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Sue Rubin was diagnosed with autism at age 4. Before she learned to communicate at 13, she lived in virtually another world. "Voices floated over me. I heard sounds but not words."  

Acceptance versus cure

By Sue Rubin

(CNN) -- The argument dividing the autism community regarding the need to cure autism as opposed to accepting autistic people as a natural expression of diversity has been on my mind a lot lately. The possibility that I could be very autistic for the rest of my life always upsets me. Therefore, when people talk about a cure I actually love to hear it. To be realistic, I know I will never be cured. The cause of my autism is a genetic anomaly and can't be changed.

The argument dividing the autism community regarding the need to cure autism as opposed to accepting autistic people as a natural expression of diversity has been on my mind a lot lately. The possibility that I could be very autistic for the rest of my life always upsets me. Therefore, when people talk about a cure I actually love to hear it. To be realistic, I know I will never be cured. The cause of my autism is a genetic anomaly and can't be changed.

The rift in the autism community basically is between what we label high-functioning and low-functioning people. High-functioning people speak and low-functioning people don't. The people with Asperger's syndrome, also a type of autism, love to talk; however, their very narrow areas of interest give them away. These people are the ones who are offended by the idea of a cure. They could pass for normal although for them, sallying in a normal group is like an uptown elder at a rap concert. They listen only to people who please them and only speak to inform others about their interests. Social skills are difficult to master. I believe the idea that they should be cured is wrong. They are different, but basically are just a variation of the norm and should be accepted as such. Some even have exceptional abilities that should be celebrated and encouraged.

As a low-functioning autistic person who is still really awash in autism, I actually am aligned with the cure group, although I will not personally benefit if a cure is found. Low-functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful.

Since this is not going to happen, I am resigned to living my life as it is -- a constant struggle. When I have to mask autism in class it takes a tremendous amount of effort. When I see the other students sitting calmly or chatting or answering questions so easily, I'm really jealous. When I had to stop awful autistic behaviors like head-banging, it took a tremendous amount of effort over years. When I see people living normal lives, I am jealous. When I am really lost in autism and can't inhibit behaviors that annoy staff, I deflect anger from myself to them and create bad feelings. When I see how normal people interact with their friends I am jealous.

As a person who lives with autism daily and will not live a normal life, I find people who are high functioning and saying society should not look for a cure offensive. They have no idea what our lives are like. Killing autism lets me enjoy a life with great friends and allows me to go to college, but I must never let down my guard or autism will take over. I don't want any more children to live, as I must, in this constant state of war.

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