Skeptophilia (skep-to-fil-i-a) (n.) - the love of logical thought, skepticism, and thinking critically. Being an exploration of the applications of skeptical thinking to the world at large, with periodic excursions into linguistics, music, politics, cryptozoology, and why people keep seeing the face of Jesus on grilled cheese sandwiches.

Wednesday, July 20, 2011

The false hope of Facilitated Communication

Despite the scorn I frequently heap upon woo-wooism of various types, I honestly feel that most of it is pretty harmless.  Hunting ghosts, chasing Bigfoot, messing with Tarot cards or numerology or astrology -- about all that's really at risk is your bank balance, and if you're willing to pay for your own particular brand of pseudoscience, well, that's your choice and no real damage done.

Not so with Facilitated Communication.

I bring this up because MIT is hosting a conference on Facilitated Communication, starting today and running through Friday, a move that gives me further reason to question the judgment and critical thinking abilities of our educational leaders.  If you have never heard of FC, let me give you a brief rundown.

In the late 1980s, a woman named Rosemary Crossley had an idea.  This idea was that non-communicative children -- especially those with severe retardation, cerebral palsy, and severe autism -- might not lack intelligence, despite their inability to express themselves.  So she developed a technique by which a "facilitator" could use hand gestures and tiny changes in the affected individual's facial expressions and body language to "interpret" what the person was really thinking.

Despite a large number of controlled studies showing that FC doesn't work -- that the outcome is based upon the thoughts, wishes, and desires of the facilitator, not the patient -- FC has caught on, and for a very good reason.  It gives the family members and caregivers of non-communicative individuals a false sense of hope.  And because of this, it has proven to be very lucrative.  In 1992 a Facilitated Communication Institute was founded, under the aegis of Syracuse University.  (Largely because of the bad press FC has gotten, the institute was recently renamed "The Institute for Communication and Inclusion" and FC renamed "supported typing.")  Crossley herself has become famous for a book called Annie's Coming Out, with co-author Annie McDonald -- a severely retarded girl with cerebral palsy, who allegedly communicated her thoughts to Crossley via FC and helped to write the story.  The book later became the basis of an award-winning movie.

It's not that it's impossible that there are non-communicative individuals who still have highly active brains; consider Stephen Hawking, whose decades-long fight with ALS has still not stopped him from writing scores of books and academic papers.  But with FC, the "facilitators" are taking the easy way out, injecting their own knowledge, thoughts, and feelings into the "messages" that are supposed to come from the patients' minds.  More than thirty controlled studies of FC have shown that the practice has no value, and yet Crossley and her partner Chris Bothwick continue to rake in money, charging $250 for a six-part video series on how FC works and what it can do for non-communicative patients.  Practitioners of the technique charge hundreds of dollars an hour to create messages that are alleged to come from the patients, and of course Crossley and Bothwick are kept busy (and well-paid, not to mentioned wined and dined) on the world-wide academic lecture circuit.

It's bad enough that Syracuse University has bought into the whole thing -- their FC Institute (pardon me, the "Institute for Communication and Inclusion") continues to thrive -- but now MIT, traditionally a bastion of peer-reviewed science, has given its tacit approval to the whole thing by hosting the FC conference this week.

I am appalled, and it's not just at their embracing pseudoscience -- as if they were hosting a conference on telepathy, or something.  I am appalled mostly because this technique, which has failed every test that would be necessary to establish it as rigorous science, bilks people out of their money using the lever of the desperation of thwarted hope, love, and compassion -- by giving family members the promise of communicating with a loved one who is locked inside a hopelessly non-functioning body.  It makes them think, falsely, that children whose brains are damaged beyond repair are actually experiencing high-level thoughts.  It rips people off by providing them with false hope -- and as such, should be scorned by professional psychologists and educational institutions (and even more important, prosecuted by the legal system), just as we would scorn and seek to prosecute quacks who give patients with terminal illnesses useless medications.

And the administrations of Syracuse University and MIT should be ashamed of themselves.

9 comments:

  1. I wonder how much of this "Faith Based" surge in ignorance is due to the overwhelming progress of technology? Is this phenomenon as common in other developed countries? It seems like it does. Makes me wonder how you can educate folks who are set and determined to stay ignorant.

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  2. You should be ashamed of yourself for your gross misrepresentations of Facilitated Communication, which are too numerous for me to attempt to list all of them.

    I will state that Dr. Rosemary Crossley has not become "filthy rich" as you falsely state and for years DEAL never charged parents, only accepting government payments, if any.

    Since many studies in support of Facilitated Communication (FC) are in languages other than English (such as German, Spanish, French and Italian) I do not know if there are now more studies in support of FC than against it, but I do know the balance over the past decade has been in support of FC.

    If your blog entry was a published review article, I would challenge it as research fraud and demand the journal apologize for its editorial failure and retract it.

    I believe you cannot cite reliable sources for your factual statements, but I challenge you to attempt to do so or else delete this blog entry.

    Arthur Golden, J.D. 1971, Harvard Law School

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  3. I include below sources that call into serious question FC's validity. I'm sure that with little effort you can find others on your own.

    Eberlin, M., McConnachie, G., Ibel, S., & Volpe, L. 1993. “Facilitated Communication: A Failure to Replicate the Phenomenon.” Journal of Autism and Developmental Disorders, 23 (3), 507–530.

    Simpson, R. L., & Myles, B. S. 1995. “Effectiveness of Facilitated Communication with Children and Youth with Autism.” The Journal of Special Education, 28 (4), 424–439.

    Singer, Margaret Thaler and Janja Lalich. Crazy Therapies (San Francisco: Jossey-Bass, Inc., 1996).

    Gorman, Brian J. "Facilitated Communication in America: Eight Years and Counting," in Skeptic, vol. 6 no. 3, 1998.

    http://www.srmhp.org/archives/facilitated-communication.html

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  4. ... and here's what James Randi has to say on the matter:

    http://www.randi.org/site/index.php/swift-blog/783-this-cruel-farce-has-to-stop.html

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  5. Gordon,

    You stated that "More than thirty controlled studies of FC have shown that the practice has no value." I realized that after I posted my first comment that I should have explicitly stated that there may be more than 30 negative studies but that it is gross misrepresentation to not state that there are a good number of positive studies. I probably have read a majority of the negative studies but I do not know if you hve actually read any of them. You then post a list of 5 articles of which it seems only 2 are actual research studies. I quickly found a list of 12 positive studies prepared by FC master trainer Rita Rubin in 2005, of which 11 are in English and 1 is in German (have you actually read any of these studies validating FC?):

    Studies Validating F.C.

    Bundschuh,K. & Basler-Eggen, A. (2000) Abschlussbericht zur Studie, getutzte Kommunication bei Menschen mit schwern Kommunikationasstorwigen. Munich: Bayerisches Staatsministerium fur Arbeit und Sozialordunung, familie, Fauen und Gesundheit.

    Calculator, S.N. & Singer, K.M. (1992). Letter to the editor: Preliminary validation of facilitated communication. Topics in Language Disorders, 12(4), ix-xvi.

    Cardinal,D., & Hanson,D., & Wakeham,J. (1996). Investigation of authorship in facilitated communication. Mental Retardation, 34(4), 231-242.

    Intellectual Disability Review Panel (IDRP). (1989) Investigation into the reliability and validity of the assisted communication technique. Melbourne, Australia: Department of Community Services, Victoria.

    Ogletree, B., Hamtil, A., Solberg.L. & Scoby-Schmelzle,S. (1993). Facilitated communication: A naturalistic validation method. Focus on Autistic Behavior, 8(4), 1-10.

    Olney, M. (1995). A controlled evaluation of facilitated communication. Unpublished doctoral dissertation, Syracuse University, Syracuse, New York.

    Olney, M. (2001). Other Research – Evidence of Literacy in Individuals Labeled with Mental Retardation. Disability Studies Quarterly, 21, (2).

    Sheehan, C., & Matuozzi, R. (1996) Validation of facilitated communication. Mental Retardation, 34(2), 94-107.

    Simon, E.W., Toll, D.M., & Whitehair, P.M. (1994). A naturalistic approach to the validation of facilitated communication. Journal of Autism and Developmental Disorders, 24(5), 647-657.

    Steering Committee, Division of Intellectual Disability Services. (1993). The Queensland report on facilitated communication. Brisbrane, Australia: Department of Family Services and Aboriginal and Islander Affairs.

    Vazquez, C.A. (1994). Brief report: A multitask controlled evaluation of facilitated communication. Journal of Autism and Developmental Disorders, 24(3), 369-379.

    Weiss, M.J.S., Wagner, S.H., and Bauman, M.L. (1996). A validated case study of facilitated communication. Mental Retardation, 34(4), 220-230.

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  6. I do not read German, so the one in German I will not be able to look at without the help of a translator. I will look into the others, and if I find that there is sufficient reason to warrant a change in my stance, I will post a retraction.

    And yes, I have read the negative ones.

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  7. I refer you to the following:

    http://www.researchautism.net/interventionitem.ikml?print&ra=16&infolevel=4

    The relevant quote is as follows:

    We have identified almost fifty reports of facilitated communication published in peer-reviewed journals.

    These trials included a total of more than 400 individuals aged 3-adult.

    Many studies (such as Biklen, 1990; Biklen, 1991; Biklen, 1992; Biklen,1995; Crossley, 1992; Clarkson, 1994; Heckler, 1994; Janzen-Wilde, 1995; Niemi, 2002; Olney, 1995; Sabin, 1993; Sheehan, 1996; Weiss, 1996) are anecdotal, single case or case series of reports involving no experimental controls. These almost all report very positive findings.

    Studies involving some degree of experimental manipulation e.g. where the facilitator is blind to the stimuli shown to the individual using FC generally refute it. (Bebko, 1996; Beck, 1996; Bomba, 1996; Braman, 1995; Crews, 1995; Eberlin, 1993; Edelson, 1998; Hirshoren, 1995; Hudson, 1993; Kerrin, 1998; Klewe, 1995; Konstantareas, 1998; Montee, 1995; Myles, 1994; Myles, 1996a; Myles, 1996b; Oswald, 1994; Regal, 1994; Simon, 1996; Simpson, 1995; Smith, 1993; Smith, 1994; Szempruch, 1993; Vasquez, 1994; and Wheeler, 1993).

    Systematic reviews (Mosteret, 2001) conclude that there is no evidence to support the use of FC.


    I am finished discussing this with you.

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  8. Gordon,

    I do not know why it has taken over a decade for 2 unbiased review articles on the experimental data in support of Facilitated Communication to be in preparation, but I hope they will be published in a reasonable time.

    Research Autism website quoted above is not from a peer-reviewed article and is baised against FC. Since it may seem reasonable for you to rely on it, I now realize I should contact them and ask that they retract their biased statements. I think if you wish to be more diligent than you should read the underlying studies and not rely on such a review.

    Your statements against Dr. Rosemary Crossley are completely without any basis and should be retracted.

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  9. My son has just started with Rosemary and I was very skeptical. I held my sons arm the way Rosemary did and tried to influence his hand and finger and found I couldnt. APart from that I watched where his eyes went when Rosemary was facilitating his arm to use a yes no talking box. His eyes cannot be controlled by Rosemary and they were giving the same answer as his hand. Plus when told that she couldnt tell if he was saying yes or no, He vocalised strongly in a very definite sounding "positive" noise and moved his hand. The biggest thing was though she managed to hold his attention continually for over 2hrs...He has never "worked" with anyone and stayed so focused before.....one might wonder if it was because he knew she was trying to help him communicate and believed in him....what other reason could there be for his total concentration

    ReplyDelete