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Youth Opinion : 'Killing Autism Is a Constant Battle'

October 14, 1995|SUE RUBIN | Rubin is a student at Whittier High School

Autism, the result of a neurological disorder that affects functions of the brain, occurs in 15 of every 10,000 births. Symptoms include abnormal responses to sensations affecting sight, hearing, touch, balance, smell, taste or reaction to pain; absent or delayed speech and language, and abnormal ways of relating to people, objects and events.

Autism always is with me. When I wake up every day, I greet the morning with screams. Then I always run through the house very fast screaming. I am unable to control these movements. I would love to wake up peacefully. Because my motor skills are so poor, my mom helps me get dressed. Sometimes wanting to be independent kills autism enough so I can get partially dressed myself with a few verbal cues. I am always attempting to kill autism, but am rarely successful.

Because of my handicap, I ride an awful yellow bus [to Whittier High School]. All the students in the bus are severely handicapped, and we are quite a sight. I sometimes scream and bang my head against the windows when I am frustrated with my handicap. The pain actually is pleasant. Sometimes I scream and head-bang just to show how handicapped I am. Heroes demand worship; autistic people demand attention.

At school I have an aide with me at all times. During most of the day, a few students share one aide. When the teacher is well prepared and assumes all students are capable, I sit quietly and behave. When the teach is disorganized and assumes we are stupid, I can't control my outbursts. Awful feelings come over me and I have to leave the classroom.

While in the classroom, I am able to listen and comprehend all that is said as long as I am sitting quietly. When I am overcome by emotions, I lose my ability to process information. At lunch, I eat away from autistic students because they make me more autistic. I usually eat with an aide and a few regular students. At Whittier High, the students are used to bizarre behavior from those of us who are autistic. They are very accepting and always sympathize, but we tend to scare people with our unpredictable noises and behavior, so we don't really have friends.

After school, if I don't have a vision therapy appointment, I start my homework. Homework really allows me to kill autism. All madness disappears when I have to concentrate on facilitated communication (typing with support). My mother and I spend about three to four hours a night doing homework and sometimes all weekend. All my actions such as screaming, jerking my body and banging my head are suppressed when I am typing. Killing autism is a constant battle.

After a couple of hours of homework, I am ready to eat. I can help set the table by bringing things to the table, but I have trouble distributing them around. I know where everything should go, but my body doesn't cooperate. Now I am also able to bring things to my mother when she asks for them. I couldn't do this before I started typing, because words just floated over my brain. Now I hear what people are saying. I can eat with a spoon and fork but I can't cut with a knife because my two hands don't work well together. After dinner, I help to clear off the table.

Back to homework until bedtime. After a bath, I can sleep most of the night. I am fortunate because many people with autism stay awake most of the night. Diseases like cancer are preferable to living like this--not able to control your body, voice, emotions, and thoughts.

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