Facilitated Communication Enables Me to Think, to Learn, to Live

Sue Rubin

Hello my name is Sue Rubin, for those of you who do not know me; I am a twenty-four year old college student with autism. I am part of the supported living program at WAPADH and am a history major at Whittier College. I would like to take this opportunity to demonstrate how facilitated communication has positively impacted who I am today. Facilitated communication changed my life; it fueled a new beginning, away from that destructive child to a woman with a voice, an ambition and a need to be part of the outside world. Over the past eleven years I have embarked on a journey of learning and living. I learned to communicate and with that came an articulation of feelings and emotion, an academic experience that I treasure dearly, an independent life that even some of my close friends yet to have accomplished, and a social life which I never dreamed possible.

I am a woman with autism, who for half of my life lived in utter disorganization. My actions were triggered by compulsions with no forethought, a frightfully awful place to live. When FC was introduced to me at the age of thirteen, to say that I became a different person would be an understatement. I was reborn. With much diligence from my family and friends I was able to discover my voice. For those of you at the beginning stages of finding yourself, I cannot reiterate enough how important it is to never give up. My attention span at thirteen was a matter of seconds not minutes or hours. Yet I can say I still struggle with sitting through two-hour classes however, FC enabled me to be a focused individual.

The discipline that comes with typing is remarkable; I have taken many steps towards greater independence. Assume that when progress is made an extraordinary sense of accomplishment and confidence follows. To be focused is to open your thinking system, a world of words, phrases and emotions. At the beginning stages of learning to type, I was frustrated. I had so much to say, things I wanted to tell my mother, but a hindering motor capacity. As much as my brain wanted to be unleashed my uncooperative hand slowed my progress. It takes great diligence and effort to make your hand move. That may seem strange to some of you, but it is a tribulation of autism. I encourage those of you who are FC users to slowly break away from the use of physical support. We are part of a community that embraces typing with support, but in order to be taken seriously by those outside of the FC realm, we must strive towards greater independence.

I spent many years utilizing physical and emotional support. Typing with physical touch is one matter, quite self-explanatory, beginning at the forearm, fading to the elbow and finally independence. The emotional support is an aspect of FC not very thoroughly addressed. As much as physical support is essential to independence so is emotional support. Discovering your voice is very intimidating and frightful for many of us. With greater communication comes taking responsibility for our words. Facilitators can help ease our frustrations by keeping us focused and encouraging accurate typing. As much as I try to keep myself engaged, it is always helpful having some encouraging words or simple touches to refocus my attention. I type completely independently yet at times find myself stuck, unable to move or continue typing. I find it most helpful if my facilitator lightly touches my shoulder or taps on my forearm to reestablish a connection between my mind and body. On occasion I can be dreadfully stubborn and most difficult to keep focused but am grateful to those insisting friends who are as unrelenting as I. A facilitator should be a support system that we continuously strive everyday to create greater independence from. It is a long difficult road with living as a reward.

An aspect of my life that has fueled my progress is attending Whittier College. When I first began taking classes I didn’t know what to expect, how would fellow students view me, would my distractive behavior consume me? Over the past five years of college my advancement has been remarkable. I have strived to become part of the college culture. Whereas students around campus used to gawk, I notice more now a sense of mutual respect. I have taken many classes at Whittier College and met many students. I am a history major and have recently been inducted into a historian’s honor society. Becoming more involved in school happenings has long since been a dream of mine. I felt a broader sense of belonging to the student community over the past year. I greet fellow students in the history department by name, typing of course and they reciprocate the gesture. My wish this spring semester is to participate more actively in history department meetings, social events and just simply to have lunch on campus.

Greater control over my body, voice and behaviors can be thankfully accredited to FC. I remain focused longer when engaged in typing and even listening. This has been a huge step for me. Listening is complicated. Turning off the continuous taped echolalic responses is quite difficult, something I struggle to master. As with many others, I enjoy listening to myself talk. My echolalia can be quite distracting but it is my way other than typing to get people’s attention. While enjoying the interaction that comes with my phrase games, I say something, you respond, I would like to limit my echolalic communication. It is important to note that what comes out of my mouth is not necessarily my true feelings. Questions should be validated through typing, more often than not; you’ll find the two answers differ significantly. A helpful technique for limiting echolalia is having quick access to a board. When echolalia seems a bit excessive, put a board in front of the FC user to distract the tape and refocus the person. This may help in limiting echolalia and keeping the person engaged. Being connected to the communicating world through typing yields an unexplainable sense of individuality and comfort.

Part of living for me is being an advocate for people with disabilities. I attempt every year to reach and educate people about the potential of individuals with disabilities. Attending these conferences also helps me to learn about your life experiences. I leave with a greater understanding of people’s struggles with their disabilities and an even greater appreciation of our collective efforts. The message we all came here to convey was that people’s abilities far exceeds their perceived disability. Our being present at events such as this is a great step towards our enlightening the public. Being an advocate is part of life for me, I have turned my friends into disabilities activists and hope that many of you will also take steps to educate people in your communities, school districts and families. I have recently been appointed to the membership board of TASH, an organization that promotes advocacy, inclusion and equality for people with disabilities. This truly is an invaluable experience. The committees are made of mostly professionals and my addition along with that of other individuals with various disabilities adds color to our efforts. In order to facilitate societal awareness and change it is imperative to get involved.

Being an active member of society has long been an aspiration. I have always desired to have friends and be part of the community. I am truly blessed to now have those things. My family has always had an extraordinary impact on my life and now I can say I have friends that have filled the void. Together we wreak havoc on Whittier. They are not only my support staff and facilitators but they have surpassed the line of co-worker to friends. Outside of their schedules work hours we hang out together, go to parties and even better Vegas. Their friends have become my friends and I treasure our times together. I am able to live a full life with them, they see past my autistic nature and have found a friend in me as well.

At school they encourage me to make acquaintances with fellow students. In the past when assigned a group project in a class, I would opt to complete the project alone. My friends have given me the confidence to involve myself in the groups rather than go it alone. I have met quite a few friends at school this way, it give my fellow classmates an opportunity to witness my capabilities and insightful contributions to group projects. The disabilities advocacy community has allowed me to network with so many tremendous individuals. Every conference I participate in yields new connections with communities and programs outside Whittier. The fight against killer autism is one worth waging.

The experiences of being a student, advocate, friend and daughter are incredible. I, as many of you will be a lifetime learner and teacher. I am proud to say that I am in a good place in my life. I have a wonderful support system in WAPADH, a loving family and a close circle of friends. FC has opened the door for me to truly appreciate and enjoy life. Thank you for your time.