July 2012 – The Caffeinated Autistic

First, if you haven’t read what Joe Scarsborough said earlier this week, you can read more here.

Also, some good responses, including a not-great-but-not-terrible one from Autism Speaks (and a really fabulous one from Ari Ne’eman) can be found here.

My thoughts are this – in the end, it doesn’t matter whether or not James Holmes is autistic. Maybe Joe Scarsborough is right. I don’t know. It’s certainly possible. It’s equally possible that he has a mental illness or is perfectly neurotypical. The issue for me is that none of that matters. He took the time to plan and commit a horrific crime. Please, let’s not demonize autistic or mentally ill people and make our lives more difficult because of speculation, of preconceived notions of what it is to be autistic or mentally ill. There are many people who are both or either who manage to live their lives, who have a support system, and who aren’t dangerous to a single person. Does there need to be a lot more support for autistic people and those who are mentally ill? Oh, absolutely! I won’t doubt you there for a second. I realize (based on Scarsnorough’s non apology) that is what he meant to say, and in that case, he’s right. There isn’t a lot of support out there for us, and there should be.

None of that is what people are going to take away from this, however. They are going to hear autism=violence, which makes it all the more difficult for autistic people. It’s going to be more difficult for our voices to be heard, more difficult for us to obtain gainful employment and accommodations. The consequences of his careless words are far reaching.

I wish he hadn’t opened his mouth.

Autism Speaks is by far the most well-known charity that exists in the USA regarding autism. Just because they have the most media coverage and celebrity support does not mean they are a good organization.

Autism Speaks does not have a single autistic member on their board.
Autism Speaks only spends 4% of their budget on “family services”.
The majority of Autism Speaks’ money goes toward research, and the majority of that research is to find a way to rid the world of autism, and thus, autistics.
Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel but can still be found elsewhere.
Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film comparing autism to cancer, AIDS, and blaming autism as the reason why marriages break up.

In short, Autism Speaks makes it much harder for those of us who have autism to be taken seriously. Autism is considered to be a child’s “disease” (which isn’t really accurate at all, as a disorder and disease are two different things, but Autism Speaks treats it as a disease), and you will often hear people say “where are all the adult autistics?” Well, we’re right here in front of you. We may have been misdiagnosed with learning disorders, mental retardation (now referred to as intellectual disability) and other mental illnesses when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now (there are also a few variants of autism or autism-like disorders that I don’t mention here, like Rett’s, but these are far less common). We vary in where we fall on the spectrum. Don’t make assumptions about us because we can use a computer.

For further reading, here are a few resources about Autism Speaks:

Why Autism Speaks is No Good for Autistics.

Autism Speaks Does Not Speak for Me.

I’m Autistic, But Autism Speaks Doesn’t Speak for Me.

An Autistic Speaks about Autism Speaks.

Chart regarding Autism Speaks’ funding allocations

ASAN flyer about Autism Speaks