Jan 13 2012

Facilitated Communication – Again – in the HuffPo

Here we go again – facilitated communication (FC) rears its pseudoscientific head again, and (surprise) the HuffPo publishes a completely uncritical article about it.

Kathleen Miles discusses the case of Jacob Artson, a boy with autism who is non-verbal. The article is framed in the typical gullible pseudo-journalistic style of – a brave family finds a “miracle” that allows them to communicate with their non-verbal son.¬† Miles describes the case in gushing terms, with only the barest reference to those nasty “skeptics” who are skeptical of such claims (and she completely botches even her short reference to the controversy, which is actually not even a controversy.)

Before I discuss the case of Jacob further, here is a quick background on FC. In the late 1980s and into the 1990 FC was proposed and rapidly incorporated as a technique for communicating to clients who were not able to communicate on their own, for a variety of reasons. The technique is simple – a facilitator “supports” the arm of the client allowing them to type on a keyboard or point to letters in order to spell out words.

The idea behind FC is that many children and even adults suffer from neurological disorders that are mostly, or even entirely, a matter of motor control, and not cognitive ability. These children may be non-verbal and unable to communicate, but there is actually an eloquent and intelligent person in there, they simply lack the motor skills to speak or otherwise communicate. By facilitating their motor control, practitioners can enable such people to communicate by typing.

This led to an explosion of use of FC and many apparent cases of children who were thought to be severely mentally handicapped, but were revealed by FC to be literate and intelligent, just “trapped” by their motor limitations.

It’s a great story. What parent of a mentally handicapped child would not want to believe that actually they are very bright, and finally be able to communicate with them? The only problem, of course, is that it’s all a cruel fiction.

Many experts immediately recognized the problems with this story and were appropriately skeptical. How can a child that, by every measure, has severe brain injury or limitations (beyond being non-verbal) suddenly not only be able to communicate, but to be able to read and write without having been directly taught, and further be eloquent, in some cases with apparent language skills beyond their age. It defied common sense.

Worse, in many cases it was apparent that the client of FC was not paying attention to the keyboard or letter board. It is impossible to one-finger type without looking at the keyboard (or without feeling where your hand is on the keyboard) but that is what many FC clients appeared to be doing.

It was suspected that perhaps the facilitators were unconsciously doing the communicating. This can be explained very easily with the ideomotor effect – subconscious motor movements that can be caused simply by expectation.

This was easy enough to test just by putting simple controls into place. When properly blinded facilitators are unable to communicate information available only to the client. A 2001 review of properly performed studies concluded:

Previous reviews of Facilitated Communication (FC) studies have clearly established that proponents’ claims are largely unsubstantiated and that using FC as an intervention for communicatively impaired or noncommunicative individuals is not recommended. However, while FC is less prominent than in the recent past, investigations of the technique’s efficacy continue. This review examines published FC studies since the previous major reviews by Jacobson, Mulick, and Schwartz (1995) and Simpson and Myles (1995a). Findings support the conclusions of previous reviews.

Scientifically, there is no controversy here. The claims of FC were always highly implausible and problematic, and the research has overwhelmingly shown that it is an illusion. It is a particularly cruel illusion – to patients, their families, and also practitioners who mean well and were as deceived by the ideomotor effect as their clients.

But there is no longer any reasonable sympathy to be had for practitioners of FC. The information is out there. The ethical responsibilities of due diligence and to first do no harm precludes the use of a dubious technique such as FC.

FC has died as a mainstream practice, but like all such practices it remains on the fringe. I am now seeing what appears to be a new generation of FC proponents, as awareness of FC has waned. Younger health care providers are not as aware of the FC story and so are not as immediately critical of it as they should be. The allure of FC is probably just too compelling for it to quietly go away, and every generation will likely have to debunk it anew.

Journalists like Kathleen Miles do not help the situation. She has also failed to do her due diligence as a reporter, and completely botched the story (and this is giving her the benefit of the doubt that she did not knowingly downplay the science for a good story).

I have no personal knowledge of the Jacob Artson case, beyond what is in the public domain on the internet. But all the typical signs of bogus FC are there. About Jacob Miles writes:

Perhaps what is most remarkable about Jacob’s ability to express himself through typing is how eloquent, thoughtful and intelligent he is. He sent an email to HuffPost explaining what it was like for him before he could communicate. “Before I was introduced to typing, I had retreated into anxiety, fear and despair. I read everything around me from books to TV credits to the newspaper on the kitchen table but I had no one to share my ideas with so I just retreated into my own imaginary world. I wasn’t suicidal because I have an incredibly supportive family, but I was constantly frustrated at my limitations.”

Yes – it is remarkable – so much so that it is cause for serious skepticism. It is simply unbelievable that a non-verbal child would not only have taught themselves to read and write but would be eloquent beyond their years. It also does not fit our cumulative knowledge about autism, which is not strictly a motor disorder but a diffuse disorder of brain organization and function.

The content is also suspiciously similar to other cases (like the Ron Hoben case) in which the FC was shown to be fake – a naive imagining of what someone who is trapped in a non-verbal body might be experiencing.

I could not find any videos of Jacob online, but in the Miles article there is a series of photos. Take a look through them, you will see several photos in which Jacob is apparently using FC to communicate. You will notice that in most of them Jacob is not looking at the keyboard, while the facilitator is. These are random stills, so this is not definitive, but it is also probably not a coincidence. If these stills are a representative sample, then the facilitator is spending more time looking at the keyboard than Jacob, because they are the one who is doing the communication.

Given the history of FC and the state of the research, the burden of proof is clearly on those claiming for a legitimate individual case of FC. There is real harm in not doing so. In cases of dubious FC the family is given false hope, and put through a deception that distracts them from dealing with the reality of their situation. There has been FC testimony accepted in the courtroom – people are in prison, or at least were put through a traumatic and lengthy trial, due to the “spectral” evidence given under FC (often involving accusations of abuse or rape).

And school systems have been forced to waste classroom time and resources interacting with students entirely through FC, which means not interacting with the student but with their self-deceived facilitator. This is apparently the case with Jacob as well.

Conclusion

While it is now on the fringe, FC is likely not going to disappear entirely anytime soon. This means that skeptics and scientists will have to occasionally remind the public that FC is fake, nothing but the ideomotor effect and wishful thinking.

This, off course, puts the scientific position in the negative role of pulling the carpet out from under those families who feel they are finally communicating with an impaired loved-one. That carpet should never have been put there in the first place – doing so, in my opinion, is malpractice and incompetence, given the state of the evidence and plausibility.

The same is true of journalists who promote pseudoscientific nonsense without doing even a minimal investigation that would reveal FC to be the harmful fraud that it is.

 

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17 responses so far

17 Responses to “Facilitated Communication – Again – in the HuffPo”

  1. Kawarthajonon 13 Jan 2012 at 2:25 pm

    How do the proponents of FC propose that these children learn how to read and write so eloquently when they have not even learned to read or even use the alphabet? Osmosis? Magic? Quantum jumping? Miracles? I can understand a parent’s desire to buy into this idea because they want their child to be able to communicate effectively with the outside world. It is an emotional issue and parents are more likely to turn to woo for simple answers to difficult issues. It is the practitioners who should be prosecuted for promoting fraud in order to make money off of these parents.

  2. BillyJoe7on 13 Jan 2012 at 3:59 pm

    How it started…

    FC originated in my home state of Melbourne, Australia in the late 70s. I remember the controversy well and had some connection to the people involved. A nurse, by the name of Rosemary Crossley, working with disabled children decided that she could communicate with some of these children by supporting their arms over a key board. She ended up adopting one of them and wrote a book about their experiences called “Annie’s Coming Out”, Annie being the disabled child. The book was made into a movie which won lots of local awards, and Rosemary, herself, was awarded the Order of Australia at some point. Some initial support was given by Annie’s Paedatrician, Peter Graves, but he seemed to dissociate himself from it over time. She seems to be a well meaning, if misguided, indvidual ans she continues to support FC.

  3. Kobraon 13 Jan 2012 at 8:02 pm

    Never heard of FC until now. Who’s on the forefront of educating the families that this is just wishful thinking on their part? or ‘pulling the rug from under this community?’

    On a side note, I’d been watching Community for some time now and came across this gem of dark humor.

    http://www.youtube.com/watch?v=5nRzh4CJTZs

  4. nalon 13 Jan 2012 at 8:35 pm

    Here is the Frontline episode on FC: Prisoners of Silence.

  5. BillyJoe7on 13 Jan 2012 at 9:11 pm

    Kobra, you have a strange sense of humour.
    At least this cartoon had its heart in the right place:

    http://www.gocomics.com/nonsequitur/2012/01/13

    ..and it was censored!
    Go figure.

  6. tmac57on 14 Jan 2012 at 11:40 am

    Chris Cuomo did a piece on 20/20 last week about an autistic girl who, through FC, supposedly accused her father of molesting her . It was a pretty good exposé of FC, for a mainstream media outlet. I was pleasantly surprised:

    http://abc.go.com/watch/2020/SH559026/VD55161867/2020-106-from-miracle-to-nightmare

  7. borealyson 14 Jan 2012 at 5:52 pm

    Of course, for people whose communication really is limited only by their motor impairments (of which there are plenty), there already is a real set of options. It’s called Augmentative and Alternative Communication (AAC), and includes everything from home-made picture books to sophisticated laser-guided eye-pointing devices. No need for a “facilitator” at all.

  8. Mlemaon 14 Jan 2012 at 7:07 pm

    Dr. Novella,
    what do you make of unfacilitated typing by a non-verbal autistic girl?

    http://www.youtube.com/watch?v=vNZVV4Ciccg&feature=youtu.be

  9. Mlemaon 14 Jan 2012 at 7:36 pm

    are they taking the camera off and actually having someone facilitating?

  10. BillyJoe7on 14 Jan 2012 at 9:38 pm

    Mlema,

    I cannot see where any cheating is going on.

    It is quite possible that this girl has only sensory and motor impairment, not intellectual impairment.
    It seems that, in the past, her lack of ability to communicate increased her behavioural and motor problems, which made her disability seem much worse than it actually is, and that these have improved with her new found ability to communicate via a keyboard.
    Notice also how she developed these skills over a period of time, not virtually overnight like the victims of FC. The content of her communications also seem to be age appropriate. And it must also have helped that she has, at all times, remained in the family home with attentive, concerned parents, and that she has a twin sister.
    So I think the scenario depicted in this video is at least plausible.

    I’m not Steven Novella though :)

  11. Mlemaon 14 Jan 2012 at 11:28 pm

    she was diagnosed with mental impairment. So it would seem possible that there are other children similarly “trapped”. Do away with FC, but definitely give the kid a computer and instruct/encourage/reward them to type.

  12. tmac57on 15 Jan 2012 at 11:23 am

    Mlema-There was a long thread about this on the JREF:

    http://forums.randi.org/showthread.php?t=107417

    This case is not so clear cut to me.I am somewhat skeptical.

  13. lizditzon 15 Jan 2012 at 1:12 pm

    In respect to this discussion, I would be much more interested in hearing from autistic adults who use augmentive and assistive devices such as Proloquo2go.com and who sometimes rely upon “facilitated communication” (note the lower case), than any ill-informed speculation by non-autistics, such as the discussion at JREF forum.

    I have invited several autistics to comment here. In the meantime, readers may wish to:

    Watch the Loving Lampposts segment on Sharisa Kochmeister.

    Read Amy Sequenzia’s article, Non-Speaking, Low Functioning. Ms. Sequenzia does not speak.

    The individuals who starred in Wretches and Jabberers may be victims (and I use that word deliberately) of Facilitated Communication, as Kim Wombles notes in her review.

    However, Wombles makes two important distinctions:

    I must remind readers that I am not talking about the routine hand-over–hand initial teaching we usually engage in with our children, where supports are gradually removed as the child masters the skill sets being worked on. In facilitated communication, there is no learning curve: communication is instantaneous and advanced and believed to be the communication of the disabled individual alone.

    Nor am I talking about individuals who type independently.

  14. Davdoodleson 15 Jan 2012 at 8:41 pm

    “For Jacob, facilitated communication means that someone needs to touch his elbows while he types on a computer or his iPad. “He says that if we don’t touch his elbow, he’s thinking about a Disney movie or people in his life,” Hanson said. “He has to turn off this other noise that’s going on in his head in order to type. Someone touching his elbow helps Jacob focus on what he wants to type.”"

    This is utterly convincing. I have seen the light.
    .

  15. eiskrystalon 16 Jan 2012 at 3:58 am

    I read everything around me from books to TV credits to the newspaper on the kitchen table but I had no one to share my ideas with so I just retreated into my own imaginary world.

    If he needs help to simply type, how on earth would he be picking up and reading books containg words like ‘anxiety’ and ‘despair’?

  16. Bronze Dogon 17 Jan 2012 at 1:33 pm

    I remember sharing a few high school classes with one disabled kid in a wheelchair, and I’m trying to remember some details about her interactions. She did have someone there to help her communicate since she was non-verbal and stiff in her movements. The problem is I’ve got some conflicting memories about her interactions. She had a plastic sheet ‘keyboard,’ and I do have some memories of her deliberately ‘typing’ on her own, as well as memories of her aide seeming to give answers for her without detectable input. I guess I can’t really determine the truth with my unreliable memory, but I wonder about her case when the topic of FC comes up.

  17. Captain Quirkon 19 Jan 2012 at 9:21 pm

    FC is incredibly frustrating. Especially since there are autistics who are more intellectually capable than others would think based on behavior/speech. While I’m rather high functioning overall, there are some subtests where I test in the bottom 1-10% even though on most tests of academic / intellectual aptitude I score in the top 3-1%. And even though I have very good verbal skills, there are plenty of times that sensory overload renders me speechless or having extreme difficulty planning basic tasks of daily living that are normally a breeze.

    The problem is when there is a “facilitator” taking a physical role with their arm. It confuses the issue in the public eye, too, where the average person probably isn’t familiar with the various types of AAC available, like pointing to pictures or letters, or typing independently, or using a computer where a program with eye tracking is the means to communicate, and there’s other legit stuff too. So even someone who knows enough to know FC doesn’t work, may misinterpret a legit communication method for being a scam because they’re inclined to think that someone behaving in odd ways like autistic people frequently do can’t really communicate.

    I can certainly believe a non-speaking autistic person could learn to read by themselves, even advanced words provided they had a place to learn them from, but typing or whatever method is used wouldn’t happen suddenly, and out of those capable of learning to read or type, most would need a good deal of assistance beyond simply being read to and seeing words around the house, since that is the case for most children without disabilities. Considering that autism typically involves a great deal of language difficulties, especially in the non-verbal population, I would think that even highly intelligent autistic people would learn to read independently with such little assistance at a lower rate than comparably intelligent non-autistic people.

    Especially when there’s a keyboard involved – even an intelligent, neurotypical adult who can read and write at a college level (if they’d never been around keyboards much) would need time to study, practice, and learn where the keys are. And someone typing one finger at a time, without looking at the screen, would need an excellent memory of the keyboard layout, and particularly that specific keyboard – to be able to determine the distances between various keys without looking would require extreme precision of movement beyond memorizing the layout, and I doubt that holding someone’s elbow would take them from unable to type independently to having that degree of motor precision.

    That’s without even getting into all the research that demonstrates the “assisted” person is unable to correctly identify a given object if the “facilitator” is unable to see it, even when they were able to identify correctly when the facillitators could see. I can’t think of a more clear-cut demonstration that it isn’t the disabled person isn’t the one communicating. Now, while it doesn’t make sense on an intuitive level and the research shows it doesn’t work, there could turn out to be a situation where it actually works, probably involving some kind of specific physical problem that isn’t inherent to autism. If that is the case, rigorous testing (I believe there is an offer to test from Randi) would bear it out, and scientists could study the mechanism and so forth.

    But unless a particular case is rigorously verified (no soft-tests that seem to settle the matter but are highly vulnerable to biases affecting results; this is the reason we came up with double-blind testing), it is completely unethical to take or continue the part of a facilitator, and if I were currently a facilitator just stumbling onto the research, I would go and test whether it was working that time or stop, since there hasn’t been a single case yet. When the evidence is weighed so clearly on one side, the odds are overwhelmingly in favor of the conclusion that a facilitator is falsely speaking for the disabled individual, which is a grave insult to their dignity as a human being. Disabilities don’t demean humans; it’s this sort of chicanery that demeans humans.

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