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2005-01-26 - 5:15 p.m.

Talked to Westley on the phone a while ago (He's at work) an he asked me if I remember meeting Doug Biklin, his Professor Sari's husband, at his dept picnic at SU last Spring. I said "Yes, I remember chatting with him"

He said, He's the guy who started the Facilitative Communication at SU. I just read he's been nominated for an OSCAR for the movie he produced (I THINK CALLED AUTISM ITS A WORLD)

I said COOL- then started thinking about FC. Funny that's not one of the things we talked about at all. When I met him I didn't know that about Doug Biklin.

AND I wrote Westley this e-mail today:

Hi this is a good article which discusses the whole debate between the validity of FC I think it was well done.

However after reading in in the context of having had an experience where I worked with a guy that would type for me ( AND I initiated that solely based on his interest and lack of motor control unaware of all the hubaballoo about this..... So I doubt it was first "invented" in early 1990- but the so called inventor is the first who NAMED this and ADVOCATED it as a technique)
I think I understand Doug Biklen's comments and I get the gist of how it is easy to find studies to disprove that things work- but harder and more useful when ONE person finds something that works for THEM even one time. I think despite the fact that there may be subconsious communication of the facilitator him/herself- SO WHAT?? I personally think that EVEN IF THAT IS THE CASE- this is STILL A valuable insight that SOME individuals this had been used with FEEL like they are communicating and their loved ones feel like they are communicating! It seems to me that alone makes it valuable if it makes people HAPPY! There is merit in that as it helps people have a self actualized life!

And in my experience, I was too amazed by the things typed by the guy I worked with when I offered motor control to his wrist at a typewriter (though not earthshattering amazing stuff....) just amazed that a guy that formerly was constantly aggressive with himself and others was now HAPPY and would go about the routine of the tasks of the day seeming to enjoy himself rather than biting himself in frustration and attacking others. HE FELT like he made choices of what to do each day (THAT"S WHAT I USED THE TYPING ON HIS PART FOR... TO CHOSE WHAT TO DO AND WRITE UP THE DAYS SCHEDULE I GAVE HIM THE THINGS TO BE DONE AND HE THEN ORDERED THEM AND SHAPED HIS DAY He's also occassionally refuse to include some activities and I honered his insistence to NOT do them! It really wasn't so hard to figure out he was sick of stuffing the SAME envelopes for the same mundane "vocational" training after YEARS..... I think ANYONE would go nuts after doing somthing so mundane OVER AND OVER ) He then had such a TREMENDOUS reduction in maladaptive behaviour and was VERY happy -- I think because he felt like he was in control of some part of his life -for perhaps the first time . That is- in the past the only way he was ever in control was through aggressive rebellion of refusing to allow others to control what he's be doing at any given moment despite their efforts to do so. It seemed I'd be rebellious if someone was ALWAYS telling me what to do without any personal consideration and attempt to ask WHAT DO YOU WANT?

So regardless of whether it was him actually communicating, or whether it was ME and my subconsious doing the typing out of some strong but not recognized desire I HAD.... I think in hindsight it doesn't REALLY MATTER--- as in the end, my work with him WAS USEFUL. And Most of all-- HE and all around him WERE HAPPIER than EVER! After only two weeks of working with this individual his wrist biting OF YEARS CEASED.

I also did my own "test" to see if I was influencing the typing. Without knowing this was even a topic of debate anywhere at the time, when I naturally started offering moter control to the guy I worked with, it DID occur to me "MAybe I am influencing the typing?"

So after at least a month of him typing the schedule stuff, I did a test. On a Friday as I dropped him off at his group home He was greeted by the staff that he got mail that day. I said to him "Great! Listen , On Monday morning I am going to ask you about your mail! Bye now"
And I left- without knowing who from or what the mail was about.

So that MOnday I was excited to try something new--- Both as I never asked him to actually communicate information , but only to ORDER the limited information of the daily tasks and to include what he would commit to achieve each day, AND because I was seeking information that I DIDN"T HAVE-- so I couldn't be subconsiously influencing the outcome-- But I COULD later go find the mail with the staff's help and VERIFY its accuracy or not.

Well, I was pleased with what appeared to be a conversation with typing back and forth that Monday morning. I typed and verbally asked the questions, and the guy I worked with typed back his one word, misspelled (but phonetically correct ) answers.

I asked "Who did you get mail from?"
He typed "CUZN"
I asked "Is that a boy or Girl?"
he typed "Boy"
I asked "What is his NAME?"
AND HE TYPED a NAME ( I forget this now.....I have the paper SOMEWHERE as I saved it!)

That was the extent of it- nothing earthshattering. However later that afternoon when I dropped him off I asked the staff what mail was received on Fri. Someone went to find it- and they brought out a card from the guy's male cousin. I showed them the typing. All the staff just stood there stunned and I remember the goosebumps as the guy I worked with started to sing my name.... He used to sing it in this mesmerizing chant when happy.

As I had the driving job which was rotated on Friday afternoons (the same agency ran the school and the group home)- I often had opportunity to communicate with staff there to get an idea of what the guy I worked with would be doing over the weekend. After the above communication I then made it a Monday morning ritual to ask about the weekend. And there were indeed a few more occassions where I was typed information I ddin't know.

But mostly, the typewriter was used for communicating the answer to "How do you feel today?" , and choosing and organizing the events of the day. Being recognized as an individual for perhaps the first time in a long time made all the difference in the happiness and productivity of the autistic young man I "facilitated" with.

I do remember being called into the Executive Director's office who wanted to know what I was doing in the classroom. I was a teaching assistant and I recall the teacher I worked with coming to the meeting with me and on the way in the hall briefly explaining to me that there was this current debate about "Facilitative Communication" and that she was going to support me in the methodology I was using. The Administrator for the school used to come in and observe me A LOT..He had been quiet and seemed to be impressed with what I was doing. (HE was a great guy!) A few other teachers had also come by to observe quietly. But I had not studied education and was totally unaware of this being a labeled "technique" at the time. (This was in 1991) Until that meeting with the Executive Director I had never heard the phrase Facilitative Communication! I was briefed by the teacher in the hall, but didn't really understand even then that I was "rocking the boat" in some way! At that meeting I learned from the Executive Director about this as an area of research at SU. She indicated that she had interest from parents about this and she wanted to do some more reading and learning about it herself before making a decision as to whether the school would use this methodology. She indicated that she would then hire someone to train our staff if she choose to persue this- but until then I was requested to stop.
The teacher I worked with really emphasised that in this case I was not introducing any particular METHOD and had no intention of doing anything witohout autorization, but had done what I had naturally discovered the guy I worked with LIKED to do. So there was a bit of a debate between them that in hindsight I recognize was very gutsy on the part of that teacher! (She's now holds the 2nd highest position in the Agency! But it was risky and gutsy back then.) An agreement was made that she would supervise my activity and that we were not to discuss what I do with the guy with anyone else and that I was to only use the typewriter with him at HIS initiation. WE discussed coming up with OTHER methods of helping him communicate. It was to merely be a fun "typing" thing that he likes.... In the end Autistic Services decided AGAINST using the formal facilitative communication method as an agency in their homes and programs, but offered training sessions for parents or others interested in coming to learn from people who were hired (I think from SU) to come to train those interested in doing this themselves on their time. I think that was a great compromise to please those who wanted to learn about this and do it.

So we still typed. But not as often, and tried to do it quietly. We came up with other ways of "facilitating"- The teacher made picture cards of the activities and the guy I worked with got to choose them and order them for his day. And the Official school administrator STILL camy by our room alot! HE almost seemed to be quiet about that too! It wasn't because he was TOLD to be a watchdog-- it was because HE LIKED to be there and was amazed and excited about what he saw. He did know that it was most fun to come by on Monday mornings.

And I still asked a few simple questions occassionally and got interesting and suprising answers I couldn't have known. (Like-- "What did you do this weekend?"
"MOms House"
"WHat color is her house?"

And I found out a little more about the guy I worked with than I would otherwise have known.

Bust most importantly, the guy still no longer bit his formerlly very calloused hands and wrists which after a few more months began to heal and soften, and he no longer was miserable and aggressive and unhappy. And he still sang my name! No one else had EVER done that with such devotion, nor will they! I know his love for me was because in some way I was able to see him as an individual for perhaps the first time in a long while. He celebrated his discovery of himself and his connection with other people as a result. That self validation came about through my simple patience and willingness to let him communicate simply by BELIEVING he could.

So does FC really WORK? I stick by my premise... It doesn't really matter it REALLY does. At a simple level, anything can be facilitative communiation that allows someone to communicate with another a little easier. It can be a pen and paper, a typewriter, or picture cards. But common to all of these is the most fundamental and essential element: BELIEF in a person's capacity to care and connect with others.

That's what I brougt to my work. A basic naive belief, along with my unrelated BA in English literature and Philosophy-- unmarred by any teacher training or study of education.

Basic Faith and Belief that the guy I worked with was a unique individual with something valuable to say. So I asked questions of him.

And as a result .....He didn't type grand poetry, come up with any amazing statements...
But he was happy
And he sang.

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