Wednesday, October 15, 2014
He isn't Rain Man, He's Superman; Getting Beyond the Stigma of Autism
I wish I had a dime for every time someone told me my son does not look autistic. No, really, I would have a pretty hefty bank account. I have heard it from strangers, friends and family. I have actually heard more than once that I am lucky he does not act as autistic as some children with autism. To some, this may seem like a compliment, but for me, I know too many amazing little people on the spectrum to think negatively when I hear the word autistic. I see countless videos of my friends' children on the spectrum who are laughing and smiling and enjoying life. Granted not every moment is easy or happy, but with or without autism all families have our challenging days and moments. Before delving into the world of autism, my husband and I were guilty of believing these stereotypes as well. We told ourselves many times that our son could not have autism because he smiled and made eye contact. This is a very common misconception, which is perpetuated by pediatricians using that as the only criteria to diagnose autism and dismissing parents' concerns about their children. We watched Mercury Rising and saw way too many similarities in our own child, but we comforted ourselves with the fact that our son talks, our son smiles, and our son looks at us.
Once we got the diagnosis, things started to make sense. And yet the more I learned about autism, the more I saw that it presents differently in everyone affected. All of my preconceived notions regarding autism flew out the window. I used to hear people talking about a family with a child with ASD and I automatically assumed that family was sentenced to a lifelong hardship. I thought "That poor mother, I am so glad all of my children are healthy."
But now that the mother is me, and that is my son, and this is our family; this is what I want you to know: My child is not any less because he has autism, he is more. Our days and nights might be hard sometimes, but that doesn't mean I'm miserable or always tired. We don't shy away from our son's stims or obsessions, we embrace them and he amazes us everyday. We are not in denial and are not ashamed to talk about autism, it is a part of him and despite its challenges, a pretty amazing part of him.
Anyone who has been around Evan for a small amount of time would not even know he has autism, if we are having a good day. But make no mistake, years of intervention and therapy and hard work enable him to function as well as he does. After about an hour, it is obvious that Evan is different. Whether he is noticing a fly on the outside of the window from three rooms away and runs to talk to it or if he is rocking and chanting in the doctor's office to calm himself down; the differences are there. I used to shy away from these differences, but lately I see how much it helps him regulate to rock or jump in public. I would assume onlookers would rather he do that than lay on the floor screaming because he is overwhelmed by the fluorescent lights or the air conditioner humming. So he rocks and I smile and we go about our day.
While we were going through the process of getting a diagnosis, we happened to watch the movie Man of Steel. After watching the following scene, my husband and I looked at each other and we were thinking the exact same thing. Maybe this isn't a disorder we are dealing with. Maybe our son struggles so much because he has a gift and does not yet know how to reign it in. Maybe for Evan the world is just too big.
(Forgive the subtitles, it was the only clip I could find)
Imagine feeling too much, hearing too much, seeing too much, smelling too much every time you walk into a room. That is life on the spectrum. And as well as he does to cope with it everyday, there are days when all of it is just too much. And those are the days we power through.
But most days are full of deep pressure snuggles, tickles and a belly laugh that is out of this world, and pure joy when surrounded by the things he loves. He is far from Rain Man. He has autism and he is Superman.
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