As many of you know, I try to stay away from the more controversial topics in the Special Needs world on this blog. But, the Autism Speaks controversy is one that really frustrates me and one that I need to talk about.
Just over a year ago, I wrote one of my most popular posts: “Autism Speaks?”, this was just after Autism Speaks (US) released a video calling out Government Officials about making a better plan for the Autism Community. In theory, a great idea. A necessary idea. But, the way Autism Speaks approached it was appalling. I won’t get into all of that again but, feel free to read the original post.
On November 11th, 2013 Suzanne Wright, one of the founders of Autism Speaks, released a statement. A statement that has had most of the Autism community in an uproar. For some very good reasons. Suzanne demeans Autism families. She essentially says that a life with a child with Autism is not really a life.
“These families are not living.”
She actually says that. Referring to families of children with Autism, she says that. Who does that? The statement is hurtful and demeaning. As I’ve mentioned so many times before, Autism Speaks is taking the Autism Acceptance movement and pushing it ten steps back. People in the typical community see statements like this one and it scares them. Especially when it is released by THE biggest and most influential Autism organization in North America. People begin to pity the Autism community. Parents fear an Autism diagnosis. Integration is becoming more difficult. Autism Speaks should be protecting individuals with an Autism Spectrum Disorder, not making others scared of them. That’s ludicrous.
Don’t get me wrong, I understand why they are calling for an “Action Plan”. I understand that they want more support from the Government. We need more support from the Government. Yes, Autism families need more funding. Absolutely. But, degrading families and people with Autism in the process is not the way to go. It’s hurtful. This statement has been a final straw for many Autism Speaks supporters. There has been an outcry about the way they support for years. People have tried and tried again to help them understand the hurt they are causing but, it doesn’t seem to stick.
There are parts of Autism Speaks that I really do enjoy. At least here in Canada. Since I am/have been involved with Autism Speaks, I will say that the local events I’ve attended have been great. They been accepting and adaptable and all-around great. Our local chapter is awesome. But, I have a hard time associating with an organization that so loudly demeans those with Autism. It’s not right.
We need to focus on acceptance. We will get nowhere if we don’t move forward. As opposed to taking money and spending on finding a “cure”, provide families who can’t afford support and therapies, with support and therapies. Research further into those therapies like IBI and ABA that we know work. Try and find new ones. Put less focus on scaring the hell out of others and more focus on helping the families in our close-knit community who need it.
See the ability.
Here’s a collection of my favourite blog posts about this:
Mr. John Elder Robison recently resigned from his roles at Autism Speaks.. read about that here: