Happy World Autism Awareness Day
Apr. 2nd, 2014 03:01 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
handful_ofdustToday is World Autism Awareness Day, a holiday basically celebrated every twenty-four hours, at my house. Given Cal in nine years old now, that means it's been roughly six years since we got the definitive news, and the first thing which springs to mind is the injunction to always remember that a person is not a diagnosis. Things Cal is include: good-hearted, loving, sensitive, musical, handsome, funny, energetic, with a frankly incredibly memory for stuff he's genuinely interested by...as I was remarking to Steve the other after noon: "Once things go in, the don't ever come out, do they?" And he's also autistic, a fact many who don't know him are surprised to find out. He has it, it doesn't have him.
The other thing which occurs, however, is that this is the day when a lot of people around me start pushing Autism Speaks as their advocacy network of choice, which is something I just can't get behind. The key challenge of having a non-neurotypical child is that you find yourself necessarily slotted into the position of being his advocate, even as you desperately want to get him to a place when he can advocate for himself. To that end, I'd like to highlight ASAN, the Autistic Self-Advocacy Network (http://autisticadvocacy.org/about-asan/), whose motto is: "Nothing About Us, Without Us."
Autism Speaks is notorious for cutting actual people with ASD out of the conversation, preferring to concentrate on seeking out a cure--neither something that's likely, nor something most non-neurotypiucal people would want--and prvileging the narratives of interveners over the people they're supposed to be intervening on behalf of. ASAN offers an alternative, one I truly prefer to get behind, even if it's one I am necessarily barred from participating in.
Though I don't consider myself completely neurotypical, I nevertheless have a pasing privilege my son doesn't (not at the moment, anyhow), so it behooves me to remember that. But one way or the other, no organization which claims to speak for the neurodiverse should ever do so without neurodiverse participation, full stop.
The other thing which occurs, however, is that this is the day when a lot of people around me start pushing Autism Speaks as their advocacy network of choice, which is something I just can't get behind. The key challenge of having a non-neurotypical child is that you find yourself necessarily slotted into the position of being his advocate, even as you desperately want to get him to a place when he can advocate for himself. To that end, I'd like to highlight ASAN, the Autistic Self-Advocacy Network (http://autisticadvocacy.org/about-asan/), whose motto is: "Nothing About Us, Without Us."
Autism Speaks is notorious for cutting actual people with ASD out of the conversation, preferring to concentrate on seeking out a cure--neither something that's likely, nor something most non-neurotypiucal people would want--and prvileging the narratives of interveners over the people they're supposed to be intervening on behalf of. ASAN offers an alternative, one I truly prefer to get behind, even if it's one I am necessarily barred from participating in.
Though I don't consider myself completely neurotypical, I nevertheless have a pasing privilege my son doesn't (not at the moment, anyhow), so it behooves me to remember that. But one way or the other, no organization which claims to speak for the neurodiverse should ever do so without neurodiverse participation, full stop.
