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    Navigating The Autism World: Facilitated Communication Is Still Pseudoscience
    By Kim Wombles | February 25th 2011 07:42 AM | 6 comments | Print | E-mail | Track Comments
    About Kim

    Instructor of English and psychology and mother to three on the autism spectrum.

    Writer of the site countering.us (where most of these

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    Some of the most naturally appealing stories in the autism world (and our wider world) are those stories that reinforce the myth of the self-made man (a concept I coincidentally taught this week in American Literature). We like movies like Rudy, All the Right Moves, and the Mighty Ducks series because they feed the myth, the feel-good notion that no matter how far behind one is, how disadvantaged, that plucky teamwork, determined effort, and good fortune will be enough to overcome all obstacles, make the team, win the game, and the woman (or man), and get out of the miserable situation you were originally in.

    It's not just the staunchly biomedical and "pro safe" vaccine camp who champion stories of miraculously overcoming the odds, though, through tremendous intervention. One difference, however, is that the champion in the story is usually the parent, in the biomedical side, who valiantly did everything to overcome the odds, who tried every treatment, climbed every mountain, hit all the Sound of Music high notes, in order to recover their lost child. Other camps within the autism community may instead champion the autistic individual himself (which can rightly be argued as placing the focus where it belongs).


    It's unfortunate but true that even in areas of the autism community where evidence-based practices, scientific research, and a respect for neurological differences are the norm, that a too-good-to-be-true story is applauded and carried on as true without the usual skepticism and requisite of proof.

    And where the focus is completely on autism as being a different way of being, the woo is just as likely to be heavy as it is on the biomed camp and facilitated communication gets not only a free pass, but a jump start and carried across the finish line. There is something romantic about the idea that people who are severely impaired, unable to speak, unable to perform academically, are simply locked in their bodies, and that with just the right tools and help they'll demonstrate the inner genius, the gifted poet, that is hidden to the larger world.


    There's just enough kernel of truth to the concept of locked-in syndrome that this is an easy area, ripe for exploitation, both by well-meaning parents and educators as well as those who see a good con when they find one.


    Reasonable people, watching videos of individuals being facilitated, who are acquainted with the research, aware of the ideomotor effect, and interested the safeguarding of the rights of the severely disabled, cannot in good conscience support facilitated communication. There are plenty of assistive technologies that are available and will help the nonverbal person to communicate without ever taking the chance of a facilitator co-opting the communication of the disabled person. James Randi wrote in January, regarding the recent $1.8 million settlement to the father who was falsely accused of sexually molesting his autistic daughter:  "The notion that FC is a legitimate treatment is still entertained by the naïve, and enthusiastically encouraged by Syracuse University, by Professor Douglas Biklen – a sociologist and professor of special education there – and by others who have chosen to ride this dreadful mare all the way to Hell."


     We have an obligation as parents to children on the spectrum to demand proof where treatments are concerned. We have an obligation to protect our children and their unique voices, however they are able to communicate. We have an obligation to not let our own desires concerning our child override our child's personhood. Some of the most negating things a parent can do is place words into their child's mouth, to not see and respect the child for who he or she is, to not think that whatever the level of impairment, the child has innate value and the right to respect and to be accepted just as they are.


    When we advocate beyond our children, when we are promoters of evidence-based practices, we should be careful not to fall into the feel-good trap of promoting stories that may, indeed, be too good to be true. It's hard to resist the pull of feels-good story, the lure of a miraculous tale of success despite the odds. If you watch CNN's Sanja Gupta for any amount of time, you see he's never met a too-good-to-be-true story he couldn't help but accept. It's understandable that our desire for something to be true can trump that inner skeptic who asks wait a minute, show me.


    It is all too easy to co-opt a person's communication with facilitated communication. This young woman below put together a stunningly simple explanation of FC. Reasonable people watching this video have to give serious consideration to the idea that it is ridiculously easy to co-opt the communication of other, especially a passive participant and that parents and well-meaning educators may be letting their desires over-ride what an individual can actually do.

    If that's not enough, I'd encourage you to examine video footage of FC and look carefully at how it's being done. Where is the facilitator? How is the facilitating being done? Where is the individual being facilitated looking? Has the facilitation been independently verified? Are complete answers being provided with one button push? 


    Other FC/RPM articles I've written and co-written:

    Questionable Autism Approaches: Facilitated Communication and Rapid Prompting Method

    Facilitated Communication: A Price Too High To Pay (cowritten with Dr. James Todd)
    Facilitated Communication Quackery Gets Journalistic Promotion In Annapolis
    Why Rapid Prompting Method Still Doesn’t Pass the Evidence-Based Test
    Facilitated Communication: A Literature Review




    Comments

    1. Kim Wombles writes:

    [a] "...There are plenty of assistive technologies that are available and will help the nonverbal person to communicate without ever taking the chance of a facilitator co-opting the communication of the disabled person."

    [b] "... We have an obligation as parents to children on the spectrum to demand proof where treatments are concerned."

    [c] "...It's understandable that our desire for something to be true can trump that inner skeptic who asks wait a minute, show me...."

    2. As the father of a nonverbal person, as much as I desire the above statement [a] to be true, I do not find it understandable for such a desire to "trump that inner skeptic who asks wait a minute, show me" as in statement [c], so I demand proof from Kim Wombles as in her statement [b] that "there are plenty of assistive technologies that are available..."

    3. Of course, I am expecting to be given experimental data from top quality peer-reviewed journals.

    Arthur Golden

    kwombles
    Arthur,
    You labor under the delusion that I'm beholden to you to deliver information that you demand, and I believe we've had versions of this discussion before. 

    Nonetheless, here you go:
    http://home.cc.gatech.edu/autism/uploads/44/mirenda.pdf

    I even found an article in your neck of the woods:

    "In Israel, the provision of augmentative and
    alternative communication (AAC) services and
    the funding of AAC equipment have come to be
    regarded primarily as health care issues."

    Weiss, P. L., Seligman-Wine, J., Lebel, T., Arzi, N.,&Yalon-Chamovitz, S. (2005). A Demographic Survey of Children and Adolescents with Complex Communication Needs in Israel. AAC: Augmentative and Alternative Communication, 21(1), 56-66. doi:10.1080/07434610412331272910


    http://www.aacinstitute.org/AAC.html
    http://www.aacinstitute.org/Resources/Evidence/OtherExternalEvidence/2004ReviewOfDynamicDisplayEvidence.html

    http://www.asha.org/public/speech/disorders/AAC.htm

    Had you not been wedded to your particular need for FC to be real, perhaps you would have examined alternatives.


    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    UvaE
    Unfortunately, facilitated communication is just the tip of the iceberg of pseudoscience. Autistic parents crash their ships into a lot more deception--- not just the deceitful mercury hypothesis, but the diets, hyperbaric chambers, the early-intervention equals miracle-turnaround hogwash and a lot more.... What has done the average autistic child the greatest disservice is the looseness of the label. So many questionably autistic( so-called higher functioning) children now get priority* over the needier kids because the former are so much easier to educate. *In terms of placement in better quality schools for autistic children
    As a parent who waited 24 years for my son to "speak," I am not interested in fabricating a conversation. My son proved to me that he was the one typing when my husband gave him a word out of my hearing, and my son correctly typed the word with me as the facilitator. (My son had a left hemispherectomy in 1987.) Through facilitated communication, my son's autistic friend has learned how to type with no one touching her. FC is not "false hope" and it does work.

    kwombles
    Then independent tests would verify that it was true communication and not facilitator effect You should seek that out; you'd be one of the first families to be able to independently verify it. I'll make sure to pass your comment along to folks who help with that.
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    Ms. Bluhm:

    Thank you for your comment.

    As for your personal validation, one item is not be enough. It could be a lucky guess. If words of common usage in your household were employed in your test, there would have to be enough of them that lucky hits could be distinguished from genuine answers. We're facing a "restricted range" problem. We see FC validations in which the facilitators are given the list of possible answers in advance. This artificially pushes up the apparent success rate by causing the facilitators to never guess off-list words. Since in FC World lucky hits are deemed to be "correctly passed information," even a statistical failure can be said to contain some genuine communication. By that standard, Clever Hans was communicating genuine human like thoughts on the 8% of the trials that the right answer was tapped out.

    You're going to have to start with about 10 items, and have an unbiased method of shuffling them--easier said than done as research on card shuffling shows. If there is some ability to independently type or point successfully, you may need more items in order to distinguish those answers actually produced by the communicator and those produced by the facilitator. (That would raise the question of why FC was being used at all, and not any of the many methods available to people who have problems communicating, but retain some ability to do so.) And because what is technically called "stimulus leakage" is a strong possibility among people have worked together a long time, items should be presented "blind" such that the questioner doesn't know the answer. Other subtle cues might provide clues about the word being asked. One serious problem with such tests is the response of the questioner, who can give feedback on the success of each item by unconscious facial expressions--satisfaction or disappointment, for instance. If each word is used only once, then elimination will allow the facilitator to narrow the guesses as the test progresses. Questioners might also take slightly longer with previously missed words or difficult ones than ones that were correctly guessed. I was at an FC event where the proposed test did exactly that and more. The facilitator went through a stock list of words, eliminating each one from the list as guesses were made, all while indicating whether each guess was right or wrong. Thus, anyone with even an average memory could always guess the last one. He also suggested throwing out the first few items as "warm ups." Of course, that threw out the answers most likely to be wrong just because the possibilities had not been narrowed. Throwing out the first few meant that even pure random guessing from remaining items from the list would produce a statistically significant positive result!

    The friend? Well, I too have seen such a person, maybe the same person, who could supposedly type independently. The problem was that her facilitator was signaling where to move on the keyboard with hand movements: up slightly meant move one way across the keyboard; down mean move the other. Other movements signaled when the communicator was over the right letter, and then when to press. This was very subtle, and it is not surprising others didn't notice it because most people focus on the typing rather than the movements of facilitator. Misdirection, like in a magic trick. That apparent independent typing is real typing is strange thing to believe anyway. First of all, "independent" means to FC advocates something different than it does to the rest of the world. In FC, a communicator can be "independent" even if someone is always present to hold or otherwise manipulate the letter board or typing device. So we find statements such as this, "The 2nd participant [Sue Rubin] was considered an independent typist. Although she did not require any physical touch, she did require a supporter to hold the typing device while she typed" (Robledo & Donnellan, 2009, p. 300). Well, what I see when others hold the boards or typing devices is the needed letter is moved slightly toward the putative communicator's finger, with the communicator responding by a larger motion in the opposite direction toward the letter the facilitator intends to have typed. (This is especially common in Rapid Prompting.) And, people just forget themselves. I've seen attorneys, who should know better, acknowledge that there could be a "Clever Hans" situation going on in FC, but then claim that typing without physical contact is proof of authorship. This is an easy one. Was anyone holding Clever Han's hoof when he tapped out the answers? No. Very obviously physical contact is not required for cueing. The same goes for Lady Wonder, who was literally an "independent typist" in FC parlance because they had built for her an horse-sized typewriter.

    http://tinyurl.com/4jkmaop

    It would be wonderful if something as simple as FC worked. It can't pass the most basic tests, involving the simplest communicative responses, or the most linguistically natural ones, under the most artificial or most natural conditions. It is simply not an effective method. Even so, you believe it is. Thus, I suppose one big question is why, if you have and know of genuine instances of FC, you're not applying for James Randi's Million dollar prize, or, barring an interest in money, settling the matter by participating in formal versions of the test you have already done.

    Thank you again for your comments.

    Jim