Back to School

First day of school tomorrow. I will have English, Spanish, World History, Algebra 2, Biology, plus an elective and PE. It will be a busy, hard year. More than anything, I'm excited to be returning to school. My old math teacher is the same, and my new teachers seem really nice and tolerant of me. It is nice to learn in school. I value the opportunity.

From My Speech, "Imagine Having Autism"

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.

Career Planning in Autismland

It is time I started thinking about my future. I will turn 16 soon and it makes me start to imagine that in a little more than 3 years I will be a high school graduate. Then what? My funding for an aide will stop or be reduced to a minimum because the support ends when high school ends. I don’t want to return to a non-doing life. High school is the beginning of my future, but with a reduction in  help in college and career, I will have to find a way. We all in Autismland depend too much on our long toiling parents. My observation is that normal kids move on, for the most part, though many still slack off too long for some reason. I don’t want to be a slacker. I want the kind of life that is independent, though with autism that is really hard. I want a real career that earns me a living. I think it’s necessary to be able to provide for yourself to feel good, but earning a living is tricky because the disability of autism interferes with our behavior. My motivation may help me try harder, but I wonder what career I can find. I’ve been told I’d be an excellent consultant for educators, autism professionals, and parents, and have done so already. Still, I think the time to begin planning is sooner, not later.

Getting Self Control

This morning my aide for school called to say she was sick. My wonderful dad had to turn around on his way to work and stay with me in the morning. Then my wonderful mom did the same after her meeting so he could go to work. And I had to miss school because there was no sub to be with me. I started thinking about it because I missed being at school, for once. In the past, I, once in a blue moon, had to miss school because my aide was sick and there was no sub. In middle school I didn't feel too down about that because, like most kids, I liked being home. In elementary school it made little difference in my remedial education whether I went or not, but now I feel happy in school. If I miss it I feel bummed, so I got the insight that I better get more independent so I won’t be in this situation again.

If I could monitor myself better I could have gone today. Autism makes us distracted by impulses, so without my aide I would stim on the way to class, take too long to sit, and be noisy. I need to be a harder worker on my self control if I want to grow into a man, not stay a boy   depending on his mom for guidance all my life. The brain can triumph over many obstacles. I have read a bunch of neurology books about people with brain disorders who healed themselves somehow.

The brain is not a simple organ like the heart or liver because it has the ability to compensate or adapt to injury at times. Who can say what we can overcome or not? It seems to me I must find the way to get more self-control by resisting impulses. That is harder than I can imagine, but I guess I need to start sometime. As with anyone who fights their impulses, it gets easier with practice. But really I need to be determined to do it and I’ll be honest, my determination is not consistent. The knowledge of what I must do is the start, but the fortitude to do it is the finish.

My New School

My high school is a really nice place. The change between my current school and my old school is huge. Last semester I felt miserable. I knew the school did not want me there. They never lifted a finger to be kind or help me feel easy or relaxed. It was so stressful it is hard to describe.  I won’t go into details, but the administration was really making my life intolerable when all I wanted to do was access a normal education.

The fact is being disabled is hard enough without being rejected or made to feel awful about a disability you can’t get rid of. So the difference between that kind of environment and my current school is striking. The administration is kind and happy to have me there. The teachers really are respectful of me and nice to my aide. My stomach is not nauseous when I go to school now. I feel at home, so now I can just learn like everyone else.

My realization is that the attitude of the administration is incredibly important to a school’s culture. For some reason, my old school has a better reputation and is thought of as a better school out in the community. I know I’m in Honors classes so I am around the most motivated students, but my observation is that it isn’t better in instruction, friendliness, or student behavior. It is better at hassling disabled students though, and does have a reputation for that. The new school is like a hidden school because everyone wants to get their kids in the other one and I think this one is much better. Irony, for sure.

A Great Change

Every morning when I go to school I feel good now. This is like a real blessing because for five months every morning I felt like vomiting before school. I was frightened I might have to spend four years in that tension. Thank God my mom found a woman who helped me transfer into my new school. It was looking like it might not happen and it was scary because I was so miserable in my old school. This counselor did the necessary paperwork and I got in. I am so grateful to her for this. Now I have an opportunity to just learn. My school is smaller and mellower than before. The kids are more respectful of the teachers in class, and my classes are good. The great thing is the school works with my parents to make it succeed for me. They cooperate, meet, discuss, and they are nice too. I had this in middle school and again now, but for the first semester of high school I had the opposite. I can’t understand the reason they were so hostile there. The team really didn’t seem to want things to work out. It is not clear to me why they had attitudes like this. I have to say I get a smile each time I drive by that school now and know I will never go there again. I thank all the folks who made this possible.