Nov 08 2012

Facilitated Communication Persists Despite Scientific Criticism

Facilitated Communication (FC) is a technique for allegedly aiding those with communication impairment, such as some people with autism, to communicate through typing or pointing at a letter board. The idea is that some children have greater cognitive ability than is apparent through their verbal skills, but they lack the motor skills to type or write. The facilitator in FC is trained to hold and support their client’s hand, to help stabilize it, so that they can type out their thoughts.

FC was enthusiastically embraced by the special education community in the late 1980s and early 1990s but problems quickly emerged, namely the question of authorship – who is doing the communicating, the client or the facilitator?

The scientific evidence came down clearly on one side of that debate – it is the facilitator who is the author of the communication, not the client. The American Psychological Association has reviewed the available evidence and produced a position statement that concludes:

The short version of this long story is that study after study showed that facilitated communication didn’t really work. Apparently, the positive results that had generated so much enthusiasm were the results of a subtle process in which well-intended facilitators were answering questions themselves – without any awareness that they were doing so.

A 2001 review by Mostert came to the same conclusion – that the evidence supports the conclusion that the facilitators are the authors of communication in FC. He also points out that there is a relationship between the rigor of the studies and the results. The most rigorously blinded studies are all negative, studies with some blinding but also with problems are mixed and often show some positive results, and unblinded studies are all positive, showing dramatic effects. This pattern mirrors that of ESP and many other pseudosciences that are primarily the result of self deception.

In response to the negative studies, dedicated proponents changed the way they do research, it seems in order to manufacture the positive results they want. They shifted from quantitative research (where outcomes are objective and procedures can be blinded) to qualitative research, which is ripe for deception. For example, the Institute for Communication and Inclusion, a pro-FC organization, lists supporting research that cherry picks qualitative studies and other apparently positive studies. Such studies involve analyzing the writing style of the FC client to show that it is consistent, even with different facilitators, or tracking the eye movements of the client while being facilitated.

The strategy here is obvious – studies that directly and objectively confront the key question, who is authoring the writing in FC, gave an answer proponents did not like. They therefore shifted to indirect inference which is more amenable to judgement and qualitative analysis so that the desired results can be manufactured. There is no good reason to favor such indirect inference over direct study, except that it is more easily manipulated. The scientific community, understandably, remains unconvinced.

The real lesson of FC is how profoundly yet subtly people can deceive themselves, and how difficult it is to craft a scientific study that is rigorous enough to eliminate all such deception.

An excellent documentation of the nature of self-deception involved in FC comes from a recently published commentary by a former FC user: Facilitated Communication—what harm it can do: Confessions of a former facilitator by Janyce Boynton. Boynton recounts how she earnestly tried to do FC properly and responsibly, following published guidelines to minimize self-deception:

These guidelines recommended looking for ways to make sure we were not influencing the child as we facilitated with her. We did simple tests, like asking the child questions and watching her behavior to see whether what she expressed through FC conformed to how she was behaving in real life. We looked for spelling and syntax errors in her communications. We looked for turns of phrase that might be attributed to her own unique outlook on life. We consciously tried putting minimal pressure on the child’s arm when we worked with her. We thought we were being vigilant enough to notice if we were influencing the communications.

In the end, none of this mattered. It was not enough to prevent deception, and merely resulted in a false sense of security, in fact deepening the self-deception.

The qualitative research and Boynton’s experience highlights the problem of using ad hoc arguments or using criteria that have not been validated. FC proponents assume that a consistent style on the part of a client writing through FC indicates that they are the true author – but that assumption has never been validated. As with the guidelines above, such arguments provide the false impression of being scientific or having adequate controls, but they are not evidence-based. This is the very essence of pseudoscience.

In Boynton’s case the deception of FC led to tragedy when her client started to “communicate” that she was the victim of sexual abuse by her parents and brother. Such cases, unfortunately, continue to occur.

As long as an intelligent facilitator is in the loop of communication it is possible that they are the source of the communication, and only rigorous blinding can convincingly demonstrate otherwise. I have often thought that perhaps a simple device can be created to provide passive support. Imagine a sort-of cradle that the communication-impaired person can rest their arm on. It is mobile but provides stability and resistance. Perhaps it is even computer controlled to react to the user’s  movements but stabilize and support them – what facilitators claim they are doing. But such a device would not have a subconscious mind able to subtly direct the user’s hand to specific letters. It does not seem that such a device would be difficult to create, and perhaps it is telling that a similar device has not replaced human facilitators in FC. A human can still be present for encouragement and emotional support – but they are simply not holding the client’s hand.

FC continues to exist on the fringe of legitimate science, but continues to fool journalists, patient advocates, and even physicians. Recently the Thinking Person’s Guide to Autism, usually a reasonable blog, published an interview with Amy Sequenzia entirely through FC. Amy has autism and is non-verbal. Through FC she has written poetry, attended school, and given many interviews. I could not find any videos of her typing or objective assessments of Amy’s authorship. I am often reluctant to make specific statements about an individual unless I have seem some direct evidence. It is not impossible that someone with language skills may be genuinely communicating – perhaps even the facilitation is not entirely necessary. Such borderline cases (I am not convinced any exist, I just can’t rule them out) should not be used to argue for the general validity of FC as applied to a broad spectrum of disabilities.

With regard to Amy, I would be willing to look at more specific evidence or even meet her in person if it could be arranged, and would reserve ultimate judgement pending the one type of evidence that would settle the question – a proper blinded evaluation of her communication ability. From what is available online, there is considerable reason to be skeptical that she is the author of the eloquent writing attributed to her. One reason has to do with a core problem with the theoretical underpinnings of FC – the notion that people who are non-verbal can have advanced and unrecognized language skills.

It is not neurologically impossible for speech, writing, and language to have isolated deficits. Expressive aphasia is a lack or decrease in the ability to speak without a  deficit in comprehension, although writing is usually impaired as well. There is no reason, however, to believe that people who are non verbal due to autism have such a precise focal deficit, rather than a more global language deficit.

Perhaps the biggest theoretical problem with FC, however, is that many children through FC displayed sudden advanced language skills. According to reports, for example, Amy starting writing through FC at age 8 and did so as soon as it was tried. There is no plausible explanation for how a child that was not specifically taught how to read and write could have spontaneously learned to do so, and at an advanced level.

Conclusion

It is sad that FC continues to survive despite the overwhelming scientific evidence that it is not a legitimate method of communication, but rather an elaborate exercise in self-deception.  It is a useful example of how powerful and subtle self-deception can be, and also of the ways in which scientific evidence can be manipulated to generate a desired outcome.

Further, I find it disturbing the extent to which FC proponents have attempted to take the moral high ground. They talk as if the proper and moral thing to do is to just believe – believe that children can be vastly more intelligent than they appear, and that what everyone hopes to be true actually is true. The other side of this coin, of course, is a criticism of scientific skepticism as cold and dismissive.

This is the exact opposite of the truth. Everyone is best served if we know the real truth through the most reliable scientific methods possible. Wishful thinking and self-deception should be weeded out with rigorous methods. The APA echoed this sentiment in the conclusion of their statement:

This scientific episode offers a positive lesson: If psychological research does not always give us hoped-for answers, it does help us sift potent reality from wishful thinking, and thus to focus our energy on real solutions. There is no magic wand that one can wave to make profound disabilities disappear. However, as researchers continue to investigate why serious disabilities occur, and how they can best be treated, there is good reason to be hopeful for better prevention and treatment in the future.

No one is helped by a comforting illusion. Scientists who are skeptical of FC are not dismissive or cold, they simply understand something about the nature of deception and want to make sure that people with disabilities and their families are not being unintentionally victimized by well-meaning but misguided therapists.

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19 responses so far

19 Responses to “Facilitated Communication Persists Despite Scientific Criticism”

  1. Bronze Dogon 08 Nov 2012 at 1:55 pm

    I remember one student at my school who was wheelchair bound from her physical difficulties, barely able to move. She couldn’t speak, and had a “keyboard” that was a plastic tray with big letters on it, and someone who worked with her who was probably an FC. She didn’t participate much, I rarely saw her use the keyboard, and the only attempt at speech I recall was a stuttered “A-AH!” which was allegedly an answer to the teacher’s question. When the assistant “interpreted” it, giving the correct answer and the teacher responded, “That’s what I thought she said.” I really wondered how they could possibly have gotten anything out of that. Looking back with what I know now, I suspect it was the assistant who was doing everything.

  2. Chewon 08 Nov 2012 at 2:43 pm

    FC is being relabeled “supported typing”. http://skepdic.com/facilcom.html#new

  3. BillyJoe7on 08 Nov 2012 at 2:55 pm

    “No one is helped by a comforting illusion.”

    I think I know what you mean, but the sentence as it stands is a self-contradiction.
    People are actually helped by comforting illusions, which is why they persist.

  4. slotaagon 08 Nov 2012 at 4:53 pm

    As a speech pathologist, one of my core responsibility is to help people with communication impairments. Facilitated communication is an unfortunate stain on the profession. When l happen upon reports of FC’s use, all sorts of anger rises up in me. What upsets me most about FC is if the person happened to have intact linguistic skills, the facilitator is communicating their own message, not the message of their client. Not only is FC void of evidence supporting its use, but its use is ethically and morally bankrupt.

  5. Jared Olsenon 09 Nov 2012 at 5:45 am

    From what I’ve read, there seems to have been quite a number of cases where innocent parents are accused of sexual abuse through FC. If it’s actually the therapist doing the ‘talking’, why are so many of them ‘talking’ about sexual abuse? What does this say about the FC’ers themselves? Was Freud right after all?

  6. Todd W.on 09 Nov 2012 at 12:59 pm

    It may be worth mentioning the 1993 Frontline episode “Prisoners of Silence” that covered FC in depth. Part 1 can be found here.

    @Jared Olsen

    Those who are disabled to a significant degree and who are, on top of that, nonverbal are easy prey for sexual predators. In the case of the FC sex abuse allegations, maybe the facilitator saw some minor bump or bruise that raised concern or anything, really, that planted the seed of doubt in their minds. In an environment where we have news reports of sex crimes, Law and Order: SVU marathons and countless other suggestions of the abuse of vulnerable people, not to mention the possibility that the facilitator themselves may have experienced it directly or know someone who was abused, those doubts can quickly build on each other to the point where they are, unknowingly, authoring allegations. They may genuinely be concerned for their client’s welfare, but, road to hell, good intentions and all that.

    We saw the same thing during the “recovered memory” craze. Lots and lots of therapists finding that their clients were sexually abused as children. Many unwittingly planted those false memories in their patients’ minds so that the patients themselves actually believed it, too. And then it turned out that it was all made up and “recovered memory” therapies were useless and dangerous nonsense.

  7. Karl Withakayon 09 Nov 2012 at 6:06 pm

    RE: “No one is helped by a comforting illusion.”

    I’ve been looking for an opportunity to post this somewhere:

    Dialog from the “That’s not my Penguin” episode of the now cancelled show Awake :

    (Background: Michael a police officer and patient of Dr Evans recently was involved in a hostage situation in a psychiatric facility. He reached a point in the situation where he had an opportunity to get the hostage taker to surrender involving a choice of two options: get the man to realize he was deluded, or feed into and divert his delusion.)

    Dr. Judith Evans (Psychiatrist/Psychologist):

    “So you had an opportunity to help this patient to see the truth, but you chose instead to perpetuate his denial. Why?

    Detective Michael Briten (Patient):

    “How would he be better off thinking of his sister in the ground somewhere rather than thinking of her free, [pause] liberated, [pause] waiting for him? Explain to me what exactly is so great about seeing reality for what it is.”

    Dr. Judith Evans:

    “You’ve more or less summed up the reason why every major religion has some version of an after life.”

  8. isleson 11 Nov 2012 at 12:10 pm

    Thank you for this post. I know a number of otherwise science-minded autism advocates who don’t seem to apply their skepticism to FC. I respect them and don’t want to upset them, but for many of the reasons that other autism quackery needs to be recognized, this does too.

  9. Davdoodleson 11 Nov 2012 at 11:57 pm

    “We did simple tests, like asking the child questions and watching her behavior to see whether what she expressed through FC conformed to how she was behaving in real life. We looked for spelling and syntax errors in her communications. We looked for turns of phrase that might be attributed to her own unique outlook on life. We consciously tried putting minimal pressure on the child’s arm when we worked with her.”

    We did everything except any of the dozens of simple tests that would obviously work.

    Ask her something the ‘facilitator’ would not know. Her first childhood pets name etc.

    Show her a word the ‘facilitator’ can’t see and ask her to repeat it.

    Etc-blah-not-rocket-science.
    .

  10. superdaveon 13 Nov 2012 at 9:05 am

    Having read this post I am now convinced that FC probably can never work. But if such a patient existed, someone with language skills and enough motor control to be detected by another human being reliably, then it seems likely to me that this person could benefit much more from a technological solution than a human facilitator.

    One of my personal heroes is the guitar player Jason Becker, who has lost almost all of his motor control due to ALS. He is able to communicate using a coded language and the use of small ability he has to roll his eyes. Watching a video of this communication happening in real time is hundreds of times more convincing than anything I have ever seen with FC.
    https://www.youtube.com/watch?feature=player_embedded&v=DL_ZMWru1lU#!

    (even this communication is 100% convincing, but much better than any FC I have seen)

  11. superdaveon 13 Nov 2012 at 9:06 am

    I meant isn’t, not is in that last sentence

  12. DevoutCatalyston 13 Nov 2012 at 10:21 am

    Were it real, I would expect FC to produce independent communication initiated by the communicator as quickly and as easily as other augmentative communication strategies such as PECS. I worked with an adult loved one with severe cognitive impairment and in under 3 hours of training he could communicate a basic want — I want a taco — without further assistance in using his new communication book. He quickly generalized to where he would ask for favorite activities, foods, people — still does. That was ten years ago and these days he does not write sonnets nor file affidavits, but will go to the swimming pool this afternoon based on his own volition and use of a communication strategy that is at his command. FC is a massive failure right before your very eyes, and gets in the way of the disabled person’s development.

  13. Steven Novellaon 13 Nov 2012 at 10:58 am

    DC – I agree. If using FC mainly allowed people that were thought to be non-communicative due to severe developmental disorder to communicate some basic needs and feelings, that would be somewhat plausible (based on the individual, of course). It defies all logic, evidence, and common sense, however, to argue that a person that appears to be severely cognitively impaired is actually well above average in intelligence and maturity, and somehow learned to read and write without being specifically taught how to do so.

  14. Bronze Dogon 13 Nov 2012 at 12:07 pm

    One thing that sticks out to me when FC comes up is the wishful thinking and Just World Hypothesis. A lot of people want to believe that every disadvantaged child has some amazing hidden talent to balance out their disabilities to make life fair. FC is seductive because it reinforces the idealistic fantasy. Kids who’ve lost their language ability suddenly turn out to be poets, making their parents proud when it’s actually the adult facilitator doing the work.

    It leaves me wondering how many disadvantaged children might be unhappy as a result of being treated like a puppet and have their genuine desires covered up by the FC.

  15. Todd W.on 13 Nov 2012 at 1:53 pm

    I’ve been posting some comments over at TPGA, questioning the validity of FC and trying to be as respectful as I can, but I’ve been having a bit of blowback from folks. I looked at some of the “studies supporting FC” from that ICI and a thought occurred to me after seeing the studies validating FC by using eye tracking: why not use eye tracking assistive technology instead of typing with the aid of a person? There are so many ways to go about helping people communicate who are non-verbal, it just seems…I don’t know…wrong (can’t find the best word to describe my feelings here) to stick with something that has so much evidence against it and so much potential for harm, whether that is false accusations, time taken away from learning other skills, or time taken away from learning to actually communicate independently.

  16. Todd W.on 13 Nov 2012 at 1:54 pm

    Feel a bit frustrated and depressed about the whole thing…

  17. Steven Novellaon 13 Nov 2012 at 2:15 pm

    Eye tracking systems for communication already exist. If eye tracking were a reliable indicator for these subjects, they could just use existing eye-tracking devices to communicate. The whole point of FC is that an intelligent agent needs to be in the loop to be the actual source of the communication.

  18. Todd W.on 13 Nov 2012 at 3:42 pm

    @Steven Novella

    Exactly the point I tried to make over at TPGA. I included a link to one such device, as an example. Here’s hoping that helps make my point to some of the commenters there.

  19. arthurgoldenon 30 Dec 2012 at 8:07 am

    You write: “An excellent documentation of the nature of self-deception involved in FC comes from a recently published commentary by a former FC user… Janyce Boynton” and and later write: “In Boynton’s case the deception of FC led to tragedy when her client started to “communicate” that she was the victim of sexual abuse by her parents and brother. Such cases, unfortunately, continue to occur.”

    You are correct that this commentary was recently published – in 2012 – but you do not state that the sexual abuse charges were made 20 years ago in 1992. The Wendrow case took place in November 2007 and a case in Wales recently came to light which took place in October 2010. My own extensive inquiry shows that such cases are very rare and it is misleading for you to write that “Such cases, unfortunately, continue to occur.” As a retired lawyer, I have found about the same number of cases of sexual abuse charges through Facilitated Communication that have been substantiated than those that have not. What is a much greater tragedy is the so numerous cases of all types of abuse of nonverbal persons who are denied any means of communication, even though such communication may not be perfectly reliable and such cases have to be carefully investigated, just as verbal communication by competent adults about abuse is about as likely to be false as true.

    Arthur Golden

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