Last night I attempted to explain to someone why autistic people hate Autism Speaks. With another person (who did a better job than me), I laid out a case that they were a hate group that does no good for us. And what did I get? Ignored and told I shouldn’t judge a charity by bad people in it.
Here’s the thing. I explained clearly that they were not a charity, and even cursory research shows they have an abysmal record, and that they as an organization were bad. And I was shut down because they were believed over me.
This is a patten I need to discuss. Not all but far too many Neurotypical people trust “experts” over us. Experts can be teachers. They can be researchers. They’re often parents. What they never are, save for Dr. Grandin, are us.
I get it. Autism is a mental condition. It’s a lens that distorts our world view. I understand distrust of a distorted perspective. At least in theory.
Here’s the reality though. When we discuss what it feels like to be autistic, there’s no distortion. We’re clearly laying out how it feels to be us. We’re telling you exactly what’s going on in our heads. A parent can live with a child for years and never know what we know.
We’re also rather skilled at research. It’s funny how being an expert on various subjects is a stereotype of the condition up to the point where we discuss that condition. Then we know nothing. But seriously we have researched ourselves more thoroughly than any other subject. We have to to survive.
We are also quite good at expressing this. I’m far from the only blogger out there. There’s tons of us. Many are better at this than I am. So we’re quite loud to be clear.
But this is the most important point: it’s basic decency to listen to us. We’re the ones living with this. We’re the ones affected despite the hype. Just do the right thing and assume we know what we’re saying.
Because we do.