In this past year, there has been a major shift in my thinking about Philip and about autism in general. I am in the process of doing a complete 180 in thinking about autism. Before, autism was something tragic, something to be eradicated, and a hardship. More and more I am seeing autism as a special blessing, something to be accepted and supported, and an exciting challenge. I do not believe I am being too idealistic. These ideas come from autistic people themselves, including my son! I will always keep in my heart and mind Philip’s words last night regarding his thankfulness for autism: Anything is good if you seek God. He was saying AUTISM CAN BE GOOD! Now that’s a revolutionary thought, one I am still in the process of fully embracing, but I will get there.
The title of my post is “Learning from Autistics.” Many so-called autism experts who do not have autism would say the proper term is “People with autism.” But if you ask most people with autism, including the most recognizable one Temple Grandin, they would say they are “autistic.” This is because they cannot separate autism from who they are. Unlike a person who has cancer, autism cannot be operated on or taken out of a person. Autism affects everything- the way one sees the world and interacts with it.
Lately I have been reading blogs written by autistic people, some who can talk and some, like my son, who cannot. Reading their stories has been most helpful in understanding Philip and giving me real hope for his future. How I wish I would have picked up these readings over Jenny McCarthy and memoirs written by parents of so called “recovered” children during the first few years after Philip’s diagnosis. I might have saved myself and my family from some heartache.
Don't Mourn For Us, a letter written to parents by an autistic man Jim Sinclair, should be required reading for all parents. Another blog I love is written by a teen named Ido Kedar who learned to communicate through Soma’s method. His blog Ido in Autismland and book by the same name show a highly intellectual and philosophical mind coexisting with a sensory and nervous system very different from most people. Ido also talks of his deep spiritual connection to God in his post The Hope-Fulfiller.
I’ve also come across some movies which have helped me in this journey. The documentary A Mother's Courage gave me my first look at Soma and helped spur me on take Philip to see her. Wretches and Jabberers, a documentary following two autistic adults as they took their message of presuming competence and self-advocacy around the world, was very moving and eye-opening about the fact that autistic individuals are more like us than not.
So I am learning like crazy. Autism has opened up a whole new world to me, full of adventure, discovery, and growth. I look forward each day to what I will learn next!