Monday, September 12, 2011

When will I ever learn...

...to keep my big mouth shut? The answer to that is never, since here I am about to blog about it.

You know what annoys me? People who assume my family is perfect because I have a son and a daughter. You know what else annoys me? People who talk about autism and curing it and they don't know what the fuck they're talking about. Sure they mean well, but how educated are they on the daily autism grind, really?

At work today, a coworker--actually she's an indirect supervisor if truth be told--and I began discussing all the various ways Autism Speaks sucks. I told her I only support autism organizations that have an autistic member on the board, as well as provide resources to adults with autism, and provide outreach and support to families who need help finding therapies, etc. I do not generally support an organization whose goal is to cure autism. Someone please correct me if I'm wrong about Autism Speaks. Last I read this is what they were all about and I've never bothered to look back.

After telling her I didn't see any need to cure autism, as it was not a disease, but simply the way one's brain is wired, she said, "You only feel that way because [name] has Asperger's and is high functioning. Imagine if he didn't have language, if he wouldn't look at you. You'd feel differently."

Would I? I don't know. All I know is what I do know about my life with The Boy. Just because he's an Aspie doesn't mean he's easier to parent than a kid with some other flavor of autism. He's different to parent.

"You're so lucky, he talks to you."

Oh yes. So lucky. He tells me all the time that I'm wrong. He says mean hurtful things that he doesn't realize (or care) are hurtful. He corrects me in public, in front of other adults and sometimes makes me feel like an asshole. Sometimes he never shuts the fuck up. Sometimes he won't go to sleep because he wants to quiz me on Pluto's moons, where the Patuxent River is, and what year Abraham Lincoln was born, and let's not forget he needs to remind me that I forgot to pack his favorite items in his lunch box on October 13, 2007.

So, am I lucky? Of course I am. The Boy is my son. He does a ton of other awesomesauce stuff that is scattered about this blog.

But back to my conversation with my coworker. She continued making her point by saying that she knew a family who had a little girl who wasn't potty trained and didn't talk. "Can you imagine how hard that must be??? Of course they want a cure, I'm sure of it."

Maybe they do. I don't know. I don't know these people. And sure, their life probably isn't easy. No one's life is, autism or not.

I said to her, "I don't know. I just don't. I do know that all human beings are here to teach us something. I have learned so much about life, love, and myself by being [name]'s mom. Maybe they are content, in spite of autism."

And then she brought up vaccines and I just had to end the conversation. I have such strong feelings about vaccines and autism that I can't even discuss it rationally. I get angry. And when I get angry, I cry. And there is no way in hell I'm going to cry at work about vaccines. It's a character flaw that I have been unable to fix.

So, there it is. I don't feel there is a need to find a cure. I feel there is a need to find understanding. And the next time the topic at hand comes up, I'll try to remember to keep my trap shut!

3 comments:

Lauren said...

I just found another reason we must have been separated at birth - I cry when I'm pissed too and can't figure out how to control it.

Anyway, this sounds like it is similar to people who say we should cure deafness. Why, because you are too inept to figure out how to communicate with that person? Because you can't figure out how a deaf adult drives to work, talks on the phone, or learns their child is crying? (Those examples directed at the people who believe they are not possible, not those who simply don't know how they happen.)

Sadly, people on the outside of a situation rarely understand it but love to spout off about it.

Allison said...

I don't think you should feel badly about speaking your mind. People just don't get it, yet they feel the need to contribute their .02 based on what they've heard on the Today show, or read in the latest whatever. I think you handled it very well, by asserting an opinion yet keeping your cool.

People are so annoying! Sorry you had to go through that.

Sarah said...

I don't think you should feel bad - I think it's CRUCIAL for you to keep talking about it! I had to explain to the head of an organization I sit on why I couldn't support our fundraiser for Autism Speaks. It's not only that they are looking for a cure; it's that they prioritize it above taking care of people AND act as though people with autism are incompetent to work on their own behalf. Keep fighting the good fight!