Friday, October 2, 2009

"I am me and I have autism"

There's a new video out from Autism Speaks called "I am Autism." I'm not going to embed it, but you can see it here.

The video has stirred up quite a furor among the autism community, so you may have already seen it. I first saw it a little over a week ago when it was posted to one of the mailing lists I'm on. I'll be honest - I didn't like it. I really didn't like it. I don't like how it portrays "autism" as some kind of malevolent entity actively and purposefully trying to destroy our families, our children, our marriages, our lives. As if "autism" was the devil incarnate. That's how the voice makes it sound. The second part of the video talks about how the love of parents / families is stronger than autism, which is fine, but again, it's presented as the families fighting against some sort of evil entity.

I wasn't going to post about it - after all, much has already been said both for and against the video. And although I didn't like the message of the video (as I interpret it), I don't begrudge those who interpreted it differently and felt that this video spoke to them.

My main reason for posting on it is that I wanted to share this response that was posted to the same mailing list where I first saw the video. The woman who wrote it is a musician who has autism, and I really appreciated her perspective. The last part is especially beautiful. I share it with her permission.

"I have encountered many road blocks that are thrown in my path, many thrown by not just those who think I can't, but by those who are afraid I can (maybe better than they). It is true that autism makes for very frustrating days but not just because I struggle to speak. Often times it is because many don't listen to what the quiet in me has to say.

What about this "wall I live behind" does it need broken down? No, I just need people to be brave enough to climb the wall and see me. This wall is my protection from a world that is widely judgmental of the odd, but if you take the time you might see the world through my eyes. I understand that this gets harder to see in those where autism is louder than our personality traits but just like anything that requires faith in this life, you just have to believe that a vibrant personality lives inside those with autism ... and in those brief moments when personality and autism sing together in harmony, you the normal will learn from autism.

No matter how "well-adjusted" I am seem or how many social rules I have learned, I am still lonely and sad. Why? I learned to play by the rules I was taught was normal, so why am I so lonely? It is because social rules are nothing but a script of hollow actions for most of us with autism. We learn the rules because it looks better to the NT world and often gets us more of what we want. Yet the essential need is left empty because when people look at me, they see autism that ate me up and robbed me from my potential.

Listen to me play my song to you through my special interest and you will no longer be convinced I am the one in need of a cure. With autism, I can dance everyday even when there is no music playing. With autism, I can shut the world out and hear only the trees and the sky and the earth. With autism, I care about the world so much that pretending seems mean when I know I can be truthful. I am not autism. I am me and I have autism."

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K on October 3, 2009 at 8:00 AM said...

goodness that was a lovely post - you are so or right

Patty O. on October 3, 2009 at 7:29 PM said...

Wow! Thank you for sharing that. It really put things into a different perspective for me. I especially like what she said about not breaking down the wall, but climbing it. I worry about this with my son. He hasn't been diagnosed yet, but we think he may have Asperger's. I struggle with what I should teach him. Do I try to minimize his quirks so he can fit in better or does that change who he is? Shouldn't people accept him for who he is? On the other hand, I don't want him to be rejected.....So many worries.

Anonymous said...

I love that. The last part Is beautiful. Thank you for sharing that.


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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