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Tyler Fihe   

Tyler Fihe is a 16-year-old sophomore in high school. Tyler uses Facilitated Communication (FC) to speak. "I am a person with autism. Notice the 'person' part came first. In the past people treated me as though I was an empty shell to be filled. Anger filled my life because I couldn't communicate. When I was six-years-old, my mom started to use Facilitated Communication with me. I had to overcome fear. I had to learn a new way to communicate. Mom and I practiced 10 minutes everyday until we could type fluently together. I mostly typed at home with mom because I had no FC trainer. Lack of a Training Facilitator was a huge barrier. Finally, when I was in the 6th grade, I was blessed with an FC trainer. It took until 8th grade to really achieve inclusion. Finding good FC staff is like finding a needle in a haystack. Since 8th grade, with FC I have learned to speak. I have a Lightwriter (a voice output device). I have lots of friends and a bright future. Getting a voice changed the course of my life."

Tyler's Survey

Tyler was an active participant in the "Breaking the Barriers" event held May 3 in Boston, Massachusetts. At that meeting, people who use facilitated and augmentative communication, TASH advocates and family members met to identify the policy issues are of importance to people who use alternative forms of communication. Working together, the group discussed and planned ways they could address those issues effectively in the public policy arena and how to overcome barriers that continue to thwart the efforts of people with disabilities to speak for themselves.

In preparation for this meeting, Tyler developed a questionnaire, which he distributed to friends who also use alternative communication or who struggle with communication difficulties. In the cover letter attached to the survey Tyler said:

"I am writing to you because I am going to Boston to talk about how autism affects our being a force in the world. People continue to make our world limited. I want to bring our voices to the world of decision-makers. Please read my questions and give me your input, so we can be part of the world as the wonderful people that we are."

Tyler's friends responded with gusto. Their answers are full of heart and resolve and urgency.

Question: What makes you happiest in your life?

When I have a voice and get to be included. When I am with Dad and we can talk like father and son. When I'm with people who love me without focusing on my parts that are different. I'm finally able to have a life I can control. When I'm saying what's on my mind and not being controlled by others. Mom makes me happy. Being able to communicate makes me happiest.

Question: What makes you saddest?

I am sad that I have to move to a group home because my mom needs to work and supports are not available to her to keep me at home. I am saddest being silent and treated like a nonhuman. It breaks my spirit to be thought of as collateral by product. When I feel left out because I'm different. I hate being non-verbal and dependent (I hate my stupid mouth). Being disabled and thought of as a waste of money. Without speech I am a vacant body and a burden on my family.

Question: How have you learned to communicate?

Through facilitated communication. FC is my only method of really communicating my real deep thoughts. I was totally voiceless prior to fc. I communicate talking and writing. My mom and my dad taught me how to talk and write. I use a lightwriter, and some gestures and a few words. I use pictures and read words. I had to relearn that I can be something!

Question: What got in your way when you were learning how to communicate?

People who are facilitated communication skeptics. Professionals with limited training. Stupid professionals -- what else can I say, they were morons. Beliefs that people thought I was retarded. Having me talk out loud because it is hard to think of the right words. My body, my school and everybody who thinks I'm stupid. People not believing in my abilities.

Question: How would you change the way you have been treated in the past?

I want to be valued for who I am. I deserve a real shot at participating with the correct supports and not some lame idiots pretending they know me. I would make them treat everyone with a lot more respect and decency and kindness.

Question: If the government were to design supports for people challenged with autism what would you want them to include?

Technology. Inclusion with typical kids. Money to train people and higher pay for staff. People like those who know facilitated communication. Control of who works for me and control of my support funds. Knowledgeable professionals that people with autism recommend. A way for everyone to talk and participate. Help us communicate so we feel like human beings.

Question: What frustrates you the most living with autism?

People's beliefs. No one really understands how frustrating it is not to be understood. Being thought of us retarded. Being limited by the availability of trained staff. My mind is normal but my mouth behaves like it is not part of me. If the professionals are making money off me then at least be knowledgeable and make my life livable. Laughing is the only way to get by the unlivable sadness of silence. . ."