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TASH December 2003 Chicago

Making Dreams Come True

Sue Rubin


††††† Good afternoon.We are here to talk about our dreams and what enabled us to realize them.We all have autism and had challenges we had to overcome and quite honestly, at least in my case, sadly are still working to overcome.My dream when I began really thinking when I was first introduced to facilitated communication when I was thirteen, was to attend college and have friends.I really wanted to prove to my family that I was as smart as my brother.I also knew that even though I couldnít talk, I really wanted friends.


††††††††††† The first part of my dream depended on a support system at school and at home that would recognize my abilities even though they were masked by autism and a lack of spoken language.When I began using fc in the eighth grade I slowly began to emerge from an autistic haze.Before I was taught how to type I was awash in autism and didnít think.Dreams were non-existent in an empty mind.I know many autistic non-verbal FC users were already thinking aware people when they were introduced to FC.I was not.Thinking came slowly to me as my typing increased from single words in answer to specific questions, to phases, then sentences and paragraphs.By the end of the eighth grade answers originated in my head and thoughts came that were not answers. Thinking had arrived and dreams were right behind.


††††††††††† Having a dream and implementing a plan to make that dream come true was not easy for a non-verbal autistic eighth grader.When it became apparent that I was able to do grader level the IEP team decided I should be fully included at Whittier high school since they already had a full inclusion program, although severely handicapped students were not expected to do grade level work.The transition to high school was very difficult for me so I only was included for three regular classes first semester.The lack of spoken language was not the problem.It was my awful behavior.I yelled and banged my head, and laughed loudly, and was out of control often.The special education staff stuck it out.I gradually added more regular classes, including honors and advanced placement classes, and graduated with a regular diploma.Applying to colleges was awesome.I had done well on the SAT, thanks to special ed staff who practiced with me all summer, and had a 3.98 GPA.Colleges looked at that, not at my disability.So my dream of going to college came true when I was accepted at Whittier College, the only college I really wanted to attend.


††††††††††† The next part of my dream Ė to have friends- was quite a bit more difficult.A tool to communicate was given to me , but I had to use it to make friends.When I was in high school the students in the honors classes were interested and quite ready to approach me. Some of them learned to be facilitators so we could talk without an aide always there.During high school I learned how to be a friend.,I learned to think about other peopleís feelings and to respond to them.I know people with autism are not supposed to be able to do that, but I believe that is a myth.Really autistic people like me and other FC users are very tuned into other peopleís emotions.What I had to learn was how to respond to what I was feeling.That was very difficult.Killer emotions from other people would create killer behavior in me.I learned to separate myself from their emotions. When I was able to do that I could discuss their problems with them and be a friend.When I moved into my own home and met more people who were staff, when I decided someone would be a friend rather than just a staff person, I knew how to be a friend.


††††††††††† The awful lack of spoken language does not allow me to make casual friendships that could develop into real friendships. The only non-disabled people who are my friends are staff who used to work for me or still do.I know they are friends because they chose to spend time with me when they are not getting paid.I also have friends, like Peyton, who use FC to communicate.We understand each other when we are together and really can communicate on a more basic emotional level that non-disabled people canít.


††††††††††† When my behavior was so bad I thought that once I got that under control I would be much happier.Now that the behavior is reasonable, my echolalia has gotten worse, so basically I am back at square one with another challenge to overcome.I know the echolalia drives people crazy and interferes with my ability to keep friends because they quite rightly are driven away by my constant echolalia.


††††††††††† My new dream is to stop echolalia and replace it with real speech.I am working with Darlene Hanson, a speech therapist, to reach my goal.I believe I will be able to accomplish this goal to some degree.When a person as autistic as I am, can realize the dream of going to college and having friends, that proves that anything is possible with the right support.


††††††††††† Support is the key.We are sadly dependent on others for realizing our dreams.Truthfully, my life today would not deserve great invitations to speak if I didnít have great support at home, in school, and in my adult life.Every day my mom and dad spent about four or five hours on homework with me.Teachers in high school were extraordinary.The hope of all of them was that I would succeed.WAPADH, the agency that supports me at home and at school truly believes people with autism are intelligent and treat them as such.I know I am very fortunate and I hope some day all peoplewith autism will have the opportunities I have had.


Sue Rubin Ė