Facilitated Communication Symposium Whittier April 3,2003

The Impact of Facilitated Communication on a Person with a Severe Disability

Sue Rubin

Freedom from limits imposed by society is what facilitated communication has brought me. When a person looks like me, sounds like me, moves like me, and scores on traditional IQ tests like I do; society, in its ignorance, assumes what my capabilities are and what my life should be like. NOT! If I had not been introduced to facilitated communication when I was thirteen, I would be living the life of most low functioning aggressive, self abusive people with autism. I would even qualify as a good candidate for the Judge Rottenberg School, formerly BRI. There I would be given electric shocks, kept in restraints, and deprived of food. Even in more humane programs, I would be in a workshop doing menial tasks. I really don’t think it would matter to me, because I would still be in my autistic daze thinking only about immediate rewards.

The person who quietly sits before you now once couldn’t sit for more than a few seconds. This person who is now a junior in Whittier College was once in segregated severely handicapped classes. The person who lives quite happily in her own home with support from WAPADH, probably would still be living at home if FC had not enabled her to tell others what she wanted. This person who eats really delicious food and enjoys it, once just shoved food in her mouth without any enjoyment. This person who worries like all Americans about the war in Iraq once had no idea what was happening in the world outside of her own needs. The impact of Facilitated Communication on my life has been quite wonderful. It has transformed an autistic sadly destructive child into a thinking adult.

Facilitated Communication is considered a type of Augmentative and Assistive Communication; however, it is much more in my opinion. Although many FC users say they were always thinking and just needed a way to express their thoughts, I actually didn’t have thoughts until I learned a communication system. Even other autistic people find this hard to believe. I assure you, it is true. I was definitely not thinking beyond the immediate reward or punishment I would receive for any given action. The process of putting words together somehow organized my mind. Even I was amazed when I began to think.

The communication specialists in the room need to realize that excellent therapy really does more than enable a person to communicate. It actually wakes up and organizes the person’s mind. This is important for parents to know too. I believe it is necessary to spend hours typing to actually change what is happening in a person’s brain. When I was in high school, I typed throughout the school day, then spent hours doing homework. I really think this was what helped me. We must keep our minds focused and productive or we will sink into autism. Recently I was very sick and was not able to get out of bed for more than two weeks. During that time I became more and more autistic so that after my symptoms went away, I was left with autism and behavior as bad as what it was before I started typing. The movement disorder was so bad I couldn’t even go to the bathroom, and the behavior component was so bad I became self-injurious and very aggressive again. The difference now is that I can recognize what happened and ameliorate it by typing to regain my focus and ability to control my movement and behavior disorders.

People not familiar with facilitated communication have no idea how it affects all parts of autism. I can assure you that typing organizes my mind and body so I can function as a thinking person. People actually say we don’t need to learn academics because it is more important for us to learn functional skills. They don’t understand that by typing and learning academics we are then able to think about what we want to do functionally, and with better body control, we have a better chance of being successful with that functional skill and the skills necessary for living in the community.

As a non-verbal or very limited verbal person, and a college student, facilitated communication is absolutely essential for me to live my life in the community around my home and at school. I need to communicate all the time with my staff and fellow students and professors. Just being able to type whenever I need to is essential not only to live my life as it is, but also to maintain my thinking processes and to have some control over my body. I realize I am not cured of autism and its awful behavior and movement problems, but I can at least keep them somewhat under control. The impact of FC on my life, as you can see from what I have written, is so great that Facilitated Communication has created a new person who did not exist twelve years ago.