Monday, November 18, 2013

This is Autism (Erica A. Wise

Written by Erica A. Wise

"This is the week America will fully wake up to the Autism Crisis.
If three million children in America one day went missing--what would we as a country do?"

These are the opening lines of Suzanne Wright's call to action for Autism Speaks policy and action summit in Washington this week.  Later in her call to arms, she says things like "These families are not living."  "This is autism.  Life is lived moment to fear of the future."

I want to set the record straight.  Our family is living, our lives are not full of despair, nor do we fear the future.  Life is lived with an appreciation of moment to moment that I wish I could have gotten when I was an anxious twenty something, biting my nails about my own future.  Most of all, my two autistic, unusual kitties are not missing.  If anything they are more present, most definitely here, living life loudly, messily, sometimes joyfully, pretty much like the more typical children of my acquaintance, except maybe sometimes a little more so. 

I'm not going to surround our lives with pretty sparkles.  That loud and messy part is definitely sometimes too loud, too messy.  My kids need supports that most of the other kids can do without and the struggles of each age are often more intense.   Being their parent is a challenging job.  So much of what is difficult though, is dealing with a society that isn't sure how to deal with them.  I won't say our lives are just exactly like the lives of the more typical families around us.  But they are our lives, our busy, hectic, frustrating, interesting, funny lives.  In that way we are just like the millions of other families with kids in this country.

That is the reason to have a national plan, because we are a part of this nation, and we deserve a voice.  We deserve a voice that doesn't believe that the nation would be better served by making sure there aren't more kids like mine.  A voice that that thinks telling the world that we are a burden, a cause for despair, and a scourge or an epidemic is somehow helpful to us.  In case it isn't obvious, it's not helpful.   My children, their parents, and autistic people throughout the nation have plenty to contribute.  Every person has the ability to change the world for the better, autistic or not.  I hope we can support champions who are in favor of finding ways to help every person share their abilities, without this terrible assumption that somehow we can know what that contribution will be, before a child is even grown, before an adult life has been fully lived.

So, to me, saying "This is Autism" is the same as saying "This is our lives".  Autism is children who meow and hiss at me when they are angry.  Autism is a little boy who has a plastic dinosaur for a buddy.  Autism is feeling like red touches your soul.  Autism is knowing that in the future you are going to invent the most awesome thing ever.  Autism is worrying that your children are going to be mad scientists who rule the world.  Autism is thinking they might also be the super-heroes who save the world.  Autism is needing to go into a quiet room to talk to a friend.  Autism is knowing the importance of that friend.  Autism is hearing that far away sound that no one else hears yet, and letting the group know the train is coming. Autism is feeling like you will never see again if the flash bulb goes off. Autism is knowing exactly where all the light switches are, even though you've only been here once before.   Autism is having so much energy you have to just shoot yourself straight up into the air like a rocket.  Autism is feeling so tired that you just need to lie down right here.  Autism is not always understanding what people mean when they say things.  Autism is sometimes understanding just what people mean down underneath everything they are saying.   It's living our lives. For me it's also raising our children.  The real children that we do have, not the ones we imagined might appear, but the kids that are living right here.  Autism is being human, and both the same and a little different than everyone else who is human. 


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