For Spring Break we took a family vacation to the Mall of America. It was nice to get out-of-town and walk around, seeing the sights, riding the roller coasters, and being conned into zip lining by my 8-year-old son.
It was on our first day at our hotel that we met Austin and his Mother. We would see them only once, and not for the rest of our trip. How we met during breakfast was simple. Austin, around my son’s age, was wearing the same pajamas as my son. A cute little red-haired boy who came up to our table to smile at my son, delighted they accidentally dressed as ‘twins’.
Austin did not speak to us, just smiled. His mother came up to us, put her hand on her son’s shoulder and spoke these words.
This is Austin. He’s Autistic, not broken.
I said hello, and then it hit me what she said. It was cute, catchy, and sounded like a mantra she had repeated often. And although I only met Austin and his Mother once on that trip, I have thought about what she said, that mantra. Autistic, not Broken.
I went though a lot emotions thinking about this mantra, from finding it mildly offensive. I never said your kid was broken lady! to inspired. What a great way to introduce autism to others! Yet I couldn’t get over the sadness of it all.
See my youngest daughter is High Functioning Autistic. I never told this to Austin’s mother. I didn’t have a chance. I have never thought my daughter was broken.
Then again, maybe I have.
As hard as it is to admit. There are many times I wish my daughter was not Autistic. Sometimes this wish is selfishness on my part, most it is for her. I absolutely HATE the fact the world will be a challenge for her. That people will look down at her, ignore her, and ultimately categorize her into a slot that they can ignore.
The endless explanations to family, friends, strangers, about why she behaves this way or that. Or choices we are forced to make on behalf of our daughter that people are confused by. The advice that is more condemnation than support. That you just have to smile through, and nod, while internally you are screaming.
The many private things we do not discuss. The bathroom issues, the sensitivity issues, the Autistic Cycles she gets caught in. All those things that are a challenge to my family, to her, and our choice not to broadcast it. They don’t understand the why’s. Even when you have explained it a thousand times.
Because Autism is a Wicked Little Tailor that fashions a suit for each individual, those of us who are A-Neural Typical can easily get lost by autistic behavior. Is the kid rude? Is she dumb? Wow she’s smart! Is she top of her class? Why is her hair messy? It’s 3 pm, why is she in pajama’s?
The questions, looks, attitudes abound. You as a parent navigate these perilous conversations and hope the adult will not be an ass to your kid. It doesn’t always turn out that way.
Sometimes the world surprises you. I was surprised at the Mall of America, at the Sea Life exhibit. If you have the chance, this is a wonderful place to visit. You can see an array of marine life, and even touch some.
One part of this exhibit is an acrylic tunnel you walk through. It takes you though 300 feet of the exhibit showcasing the aquatic life native to Minnesota, the Amazon, Rainbow reef and mythical Atlantis. You literally walk under the water and see the wildlife swimming around and over you. My son loved it, was beyond thrilled to go through the tunnel.
My daughter on the other hand, stopped dead at the entrance. I tried to coax her to go in just a little bit, but she was not having it. I did my best to alleviate her fears, but still she would not go. I let her mother and brother walk on as I tried to decide what to do.
Then the wonderful happened. A Sea Life worker noticed my dilemma. She came up to us and asked if we needed help. I told her that my daughter was High Functioning Autistic and seemed to have an issue with the tunnel.
The day before I couldn’t get her off the roller coasters, so I was a bit shock at her balking at the tunnel. Plus she is an animal lover extraordinaire, why this bothered her? She still hasn’t told me why. But it did, and the Sea Life worker noticed, and knew what to do.
Opening a side door, the worker walked us a short distance to another door and we bypassed the tunnel. I got the impression the worker had done this before, and that she had done this before for Autistics.
I was incredibly thankful to the worker. To the whole of Mall of America, which is sensory / anxiety friendly place.
It was a moment like that one, that gave me hope that others do understand. That they do get what Austin’s mother said, and now I do too. That with awareness comes compassion, with awareness comes understanding, and ultimately, with awareness comes knowledge that we are all individuals, we are all human beings deserving of respect.
This is National Autistic Awareness Month.
And my Daughter is Alexis, she’s Autistic, not Broken.