Off-Group Topic (Autism)

In the interest of not derailing the previous thread entirely, EF suggested we start a separate topic for Autism related issues. Here goes.

And EF, I asked a couple of my friends within the community why they thought that AS is not the best of groups. I'll let you know as/if responses come in.

This was one of the first I got...

"Autism Speaks spends more than half the money they raise on paying themselves 6-figure salaries. Most of the rest goes to "awareness" campaigns that spread fear and misinformation about autism in order to pull in more donations - funds that could be going to smaller organizations that actually provide services to autistic people and their families. The false and negative stereotypes that they promote stigmatize autistic people in ways that diminish their quaility of life. They do put money into researching "cures" for autism - but by "cure," they mean developing a prenatal genetic test that will facilitate a campaign of eugenic abortion to prevent more autistic people from being born. Autistic people have no voice in shaping the policies of Autism Speaks, and they ignore or actively seek to silence the voices of autistic self-advocates."

That last part about autistic self-advocates is huge. It's an organisation that presumes to speak for the community without listening to the community.

Here's an open letter to the donors and sponsors of AutismSpeaks.

And here's Lydia Brown's (more about her later, if you'd like) letter to the President of Holy Cross College regarding their planned support for Autism Speaks.

http://autistichoya.blogspot.com/2012/03/responding-to-autism-speaks.html

I realize that it's probably too late to cancel "lighting it up blue" for Autism Speaks, but I am very disappointed to see that you have chosen to support an organization that nearly all Autistic adults do not support and cannot condone. I cannot condemn Autism Speaks strongly enough.

Autism Speaks routinely excludes Autistic people from discussions about us, and to date, has not one single Autistic person in its leadership either nationally or locally. This goes against the principles of the disability rights movement, where organizations representing people with disabilities have many people with disabilities represented in their leadership, if not running and directing the organization altogether. In response to criticism over this, Autism Speaks appointed one Autistic adult to one of their advisory boards two years ago, but this is one Autistic person on a board with twenty-nine other people, none of whom are Autistic. There remain no Autistic people involved in the actual administration and direction of the organization.

And another friend sent me this link...

https://sites.google.com/site/notautismspeaks/home

Thanks, Jesse. I knew they were controversial, like TACA, but was unaware of a lot of the details you demonstrate here. All rather disappointing to hear, but not surprising, given the similar bloated bureaucratic so-called advocacy groups we've encountered elsewhere over the years that have proven all too often that they exist mostly for themselves rather than the people they purportedly "serve".

There's a very heated argument at the moment about autism. And a lot of it centers around how much of it is disability. And how much of it is just a perceptually different way of seeing the world that carries its own baggage and its own gifts.

Here's another take on the media coverage of George Hodgins' death. The author, Amy Sequenzia, is a "non-verbal" "low-functioning" autistic poet.