Thursday, December 11, 2008

A Teenager with ASD writes "My Autism Experience"

Nicky’s ability to communicate his emotions and feelings verbally (or in writing) is very limited. He still can’t tell me if he is sick, or in pain, he can’t express how he feels about most things, or spontaneously tell me he loves me. He communicates most emotions very simply; smiles, laughter, anger or crying. He has just learned the response “I am fine” in response to being asked how he is doing. I know he has feelings but he just can’t get them out.

For this reason the phrase “Out of the Mouths of Babes” takes on very special meaning when the babe has autism. Last week one of Nicky’s therapists asked if I wanted to read a story written by one of his students (a high functioning child with autism) that he was really proud of. My response “Of Course”! I leaped at the chance to hear one of our kids thoughts being communicated it’s my only door into how Nicky might be viewing the world. I was so impressed that he was able to communicate his feelings and tell "His" story, and share his very special perspective. I was so moved by this young man’s story I got permission to share it with you.

I hope one day Nicky will be able to write about how he is feeling. I am sure I won't be happy about everything he has to say, but I know I will be overjoyed that he was able to say it!!!
PS: You might need a tissue for this one.
Author, unnamed
Thirteen years ago, way before I was an adolescent or even a boy, when I was just a simple toddler, my life was turned upside down by autism. For ten years I was doing unnoticed behaviors for example, I was thinking of random thoughts and saying random sentences. The other students would look at me funny. The teachers and students at school did not know how to deal with me. And I didn’t know either. I had an aide, however, I didn’t really know why. When I was at home, I tried to act “normal.” They had given me a lot of rules and I felt it was unnecessary to have them. When I look back, I realized that I needed that structure. While I had rules and regulation, I realized my sister didn’t receive the same attention. This caused our relationship to be difficult.
When I was thirteen I was in middle school when I learned the truth. A student in my homeroom class asked me if I was autistic? I was shocked and realized after all these years that was the reason why my behaviors were out my control. I went home to think about the question more. I didn’t even want to share my feeling the my family. I felt it was too personal and unbearable.
Ever since then I have wanted to erase my past. I have done this by pretending to know people I knew when I was younger. That way, I wouldn’t have to deal with the pain, hardship, and above all, the string of the childhood ordeals. But when I went to Jay Noland camp at 15 I was ashamed of 2 cabin members who were lower functioning than I, which was bothersome because one of them defecated on the floor of the cabin, it kind of meant the nightmare I tried to evade returned. I was crying as soon as I left the camp. I was even more ashamed when I ran into another student that was lower functioning at my high school which kind of was the same thing I was put through. I tried my best to hide from the student and pretend to now know him/her. Now I have a better tolerance for autism. Now realizing I was higher functioning. I was smarter than the lower functioning people. Now look at me I am more successful and less abnormal (socially). However, I have one small glitch laziness’ and outburst that are seldom. I knew that student from therapy. I was luckier than him/her because I was responding to the treatment. What I am trying to say is my condition is improving quickly. I am so happy I survived the ordeals I was put through when I was a young boy.
Otherwise, I would have been extremely miserable beyond imagination. In fact, I would cry once in a while whenever the flashbacks visited my heart; When I was asked the same question at 13 that day, I said this one thing in my mind “Well I’ll be, that explains a lot, after all these years; I at least learned the truth, and THANK GOD”.
It was hard to believe that I was ever developmentally disabled. Otherwise I would’ve been completely sorrowful for my entire lifetime.

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