to spell etc. eventually. There is a small body of evidence that using something somewhat FC-like in the process of teaching an autistic youngster to access a communication aid can sometimes work. When it’s successful they will hopefully be an independent communicator.

    The rest – the people who don’t use language because they physically can’t – will mostly these days be sorted out by being taught to use a system like this and if they are fortunate enough to have the right resources may also end up communicating independently. There are just a very few people though, like Houben by the sound of it, for whom technology doesn’t (yet) hold a solution. I know one such a person, with cerebral palsy so severe that she’s essentially paralysed by her spasticity. But if you sit to her right, reach across and hold her left hand with yours, tease her right index finger out of its fist and support that hand just so, then just enough force (tension?) counters her normally balanced spasm that you can feel her pushing – intentionally – with her right hand. Away from her body for no, pull in towards the chest for yes. Let go, and she’s back in a sort of spastic equilibrium, each attempt at movement countered. It’s only with the assistance of another person – actually quite a *lot* of other people as she’s understandably happy to enable any friend or colleague to use this yes/no system with her, or was in the days when we were close – that she can communicate at all. Further, with somebody skilled in facilitating her communication (not me, I could never get the hang o

  10. #10 Becca
    February 15, 2010

    I’ve stayed away from this one for a bit but I think now might be a good time to join in.

    There are loads of reasons why a person does not communicate verbally and the majority of the time it is because the person in question is not capable of using language. This would include profoundly intellectually impaired people, which covers a good few brain injured adults as well as, say, people with end-stage Alzheimer’s or catastrophic congenital defects. Needless to say there is absolutely nothing that will magically give any of those people access to language – just ain’t gonna happen. Some might manage various other basic forms of communication, crying when distressed and such, but essentially they’re stuffed as far as using words to communicate goes.

    Then there are the others. People who do have the cognitive capacity to communicate in conventional language but who either a) are being hampered by a lack of skill or anxiety (eg a small number of autistic folk as well as deafblind kids who pretty much don’t know how yet) and – the majority – people who are so profoundly physically impaired – like Houben, possibly? – that current technology cannot assist them to communicate alone.

    The autistic kids might be taught to type or to use some other form of AAC. The deafblind ones will hopefully learn sign language, and maybe even to spell etc. eventually. There is a small body of evidence that using something somewhat FC-like in the process of teaching an autistic youngster to access a communication aid can sometimes work. When it’s successful they will hopefully be an independent communicator.

    The rest – the people who don’t use language because they physically can’t – will mostly these days be sorted out by being taught to use a system like this and if they are fortunate enough to have the right resources may also end up communicating independently. There are just a very few people though, like Houben by the sound of it, for whom technology doesn’t (yet) hold a solution. I know one such a person from time I spent in a disabled children’s group years and years ago, with cerebral palsy so severe that she’s essentially paralysed by her spasticity. But if you sit to her right, reach across and hold her left hand with yours, tease her right index finger out of its fist and support that hand just so, then just enough force (tension?) counters her normally balanced spasm that you can feel her pushing – intentionally – with her right hand. Away from her body for no, pull in towards the chest for yes. Let go, and she’s back in a sort of spastic equilibrium, each attempt at movement countered. It’s only with the assistance of another person – actually quite a *lot* of other people as she’s understandably happy to enable any friend or colleague to use this yes/no system with her, or was in the days when we were close – that she can communicate at all. Further, with somebody skilled in facilitating her communication (not me, I could never get past the yes/no stage) she could spell with a letter chart. It wasn’t quick and can’t have been easy but having seen her style, spelling idiosyncracy and such remain consistent with three or four different facilitators and having learnt the basic method myself there’s no doubt for me that at least some times FC is not some elaborate human ouija board and can actually successfully be used.

    It’s been abused, is incredibly vulnerable to wishful thinking if not occasional downright manipulation and has been widely discredited by the misguided actions of a lot of naive and/or downright stupid people – but none of that, not the Houben case or the rest, proves categorically that it cannot work for some people in some very particular circumstances. Hopefully as technology gets closer and closer to enabling people like Houben or my friend to bypass their bodies altogether for communication, there will eventualy be nobody around who’s not better served by some other technology or method. For now, though, it seems pretty important to leave just enough space in skepticism about FC to at least keep it open as an option for helping profoundly disabled people to communicate and (critically) demonstrate that it works.

    Re Houben and the foot pedal: do X for yes and nothing for no isn’t a great setup but easy enough to establish beyond doubt whether or not the foot is being moved deliberately, but I can see that complicated by spasm it’s not a quick or easy way to communicate. Not being able to lift his foot from the switch afterwards wouldn’t change that.

  11. #11 Becca
    February 15, 2010

    Ack, must have hit the post button prematurely. Thought I’d caught it in time. Sorry folks, please disregard first attempt.

  12. #12 Bayesian Bouffant, FCD
    February 15, 2010

    ZenMonkey #4: There was so much press and chatter about this when it happened. I wonder if this “new” truth about the case will garner as much attention. I’m not laying odds on it.

    My thoughts exactly. A quick search of a news site doesn’t pull up very much. Yet.

  13. #13 bsci
    February 15, 2010

    Instead of getting too harsh on Steven Laureys, I think this is an awesome example of the differences between a scientist and a crank. Both can be stubbornly confident in their rightness even when wrong. A crank doubles down and ignores the details of the criticism. A scientist listens to the critics and does the studies necessary to prove that he’s right or wrong. It would have been nice if Laureys did the proper experiments the first time and was more open to being wrong from the beginning, but, in the end, he is a scientist and, for a blog that attacks pseudoscience, it’s vital to highlight examples that really show the differences.

  14. #14 Daniel J. Andrews
    February 15, 2010

    n reality, FC is nothing more than the ideomotor effect writ large, in which a “facilitator” is in reality doing the communicating, not the patient,

    I’m feeling less charitable towards the facilitator, Wouters. Dowsing is an example of the ideomotor effect. Writing whole sentences is an example of conscious deception. In Rom’s family’s situation, I considered taking her to court.

    Thanks for the post, Orac. We discussed this case in my class last semester, and I can give them an update now.

  15. #15 Calli Arcale
    February 15, 2010

    It was disappointing how Laureys responded at first, but give the man credit — he recognized that there were significant doubters, and obviously though he was initially offended (a very human response), he set aside his pride enough to actually put this case to the test. And when the science showed him that FC was not really doing a thing for Houben, he accepted the results. Considering how vocal he was in support of FC at first, I think he deserves a lot of credit for setting aside his pride and doing the science. Yes, he should’ve done the science at the outset, but how many people are able to go so public with their responses to FC skeptics and *still* be objective enough to go ahead with the science and accept the results? Most people, having invested that much pride in the case, would not be able to change their minds and would plunge straight down the rabbit hole as a response.

    I am impressed at Laureys for being able to publicly admit that he was wrong. It’s not as easy a thing as it seems. I think it is very clear that he genuinely wants what is best for his patients. He’s probably upset with himself over this, but rather than cope by going into denial, he’s doing the right thing.

  16. #16 TomS
    February 15, 2010

    I’m not clear as to the details.

    Does anyone do a test in which the knowledge of the facilitator is different from the knowledge of the patient?

  17. #17 MikeMa
    February 15, 2010

    Would it be reasonable to propose a standard battery of tests to validate FC? This would have the benefit of providing researchers with a bar high enough to clear most skepticism. I do not believe it to be worth the trouble but on this thread I see 2 ideas presented for providing such a battery of tests.

    First, there seems some hope that this process can yield results if done well and honestly. Second, there seems to be a lot of gnashing of teeth about the relative press given to promoting FC as a tool and then recanting it’s value in this case after belatedly being proven ineffective.

    The original thread had quite a number of ideas or such a test suite. I suspect Laureys might sign on with some enthusiasm at this point.

  18. #18 qetzal
    February 15, 2010

    Re #7, it makes sense to me that there could be patients for whom FC would actually work, IF the facilitator could be trusted to ‘interpret’ honestly. In order for that to work, however, the patient would obviously need to have at least some way to signal yes or no.

    If a patient could do that well enough for a facilitator to accurately determine the patient’s intent, surely it could be done mechanically/electronically as well. For example, put the patient’s finger on a touch pad that can sense small twitches or pressure increases. Instead of a facilitator guiding the patient’s finger over a keyboard, let the letters scroll past his finger on the pad.

    Obviously, there could be problems with uncontrollable finger twitches, for example. But if an honest facilitator could accurately determine the patient’s intent, surely a computer-based system could do the same. That would eliminate facilitator bias. (And I expect that even a facilitator who was trying to be scrupulously honest would have a hard time avoiding bias.)

  19. #19 DLC
    February 15, 2010

    Dr. Laureys at least had the good sense to check again, and to know when he was wrong, and even to admit it.
    I feel for Mr Houben’s family. to have their hopes built up and then dashed like this must really hurt.
    I hope that they are able to do something for Mr. Houben, if only because I can empathize with his situation and that of his family.

  20. #20 Bronze Dog
    February 15, 2010

    Does anyone do a test in which the knowledge of the facilitator is different from the knowledge of the patient?

    IIRC, in one of Orac’s previous posts on the topic (or in the comments) there was a test done where they put a barrier between the two, only allowing an arm through, and show both sides an image. Sometimes the patient would get a different image from the “facilitator” and the result was always what the “facilitator” saw, never what was shown to the patient.

  21. #21 superdave
    February 15, 2010

    @Becca, it is theoretically possible for FC to work, but even if it could work, there is almost certainly technology available to do the same job or better anyway.

    Also in some blatant self promotion, check out my guest post on kwombles blog
    http://counteringageofautism.blogspot.com/2010/02/guest-post-animal-models-and-autism-by.html

  22. #23 RobNYNY1957
    February 15, 2010

    FAcILitatED COmmuNication.

  23. #24 RobNYNY1957
    February 15, 2010

    Properly capitalized: FAcILitatED COmmuNication.

  24. #25 Anwer Kamal Pasha
    February 15, 2010

    I found comments here more useful and interesting. I am always surprised that why the very simple problem of the PVS or MCS patients is being misunderstood since decades. Their consciousness is always discussed which is not known but their actual problem which is disability is not discussed. Many of these patients may be conscious but unable to communicate due to loss of motor function.At the time when I am writing these lines, my PVS son is lying on bed beside me and I just discussed (May you can say told) him which I read here and he replied me with face impressions and smiles. Not only my son Jawad Pasha but another here is also at same stage and now we are looking for some way of regaining of the motor function. In another case a physiotherapist here is trying recovery of a Locked in Syndrome through some early and aggressive rehab.You can read more at
    Pakistan a brain injury Persistent vegetative state patients Jawad Pasha

  25. #26 Christi Johnson
    February 16, 2010

    if i were ever in that state of mind, i’d want the plug pulled

  26. #27 J Dubb
    February 16, 2010

    FC is alive and thriving, 20 years after the Frontline episode that so clearly showed that FC is bogus. You can go to Syracuse and get trained to be a facilitator. Dr. Doug Biklen, the guy who pushed FC, basically gloats about the fact that he’s still in business even though a simple double-blind test shows that it’s the helper that’s talking, not the disabled person.

    Sigh.

  27. #28 Aftercancer
    February 17, 2010

    It continues to amaze me that things like FC are still in place. As an undergraduate, more years ago than I like to count, I wrote a paper about FC and Biklen and how it was at best wishful thinking and at worst a scam. Yet it continues.

    There are certainly some individuals who can benefit from assistance in communication but the majority of people who it is tried with it is just a last ditch effort.

  28. #29 Mandy
    May 21, 2010

    Rom Houben was misdiagnosed as being in a vegetative state after a car crash left him totally paralysed … His misdiagnosis was discovered by neurological expert Dr Steven Laureys, who fears there may be similar cases all over the world.

  29. #30 Chris
    May 21, 2010

    Mandy, did you even read the article above?

  30. #31 Julie
    May 22, 2010

    I am so astonished to see that FC are still in place. Rom Houben was surely misdiagnosed. But it’s good news to hear that Dr. Laureys has realized FC was not working. Thank you for sharing this with us.

  31. #32 Mary
    May 22, 2010

    I wish Laureys best of luck may be he will now be successful and thank God they finally realized to get a new FC and also a new man communicate.

  32. #33 Katie
    May 27, 2010

    There is a small body of evidence that using something somewhat FC-like in the process of teaching an autistic youngster to access a communication aid can sometimes work.

  33. #34 Todd W.
    May 27, 2010

    @Katie

    Are you referring to PECS? That can only really be used if a) the individual is able to point without someone “helping” them and b) the individual is able to correctly label the items, actions or concepts depicted in the aid.

    It’s not quite like FC.

  34. #35 Jackie
    May 30, 2010

    The autistic kids might be taught to type or to use some other form of AAC. The deafblind ones will hopefully learn sign language, and maybe even to spell etc. eventually. There is a small body of evidence that using something somewhat FC-like in the process of teaching an autistic youngster to access a communication aid can sometimes work. When it’s successful they will hopefully be an independent communicator.

  35. #36 Kerry
    June 1, 2010

    I am in shock that this is still an ongoing “treatment” regime. After FC’s spectacular failure with autistic children it seemed that it had no where to go but oblivion.

  36. #37 Monica
    June 4, 2010

    Historically those doing the FC won’t tolerate any attempts to do blind testing, or submit to any other controls.

  37. #38 Heather
    June 10, 2010

    I am always surprised that why the very simple problem of the PVS or MCS patients is being misunderstood since decades. Their consciousness is always discussed which is not known but their actual problem which is disability is not discussed.

  38. #39 Rebecca
    June 12, 2010

    What a fantastic story. I have followed your story from another article you have written till here about on update on the case of coma man rom hoube.

  39. #40 Sierra
    June 21, 2010

    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.

  40. #41 Chance Gearheart, NREMT-P/EMD
    June 21, 2010

    What’s with the deluge of Spambots recently?

  41. #42 Carrie
    June 25, 2010

    What a fantastic story. I have followed your story from another article you have written,thanx for the article.

  42. #43 Erica
    July 22, 2010

    I just hope that the original story will be revealed to us. FC is just a crap that just misled people to the real one. I just hope that this case will be solve later this year.

  43. #44 Christine
    July 29, 2010

    Well, There are just a very few people though, like Houben by the sound of it, for whom technology doesn’t (yet) hold a solution.

  44. #45 Sandy
    August 19, 2010

    Well, I am always surprised that why the very simple problem of the PVS or MCS patients is being misunderstood since decades.

  45. #46 llffllyy
    August 30, 2010

    thanks for your help

  46. #47 Becky
    September 21, 2010

    There are certainly some individuals who can benefit from assistance in communication but the majority of people who it is tried with it is just a last ditch effort.

  47. #48 David N. Andrews M. Ed., C. P. S. E.
    September 21, 2010

    Might be worth pointing out that the FCI is now the Institute on Communication and Inclusion, according to the Syracuse University web-pages.

    The also refer to FC these days as Supported Typing. It seems that the term ‘facilitated communication’ is a millstone round his neck.

    the shittiest withdrawal attempt ever by those toss-pots at Syracuse

  48. #49 The Cleansing Authority
    October 15, 2010

    what tactics do they use to communicate with patients who cant communicate through speech and other ways.

  49. #50 Kristi
    November 2, 2010

    I’m hoping they can find some way to communicate with him.

  50. #51 INK
    November 5, 2010

    Just another charlatan. I feel for the family having to have this added to an already sad situation

  51. #52 Bmw GT1
    November 8, 2010

    Girls always look on themselves as proud princesses, with the exception of a small number of either extremely ugly or exceedingly smart ones.

  52. #53 Sandra Hopkins
    January 11, 2011

    At least right now everything has been cleared out. Rob’s family must be devastated finding out the real story, but that’s what should be, again at least it’s now clear that FC did not really work on Rob.

  53. #54 Allison Clark
    March 12, 2011

    Facilitated Communication is a good way to communicate with patients that cannot verbally converse any more, read about the controversy as well with what happen to Rom Houben, in any way, may be good or not, we could still try to be open in using this method, it wouldn’t be widely accepted if its not proven though.

  54. #55 Todd W.
    March 12, 2011

    @Allison Clark

    But it wasn’t proven. Lots of people were taking in by it, including those practicing it. It’s very easy to be fooled. You may want to watch the Frontline episode “Prisoners of Silence“. FC uses what is known as the idiomotor effect. In short, the facilitator is the one doing the communicating, not the patient.

  55. #56 Forbidden Snowflake
    March 12, 2011

    Thanks for the link, Todd. That is an excellent documentary.

  56. #57 Chalean Extreme Work
    March 29, 2011

    I can’t even begin to imagine how horrible that would be.

  57. #58 David N. Andrews M. Ed., C. P. S. E.
    March 29, 2011

    @Allison Clark: “Facilitated Communication is a good way to communicate with patients that cannot verbally converse any more, read about the controversy as well with what happen to Rom Houben, in any way, may be good or not, we could still try to be open in using this method, it wouldn’t be widely accepted if its not proven though.”

    No, it is not. It is absolute and utter bollocks. My ex-wife and I have read up a great deal on this subject. The science – regardless of whether people like it or not – is definitely in on this one, and the science says the following:

    “Facilitated Communication is bollocks, and anyone claiming that it isn’t is talking bollocks!”

    In addition to what Todd W has identified as the ideo-motor effect, there is also a phenomenon involved by the name of ironic processes. The person to read on this issue is Daniel Wegner, who has written on this phenomenon with especial reference to Facilitated Communication.

    Is it really only coincidence that Facilitated Communication and ‘fucking crap’ have the same initials?

  58. #59 Beats By Dre
    April 19, 2011

    No, it is not. It is absolute and utter bollocks. My ex-wife and I have read up a great deal on this subject. The science – regardless of whether people like it or not – is definitely in on this one, and the science says the following:
    “Facilitated Communication is bollocks, and anyone claiming that it isn’t is talking bollocks!”

  59. #60 Appendix Operation
    June 20, 2011

    This is a good thing for which Dr. Laureys should be congratulated, even as I chastise him for having been so easily duped and having clung so stubbornly to his view.

  60. #61 Appendix Operation
    June 20, 2011

    This is a good thing for which Dr. Laureys should be congratulated, even as I chastise him for having been so easily duped and having clung so stubbornly to his view.

  61. #62 David N. Andrews M. Ed., C. P. S. E.
    June 20, 2011

    Attack of the Tosspot Zombie-bots goes on… *sigh*

  62. #63 Brian McKenzie
    October 13, 2011

    Never heard of facilitated communication, well in this context at least, until I read this article. Very interesting.

  63. #64 James Thompson
    October 18, 2011

    As far as admitting that their concepts could be flawed it is pride that gets in the way of progress. Makes you wonder how far we can go if we put down one of the deadly sins and search for the truth.

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