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Autism 2000

"Joining the World Through Augmentative and Assitive Technology" by Sue Rubin

Good afternoon. I am going to talk today about how I got started using a method of augmentative and assistive technology called Facilitated Communication. I will also talk about how it has impacted my life and about the pitfalls always to be avoided when you are starting to work with FC.

When I was thirteen I was a very typical autistic student with an IQ of 24. I was readily quite recognizable by my awful behavior, tick-like movements, and lack of communication abilities. Even picture communication was not reliable for me. Anything I learned was through behavior modification techniques and were responses to stimuli. No thought was involved. I was robotic and still disconnected to the real world. The walls of autism were very high and insurmountable.

Then in the wonderful awesome year, 1991, Jackie Leigh the school psychologist and Darlene Hanson, the speech therapist came to my house and taught my mom how to use Facilitated Communication, which eventually freed my mind and enabled me to climb the wall of autism. I am still autistic and still lose my behavior battles, and still have tick-like movements; but my mind has been freed. Each day, since that fateful day in October, I have been learning how to think. Being fully included in high school was extremely important. I had been absorbing information when I was still in my autistic stupor, but I didn't know it. Each class I took opened my mind further. I ended my high school career with a 3.98 GPA and 1370 on the SAT. Whittier college accepted me as a John Greenleaf Whittier Scholar, an honor accompanied by a $38,000 scholarship. Without a method of communication that allowed expression of my thoughts, I could not have done this.

The ability to communicate is essential throughout every day of a person's life. It was wonderful to go to high school so I could learn thinking skills, but I could not shut off my brain at 2:30 every day. Facilitated Communication was necessary for me to communicate at home and in the community. It was necessary to tell my parents I wanted to go into supported living. It was necessary to interview staff people at WAPADH, the agency I chose to support me. It is necessary for me to communicate with my staff everyday. It is necessary to form friendships. Real friendships based on equality not pity. We are able to communicate feelings without words, but that is not sufficient for a real friendship. Try going for a day without speaking and mm how well you connect with friends, family, and people in the community. Friends are absolutely essential for a happy life. Being lonely is the worst thing for a person in any situation.

That brings us to the last part of my talk - pitfalls when starting FC. I am assuming everyone knows what Facilitated Communication is. To be very brief, It is a method where a facilitator applies backward pressure on a person's wrist or arm while they point to a picture or letter they want. Eventually the physical support is faded until the person types independently. This took me five years to accomplish, but others have taken less time, and some people are taking longer. The more the facilitator fades, the more the FC user has to take responsibility for the typing. The rhythm must be set by the user and he must be able to pull his own hand away from the keyboard to be able to hit another letter. Even after a person can type independently he still needs the facilitator there to keep him focused. While a facilitator is supporting a person at the wrist there is a chance the facilitator will influence the userís typing; therefore it is very important to be as independent as possible. Fading should occur from the very beginning so the user doesn't become dependent on the facilitator. I must admit, when time is short and I have a long paper to write, I revert to physical support, then use independent typing to clarify any points or to correct for influence.

The next area I would like to warn against is listening to body language and echolalia. When some people with autism say they don't want to type or they use their bodies to get the idea across, the facilitator should ignore this. Respecting automatic language and movements is actually disrespecting the autistic person who can't control them. When someone asks if I want to type I often say "no type!" and sometimes throw the board away. I really do want to type and have typed that to my facilitators so they don't ask the question, but just put a keyboard in front of me. This is especially important when you are getting started. You must practice everyday even if it is only a few minutes at a time in the beginning.

I would also like to warn you not to give up during the first few weeks. It is hard for us to get our brains thinking and might take a while for your child or adult to figure out what is expected. It would be helpful to have him see someone using FC in a video if not in person. Also, don't expect him to answer open- ended questions in the beginning. On the ladder of sophistication of language open-ended question are at the top and are most difficult. You should begin at the bottom and move up the ladder as the user succeeds at each level. This is a good time for me to introduce Darlene Harmon, a Communication Specialist. She works with both adults and school aged children teach them FC. I would also like to introduce Janine Guncic, " person who is responsibilities at WAPADH. She is also my program coordinator, ex-roommate, and friend.



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Revised: January 25, 2002

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