As I recently wrote, Autism Speaks has once again shown it’s lack of respect for autistics and their parents with an opinion piece by Mrs. Suzanne Wright, co-founder of Autism Speaks.
I left the message below in response to Mrs. Wright’s piece.
I can not resign any position with Autism Speaks, as John Robison has done. I have been a member of one autism organization–a group which later became the local chapter for Autism Speaks. I resigned that group when they showed that they would waste their efforts lobbying against legislation that had nothing to do with autism. I’m glad I quit then.
One thing autism has taught me is that so many things we take for granted are gifts. It is a gift to have average or above intelligence. We don’t earn intelligence. It is our responsibility to use our gifts well.
Mrs. Wright, you aren’t using your gifts. After years with the autism community, you continue to speak for us as without understanding us. You aren’t using your gifts. My kid will never have the ability to understand the world like you can. Your gifts are squandered and that is a terrible shame.
I am doing more than “existing”. I am living. Is it harder with a disabled kid? Sure. It’s harder for him.
Use your gifts. Much more–use the gifts of those working for you. Learn how to frame the situation as being difficult, for that is what it is. But not as a life without hope. A life of despair.
I live. I love. I have joy. My son lives. Loves. Has joy. I have not lost touch with him. He has not lost touch with me.
It will be harder for him to enjoy life if the world sees him as less than a full person. It will be harder for him if we don’t put his needs first rather than mine. Please learn to put first the needs of the people we represent and advocate for.
If we in the autism community can’t put forth this message, how can we expect the rest of the world to do so?
Before we can craft a national plan we in the autism community must have a plan of our own. It must start with respect. Respect for autistics. Respect for families. And you are not showing that.
I saw the response Autism Speaks put forth in your home town newspaper in Florida. Please stop dodging this important question by framing it as “high functioning” adults vs. parents of “low functioning” children. Many of us who are parents of children with great challenges disagree with your stances. We’ve been telling you this for years. It’s time to listen.
By Matt Carey