So What Is Autism Advocacy?

Sometimes, quite to my puzzlement, the phrase "autism advocate" seems to have come to mean "pro-vaccine-safety" or "anti-vaccine" advocate. That's not "autism advocacy" but "something else [vaccine safety?] advocacy." Advocating for my son on the autism spectrum, Charlie, is why I got into blogging in the first place.

Back in the summer of 2005, Charlie was 7 and having a really incredibly hard time at school and in general and, after I picked him up at summer school, we were pretty much stuck inside our house with the AC blasting away. Going to stores had become too hard---food got eaten, packages open, Charlie wandered into aisles unknown---and the library was out of the question. The playground equipment was burning hot but it seemed impossible to explain this to Charlie, who had been in danger of burning a hand and more on more than a few occasions. Jim was at work and, when I shut the door after walking Charlie home from school, an intense feeling of isolation overcame me.

So one day, after the principal had called me and told me I had to bring Charlie home "or else," I sat down at my computer, found Blogger.com, and started my first blog. It was entitled My Son Has Autism; the first post was mostly a photo of Charlie swimming on the first day the town pool opened. Many posts followed and the blog, renamed Autismland in December, became a daily log of one of the toughest periods of our life with Charlie.

In November, we took him out of his special ed classroom in our old town; in mid-December, he started attending a private autism school; in June of 2006, that school closed and we moved in with my in-laws so Charlie could go to school in their in-district autism program. In early September of 2007, we moved out into own place and.....

Ok, this post is not meant to be a blow-by-blow account of our past few years. I've set myself the task of explaining what autism advocacy is or, rather, what it is to me. "Autism advocacy" is s a phrase that means different things to different people. Dora is writing lots about self-advocacy. I have a friend who is a "parent advocate" and attends IEP meetings with parents of autistic children and talks to lawyers and emails administrators and observes classrooms. In October of 2006, Jim, my husband, organized a conference on autism and advocacy: witness and hope which looked at communities of faith engaging autism. I gave the closing reflection at the conference and talked about how the Latin word vocare, "to call," is at the root of the word "advocacy"; I talked how I feel called to do what I can, as much as I can, to change myself and the world to make things better, safer, good and right for Charlie.

Another Latin word, vox, is related to the word vocare and I named my old blog "Autism Vox"----which I wrote kind of lot of posts for from March of 2006 to the first week of this year, 2009----with the phrase Vox Populi, "voice of the people," in mind. My own advocacy is rooted in seeking to help my son and individuals on the spectrum attain the best education, supports, services, and accommodations that they not only need, but they more than deserve. Advocacy for me starts by looking at the person in front of me (or rather, looking up at the person in front of me, as these days Charlie has four inches over me) and trying to understand how I might best participate in helping her or him achieve their potential.

A tall order to fill----- I think I can do it so long as Charlie is beside Jim and me.