Through the Autism Filter

I don't write about autism very often. This is because it is a very difficult and very subjective experience, and is incredibly difficult to describe. Sometimes I really want to blog about it simply to document and share such an incredibly world-altering experience. I also want to take some steps to remember it all. There are times when a PTSD response causes us to truly and honestly blank out some portion of our lives.

I want to emphasize that I specifically separate "autism" from "Matthew." Matthew is a wonderful kid and I will write about both him and Sarah quite often. But he is not synonymous with autism. Autism is a filter through which our whole extended family experiences the world. And what a wild and weird filter it is.

Feel free to ask me questions about it. No questions are stupid. I will explain as best I can whatever you wish to know about it. Other than that, I'll only offer up specific instances where our worldview gets rocked by this roller coaster.

I'll conclude with a simple story from several years ago that only today resurfaced to give me a little perspective right when I needed it:

He didn't speak at all until he was well over 4 years old. The world was a confusing and frustrating place for him, and he mostly just screamed about it. He had no way of communicating what he wanted or needed. There was just the screaming.

It was well into his 4th year that we managed to teach him how to use his first verbal tool:
"I need some help." It didn't come easily, when it finally happened, it reduced the screaming a lot. He finally had some way get a problem solved.

A handful of other individual words came along the way, but somewhere in his 5th year, he identified his second real tool:
"Hey, that's mine." (he's a twin, can you tell?)

During his 6th year, he added another one: "I do no want to!"

Of course he says a lot more than these things now, but almost all of it is distorted in a uniquely autistic way so that it rarely counts as real communication. Real communication means that he's generating original speech with real context in an attempt to convey something to another person. 95% of what he says even now doesn't really qualify.

But these three statements do count. Look at them again and think about how simple yet powerful these tools are in getting through our lives, whether we are autistic or not:

"I need some help."
"Hey, that's mine."
"I do not want to!"

I know I use these same tools frequently. How do you use them?
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