Thursday, November 18, 2010

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.

Research Supporting FC User Authorship

The controversy with FC questions whether FC users are typing – authoring - their own words or whether facilitators are directing FC users to type.  Here’s a list of some of the studies that support FC user authorship.

Bundschuh, K. & Basler-Eggen, A. (2000). Abschlussbericht zur Studie, Getutzte Kommunication bei Menschen mit schwern Kommunikationsstotwigen. Munich: Bayerisches Staatsministerium fur Arbeit und Sozialordunung, Famile, Fauren and Gesundheit.
In a facilitator blind condition, 6 of 7 students proved they had cognitive capabilities – defined as the ability to solve multiple-choice tasks on mathematics, translations from English to German, geography, biology, and other knowledge.

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

This study involved 43 students across 10 classrooms.  The two main findings from this study are: (1) Under controlled conditions, some FC users can pass information to a facilitator when that facilitator is not aware of the information.  (2) The measurements of facilitated communication under test conditions may be significantly benefited by extensive practice of the test protocol.  This latter result could partially account for the inability of several past studies to verify FC user originated input (238).

 Emerson, A., Grayson, A., & Griffins, A. (2001) Can’t or Won’t?  Evidence relating to authorship in facilitated communication.  International Journal of Language & Communication Disorders, 36 (Supp), 98-103.

This study involved 14 participants who had been introduced to FC. “Evidence from this project shows similar findings to many of the published studies that conclude, having undertaken controlled tests that FC is not a valid strategy to use.  However, evidence from the same project also suggests that the overall picture with regard to FC may be more complex than this.  The same participants who do not provide authorship evidence in controlled trails provide data which indicate that they are authoring their communications when given the opportunity to communicate about things of their own choosing (100).

Niemi, J. & Karna-Lin, E. (2002). Grammar and lexicon in facilitated communication: A linguistic authorship analysis of a Finnish case. Mental Retardation, 40, 347-357.

Based on the analysis (i.e. the idiosyncrasy and agrammaticality of word forms and sentences), we strongly suggest that [this young man’s] output can hardly be a product of any other speaker of Finnish, including that of his facilitators. 

Sheehan, C. & Matuozzi, R. (1996). Investigation of the validty of facilitated communication through disclosure of unknown information. Mental Health, 34, 94-107. 

“Three individuals (8, 10, and 24 years old with diagnoses of autism and mental retardation) participated in a message-passing format to determine whether they could disclose information previously unknown to their facilitators.  Results reveal valid facilitated communication from each participant (94).

“The data from the current study lead us to caution that a phenomena as facilitated communication eludes a cursory exploration.  Each participant was able to disclose information accurately and deftly at times and was wholly inadequate in his or her attempts at other times… The developing picture of an individual’s validity profile replete with the patterns of required support, inconsistency, language impairment, and strides towards independence may well be the only reasonable evaluation of a validity confidence level (104).

Tuzzi, A., Cemin, M. Castagna, M. (2004) “Moved deeply I am” Autisc language in texts produced with FC. Journees internationals d’Analyse statistique des Donnees Textuelleds, 7, 1-9.

Using texts produced through FC, this work is aimed at identifying the characteristic features of the language used by autistic subjects and understanding when thee distinctive elements may distinguish it from the language of facilitators.  Preliminary results show that autistic subjects actually use a special style of writing; this finding supports the hypothesis that texts are the fruit of the individual production of autistic subjects, not inevitably by facilitators. 

Weiss, M., Wagner, S., & Bauman, M (1996). A validated case study of facilitated communication.  Mental Retardation, 34, 220-230.

“The case of a 13 year old boy with autism, severe mental retardation and a seizure disorder who was able to demonstrate valid facilitated communication is described (220).

Zanobini, M. & Scopesi, A. (2001).  La comunicazione facilitate in un bambino autistico. Psicologia Clinica dello Sviluppo, 5, 395-421.

Transcriptions of Facilitated communicative interactions between among a 7 year old autistic boy, his mother, and his teacher were studied using the Sphinx Lexica software program.  “The results show evidence of stylistic consistency but variation according to location at home or school and interaction with the mother or teacher.  The results suggest that the boy’s original and peculiar linguistic behavior may indicate a degree of linguistic independence from facilitation.”

Wednesday, November 3, 2010

Is Michael typing his words or mine?

When Michael was 8 years old, he typed sentences with his teacher’s aides giving physical support at his wrist.  Whenever Michael typed, his teacher would record it in the communication book that he took home every afternoon.  His mom would read Michael’s words, and sometimes found what he typed to be odd. 

Michael typed that he and his family went to Ollie’s (an overstock store), but they never went there.
Michael typed that he was sad because his dog died, but they didn’t have a dog at the time.

Michael’s school hired a consulting Speech Therapist from Rutgers University to assess Michael’s typing, and recommended that the teacher’s aides stop supporting Michael to type.  Given the Speech Therapist’s recommendation and given what Michael had supposedly typed, it was reasonable for mom to assume the teacher’s aides were doing more then supporting Michael’s wrist.  Maybe they were directing Michael to type their words, not his.

Eleven years later, and a few years after my agency began providing Michael services, I happened to tell Michael’s mom I was visiting Syracuse University to learn more about Facilitated Communication (FC).  She didn’t know the term, but when I told her that someone gives physical support to a nonspeaking person so that they can type to communicate, she was quick to tell me about Michael’s history with typing.

I was curious why Michael would have typed something that wasn’t true.  Maybe there was another way the Speech Therapist could have viewed the situation when Michael was 8 years old.  I learned from Marilyn Chadwick at Syracuse there is another perspective to consider when non-speaking individuals, especially children, type false statements.

It’s not uncommon for young children to make up fantasies, even lies, and talk openly about them to us.  Children who speak are part of a verbal community of people who help them understand what makes up appropriate conversation.  Children who speak slowly learn the difference between a fantasy and a lie, because people around them have lots of opportunities to teach them.  Children, adolescents, and adults who are nonverbal don’t have the luxury of being guided to understand the rules of conversation because speech isn’t their primary way of communicating. 

When a nonverbal individual learns to type to talk, we have to be open to reading/hearing whatever they have to say, just as we do when listening to a person who speaks to us.  When a speaking person talks to us, we listen to what they have to say out of respect.  When a speaking person makes a false statement, we don’t discount whether he/she can speak. At most, we might explore why the person lied.  However, when a non-speaking person types a false statement, we conclude the person’s entire ability to communicate with typing is false.  It’s unfortunate how we put them in the position of having to prove that they really do have a voice.  More then that, they have to prove they are more competent than they appear.

There is always the chance that a well-meaning parent, teacher’s aide, family member, or care-giver will want a nonverbal person to speak so badly that she/he will deliberately or subconsciously guide the person’s wrist to influence what’s being typed.  Because there have been research studies in the 1990’s indicating that nonspeaking individuals were being led to type the words of the facilitators who supported them, educators and other professionals are taught to believe facilitated communication is controversial. 

When educators and professionals assume the research depicts a completely accurate picture of FC, they convey their doubts to parents and others who view it as a possible intervention for the nonverbal individuals in their lives.  Plus, these same educators and professionals may unknowingly be unable to step away from their belief about a particular nonspeaking individual.  They may be too invested in believing that person is not competent enough to type coherent sentences let alone have original thoughts to share.  It is this culture of skepticism that leads a non speaking individual who types to talk with the help of a facilitator to assume the burden of proving the typewritten words came from him/her.
Michael and I have practiced diligently over the last five months to develop the partnership he needed to type effectively.  If researchers had “tested” us during the first three months of our practice sessions, I wouldn’t have been too confident in the outcome.  I’m glad we weren’t tested earlier because the results might have discouraged both of us.  Instead, I have kept showing up for our sessions, and so has Michael.  In fact, as soon as I walk in the door, Michael quickly walks to his room to sit in the chair in front of his iPad.  There are times when he even greets me at the front door smiling.  He knows I believe in him, and he has said as much.  Last week on October 21, 2010, I knew he was ready…

S: I have an idea that will help you and me get even better at typing together. This idea will also show other people that you really are the one typing your words... not me pushing your hand around. What do you think?
M: I want you easy to show that I am typing.

S: Grandmom will write a word on the white board and only show the word to you so I can’t see it. (His grandmother wrote the word and Michael typed it.)
M: slow the word was slow

S: Excellent.  Now Grandmom will write two words (and only show them to Michael).
M:  eat dinner

S: Great.  You did it again.  Now Grandmom will write three words (and only show them to Michael).
M:  mom works hard

Then Grandmom wrote a fill in sentences (and only showed them to Michael).
M:  the house is and the house is you
M:  my favorite movie is Thomas the tank engine
M:  I like to play to on playstation
M:   pop reads the book

S: Now Grandmom will tell you to type a word, but she’ll whisper in your ear so I can’t hear what she wants you to type,
The first word she whispered that Michael typed was
M:  dog

Then Grandmom whispered the word bread, but Michael had trouble processing it what she said.  This makes sense because Michael is better with visual rather than auditory processing.  Grandmom repeated the word and Michael typed it correctly.
M:  pen
Grandmom whispered another word and Michael typed it correctly.
M:  door

S: Michael, I’m going to say a word to you and I’d like you to type it all by yourself without my help.
M:  Michael
M:  Tony
M:  money
M:  luke (his dog’s name… Michael needed help spelling it)
M:  popcorn

S: Excellent! Now type any word you want to without my help.  (There was a long pause so, I rubbed his head and told him to think of a word in his brain and then type the word.  He then typed his word without my help.)
M:  hair

S:  WOW one day soon the words are going to flow out of your brain and your heart without needing much support at all and we'll help you all the way.

S: I want to try one thing.  Can you do a fill in sentence all by yourself?  The fill in sentence was “eat the_____.”

Michael typed the prompt words without my support.
M:  eat the

There was a long pause.

S:  Michael think of a word that you can add to the sentence and then type it all by yourself.
M: hot dog

S: Perfect Michael!  You typed that sentence all by yourself.  We’re going to keep practicing so you’ll need less and less support from me or anyone else to help you.  You're terrific Michael!
 ... ... ...

Back in August, Michael completed another fill in sentence:

M: When I think about typing to talk I wish I could do it do it when I was a little kid.