Sunday, November 1, 2009

Listening to the "Experts"

Back on 5/17/09, I wrote about giving a presentation on Facilitated Communication, accompanied by three young men whose lives have been changed by learning to type. Just this past week, one of them, RB, gave a presentation of his own. This time, there was a warm, welcoming, standing-room-only crowd, and his message came through loud and clear.

Giving presentations like this is part of RB's new business plan. Now in his 30's, he hopes to use his talent as an artist and poet, along with his desire to help others understand autism, to become a little more independent and self-supporting. His plans also include writing a book and giving talks to local (or not-so-local) organizations that might be interested in what he has to say.

Just two or three short years ago, RB startled me completely by typing that one of his dreams was to become a public speaker. I simply could not imagine this young guy staying in the same place long enough to even attend a public talk of any kind, much less give one himself. I tried to fake some enthusiasm for his idea and put the idea aside - until I learned that he was typing essentially the same message to another of his loyal facilitators whenever the two of them got together to "chat." We could no longer ignore or dismiss what he was trying to tell us. And we began to share his dream with the ever-growing, ever-supportive team that works with RB to make things work as smoothly as possible in his challenging life.

Every step of the way, he has met and surpassed our expectations, and we no longer have to fake our enthusiasm when he types about his passion to become a spokesperson for those living with autism. He wants to help parents and professionals, anyone who will listen, to better understand what is going on and how to best help those they care for and about.

Somewhere along the way, RB took charge of his own team meetings, helping to set the agenda each time, and addressing any/all issues that might be causing concern, then waiting patiently (or not so patiently sometimes) for the rest of us to put things into motion so that his dreams might come a little closer to reality.

A very supportive team helped this week, and the event was a huge success. I will attempt to summarize some of the main points from his presentation, which will no doubt be available in some sort of published form in the not-too-distant future. I will also invite RB to add comments of his own here on the blog in the future.

Consider these when dealing with autism:

(1) Heightened sensory input. RB says he hears, sees, feels things that the rest of us don't seem to notice. He senses things before they happen. It is hard to filter out all the sensory input he is receiving.
(2) Behavior. RB says much of what his body does is simply NOT under his control. "Imagine having your body do things that are totally appalling to you."
(3) Focus. Whether it's a matter of too much or too little, people with autism are challenged in this area. "It is not easy to be in a more focused state, but I can do it when I need to, or when I have the opportunity to type."
(4) Intelligence. "I want to tell that they have it all wrong and that we are not retarded but instead we are highly intelligent and advanced people."
(5) Emotions. RB experiences a wide variety of intense, very NORMAL feelings, including anger, frustration, depression, joy, and love. He says he can read other people very well. "I can feel the energy toward me."
(6) Communication. Typing has been the answer for RB. He says it literally has saved his life. "It is no longer a mystery to me why people like being together."

If this fits with what you've already learned, move to the head of the class. If not, do a little quick cramming and move forward. Kids with autism and other related conditions that cause difficulties with communication are waiting to be heard. They have much to say, and so very much to teach us all!

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