Friday, December 31, 2010

Applying the Back Up Plan to Another Situation

Michael got angry yesterday when a DVD wouldn’t work and his mom couldn’t fix it.  Michael’s mom told me that Michael accepted her suggestion to watch a different DVD.  That was good news.  People with autism, in particular Michael, aren’t easily redirected away from what they demand.  We call this “having trouble with transitions”. 

Michael got angry today, though, for a different reason.  The “Marty Stouffer’s Wild America” DVD set hadn’t arrived in the mail yet.  It wasn’t that a DVD couldn’t be fixed.  This time, the DVD wasn’t in the house for him, and it wouldn’t be until next week.  Now we had to explain that he could use a back up plan in this situation, too, not only when a DVD couldn’t be fixed.  We had to help his brain make the leap... or at least consider it.

S: You heard your grandmom and mom talking about you getting so angry today?
M: I think I was that way because I can not have that DVD that the funny think that the DVD has not get that time I need so I get angry

S: Grandmom and mom told you it will come either tomorrow or Monday or Tuesday.
M: Yes

S: So why stay angry?
M: That is that truth byes that is the truth but I can not stop being that way fit yes I have I have fit that I get that way I get very very very angry

S: I understand you have a fit of anger. The problem is that you make everyone else angry too and get them upset.
M: I think I am help them to understand me that I am angry

S: Yes I understand that you want to help them know that you are angry but you can let them know in just a short few minutes. instead you let your anger out for a very long time.
M: I think I really really really think that no body care in the first first place

S: They do care. It may not seem that way at the time. Mom ordered the Marty Stouffer Wild America DVD seasons one through twelve. You have to wait. If mom didn't care she wouldn't have ordered it.
M: I think that you think that the DVD is coming good to hear that but I want it really really really a lot you understand how I think right

S: Why not watch the Marty Stouffer VHS tapes you have until the DVD comes?
Can you go get the Marty Stouffer and his Wild America VHS tapes?  Mom doesn’t know where they are in your big collection of tapes and DVD’s.
M: Yes

He went into his room, looked around for a minute or two, and then walked back to the iPad with two Marty Stouffer VHS tapes.  He put them on the table and sat down to type again.

S:  Thank you Michael.  Here you had the ability to watch the Marty VHS tapes and instead you let yourself feel really really really angry and let your mom and grandmom be upset for all that time.
M: I think that you are you that know then I feeling get the DVD

S: And in the meantime while you wait for the DVD to come what will you do.
M: I watch the VHS tapes

S: That's what's called a back up plan. You are doing something else so you won't have to stay angry and you won't upset mom and grand mom.
M: That is a back up plan

S: But what happens if grand mom or mom says what's your back up plan while you are angry? you can just get more angry at them.
M: I think that happens the I that you get that the way to handle that is to tell me to the room so I can get calm.

S: So do you think this idea will help you?
M: think it will

Thursday, December 30, 2010

Michael Agrees to Have a Back Up Plan

Maybe it’s the change in seasons or maybe Michael needs an adjustment in his medication, but for whatever reason, Michael is experiencing another cycle of destructive and aggressive “episodes”.  That means his family has to endure his cycle, too.  This time around though, we can help him type to talk about his anger in ways he couldn’t express before.  Our intention during our conversations has been to help him develop a greater awareness of his beliefs, feelings, and behaviors and to support him to come up with ways that he can handle difficult situations using his more productive thoughts and strategies. 

One of his major stressors happens when his mom can’t get a DVD to play.  He’ll hit the wall, throw his computer monitor or computer, and as a last resort, he’ll hit his mom.

S. So do you understand that sometimes mom and grandmom do not have the ability to give you what you want?  They can’t always fix a DVD to make it play.
M: yes

S. What can we do to help you to understand that before you get out of control?
M: I think they get want that I need I that will get calm

S. I see that you think you need the DVD to be fixed in order to calm.  You are going to need a backup plan.  Do you know what I mean?
M: I think so

S. A back up plan is when you can't get what you really really really want so you agree to get something else in its place.
M: Right then I will have a back up plan
S. When mom can't get a DVD to work what is your back up plan?


S. Let me see if I can help you understand.
M: ok

S. If the DVD won't work what will you do?
M: Then I ask mom to fix it you I play the DVD

S. If mom can't fix the DVD what will you do?
M: I think I will much angry

S. Ok that is true.  Remember, though, you can be angry but you need to keep your hands to yourself and off the monitor and computer and TV.
M: That I easy if the DVD get fix get easy calm

S. I understand that you swear you need the DVD to be fixed in order to be calm but if you always depend on the DVD to be fixed and it can't be fixed you will be stuck feeling angry and lousy.  Would you like to be calm even if the DVD can't be fixed?
M: yes

I believe Michael may have made somewhat of a breakthrough.  I believe it has never occurred to him that he didn’t absolutely have to have the DVD fixed in order to get calm. 

S. What if mom reminded you that you want to be calm even if the DVD can't be fixed?
M: I think that sounds all right good have that feeling even when the DVD can’t be fixed

S. So if the DVD can’t be fixed and since you want to get calm you need to let mom and grand mom remind you to do something else to stay calm. That is a back up plan.
Examples of back up plan choices are go on YouTube, watch TV, play x box, play a different DVD, eat a pretzel, drink some milk, rest for a while in your recliner.  These are choices of a back up plan. Doing one of these choices will help you get the calm feeling if things don't go exactly the way you want. The lights might go off or the DVD might not get fixed... but you can stay calm.  What do you think?

M: I think that sounds have to really really really get back up plan you understand I you really really really trying to help me

Thursday, December 23, 2010

Michael’s typing is inconsistent but informative.

November 9, 2010

S:  do you know that you have a dermatologist appointment tomorrow?
M:  I want to and really really really to right not go.

S:  I know you don't want to go but the doctor needs to look at your face and your chest. you really really really have to go.
M:  type this that I do not want to be at the doctor tomorrow I want home you understand.

S:  it's really not an option. you have to go. why not take your squeeze ball and squeeze the whole time?
M:  I want to talk the palm look have you your house.

S:  my house isn't really that interesting trust me. let's just figure out a way for you to feel comfortable going to the face doctor tomorrow. we know that going to the doctors is not fun for you. tell us where you would like to go after the doctors so you can look forward to something fun.
M:  I easy gets have remember the thomas the tank engine that I want today them I can have the one I want. Thomas the tank engine.  the title is help me get he's you the Thomas the tank engine.

S:  unless you can give us the title you are going to have to give us another idea... like why not go out for lunch with mom maybe macdonalds.
M:  ok

S:  the plan is you'll go to the doctors and then to macdonalds with mom. ok?
M:  ok

Mom emailed me the next day.  Michael went to the dermatologist.  He was much more relaxed while he was there.  He let the doctor examine him without being restrained in any way.  He and his mom and grandmother went to MacDonald’s afterward.

December 2, 2010

S: elephants noses are like straws. they suck up water or milk. what do you know about straws.
M:  straws are for drinking

S: do you know how to use a straw?
M:  yes

S:  which do you like better? drinking milk from a straw or just drinking with your mouth?
M:  I like drinking milk with mouth

S: do you use a straw or your mouth when you drink soda at friendly’s.
M:  straw

S:  I hear you love to drink milk.  do you like the taste or something else about milk?
M:  I like the taste.

S:  you certainly are talkative today. what makes today different than the last couple times we typed when you didn't seem to want to type clearly?
M:  I am more aware of my thoughts and so I can type what I want to type you understand what I am saying Steve

S:  so if am I hearing you right, somedays your brain is cloudy so it's harder for you to concentrate. can you tell me more about what it's like when your brain is cloudy?
M:  yes talking is harder when I can not think as in the way I am doing now

S:  wow. I understand. is there anything we can do to help your brain get unclouded when its cloudy?
M:  the is and in that I can stay that way for about three days and the clouds go away for a while and I can think for a while that is what I can tell you for now

Wednesday, December 22, 2010

Supporting Michael to Express Original Thought

I type with Michael for one hour two times per week.  His grandmother types with him for shorter periods on days when I’m not there.  When I arrive, it only takes a minute or two for him to pull himself away from watching Thomas the Tank Engine, his number one passion, and sit down in front of his iPad.  We’ve developed a routine for our time together.  He completes “set work” the first half and then he engages conversation with me for the rest of the session.  I create the set work, which for him is essentially a series of short worksheets, based on the level of understanding Michael has illustrated in the prior session.

Michael is for the most part consistently accurate when he completes the work sheets.  In the beginning, he needed my physical support to type every answer.  Now he types the answers independently.  His mom and grandmother are always in the room with us when Michael types, and they are as amazed as I am that Michael gets the answers right.  He’s been given the same kind of “circle the right answer” work in school for the full 15 years.  None of his school work involves him typing words on a keyboard. 

No one figured out until now that Michael has a greater capacity to think.  I wonder how different his life would be now if someone discovered they could have challenged Michael.  In order to do that, they would have likely needed to trust that by giving him physical support to help with his motor planning while he typed, it would have directed him to access his brain to expand his use of a keyboard.  They would have had to explore Facilitated Communication as a possible intervention. 

Michael could already copy words and sentences, but he couldn’t fill in the blank word from a list or give a one-word answer from his own thoughts.  After typing together regularly for the past 6 months, Michael can now generate a one-word thought and type it on his own.  Michael’s most recent display of his intellect involves him copying a sentence and filing in the last word.

For example, I give him the sentence “when I think of the word girl the first word that comes to my brain is ______” and he needs to copy type it and fill in the blank. This is a copy of his latest work:
  • M.  when I think of the word girl the first word that comes to my brain is friend
  • M.  when I think of the word book the first word that comes to my brain is read
  • M.  when I think of the word hat the first word that comes to my brain is head
  • M.  when I think of the word library the first word that comes to my brain is book
  • M.  when I think of the word iPad the first word that comes to my brain is type
  • M.  when I think of the word snow the first word that comes to my brain is white

It may not seem like a great accomplishment, but Michael has been treated as though he’s not capable of creating original thought.  It’s been assumed that the most Michael could do is shake his head to acknowledge what he wants from choices that others suggest for him, choices that center around food items, movie titles, or tasks that he needs to complete.  He can also point to picture symbols, but his collection of symbols is small.

Now he is being given the chance to express his personal thoughts… and he is showing us that he has personal thoughts.  Copy typing is not seen as a means to generate self expression.  That makes sense… it doesn’t require must thinking energy to type someone else’s words.  Michael has been able to copy type long before he and I started to type together.  I decided to pair his ability to copy type sentences with a fill-in-the-blank.  This way, Michael gets to complete a task he can do independently as well as illustrate his intelligence by adding the “one-word answer” without needing physical support from someone else to type. 

I can’t overstate the importance of Michael’s accomplishment.  Before we started giving Michael added physical support to type, Michael only used the keyboard to ask his mom to download episodes of Thomas the Tank Engine by copy typing the titles from YouTube.  He is developing skills that only a few people in his life suspected he had.  He continues to surprise us.

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.

Tuesday, October 26, 2010

Typing can develop abilities other than communication.

“Set work” is the term for the structured typing practice sessions that helps both the typist and the person who is supporting the typist. There are stages of set work that direct the non-speaking person to complete various tasks ranging from identifying pictures using type-written words to making open conversation by typing full sentences.  Michael and I have mastered most of the stages of set work together. 

It seems to help Michael when I start our sessions with a “fill-in-the-blank.”  I write the statement.  Michael “copy-types” it and then completes it with his answers. 

The topics I want to talk about today are _________ and __________. 

Michael completed the statement with: afraid and shave.

S: What are you afraid of?
M: I want to say that I am afraid of Tony shaving me.
S: Who do you want to help you shave?
M: Steve
S: Ok.  I will help you shave tonight.  Is that okay?
M: Yes

Kayla Takeuchi (Kayla’s Voice: empowering people with autism at has been typing talk since she was 16.  She is on her way to graduating from high school and plans to attend college.  She persevered even though some people didn’t believe she had the skill to type her own words.  These people, even professionals such as Speech Therapists suspected her facilitators were moving her wrist for her.  Today, after years of practice, Kayla can type independently.  She occasionally gets stuck and needs the light touch from her facilitator. Once assumed to be “mentally retarded” by school officials and incapable of learning, she has shown us that for her, instead of leaving her completely cognitively impaired, autism has affected her ability to coordinate her body. 

Not too surprisingly for most of us, Kayla discovered that she became better at typing the more often she typed.  What is perhaps more surprising is that she became better at activities that require the use of her hands.  She enjoys hobbies now, and jewelry making is one of her favorites.    She’s able to thread various sized beads, even the smallest ones.  She says that typing helps her to feel more organized – clearly on many levels.  It has afforded her a greater life.

I shouldn’t have been surprised when Michael began shaving himself more efficiently.  His typing seems to be allowing him to use his hands in ways he hadn’t before.  For example, he can now cut his hot dog into small pieces.  Many of us wouldn’t see this as a great accomplishment, but it is for someone whose mom has had to cut his hot dogs his whole life and who wants to be more independent. 

I could never completely understand why Michael would allow some people to shave him and not others.  As with most of Michael’s “challenging behaviors” people tend to see Michael’s outbursts as him being oppositional, or at least trying to get out of something he just didn’t feel like doing.  When he would punch a hole in a wall or when he slaps a table or wall to create a loud bash, it’s not a stretch to hear yourself thinking: “he is being noncompliant” or more to the point: “he’s being a brat.”   That is, until you remember that all of us use the way we behave as a way to communicate.

When Michael typed that he was afraid of having Tony shave him, I realized the number of times many people in his life – including me - misunderstood Michael.  What if every time Michael acted out, we first thought, “I wonder what he needs” rather than jump to conclusion that he was being cruel just for the fun of it.  Before he could type his issue with shaving, he acted out his feeling by doing all he could to resist being shaved.  Once he could tell me that he was afraid, I not only could address his fear, but I could acknowledge it. 

So when I went into the bathroom and started shaving him, I wondered what he might be afraid of, and it came to me.  If we use light pressure with the electric rotary shaver, Michael’s longer whiskers get caught in the blade.  I know the feeling, and I don’t like it either… but I still need to shave.   I “problem solved” with him.  I showed him how to wet his face to soften the whiskers, and I showed him how to push the shaver closer to his face on his own.  When someone else is shaving you and they’re being tentative, there’s more chance that the rotary will catch whiskers especially under the chin and jaw line.

One week later, I watched Michael shave.  He is no longer afraid to push the rotary firmly against his face.  More than that, because he is less fearful of the blade catching his whiskers, he will shave areas of his face where he wouldn’t before – as long as he given support.  He has trouble looking in the mirror and shaving under his jaw because he gets disoriented.  Much like supporting him to type, if you touch the area on his face with your index finger, he can “feel” where to take the shaver.  Though he needs support from another person, he can handle the actual task of shaving on his own.  Not surprisingly, Michael doesn’t resist shaving any more.

Michael represents one of many people with autism that I’ve met who use typing to talk.  The more I speak to them, the more I realize how we perpetuate misunderstanding of nonverbal individuals by assuming that they are more “autistic” than human.  

Friday, October 22, 2010

A confrontation at Michael’s school

Michael, Tony and I were in a small conference room near the main office.  It was my first training session to help Tony understand how to give Michael the physical support he needs in order to type effectively.  After about 45 minutes, our time was almost up, and I had asked Michael if he had anything else he wanted to tell us.  I began supporting him to type, and I heard a voice from behind me.  “What is he doing?”

I looked over my shoulder and saw one of the school professionals.  I told the person that Michael’s using typing to talk.  “Michael, do you have anything you want to say?”  Michael started typing: I am very ha. Then he got stuck on the double p’s and began alternately typing the backspace and the p to correct himself. 

She said, “He has no idea what he’s doing.”

I was shocked – not necessarily that she didn’t believe he was typing his own words but that she would make such a statement and use such a derogatory tone right in front of Michael.  She’s known him for some years now.  It seems she was sure he wasn’t capable of thinking.

Stunned, I said, “You really think he doesn’t know what he’s doing?

She replied, “Yes.”

I repeated myself again.  “You really think he doesn’t know what he’s doing?

“Yes.  You’re doing Facilitated Communication aren’t you?”

“I’m supporting Michael to type his thoughts.”

She quickly came back, “Don’t you know about the research that says Facilitated Communication doesn’t work?”

“Don’t you know about the research that says it works for some people?  And I’ve met some of them.  I recently met a nonverbal 36 year old man with autism who started typing at 15 and now he travels to tell people it worked for him.  I’ve met others who’ve gone on to get their Masters Degree.” 

“Well, they had the cognitive ability for that.”

 “Michael has cognitive ability, too.”

I turned to Michael and his iPad. 

“Michael, type yes.”  He typed yes without my physical support.  “Michael type no.”  He typed no without physical support from me.  And then he typed mom and Tony without my support when I asked. 

Michael’s demonstration seemed to pique the woman’s interest. 

I continued.  “Michael learned how to type those words on his own after having 35 sessions together with me giving him physical support.  Our goal is that he will type all of his words on his own.  He needs our physical support to type now so his brain can have a chance to practice coordinating his thoughts with the movements his body needs to hit the correct keys on the keyboard.”

She sounded curious.  “Oh, he’s learning how to type.  That’s how all of us learn to type.”

“Yes.  I found out Michael had this skill when he was 8 years old, but someone from Rutgers’s University said Michael’s aides were moving his arm so the school stopped allowing Michael to practice.”

I don’t remember her exact words, but she said something like “Well that shouldn’t have happened.”

She got called away from someone in the hall.  “I gotta go.  I’ll have to check up on that latest research about Facilitated Communication.”

When she left, I asked Michael if he wanted to say anything about what just happened.

And Michael typed, “I want to say she is very wrong and I am not happy with her because she did not believe not believe that I can type she is the one who can not type.”

A walk through Michael’s school

Last week, the IEP team agreed that Michael could try using his iPad or Neo (keyboard) at school to communicate.  Yesterday, because Michael mom requested that his teacher allow me to visit Michael’s classroom, I helped Michael type on his iPad to communicate.

His teacher was apparently aware that my purpose for being there was to teach Tony how to use less pressure when he supports Michael’s wrist as Michael types one letter at a time.  I never used the term Facilitated Communication during the IEP meeting, but everyone including his teacher witnessed Tony hold Michael’s wrist as Michael typed.  My conversation with the IEP team was all about how we can fade the amount of support we give him depending on what he can do on his own.  For example, when he copy types, he only needs someone to lightly touch his elbow, but he needs someone to hold his wrist when he’s typing his original thoughts.  The goal is always that he will type on his own, independent of physical support from others.

When I reached Michael’s classroom, his teacher continued to be supportive of my helping Michael to communicate.  She suggested that Tony, Michael, and I find one of the available empty rooms in the school so we could concentrate.  Plus, Michael’s classmates needed the classroom for other activities. 

As I walked though the school halls, I remembered how much I admire educators and paraprofessionals who work with special needs students.   Michael’s school provides educational services to students in need of all sorts of supportive accommodations – from those stemming from orthopedic to neurological to genetic conditions – that affect mental, emotional, and physical ability.  The first time I visited this kind of school, I thought the people must be angels.  Their job is an incredible responsibility and it requires endless patience.  It also requires open-mindedness because you have to be creative in finding ways to teach someone who can’t easily understand you.

Truthfully, some of these students may never understand or perform past the level of what’s called “lower functioning”.   But how can we be certain which students have the capacity to perform to a higher functioning level and greater? Sue Rubin ( was thought to have an IQ of 24 before she was introduced to Facilitated Communication.  She is currently a senior in college. 

We often judge students by the way they appear… as they drool and or hobble down the hall.  I wondered how many other students there might be as aware and capable as Michael and yet have never been given the chance to reveal their intellect.  Out of a school of let’s say 300 students, maybe none, but maybe one or five or fifteen or fifty.  Of course, that’s the reason we rely on research-based evidence that substantiates the statistical validity of educational and behavioral interventions.  If the research says the intervention “works”, than it’s ok to use it to teach students.  Some professionals stand by the following reasoning: If the student doesn’t learn, it must be the student’s lack of ability.  I’ve come to wonder if we haven’t done enough to question the validity of research. 

So Tony found us a small conference room in the main office.  After typing a few sentences with me, Michael typed, “I want to type with Tony now.”  Tony hit the ground running.  He had already attended a few trainings with Marilyn Chadwick from Syracuse, New York, and he knew the principles of FC.  He already understood that he needed to pull Michael’s wrist away from the keyboard between each letter.  Now Tony needed to understand how to ease up on the pressure so that Michael could initiate the movement to the next letter.  All Tony had to do is to feel Michael taking the lead.

I saw an aha moment in Tony when Michael’s work sheet said “3 types of colors are _______”  and Michael typed the letters y and then e, which are on the left side of the keyboard.  Because Tony had less pressure on his wrist, Michael was able to direct his own arm – with tony supporting it – to the right side of the keyboard to type the letter l. 

Wednesday, October 20, 2010

Michael now types a few words independently.

I knew Michael could “copy type”.  He would type out the titles of episodes of Thomas the Tank Engine he saw on YouTube and then bring his keyboard device to his mom as his way of asking her to download the episode.  Some people wonder why if he is able to “copy type” this way, then why can’t he type his thoughts independently, too.

Think about it.  Suppose you were given the following option. Either “copy type” three paragraphs about the benefits of believing in a God that were already written by someone else or compose three paragraphs about the benefits of believing in a God using your brain as your only resource.  Then suppose you were told you had 20 minutes to complete the assignment.  Which option would you choose? 

The point is that a non-speaking person who hasn’t been given the support to coordinate his/her body to type effectively experiences major writer’s block… writer’s block times a million.

As I type this paragraph, I’m noticing I’ve taken my writing ability for granted.  I’m not extolling my ability to write fantastically literate paragraphs.  I’m just noticing the mechanics I use to express myself through.

I can say the word to myself that “appears” in my brain and simultaneously coordinate my arms and fingers writing to move to type to put my thoughts into form. 
A non-speaking person with autism or other neurological disorder does not have this luxury.

While Michael and I were at the mall last week, after we bought our movie tickets, we had time to walk around with his mom.  We walked through the bookstore and stopped at the greeting card section.  Michael touched one of the stands of cards, so I put his iPad in front of him and asked him if he wanted to look at the books or the cards.  I waited for him to extend his arm to me as his signal that he wanted my support to type his answer.  Instead Michael extended his index finger and typed books without any help from me.  His mom and I were shocked.  Later, after the movie, his mom met us in the theatre’s lobby.  She put the iPad in front of him and said “what do you say to Steve?”  Again, instead of reaching for my support, he typed bye independently.

Short responses in the form of small words are possible for him now, such as yes, no, mom, and Tony.  But typing full sentences is a different story.  Our number one goal is that Michael will type on his own – independent of any physical support from someone else.  Until that time, we’ll give him the support he needs. 

Aside from typing with me, Michael has typed with his Grandmother, Mother, and Tony, his one-on-one aide at school. However, as is has happened with other FC users, Michael has grown most comfortable with singling out a person to support him to type, and that person at this point happens to be me.  I learned today that Michael has been resisting allowing anyone other than me to type with him.  He even hit his mom on the head twice when she asked to support him to type over the weekend.  He has also refused to take his iPad to school the past two days.  That means that Tony can’t practice typing with him either. 

It was time for Michael and me to have a conversation.  He couldn’t get the words out fast enough.  I didn’t bother reminding him that the needed periods at the end of his sentences.

S: Michael each person has to discover how to support you on their own. they have to feel it. but in order for them to discover that you need to let them type with you. what do you say to that?

M: I want to say that I want to let them type with me but it is irritating when they do not know what they are doing I get you to give them help but they don't under stand what you are telling them and I get even more angry help the because I can not explain it to them at all and I get so mad that I want to hit them you are able to under stand where i want to go on the iPad so it is easy for me to type with you right the way you hold and right the way you move with me I like to type with you because it is right to say what I want to say and I get to finally talk after all these years.

S: That was quite a series of statements.  what is the reason you have not taken your iPad to school the last two days?

M: I easy type say you and Tony is not easy to type with he pushes too hard and I can not type what I want to type you need to help him and he needs to type the way you type with me not to go to school with iPad until he gets help fast learner Tony is tony right to type with me like you me easy not hard you are getting even better at typing with me so you are the teacher for the others.

S: you are getting better at typing. you are becoming more coordinated. this means that in time you will be able to type with others and you will be able to type independently ... on your one. do you have any more to say about?

M: I want to and you to go to school with me tomorrow.

I’m going to Michael’s school tomorrow at 2:15, and Michael promised to take his iPad so he and I can help Tony support him to type with less pressure.