Wednesday, June 3, 2009

Answers to Older Questions posed by University OT students

Question: What kind of people do you enjoy spending your time with and what things do you like to do the most?

For me it is most relaxing to be outside with the sun and air in my face. It is your idea of relaxing without doing. For me, it is appreciating that is the doing part. To just be amid God’s other creations is a huge thing sometimes to just take in and enjoy.

Question: If you could teach a person who is ignorant about having autism and dealing with other teenagers, what would you teach him?

I want people to understand that we are all one. We are all the same soul as God. If you understand that the question is moot. Love thy neighbor as thyself has greater meaning than we understand. What kind of understanding would you seek? They seek the same.


Question: How do you deal with the annoyance of people possibly talking down to you or looking at you differently due to having autism?

If I am honest I will say it bothers me a lot when people talk about me while there as if I am not even present. It is because I can’t speak I know, not just because I am autistic. Only it is an annoyance as you call it. When you see what I look like you will understand people are always staring. Got to say, it overloads me more than anything else. Not my problem though - it is theirs.

Question: How did you first learn to communicate?

As soon as I could hear after the accident* I understood words held meaning. Before the accident sound had no meaning. It came and went depending on my vision. I could not hear and see at the same time so there was no connection between the two senses. Hearing without sight was the first time noises had meaning. People assume autists hear and see what they do. It is a huge mistake of understanding. My senses do not work like yours. It presents a false but different reality. Helping means first having to see the world through my senses. If you understand the problems, you can then retrain, adapt and accommodate for them.

*Mike was in a car crash at age three. He suffered Traumatic Brain Injury and was in coma for several days. When he came out of the coma he could not see for several weeks. I was surprised by his answer, as Mike did speak clearly, albeit extremely rarely, prior to the accident. He spoke only when in an extremely excited or relaxed state. (You would hear maybe one word in context every several months, then never hear it again). Prior to the accident he was incapable of following even the simplest of verbal directions. He did respond to “no”, but likely related more to my voice intonation rather than the word itself.

Question: How did you get into writing? Do you enjoy writing enough to pursue it in your future?

To write was a forced skill. My mom insisted. I told her “go to hell”. I was very mad. It made me very anxious – still does, even after years of practice. But it has a purpose for me now, to speak for those who can’t. Lots of autists are smart, but with major sensory issues. Absent understanding they will not get treatment of a kind that will help them and will never function. I know someday soon I have to speak to it. Treatment is not geared for each individual. The multi – single modal child is not attended to at all. I was that child and I suffered miserably in treatment ABA. If you understand it doesn’t have to be like that.

Question: Do you know sign language, and if so, do you find it easier to communicate by writing or by signing?

Good communication is not my problem. A sign says something to the person you are speaking to. I have my own sign language with my family for simple things. Very easy it is. But thoughts have to be typed.

Question: How did you first learn to communicate?

I have to say I did not understand the purpose of noises people made until I was blind. Before that It was just noise like water or a dog I hear, without meaning. Mom changed it. I heard her singing my name. She called me my name. I learn Michael is me.

Question: How does it make you feel when others refer to you as disabled or handicapped?

I am disabled when it comes to functioning in your world. But each person is damaged in some way or the soul would not need to be here. I am damaged for purpose of helping other souls. It does not hurt me to have it be recognized. I am an autistic person. Truth is truth.

Question: Are there certain topics that are harder for you to comprehend than others?

Worse than topics are parts. I can only attend to a few things at once. My mind can grasp it all, but it has to be broken down and given only so many parts at once? How many characteristics can you monitor at once? For me it is nature, shape, color. If you add size I am in trouble. Three characteristics of form is my limit. But concept of things abstract I am fine with. Not so with many autistics. It is important to understand each is a unique set of rules governed by their sensory reality.

Question: There are certain things around us that make us happy. What are a few things that you like to do that make you truly happy?

I am rarely truly happy because function is all anxiety producing. I am anxious like crawling out of your skin a lot.


Question: What is the most difficult task for you to perform during the day?

Only waiting is the hardest thing I do. It makes me too anxious. Mom says life is an exercise in waiting. I hate the exercise.

Question: Do you ever get frustrated when you have difficulty communicating with other people?

I don’t have trouble communicating what I need. I usually just show people – to point or get it on my own and bring it to my mom for permission. I am learning to speak a little , but it is a very slow process. Signing is too hard for my fine motor, but I have some of my own. I clap is to say “I need to go to the bathroom”, hand in palm is “I want”, hand to mouth “drink”, hand down shirt “ done”.

Queston: If you could do any one thing in the world, what would you want to do?

I am doing my purpose for being even now. The purpose of all disabled is to help others refind their souls. In choosing to help a disabled it is without expectation of return – an altruistic act. Altruism is love in purest form. To love is the key to open the soul. People need to understand that it is in serving others that we please God. Pleasing God serves the whole of our souls united. In end, we are all one spirit. The loss of body is replaced with a connectedness of spirit for most disabled.

4 comments:

  1. I found your blog through a friend. It is SO beautiful. I am amazed, curious about you, ashamed of every time I didn't appreciate someone, praising God, grateful that you are writing. Please don't stop.

    Do scientists trying to understand autism know about your blog? Can I show them?

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  2. I go to a friend's class at University of Scranton one year and answered student email questions ahead to teach "presumed intelligence." To see me, you would understand. It is a huge disparity between my body function and mind function.

    Going to the experts is of little use I think. They are looking for generalities. I speak individuality where generic treatment becomes unethical. My approach holds people to a higher standard of care in the application of teaching principles. Many do not apply those standards in their every day lives even to the normal people they care about. It is a much larger issue than just autism I speak to.

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  3. Thank you for your fabulous insights. Much of what you say resonates with my own beliefs.

    Mary Ann Harrington

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  4. Hi Mike, you wrote in one of your older posts that writing "has a purpose for me now, to speak for those who can’t. Lots of autists are smart, but with major sensory issues."

    THANK YOU so much for writing. My daughter is 10 years old, and communicates with vocal approximations paired with gestures and some sign language. She is now learning to type (through spelling words, just like you!). She is a happy and well-loved part of our family (Mom, Dad and younger sister) We are looking forward to understanding her thoughts better, so that we can all communicate and understand each other better. Your posts help give me a glimpse into what she may be thinking. It is really helpful!!

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