Last week when I picked up my 5-year-old niece from her Pre-K class I passed a wall plastered with pictures and stories. In the center was this sign.
Autism is one word trying to describe millions of stories. and underneath, offer support, not judgement.
This may seem sappy, but the sign, the wall, what had been going on in my life at that moment, hit me hard. I did my best to hold it together and walked on to pick up my niece. Walking through a crowded hallway of parents and overly excited 4 to 5 year olds, who jostling each other for a turn at the drinking fountain. I signed my niece out, lead her out of the school, stopping to snap a picture of the sign. Then I thought about writing this blog. But I didn’t write. I thought about it for nearly a week.
I fully feel the support. From friends, family, school teachers and professionals who help us with Alexis’ Autism. It is a wonderful feeling, and I am truly grateful.
Yet at times, I feel the judgement. For many, Autism is just an unknown. They look at it from the outside and see…well they see a new car. See, I thought about the sign for nearly a week, and found an analogy that made sense.
Lets say, for the sake of analogies, Alexis is a new car. Snazzy, looks great on the outside. Sunroof, all the new fangled bells and whistles. I drive this car everyday. So I know this car well.
On occasion I give people rides. They like my new car, say it works like every other new car they know, looks like a normal car to them too. But they don’t drive it everyday like I do.
See, every once in a while, my navigation system won’t talk to me. It is very frustrating. I really need it to work sometime, but it doesn’t some days. – Selective Mutism.
Then the fuel system doesn’t work, and my car vapor locks on me. Just stops. Getting it to work again can take days. Sometimes, I have to take it into the shop. – Gastrointestinal issues.
The sun roof is stubborn too. It will open, but refuses to close. Hangs up and the navigation system complains it hurts too much to close. – Tactile Issues, Hair.
But everyone sees this awesome car on the outside, and they don’t understand the issues I have with it. I can tell them, and they will listen, but then they look at my new car, and shake their heads at me.
“It’s fine, what are you talking about. Can I have a ride?” They ask.
“Sorry, not today, the fuel system is backed up and the navigation system quit talking to me about it. Sunroof needs an adjustment too.” I tell them.
“You know? You complain about that car too much. It’s fine, you just need to drive it like everyone else who owns a car like that. You probably don’t know how to operate it properly, it looks just fine to me!” I hear. And all I can do is sigh.
Silly as this analogy is, unfortunately it is accurate.
Alexis has issues that come with Autism. Even as high functioning as she is, there are still issues that seem to baffle people.
In her case, Autism is expressed by extreme anxiety. Yet this anxiety is quirky. Things that freak other people out? Like roller coasters? She’s fine with them.
She loves roller coasters.
Yet a word, a phrase, a look can push her anxiety levels to nearly catastrophic levels. She will go mute, she will lash out, she make odd sounds and nervous tics. Then she will become constipated due to her anxiety. Which, a little TMI, becomes a nightmare to deal with. From as little as going through ten pairs of undergarments a day, to doctors visits when it gets severe.
There is also the impression that she needs to learn to behave like other children. Or that this is just a phase she will just grow out of. As if this is a cold she will shake, and I am overreacting.
She will never behave like other children, she will not grow out of it.
She will learn to adjust to our world. Find ways to cope with stresses that plague her now. She will grow, learn, become a productive adult. In her own way. I am so very thankful she will. Other who have autism, are not so lucky.
I don’t doubt her future successes, yet right now she is (and we are) in the adjustment part. Working on routines to keep life on an even keel for her. Because at this point, routines are important for her, and difficult to keep in the busy, fast paced, modern life.
I call Autism The Wicked Little Tailor, because it is. Autism truly is one word to describe Millions of stories. Each person whom it touches, it does so in its own unique way. No two autistics are alike. Each person wears their own little suit of autism, and has to cope with it.
Those of us who are the caregivers, we have to not only help them, but be an advocate for them. Do our best to teach others.
And honestly? It sucks sometimes. Teaching others. They would rather judge than listen.
Because to them, the car is new and shiny, it should work like every other car its age. They are only the occasional rider, they don’t drive it everyday like I do.