I’ve wanted to write about facilitated communication for a while now, but am particularly motivated to do so now because of something that happened recently to Amy Sequenzia. I interviewed Amy in September. To read that interview on the Huffington Post click ’here‘. Last week Amy was interviewed by the Thinking Person’s Guide To Autism specifically on the topic of facilitated communication, you can read that interview ‘here‘. A commenter questioned how it could be determined who, in fact, was typing Amy’s answers, Amy or her facilitator. Amy then wrote a post published on Ollibean titled: I, too, want to understand. Amy writes, “I want to know why some people choose to discredit one method of communication, without learning the reality of the method and the people who benefit from it, instead of supporting broader use of all methods of communication, helping to create accountability and improve best practices.”
I decided to ask Douglas Biklen who is Dean of the School of Education at Syracuse University and author of one of my favorite books, Autism and the Myth of the Person Alone (Biklen, 2005, NYU Press) about all of this. I asked Doug how he responded when people express skepticism regarding FC. He said, “Ariane, on our website you will see a review of some pretty substantial studies that confirm the validity of facilitated communication. You can find these at this location:
http://soe.syr.edu/media/documents/2011/6/Research_Supporting_Authorship_version_22.pdf
Obviously the method can be done well or it can be done poorly. When done well, individuals move to greater levels of independence, in other words being able to type with little or no touch, being able in some cases to speak before and as they type or to read aloud what they have typed. You can see this in some of the documentaries we have made, including “Inside the Edge”
http://soe.syr.edu/centers_institutes/institute_communication_inclusion/About_the_ICI/Videos.aspx
and “Wretches and Jabberers”http://www.wretchesandjabberers.org/“
I don’t know that going to these various sites will completely sway those who are convinced FC is an invalid method of communicating, but it certainly is a start for anyone interested in FC for their child or who are curious about it. For the sake of full disclosure I also found this article, Facilitated Communication – What Harm it Can do: Confessions of a former facilitator. It is a very disturbing account of a facilitator who influenced the person they were meant to help and did tremendous harm and damage to that person and their entire family. But the conclusion, to reject FC as a valid method, is not one I can support. There are a great many people doing all kinds of things (not just working with Autistic people) who should be better trained, who should not be working in the field they’ve chosen because they are not suited for it, are not able to see how they are influencing their work or the “studies” they’ve conducted or have enough distance or perspective to see how their “interpretation” is not “scientific evidence”. A few extremely well-known and influential psychiatrists who currently work in the field of autism leap to mind. These people have done tremendous damage to Autistic people because of their assumptions, inferences and the way they’ve interpreted data based on their neurotypical thinking about a group of people who are NOT neurotypical.
Two years ago we began to teach Emma how to form the letters of the alphabet. Up until that point, no literacy method we tried worked. But when we gave Emma physical support, by holding her forearm and even in some cases by using direct hand over hand support in helping her form the letters of the alphabet, she was able to progress. From there we began to teach her, coupled with sequencing exercises, written and spoken demands, such as “give me the duck” from a field of five manipulatives, she was able to do so. At the same time we taught her the letters on a typical keyboard and again used physical support, which slowly over many, many months we began to withdraw until after a year or so she no longer needed it and now two years later types and writes independently. Had we not used this method Emma would not be typing and writing independently.
As Amy once said to me, “Being skeptical is okay.” And as Doug wrote me, “regarding those who see the evidence in studies that validate facilitation or who see the documentaries where people type with little or no support, and yet still criticize or doubt the method, all we can say is that they need to be more open to the evidence.”
Emma’s unassisted handwriting and self portrait – 2012
