Who is an Independent Typer?

Since it was introduced in the 1970’s, facilitated communication has developed a following of parents and professionals who view it as helpful to non-speaking individuals with disabilities such as autism.  Some of these parents and professionals describe that FC users construct complete sentences and paragraphs, hold open conversations, write poetry, chapters in books, and obtain bachelor’s and master’s degrees.  By the conventional standards, many of these individuals don’t appear to be competent enough to ever achieve this kind of accomplishment, yet to the parents, professionals and the individuals themselves, these accomplishments are real and indisputable.  These same parents and professionals acknowledge that there would be no dispute if an FC user could type without physical support from a facilitator and be identified as an independent typer.  In the meantime, knowing that independence is the primary goal, they have no hesitation in continuing to support FC users to share their voices in the interim. 

Until you meet FC users in person, it’s easy to suspect that the parents and professionals who believe the FC user is capable of typing sentences and paragraphs are deluding themselves.  It’s possible to conclude the parents and professionals are projecting their hope that non-speaking children, teens, and adults can finally speak using an intervention that’s been called everything from a hoax to pseudoscience.  If you adhere to the predominant research about FC, you might discount the entire experience as lunacy or at least a sad example of the extremes parents will go to save their children.  However, if you meet an FC user in person, you might have second thoughts about your disbelief... unless you adhere, without question, to the predominant research.

There are a number of studies involving individuals using facilitated communication who have not been able to demonstrate that they are typing their own words.  These studies have contributed to the American Psychological Association’s decision to adopt its resolution dated August 14, 1994 which takes “the position that facilitated communication is a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy”.

However, there are also a number of studies of well-controlled and carefully designed studies involving individuals who were able to demonstrate that they are typing their own words.  I’ve outlined some of them in my blog post called: Researching Supporting FC Authorship.  It is these studies along with testimonies of actual FC Users that contributed to FC being added to the TASH Resolution on the Right to Communicate (click Communication Rights).  TASH is an association of people with disabilities, their families, advocates, and professionals, which has supported equity, opportunity, and inclusion for people with disabilities since 1975. 

TASH’s Freedom to Communicate states that no person should be able to veto the augmentative or alternative communication which another person has chosen to use.  This includes all forms such as communication devices, specially adapted keyboards and pointers, computerized equipment, picture and sign systems, gestures, sign language, and facilitated communication.  In any instances where such use is forbidden, there should be recourse to the legal and protective systems.  People with communication disabilities must be allowed to use the communication system of their own choice in all communication interactions in any setting. 

One publication speaks directly to the controversy:

Beukelman, D.R. & Mirenda, P. (1998).  Augmentative and alternative communication: Management of severe communication disorders in children and adults.  Baltimore: Paul H. Brookes Publishing Co., 327-329.

“Sahrisa (a facilitated communication user) joins a small group of people around the world who began communicating through FC and are now able to type either independently or with minimal, hand-on-shoulder support.  There can be no doubt that for them, FC ‘worked,’ in that it opened the door to communication for the first time.  In addition, hundreds (or even thousands) of individuals use FC with physical support.  To many observers, it does not seem clear whether or not these individuals are authoring their own messages.  Thus, FC has become controversial and hotly contested as a valid and reliable technique.  We include FC here because of Sharisa Kochmeister, Lucy Blackman, Larry Bissonnette, and others who now communicate fluently and independently, thanks to FC.  For them, the controversy has ended” (p.327).

Wikipedia's entry on facilitated communication has a comprehensive list of research studies and publications, a majority of which do not support FC user authorship.  The entry, however, includes the topic of independent typing which describes when a FC user is able to type without physical support from another person.  A main principle of FC is that the user is given the support he/she needs to develop more efficient pointing skills, but that the support is systematically faded so the user can type independently.

In the section subtitled “Independent Typing” the Wikipedia entry cites a statement from the following article:

Calculator, S.N. (1999). Look Who’s Pointing now: Cautions Related to the Clinical Use of Facilitated Communication. Language, Speech, And Hearing Services in Schools. 30 (October) 408-414

Critics complain these cases (of independent typers such as Larry Bissonette) have not been objectively verified.  Such verification is absent in peer-reviewed studies.  

The paragraph in Wikipedia goes on to read:

However, a few individuals have in fact been cited as independent typists in independently reviewed publications:

Broderick, A.A., and C. Kasa-Hendrickson (2001). “SAY JUST ONE WORD AT FIRST.” The emergence of Reliable Speech in a Student Labeled With Autism. JASH, 26(1). Speaking of Jamie Burke

Tony Atwood; Lucy Blackman (2001). Lucy’s Story: Autism and Other Adventures. London: Jessica Kingsley Pubslishers. Speaking of Lucy Blackman

With the presence of independent typers who were initially supported to type using facilitated communication, we cannot say that FC has never worked for anyone.


 

In May 2006, Claudia Wallis from Time Magazine published her article "Helping" Autistic People to Speak in which she described her attendance at a conference in Syracuse University about Facilitated Communication.  She wrote about meeting Jamie Burke, an independent typer.  She also met  Chandima Rajapatirana and other FC users.  She wrote about how she tried facilitating Tracey Thresher to type.  “At no point did I feel that I was leading him toward the keys, nor did I know the answers to the questions I was asking him.  He answered some clearly and others less coherently”.  Wallis spoke to James Mulick, professor of pediatrics and psychology at Ohio State University and co-author of research debunking FC.  She asked him what she should make of what she saw and experienced at the conference in Syracuse.  Mulick replied, “You were simply being deceived. But don’t feel bad. Even some behavioral scientists have been deceived.”  



I attended a similar conference about FC at Syracuse University in 2009.  I met Jamie Burke, Tracey Thresher, Sue Rubin, Larry Bissonnette, Kayla Takeuchi, and many other FC Users.  My encounter with them led me to create a video about Kayla Takeuchi because I saw for myself how - in their case - their lives were transformed by facilitated communication. 



I recognized that it would be easier if FC users quickly and naturally became independent typers.  There would be no controversy.  Even after meeting them. I maintained my profession reservations at viewing FC as a valid intervention because it is clear that parents and professionals might be deliberately or subconsciously driven to pretend they were facilitating an individual to type, not typing for them.   But, what if it is true that there are facilitators who, given the right training and guidance, can and do remain objective?  Do I have the right to say that parents should not attempt to use FC as a possible intervention… especially since I’ve personally spoken with FC users… users who type independently? 
I met Marilyn Chadwick, a speech therapist who specializes in FC at the 2009 conference in Syracuse.  She later agreed to conduct assessments on 6 of our 100 clients.  Michael’s mom wanted to find out whether giving Michael physical support would help him learn to type to communicate.  Michael used to type with the support of his teacher’s assistants when he was 8 year old.  His school administrators made his teacher’s assistants stop.  Now over 11 years later, Michael is typing again, and we continue to use Marilyn Chadwick's professional guidance to keep us on track.



I decided to become one of Michael’s facilitators because I wanted to experience the process for myself and support Michael to the extent he benefitted from it.

• After months of working with him twice per week and watching him literally run to his iPad to type to talk, there’s no way I could say he isn’t enjoying the activity.  Michael is not a person who can be forced into doing something he doesn’t want to do.
• After months of feeling him pull away his arm from me when he’s finished typing a statement and then giving his arm to me when he’s ready to type another, I cannot tell him I will no longer be there to support his arm to type. 
• After months of watching Michael’s eyes scan each letter he types on the keyboard and pause to think before he types another word, I cannot tell him that I disbelieve he’s typing. 
• After months of feeling Michael guiding my hand (not vice versa) to each letter to type, I cannot say he is not typing his own words.
• After months of watching Michael smile when he starts typing something funny, I, as well as his mom and grandmother, know he has a terrific sense of humor.
• After months of typing with Michael, his behavior has changed.  The intensity and frequency of his meltdowns have decreased. 

And two final thoughts:

• Michael and I will continue to undergo “message passing” tests to show that he is the author of what’s being typed.  He is enthusiastic during these “experiments” because, he says, he wants people to believe him. 
• Michael is starting to type words and answers to questions without physical support from me of any kind.  The vision is that is he becoming an Independent Typer.