Tuesday, October 12, 2010

“Autism takes over every part of my life.”

S: Write a sentence about you, Michael:
M:  am the one with autism.
S: Write a sentence about autism:
M: autism is shit. autism is shit
S: In what ways is autism shit?
M: because it takes over.
S: What does it take over? 
M: it takes over my life. it takes over each part of my life.

It’s not easy to describe Michael.  It’s best to meet him in person.  He has a unique way of connecting with people because he can look into your eyes and conveys a feeling that he acknowledges who you are -so much for the assumption that all people with autism lack the ability to make eye contact.  Each time he types to talk, his sentences reveal more ways we’ve judged him wrongly based on his diagnosis of autism.  

Because he hasn’t spoken in all of his 20 years, people have people assumed he couldn’t think either.  The truth is I made the same leap until Michael began typing to talk.  He surprised me with his ability to think, but more so with his astute capability to reason.  One of the first statements Michael typed when we asked him what he needed from us was: “I want people to talk to me like I’m smart.”

Something shifted in me as I got better at supporting him to hit the correct letter on his keyboard.  No, Michael cannot type without my support yet, but I’ve met other adults with autism who do type on their own.  I had to believe in Michael’s ability to type, read, and spell in order to sincerely take on the task of being his facilitator. 

As I became a better facilitator, it became easier for Michael to be consistent with hitting the keys he wanted to hit.  It’s as if his eye sees the letter – the target - he wants to type, but his brain can’t coordinate his body to hit target.  It has taken the two of us a while to figure out how to “move” together.  I have to let go of all control of anticipating which letter Michael is going to hit next.  At the same time, I have to stay in control of how much pressure I am using to hold Michael’s arm up and steady so he can feel where his arm is in space… relative to the keyboard.  I also have to adjust the force I use to pull his wrist away from the keyboard between each stoke.  I had to learn how to bring Michael’s wrist back to a neutral position so he can count on me to take his wrist back to a starting point between each stroke.  It takes skill to become a facilitator, and I had to be trained.

Michael has the harder job.  Michael has to learn how to counterbalance the tension I give him so he can reach his targeted letter.  This may seem easy, but it is not for someone with an autistic brain which often and unpredictably misfires.  Moreover, the autistic brain has the tendency to operate as if body functions are separate and disconnected from each other.  So Michael has to practice using his autistic brain to coordinate the process of thinking a thought, putting the thought into words, and then moving the muscles in his arm to aim for hitting one letter at a time to spell his words. 

As someone who doesn’t speak, Michael hasn’t discovered how to coordinate his thoughts with the muscles in his voice box.  For now, we can support him to discover how to coordinate the muscles of his arms with his thinking.   Now that I understand the process more clearly, I can see now why it is true that for some individuals who have been supported to type, these same individuals later start to speak.  What isn’t clear to me is why so many educators of students who do not speak allow their misunderstanding of Facilitated Communication take over their ability to reason ad explore its usefulness for certain students.  

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