Saturday, January 3, 2015

Facebook Notes Series: My Standing Position on Facilitated Communication

Originally Posted on author's Facebook Page, April 21, 2014

Facilitated Communication, or FC, is the memorial whipping post of autism. An easy target to malign because fraud is always big news; many who do so are not aware that they are falling into an ableist point of view because said criticism is founded on the presumption of the incompetence of the user of this method as AAC support.

My issue with FC criticism is that medical malpractice is more frequent and widespread than FC fraud, but we don't discredit modern medicine, and we don't tell people not to seek medical help. Psychiatric fraud and malpractice are more widespread, but we don't discredit the practice of psychiatry. In fact one of the most devastating chapters in autism history was Bruno Bettelheim and the entire psychiatric community insisting on legitimizing his dissemination of the unfounded "refrigerator mom" theory of autism ( "although [ Leo] Kanner was instrumental in framing the refrigerator mother theory, it was Bruno Bettelheim, a University of Chicago professor and child development specialist, who facilitated its widespread acceptance both by the public and by the experts in the medical establishment in the 1950s and 1960s." - Wikipedia).  An entire generation of mothers and their autistic children were irreparably harmed, all from a concept that was horrific, because the psychiatric community was not held to account for what the man was doing simply because of his professional label.

Cases of FC fraud should prompt the kind of response fraud in any other human services area does; that is a call for stringent standards and vetting for facilitators. It should not (based upon the presumption of incompetence of the nonspeaking participant, which isableist) be thrown out. Situations like these are why the cliche "throwing the baby out with the bath water" was created. Articles critiquing FC  facilitators should be doing just that. Not attacking the method, but shedding light on how important it is that standards be set for those facilitating, just as standards are set for quality of all those assisting and providing support to individuals in our community.

So:
1. Presume competence of nonspeaking autistic individuals. Sue Rubin, Jamie Burke, Amy Sequenzia , Sharisa Kochmeister and countless others show us that the ultimate goal of assisted typing can be achieved though reaching that goal may take years.

2. Critique the fraud by all means but realize that malpractice and fraud are rampant and this should never prevent a method from being explored or applied. Celebrate the successes of this type of AAC as well.

3. Call for better quality standards in managing those who are trained to facilitate. Because the consumer is a nonspeaking one, it is important that strong self advocacy skills be established in the consumer as well. Be part of a solution. Improve the lives of nonspeaking people, don't take away the legitimacy of their speech support and marginalize them. There is a great deal of room on this giant ship of autism. Let's let everyone get onboard.

This post generated 56 shares and 87 comments. I will try to add some of the comments which were posted references below.
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http://tinygracenotes.blogspot.com/2012/12/i-was-self-loathing-fc-skeptic.html
http://emmashopebook.com/2014/03/28/seeing-others-write-to-communicate/
http://tinygracenotes.blogspot.com/2013/07/dealing-with-family-matters-of-constant.html

American Speech-Language-Hearing Association. (1994). Facilitated communication [Technical Report]. Available from www.asha.org/policy. http://www.asha.org/docs/html/TR1994-00139.html#AP2 [Particularly important are The Final Recommendations: http://www.asha.org/docs/html/TR1994-00139.html#sec1.12 and Appendix 2: Minority Statement to Technical Report on Facilitated Communication and Response from Subcommittee Chair http://www.asha.org/docs/html/TR1994-00139.html#AP2] Accessed 25 April 2013.

Bailey, Judy, 2006, Dealing with Silence and Coming Out of Silence, http://www.everyonecommunicates.org/.../ComingOutOfSilenc..., Accessed 30 April 2013

Bailey, Judy, 2007, Slides from a Presentation given by Judy C. Bailey, M.Ed.,at Ellensburg, Washington, Summer 2007, http://www.everyonecommunicates.org/.../Ellensburg2007.html, Accessed 30 April 2013  http://www.everyonecommunicates.org/nutshell.html

Bailey, Judy, 2005, Thoughts on Facilitated Communication Training (FCT): What If…?, http://www.everyonecommunicates.org/.../ThoughtsOnFCT.html, Accessed 30 April 2013

Brandl, Charlene, Sometimes It Can Be Hard to Believe, Grandma Char and lessons learned, 25 March 2013, http://www.grandmacharslessonslearned.blogspot.co.uk/..., Accessed 17 April 2013.

Brandl, Charlene, Why I Do What I Do, Grandma Char and lessons learned, 11 January 2013, http://www.grandmacharslessonslearned.blogspot.co.uk/..., Accessed 17 April 2013

Crossley, Rosemary, Issues of Influence: Some Concerns and Suggestions, Facilitated Communication Digest, Vol.1 No.3 (May 1993) [pp 11-12], reprinted at Institute on Communication and Inclusion, Syraceuse University http://soe.syr.edu/.../doc.../2011/8/Issues_of_Influence.pdf Accessed 23 April 2013.

Crossley, Rosemary, Literacy and Facilitated Communication Training, Facilitated Communication Digest, Vol.1 No.2 (Feb 1993) [pp 12-13], reprinted at Institute on Communication and Inclusion, Syraceuse University http://soeweb.syr.edu/.../Literacy_and_Facilitated... Accessed 23 April 2013.

Crossley, Rosemary & Borthwick, Chris. 2002, "What Constitutes Evidence?" Presented at the Seventh Biennial ISAAC (International Society for Alternative and Augmentative Communication) Research Symposium, Odense, Denmark, 2002, https://attachment.fbsbx.com/file_download.php... Accessed 24 April 2013.
Fransden, Mike, Examiner Health & Fitness, 9 October 2010, Facilitated Communication (FC) enables non-verbal people on autism spectrum to communicate by typing, http://www.examiner.com/.../facilitated-communication-fc..., Accessed 16 April 2013.

ASHA Practice Policy - Browse by Topic
Below are the official documents of the Association related to a particular topic. You can also browse documents by year and by type of document.
ASHA.ORG

Jasuta, Stephanie Sherbel, Speaking Up for People Who Can't Speak, Blogging Authors, Guest Post, http://www.bloggingauthors.com/.../speaking-up-for-people..., accessed 16 April 2013.


Tuzzi A. (2009). Grammar and Lexicon in Individuals With Autism: A Quantitative Analysis of a Large Italian Corpus, Intellectual and Developmental Disabilities, 47(5), 373-385.http://soe.syr.edu/.../2012/4/__Public_Lecture_SLIDES.pdf, Accessed 16 April 2013. (In English).



Wilkens, John, 'Nothings need to be heard', email Interview with Diane Goddard, Peyton's Mum, U-T San Diego, 29 March 2013, http://www.utsandiego.com/.../memoir-traces-familys.../... Accessed 16 April 2013



Williams, Donna, In the Real World, Printed in Vol. 3 No.2 (Feb 1995) of The Facilitated Communication Digest [pp5-9], Reprinted at Institute on Communication & Inclusion, Syraceuse University, http://soe.syr.edu/.../2010/7/in_the_real_worldwilliams.pdf Accessed 23 April 2013


Zurcher, Ariane, More About Facilitated Communication, Emma's Hope Book, 15 February 2013, http://emmashopebook.com/.../more-about-facilitated.../ Accessed 22 April 2013

Zurcher, Ariane, Is Facilitated Communication a Valid Form of Communication?, Emma's Hope Book, 16 November 2012, http://emmashopebook.com/.../is-facilitated.../ Accessed 22 April 2013

Zurcher, Ariane, An Unexpected Response and The Importance of Trust, Emma's Hope Book, 10 December 2012, http://emmashopebook.com/.../an-unexpected-response-and.../ Accessed 23 April 2013

Zurcher, Ariane, What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism, Thinking Person's Guide to Autism, 8 April 2013, http://www.thinkingautismguide.com/.../what-i-wish-id... Accessed 24 April 2013 

Sharisa Joy Kochmeister et al, The Voices and Choices of Autism - An Insider View, Volume 1, Issue 1 [pp 1-121]: June, 2009, http://pekdadvocacy.com/.../TheVoicesAndChoicesOfAutism.pdf Accessed 23 April 2013






1 comment:

  1. Not to mention, those who criticize it should be willing to look just as critically at intentional hand-over-hand prompts. Also, it is highly unlikely for someone to influence the exact letter someone is typing merely by placing a hand on a shoulder or the small of one's back - sometimes that is what facilitated communication sometimes means. There is no indication that any of those tests were done on people who have progressed to a point where a light touch on the back or shoulder is all they need.
    Also, even pressing down on a shoulder may not be enough to influence the exact letter someone is typing. It would not even be as difficult as using someone who really does have a facilitator to test whether such influence is even possible.
    all it would take to determine whether it is possible to influence the exact letter someone types is to recruit a speaking volunteer to pretend to be a person in need of facilitated communication, and for the skeptic who wants to test it to try three methods of "facilitation" on the volunteer. These three methods are; pressing down on shoulder, touching the shoulder lightly, and pressing the small of the speaking volunteer's back; the volunteer's job is to try to guess, from the respective forms of touch, what letters the "facilitator" wants to type and to guess accordingly. Random letters would be best for a test like that.
    If ANY of those three aforementioned known methods of facilitation cannot be used to influence the speaking volunteer's typing via this method, then the researcher cannot honestly claim that these methods could be used to influence the communication of someone who really does use facilitation, either.
    Even if the methods being used are heavier than that (i.e. holding the hand), if even ONE person managed to get from that to a point at which influence of the facilitator is technically impossible, then you cannot technically say it is impossible either - only one counterexample is needed to disprove an absolute negative, and an absolute negative is exactly what hardcore skeptics of all forms of FC call it when they say that FC is a fraud - fraud implies complete impossibility, with not a single case working, ever, from now until we all go extinct. Even a 0.001% chance is a long way from 0%, after all. And for certain, any instances, however few, of an FC user correcting a typed letter without the facilitator's assistance, show that the user knows what is supposed to be typed. After all, "fraud", aka 0% chance, is an extremely low bar to step over for any method that has even the slightest chance of actually working. And any of those chances should be taken if it means that a person can actually have a voice of their own when otherwise they wouldn't ever be given one. After all, it can be horrible for somebody who actually is typing their words for their vice to be discredited. Not to mention, even if their voice was being "stolen", it is not as if anyone thought the disabled person could talk in the first place. The disabled person for whom all other AAC methods have been tried has nothing to lose, and everything to gain, from a method that has even the teensiest chance of working. And we really don't know what that chance is for FC, especially with the complicated research and the apparent fact that those studies have not been done with people whose "facilitation" consisted of nothing but shoulder touches or less. Given that some of it is done with methods that seem very unlikely to influence a person directly, that chance is surely greater than 0%.
    At worst, facilitated communication would probably be about as bad as operantly trained communication responses, which is exactly what ABA is all about. And ABA methods could surely train something that the person was not intending to communicate. In fact, it has; people rely on scripts and use odd signals, like eye contact as a way to say "Stop!"

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