Thursday, May 31, 2012
It is pointless to get angry at an article like this which so inaccurately characterizes my life. My ability to “mentalize” is intact. More than that, my relationship with God is profound and fulfilling. In my life, I talk to God throughout the day. He hears my silent prayers and gives me a place to hope.
I think this study is biased. How many non-verbal autistic people did they interview? My guess is none. I think our answers may be totally different than those of the people they interviewed.
It is my theory that researchers of autism from the University of British Columbia have difficulty “mentalizing” how life is for a non-verbal autistic person, so they make a statement that minimizes our deep and rich inner world and call it a study. The majority of people with non-verbal autism can’t communicate well enough to refute these claims, but their inability to communicate isn’t proof of a lack of “mentalizing”. I know that this is an uphill battle; still we have to keep fighting to tell the truth.
Here is one of my past essays on theological themes.
Monday, May 28, 2012
The idea of treating autism as a mental illness is incredible. I somehow intuit that Bettelheim's influence is at work in France where they still treat autism with psychotherapy. I don't think much progress will be made though by emphasizing the wrong treatment. That being said, I did see a therapist when I was twelve, but she didn't treat my autism. She helped me to accept myself with autism because I was getting so sad about my limitations. However, in no way could she have cured me of my neurological issues. Anyway, this is my insider's point-of-view.
Saturday, May 26, 2012
My beautiful, wonderful grandmother died last weekend. She was, in the end, in a sort of cancer existence. The illness was eating her inside. She lost her ability to speak to others. She lost her ability to walk. She lost the ability to hold up her body. She lost her ability to eat food with texture. Being so helpless, she was graced with caretakers who were kind, hard-working, and loving. She was blessed with steady visits from family, who never resented the extra work.
I was observing this in my usual way. Relatives visited her often. She did the best she could to still be loving. I watched my mom sit near her bed and hold her hand. My grandmother swung their hands. She smiled, and smiled, and smiled.
Who wants to smile in her situation? She smiled to be encouraging to her visitors who showed calmness on the outside. She smiled, too, because she saw how devoted her children, and grandchildren were. She was not alone.
My grandmother had a lot of alone in her life. An orphaned child sent to a strange land, she had to endure a lot. Why is it that despite her hard life she smiled, and laughed, and courageously faced her challenges? I see many people who face less and complain constantly. My beautiful grandmother chose to give life her all and not waste it in self pity. Her legacy speaks for itself. She smiled until she couldn’t anymore.
Now she is with God and I hope her parents are happy to embrace her once again. Their souls are reunited, and I am happy they are.
Rest in peace, my lovely, wonderful Oma. I love you.
Sunday, May 13, 2012
This morning I was edgy. My electrical currents were coursing through me. In Autismland that means either do stims or temper. It is a stressful time for me and it is hard to be calm, but I can’t freak out just because I’m stressed. This is what my family did to help me: first I worked out with weights. I complained non-stop. Then my mom insisted I go on the treadmill. I lasted fifty minutes including running on and off. It is amazing. I feel normal now.
This summer we have decided to concentrate on fitness because my body needs to listen to my brain better. If I could have a trainer every day, how would I improve? I wish I could do that, but we have to work out even without a trainer because it is important that autistic people wake their mind/body connection. It is not do-able if the person is not using his body in exercise ever.
I recently hiked with many autistic people. It was short. Maybe a mile, but it had a hill at the start. I saw many turn back after five minutes. They were not used to moving enough. My new goal is to get fit this summer and see if it helps my brain too.
Sunday, May 6, 2012
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.