Autism Speaks (doesn't yet talk to me)

Just to let people know, I recently discovered that The Autism Acceptance Project website and my blog are resource links on Autism Speaks' website. (If you have trouble go to www.autismspeaks.org, then to Community, then resources and then to blogs).

I want people to know that Autism Speaks never contacted me for such permission to link from their site to mine and in no way am I currently affiliated with them. To link to my sites is open to anyone and I will not deny access, but I do not wish the public to think that there is tacit cooperation between us at this time as they have made no effort to contact me personally for a discussion on why I, along with many others, take offense to the way they politic and market autism.

I am open to having a discussion with Autism Speaks on their politics and the problems with it, with other autistic folks. I believe everyone has a lot to learn from each other, but that autistic people have to be at the forefront of this dialogue, and I stand beside them and every effort to make this happen.

I am happy that people from Autism Speaks' site will be traveling here, but in no way am I endorsing their mixed message, as recently seen on Larry King Live as an example of tying in acceptance with a cure for autism. Many autistic individuals and myself have real problems in applauding people "who become normal," or "who overcome their disability," or "independence" as the Holy Grail. There is a difference between that expectation and celebrating milestones. There is also a difference between the burden of low expectation and the expectation that someone is to look and become as normal as possible.

The difference is that we accept autism as a valuable way of being and contributing to society. We accept that autistic people learn at their own pace and in their own way. We do not hail indepdendence, although it doesn't stop us from also celebrating those milestones that may take a person there. In other words, we celebrate everyone and acknowledge the real challenges not as a form of pity, but in order to enable and assist others to reach their fullest potential. I think that those who directly experience such challenges are far better able to express the dynamics better than I, but as a mother who strives to understand the challenges my son faces, and who is beginning to express those frustrations with others and his limitations in his own typing, this is how I've, so far, made sense of it all.

I invite Autism Speaks and Larry King to invite me on their show to discuss the issues and implications of why their message of tying "hope, cure and recovery" are so problematic and dangerous, and how we can work as allies to stand beside the autistic adults who are really paving the way for our autistic children.

On a better note, here is David Wolman's Wired article (The Truth About Autism -- link on PDF above video) for which he interviewed me for an hour, but TAAProject received no mention.