Autism Speaks, the largest and most powerful autism organization there is with enough real power to make a real positive difference.
Ah to dream.
I mean, don’t get me wrong. They have brought about some big changes and it can be argued that they have raised more awareness than pretty much anyone else in history. But at what cost? And using what methods?
Fear. A lot of fear.
They have a long history of fear mongering with videos that depict autism as a deep voiced child predator or as an epidemic that makes moms want to throw their children off a bridge. They spend donation money on all those research studies that you hear about in the news that links “an increased chance of autism” to such things as tylenol, c-sections, premature birth, living close to a freeway, being old and on and on and on.
There’s really no point in rehashing history. I’m sure you’ve heard it all before. I’m also sure that you’ve heard about what’s happening this week. Autism Speaks is heading up a “summit” in Washington DC where they’ll call on the government to come up with a “national plan” against autism. Yes, “against” autism.
To this end, Suzanne Wright, a co-founder wrote this piece on the Autism Speaks website: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action
This post, this whole “action plan” is deeply disappointing. It is disturbing, disgusting, shocking and all together frightening.
Putting in bold, in 3 separate places “this is autism” is not just wrong, it’s designed to make people fear autism, hate autism and want to do what ever they can to wipe it out. I’m sure they do not deny this. It’s very clearly the purpose.
It’s a fear mongering tactic.
Now, granted, there are some that have autism that truly are in a great deal of pain, completely incapable of any perceivable form of communication and really could do with some level of “curing”, not such that they’re not longer be autistic necessarily maybe but just so that they are no longer in pain and able to function independently.
That’s fine.
But to say “this is autism” and spout scary numbers and say that “these families are not living” is basically equivalent to turning millions of people into monsters that are to be feared. If they used a child as an example of.. well, an example… that would be different. If they quoted numbers of those that are specifically that bad off, that would be different. But they don’t. They claim “this is autism” over and over again. They attempt to speak for us all. They attempt to lump in those of us that do not need to be spoken for in their big monster horror film.
Sure, Autism Speaks can go to Washington and push for help for those that need insurance and aren’t getting it, they can push for more therapies, research and medication for those that need it.
But there should ALSO be those going along with them to make sure that all the other autistics are represented and accounted for as well. That all the families that have children that need those things but don’t see their child has a monster are represented as well. That all those that are unable to speak but are still able to express an opinion are represented as well. That everyone… absolutely everyone… is heard.
All of us… that is autism.
There is something amazing to come of this though. The comments. The autistics, the parents, the community… all of those people outraged in the comments, they give me hope.
This is the message to Autism Speams and to the government and to the world:
We are the voice that should be heard. We are the ones that you dismiss. We are the ones that you attempt to speak for and silence and remove. But we are the ones that matter. We are the ones that need to be a part of what directly affects us.
I have autism, my child has autism and thousands of others just like us are telling you, right here, right now, this is how it really is.
All of us… that is autism.
With that, there’s only one thing left to say:
Hey Autism Speaks… it’s time to listen.
Loving life, not silent, not to be feared, not to be spoken for.
PS
I’m including some other great posts/discussions on this because I believe, as we all do, that we should have the right and opportunity to speak for ourselves.
http://autisticadvocacy.org/2013/11/asan-aac-statement-on-autism-speaks-dc-policy-summit/
http://paulacdurbinwestbyautisticblog.blogspot.ca/2013/11/autism-speaks-kidnaps-policy-summit.html
http://www.mostlytruestuff.com/2013/11/autism-speaks-speak-son.html
http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/
http://theautismwars.blogspot.ca/2013/11/a-mouse-that-roars-standing-in-defiance.html
http://www.decipher-morgan.com/2013/11/autism-speaks-isnt-speaking-for-us.html
