I guess you can say that has always been my approach. Love not fear. That is who I have always been. Not particularly worried about the unknown things in life. My future, my career, my life’s destiny. I understood early on that my life was a loving evolution that could not be forced. That it would just flow into place. Always turning and changing while I adapted, keeping up with it’s constant movement. Learning and growing through my choices and mistakes. For the most part I have viewed life as a beautiful, sensorific journey of unexpected, simple pleasures that make me smile each and every day. I never did let Autism get in the way of this freeing mind set, that for whatever reason became embedded in my philosophy. My life’s creed.
Does that make me a dreamer, a hippie, a fool? I don’t know but it makes me happy. In 2002 when my first son was 13 and my second son, 3 year old Wyatt began to lose his speech and the vocabulary he had been building. I did not freak-out. I did not cry and scream, “Why me?!”~ “Why Wyatt?!” Instead I looked deeper into his eyes and said, “I know about you….I know how smart you are in there. You are not fooling me, you phoney baloney” tickle, tickle…giggle giggle. “I am right here, and so are you.” I literally said that. The impish look he gave me bonded our “innerstanding*” We both knew we were completely present. With or without words. I knew everything would be okay. He was my son after all and we were connected through LOVE not FEAR.
I did not and will never let FEAR control our lives. Our choices. There is and has been so much fear associated with Autism. Fear that I let roll right off of my back. Fear that I sense everyone else feels independent of me. It is palpable the fear that others have sewn to Autism. A monolithic fear stitched together by negative threads of ‘woe is me’ rhetoric. Rhetoric Autism Speaks and others routinely use, to raise funds while holding our families out as entities to be pitied. Rescued through donations that almost never make their way to families in need. Whenever I mention that Wyatt is diagnosed as Autistic, I literally see people’s body language: speaking volumes to us. Shoulders droop and heads sway sideways, perhaps a hand placed atop my shoulder and the same two words, “I’m sorry.” My disclosure that my son is Autistic is not an invitation or a plea for pity. It is so disappointing that people are manipulated into feeling this is the response I am evoking. I do not, nor have I ever wanted sorrow from others concerning our lives traversing the Autism Spectrum. I cannot count how many people I have asked politely to not “be sorry.”
Do Wyatt and I do things differently? You bet, we do. Do we want others to be sad about that? No way. We live, we learn, we laugh. Meeting the Autistic population has been our saving grace. No more packets of papers for the first 100 days. Papers with black and white jargon that does not translate to our natural life. Therapeutic rhetoric about behaviors that need extinguishing and lists of where to have this done. No thank you. We are all about communication with people living Autistically. Proud and in need of support. Figuring out ways for all of us to adapt and be comfortable, far away from fear and pity.
We all know how detrimental fear can be. Especially when it’s manufactured fear or even worse an ignorant fear. Think about a crowded room where someone mistakenly shouts FIRE and everyone believes that call. I do not allow our lives to be trampled by the misguided shoutings and fear of others. It has long been said that people fear what they do not understand. Hmmm, that should be an easy fix. An understanding of Autism has to become an “innerstanding.” Which comes from understanding Autism through the experiences of Autistic people. THIS IS the simple, powerful “research” we need. Companies that trade in fear do not want real knowledge to be out there for mass consumption. It is much easier to hold power over a community in fear. It’s no coincidence they do not want to work with Autistic people to fully understand Autism.
If the fear goes away and the “innerstanding” of Autism is made common, who will need to fund raise for million dollar companies walking in blue lit circles for cures?
* Innerstanding* (1st time considering this beautiful word [for me] ~ Tarot Revisioned by Leigh J. McCloskey)
This post is part of the Love not Fear Flashblog scheduled for February 14, 2014. Visit this site to find out more information and view all of the participating posts.