Autism Speaks by its name and by its clearly evident success has positioned itself as the most powerful non-profit organisation in Autistic affairs.
On the face of it this could be seen as commendable (and indeed it is a strength they use very well). They are happy styling themselves as spokespeople in Autistic affairs and management. They are in effect holding themselves out to the world as the mouth-piece of all people on the spectrum.
As their star rises spectacularly and they encroach evermore into new grounds of Autistic Affairs, unchecked and unquestioned, with all the righteousness, fanaticism and zealousness of the Knight Crusaders into the Holy Lands (or at least that is the images it brings glaringly to my mind), a sombre thought crosses my mind.
Whilst I may look for words to express my sense of wrong, of inappropriateness and impropriatiety, I found in a friend, words to express it far better than I. This is what she recently wrote to me in discusing this very topic.
“A very simple notion came to me today. We didn’t ask any of these organisations to handle our affairs, they have not sought a mandate to handle our affairs, and, as adults, we do not seem to derive any discernable benefit from them handling our affairs.
(It is possible Autism Speaks cannot produce one single Autistic who has asked them to speak for him/her)
We do not owe them any gratitude or respect…the boot is on the other foot…they need to seek our permission to speak in our name, and owe us apologies for every time they have obstructed our lives by getting it wrong.
Autism belongs to we the autistic, whether we like it or not…without a clear voluntary mandate from us, anyone else is just an uninvited tourist.
…and $60 million US is an unseemly amount of money to be mysteriously garnered and deployed in our name (without showing account of source or destination) by an uninvited tourist…”
It is true.
There is not the respect nor the sense of even pretense to wanting to work with the people on the spectrum who may have a voice. It is arrogant to my thinking.
I see no respect in this:
I do see demonising a condition. I do see a want to condemn and malign the individual for what they are inherently. They have Autism. They are Autistic. When they demonise Autism they slap the face of everyone on the spectrum. They do it whilst staging clever videos and spreading fear into the hearts of parents of children with Autism and using clever PR, Media and political machinations.
In all of this they are successful. They dominate where they encroach. Slowly but surely they become not a voice, not a strong voice but the dominant voice which controls dialogue and ultimately censors and controls all those not holding THEIR view of what Autism is.
So one day they may ultimately be the voice of Autism by which all dialogue is filtered through or dismissed for worthwhile discussion. Whilst it may be a sad day when it happens, why should it matter? I am certainly too old and too far removed from them to personally be affected by whatever changes they make. My son? Maybe he too.
But their effect on the Autistic community in general in the present and the future more than scares me and i feel a driving need to do or say something. Why?
Well with that I remember another passage written by someone else. It is a chilling little piece of prose, from a German Pastor,Pastor Martin Niemöller
They came first for the Communists,
and I didn’t speak up because I wasn’t a Communist.
Then they came for the trade unionists,
and I didn’t speak up because I wasn’t a trade unionist.
Then they came for the Jews,
and I didn’t speak up because I wasn’t a Jew.
Then they came for me
and by that time no one was left to speak up.
This echoes in my mind with their every video and every announcement and every action. It is more than a little disconcerting.