Today is the first day of Autism Awareness Month. Tomorrow is "Light it Up Blue" day, an annual event hosted by Autism Speaks. I know some of my readers are involved in the autism community, so this is something I felt was important to share.
I have something to say. I'm autistic. I wasn't going to share that on this blog because I was afraid of getting attacked for it. But this month I have to stand up for myself and for people like me.
So before you give a nickel to Autism Speaks, before you send up a blue balloon, before you associate puzzle pieces with people like me, please take a moment and listen.
Here is Autism Speaks's homepage. One of the first things you see is "Autism affects 1 in 88 children." I'm a bit bothered by the fact that they seem to think that once we turn eighteen, we'll lose our diagnosis, but that's not a huge deal, really. All you'd need to do is change the word "children" to "people."
Now let's look at the "What is Autism?" page. "By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined."
Okay, you shouldn't really be comparing a developmental disability to serious diseases. But I get it. These are comparisons that help people visualize how many affected people there are in the US. That's pretty important.
It turns out they don't have a single autistic board member. That strikes me as pretty strange - why not get a high-functioning autistic person or someone with Asperger's on their team, someone who knows what it's like to live with the disability every day? Oh, they have people related to an autistic child. I find it rather strange that they think they can speak for that child, who has opinions of his/her own.
How about here? This is probably the worst page of their website. I want you to read these statements and imagine that these people are talking about you, are talking about your friends, are talking about people you work with and people you love dearly.
"It is painful to love so much, to want something so much, and not quite get it. You want your child to get better..." (Get better? What's there to get better from? This is a genetic disorder. It's not like we are ill.)
"[You may] find yourself having a difficult time accepting and dealing with the fact that your loved one has autism..."
"[I]t is OK to be sad that you have a brother or sister affected by autism..."
"Having a family member with autism can often be very time-consuming, and attention-grabbing."
"...you are outraged that this diagnosis has happened to your child."
By the way, I'd like to say something about that last one. People like me are born this way. Nothing "happened" to cause this (and before you say a word about vaccines, do your research - over a dozen studies have proven that they don't cause autism). We were autistic before we walked into the office of the person who diagnosed us. We were autistic before we (or our parents) filled out that form of behaviors and handed it to the doctor so he could decide if we were affected. Nothing is different when we walk out, except that now we have more information and hopefully more resources available to us.
And another thing. Over and over I see Autism Speaks and people who agree with them talking about curing autism.
Here's the thing. It is hard to have autism. I know it must be hard to parent someone with autism, too. But autism is something that affects the whole personality. It shapes our interests, our knowledge, and our lives.
IF YOU WANT A CURE FOR AUTISM, YOU ARE SAYING THAT YOU DO NOT WANT AUTISTICS AROUND. YOU ARE SAYING THAT THE WORLD WOULD BE BETTER OFF WITHOUT PEOPLE LIKE US.
Albert Einstein had autism, and so did Charles Darwin, although it wasn't called that back then.
Satoshi Tajiri, the creator of Pokemon, has autism.
Gary Numan, a British singer and songwriter, has autism.
Michael Moon, Elizabeth Moon's son, has autism.
There are so many of us who have led successful lives, and without us, things would not be the same.
And here is one last thing, in case you weren't convinced...
Take a look at this video, "Autism Every Day." This is something that Autism Speaks produced and later took off their YouTube channel.
Did you catch the bit where their former Vice President said in front of her three-year-old autistic daughter that she at one point considered driving them both off a bridge as a form of murder-suicide? And that the only reason she didn't was because she had another child (who doesn't have autism) waiting at home?
So please, if you feel the need to do something to help autistics and their families this month, steer clear of this charity. There are plenty of others you can donate to. (This one is a particularly good one.)