Autism Speaks Doesn't Speak For Our Family

I don't think I've ever addressed this here. I need to. It's important. It's about neurodiversity.

My son's brain doesn't work exactly like mine, and that is okay. In fact, we like it that way. We don't want to change him. We appreciate his differences.

Is it always easy?

No.

Does the world need more people like him?

I think so. He's a pretty interesting dude. He brings a lot to the table.

Does he need a cure from a disease?

No.

Does he need to be fixed?

No.

Should we prevent children being born like him?

No.

Is there an epidemic?

Depends on how you look at the statistics. Which version of the DSM are you using? He would have been called something different in each one.

I do not donate money to Autism Speaks.

They do not speak for my son.

Fortunately for my son, he has a voice that he is able to use to speak for himself. However, just because a child isn't able to use his voice doesn't mean he has nothing to say.

Think about that.

Brains are complex, interesting, unique things. They aren't puzzle ribbons.

Here are some valid, concrete concerns about Autism Speaks as an organization:


  • Autism Speaks' advocacy is based on the view that autism is a disease, a viewpoint not necessarily shared by autism scientists and certainly one not shared by many autistics.

  • Autism Speaks perpetuated the myth that vaccines cause autism, contributing to reduced vaccination rates and the deaths of young children from vaccine-preventable diseases.

  • Autism Speaks uses fear-tactics to raise money. Case in point, their video I Am Autism, which personifies Autism as a child-stealing criminal.

  • Autism Speaks has an agenda of eugenics; they want to screen prenatally for autism and, according to their co-founder Susan Wright, "ultimately eradicate Autism for the sake of future generations."

  • At last report, Autism Speaks had no representation from the autistic community on their Board of Directors. None. How do you speak for a people without the people? Is the NAACP made up of white people? I think not. Is NOW run by men? It is unheard of for an organization representing the disabled and disinfranchised to not include those effected in their decision-making members.

  • If, somehow, none of this bothers you, at the very least, you should have some concern that according to their 2010 annual report, Autism Speaks spends OVER HALF of their proceeds from their collected contributions to pay management salaries.


What's the alternative?

 

There are a number of organizations that include the autistic community in their governing bodies and work to advocate for their rights as neurodiverse people, services for children AND adults who needs them, and research that is meaningful in finding out HOW brains work to determine best-practices for assisting people who need it and want it, not in the view of autism as a disease or dysfunction, but as a difference.

Here are some of those organization who are supportive of autistics: