|
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 user’s
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.
|
