Showing posts with label RPM. Show all posts
Showing posts with label RPM. Show all posts

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