January 27, 2014
Powerful autism robs you of the ways you hear and see and smell the witnessed world. Risk increases in every area in that you vow one thing for your body to do and usually quite the opposite happens. Patiently, powerfully, it sorrowfully defeats knowledge you had acquired, only to jerry-rig lasting challenges with all senses. Really, lights become brighter; looking hurts; focus is bad to narrow; but the capacity to see peripherally and to take an entire field of wider vision into memory is enhanced. Wanting to follow directions becomes hard. For some reason, the directions are known but the pieces don’t make sense.
All of this frustrates in ways that tell you your reliability is weirdly questionable. Within this framework, who I am physically is inspired solely by patient focuses of nervous energy. Resting seems impossible. What is happening seems to ﬁre neurons each moment of sensory input, driving behaviors that are unpredictable. There was no intent to be disruptive. I was an insane jump away from serious injury. Yet the jumping was not mine. Fruitful for knowledge intake as all of this was, terror was silently behind it all. I secretly dreaded losing my life to autism’s awful, stupid recklessness. Control was heard about but not available, within what reserves I had within a sweet easy wanted childhood. I was alone in my experience.
When we as a family were with each other, the love was easily what gave me each day a shelter from my experience. Eerily, as I became sicker, the relationship of love assumed a diﬀerent tone. We were not so carefree. Worry became a partner, and in every real moment and way we were each distracted and awfully dominated hearing, sight and smell-wise by what the autism was doing. When I slept, which was rare, wanted walking of normalcy was in my dreams. Real true fear held me in its grip. What was quietly, queerly quitting my body of all typical ability and replacing it with diﬀerent ways of experiencing life?
Usually the amazing abilities I was acquiring would have been jealously coveted by others, but the people around me could not know these abilities. Included in this group were my family and friendships around me. As my abilities soared, my witness was lost to listening and speaking. Partnership was really vanishing. Into a hole and unable to climb out, wanting desperately to connect, I patiently waited. Then the doctors, behaviorists, occupying experts of normality began with their labels. It was as if someone put a cover over the hole and silently walked away. I was alone, worried, misunderstood, screaming inside for angels to save me. Those who came were a respite, and I remained alone. Under the ﬁlth of broken promises to help, serene in its omnipotence, I saw an industry thriving on my condition as I began to be placed with others like me.