To a person without a disability it must be hard to imagine life with one. I think it is hard to imagine having a disability even for a few hours, so it is much more difficult to imagine living with severe limitations life long. I have not lived one day without autism. It is hard to imagine my life without it because I’m part of autism and it is in me. My mind is intact. My soul is free, but my body is the property of something else. This “else thing” is called autism. It looks like this: weird body movements, noises, lack of responding at times, a mask of flat expression on my face, impulse problems, and an overly sensitive sensory system, which is why I sometimes wear headphones.
But perhaps more difficult than all of the above, is the attitude of others. It is obvious by my actions that I’m not smart, right? OK, not right. But you know my limitations make me appear not smart at times, and then people assume. It’s not so bad now because I type on an iPad , so it is obvious that I think and read, but I still need to prove myself to each person I meet. This is life with a disability like mine. People don’t know or understand, and there are a lot of misconceptions.
It is more lonely to be autistic than not, especially for people who can’t communicate. I have an exercise for you. Imagine that though you think just fine your mouth is unable to speak your thoughts. This means no phone conversations, no singing, no long talks (or short ones), no calling your dog, no telling people your ideas, how you feel, or your needs. In other words, very quiet and very stuck. You listen all the time to the conversations of others, but you can’t join in. Ever. Not for an hour, but forever. Now imagine that your hand is wobbly and doesn’t obey your thoughts either, so the option of writing is gone. That is isolation.
Now it gets tougher. Your body doesn’t stop doing odd movements. You behave oddly because of that. Now you have a taste of autism. But I think one more taste will help you get it. Imagine all this, and put yourself as a kid into school with others like yourself and see yourself in a class doing the same boring lessons day after day, year after year, such as the days of the week, the weather, the ABCs, the 1+1s, all because your outside has fooled people into concluding you are dumb. Then the school tells your parents you don’t understand.
So now you know about my early life. I was lucky to escape my internal isolation because I was taught how to communicate, first on a letter board and now on an iPad. This enabled me to leave my special education environment and enter a general education one. My old classmates still remain in the same special education class. None have been taught to communicate yet.
In autism we are thought to be limited rather than trapped. I think the number of so-called mentally retarded autistic people is greatly exaggerated. How smart would you look if you couldn’t talk, gesture, write, or control your movements? It is a true frustration living like this with society’s misunderstanding, so I am grateful to begin changing perceptions.
Maybe we can work together to change the future.
