Misunderstood in Public
Hi.
My name is Carrie.
I have five kids, and my second son has autism.
His name is Jack. He is fifteen.
Every so often I come across an article about how a person with a diagnosis or a disability was asked to leave a public place because they were too loud, or disruptive, or misunderstood.
Broadway musicals.
Movie theaters.
Water parks.
When you have a child diagnosed with autism, doing something as simple as going to the grocery store, or a Little League baseball game, can be a challenge.
We spend a lot of time preparing, is what I am trying to tell you. We pack the right snacks and practice social stories and hope against hope that the lights won’t glare and the speaker volume is a little lower than usual.
It’s been fifteen years with this boy of mine, and I still have to do it.
I have to remind him that we don’t cut in front of other people to get candy at the movie theater, no matter how excited he is for his Skittles.
I explain—again—that we don’t pick up all the lemons to find the one that is the yellowest.
I do all of this before I even leave the house.
And when we do eventually get to wherever we are going, I carry with me the smallest pit in my stomach.
Will he remember the social story about not asking women if they are pregnant?
Will he be patient in line?
Will he say hello if someone greets him?
My son is misunderstood.
People think he is loud, rude, obnoxious, spoiled.
He is none of those things.
Well, he can be a little loud when he gets excited.
He loves Skittles.
We brought Jack to see the show Hamilton.
We spent a whole lot of money on tickets and we knew he wouldn’t get very much from the music and we knew we would spend a fair amount of time making sure he didn’t take away from anyone else’s experience.
Maybe you are wondering why we did this.
Why not look for a sensory-friendly viewing of Finding Nemo somewhere? Or better yet, just stay home?
I’ll tell you why. We did it because we want offer our son the same experiences we offer all of our children.
We did it because I don’t want to sit in my house with my rare bird in his gilded cage. It’s not right. It’s not fair.
I have to stretch him. Like the proverbial rubber band, I need to teach him how to flex and bend without breaking—how to shield his eyes when the fluorescent lights are too bright, and to wear his headphones when the music is too loud.
I can’t do this sitting in my living room.
He does so much to simply exist inside the parameters the spectrum disorder has imposed upon him. This is not easy.
He didn’t ask for autism.
We didn’t ask for autism.
Every day, I fight for your place in his world.
And every day, I fight for his place in yours.
Will you help me?
Will you listen for the joy in his voice when he buys his bag of candy?
Will you glance toward the light when you see him cover his eyes?
Will you hear the music through his ears?
Will you make room for him?
Written by, Carrie Cariello
Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children.
Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.
She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.
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