Facilitated Communication – A Key to Success

Sue Rubin - People First of California Conference June 7, 2003

Good afternoon. I really am glad to be here and tell you how facilitated communication was the key to my success as a high school student and is the key to my success as a college student and how it enables me to successfully access the community and live successfully in my own home. I know that most of you are not familiar with facilitated communication so I will tell you what it is. FC is a method of Augmentative and Adaptive Communication (AAC) used by people who have no speech or very limited speech and cannot access a keyboard independently. When a person begins the training, a facilitator pulls against the wrist or lower arm while the FC user points to a picture or letter. By getting resistance, the FC user has more control and doesn’t randomly hit the target. As a person gets more control and more confidence, the user can access the keyboard without that great facilitation. I began typing without that physical support while I was a student in high school. Just because a person can access a keyboard independently, that doesn’t mean she doesn’t need a facilitator. I still need someone next to me to keep me focused. Although some people with Down syndrome and other disabilities use FC, most people who use it have autism.

I was diagnosed with autism when I was four years old, and as a child was considered mentally retarded with an IQ of about 50. As I got older, my skills did not improve and my IQ dropped to 24. I was in special day classes with some opportunities to spend time in regular classes. I always had severe behavioral problems and constant echolalia - constantly repeating familiar phrases or sounds. I was so engrossed in my autism, I was not connecting with the outside world. I was, in fact, retarded if that means I wasn’t processing information or responding to what people said to me. I was hyperactive and never sat in a chair for more than a few minutes. I actually didn’t think for the first thirteen years of my life.

When I was in the eighth grade, the school psychologist and speech therapist introduced me to facilitated communication. I was a terrible subject because of my behaviors, but my mom insisted I practice everyday at home and my teacher worked with me everyday at school. The speech therapist worked with my entire class at school because none of us had a working communication system. After a few months, I progressed from getting a few letters right, to words, then phrases, then sentences and paragraphs. By the Spring I was typing well enough to go into a science class. I was surprised that I knew a little arithmetic and could read and spell. This information was stored in my brain, but had been inaccessible.

My mom continued to work with me at home with computer programs that had elementary school curriculum. I knew almost everything. I think it was because I have an older brother and was around when he was doing homework. I also had spent time in regular classes, although I wasn’t participating in them. Then it was time to choose a high school. My parents, school personnel and I decided I should go to Whittier High where they already had full inclusion. The transition to high school was very difficult for me, even though I started with only three regular classes. I was frequently seen banging my head and yelling in the quad. Sometimes I had to be removed from classes. By second semester things got better and I added a fourth class. For the next three years I took five classes and left one period for counseling and speech therapy.

I had excellent support in high school and could not have graduated without it. I was on a special education teacher’s case load, but was often with an instructional aide because, believe it or not, there were actually other students, especially freshmen, who needed the expertise of the teacher more than I did. I did not have an aide assigned especially to me all day. In my honors and Advanced Placement classes I did have an aide for myself so I could participate in class. For subjects like Foods and PE I shared an aide with one or two other students. I also had peer support in a couple of classes, with the understanding that it would end if the other student’s grades fell. That never happened.

In order to keep up with the class and earn a regular diploma I had to do all the same work with very few exceptions. I was given a different assignment if the regular assignment depended on the use of my hands, like in ceramics class or when students did collages in English. In order to do my homework, my mom worked with me every school day for three or four hours after school, and at least one whole day on the weekend. This went on for four years. In the fifth year when I had both physics and algebra II, we hired a college student to work with me, especially when my dad was out of town and couldn’t help. That fifth year was a little different too, because I spent half the day at high school and half in the transition program to prepare me for living in my own house.

After five years of high school I graduated with a GPA of 3.98 with honors, and got 1370 on my SATs. By this time I was able to type without physical support when my mom was holding a keyboard. This took several years of practice with varying degrees of physical support.

When I started typing back in the eighth grade my parents and I knew that I was intelligent and should go to college. We always had a regular school guidance counselor at my IEP’s so we would be sure I was taking the right courses. When I had to choose a college, I chose Whittier because it was small and people could get used to my strange behavior and noises. That is exactly what happened. I will be starting my seventh year in September, going part time, and doing all the same work as everyone else. The Director of Learning Supports at the college gives new professors information on autism and facilitated communication. So far, my professors have been wonderful, as have the students. No one pays any attention to my little noises and when I feel an outburst coming on, I type to my support staff to take me out of the room.

Being in college has changed my life. When I was in high school I learned my school work and did well. But it wasn’t until I went to college that I actually learned to think developmentally. By that I mean I now can learn a bit of information and develop my own original ideas regarding it. My mind has matured tremendously. This would not have been possible without facilitated communication. My entire view of the world and everything in it has changed. Getting a college education should be the goal of all people.

The staff from WAPADH, an adult agency, is great at supporting me at school, home and in the community. Basically we do everything all other people do; like shop, cook, clean, go dancing, go to museums and just ride around. I communicate with all of them using FC. At WAPADH all staff members are trained in this AAC method. My life is quite busy and enjoyable. Facilitated communication has made all of this possible.