What I Want More Than Awareness for My Autistic Sons
Do you know that World Autism Awareness Day is on April 2? On that day, you’ll be asked to “Light It Up Blue” or “Color the World” to help raise awareness for autism.
How important is World Autism Awareness Day to me?
I booked my boys’ birthday party on that day. I looked at my calendar and there wasn’t a rainbow of appointments staring back at me on that day so it meant it was open. Then my girlfriend texted, “Oh, you’re so awesome having their party on that day. I bet you’re going to do something big.”
I sat there for a second and had to really think about what is so special about that day. I actually had to ask! See, the thing is I didn’t book my boys’ birthday party on April 2 because I knew it was World Autism Awareness Day.
We raise awareness every day no matter where we go — sometimes loudly! I talk about autism, write about autism, research autism. Hell, my van is covered in stickers to raise awareness and keep my boys safe for first responders just in case.
What I’m really looking for is acceptance and understanding. I want people to understand my boys.
When my son, Beast, was at the hospital, a doctor called autism a behavior disorder. And she said it as she was walking out the door. I was so shocked that I didn’t have a chance to correct her or ask her why she said that.
Then I thought about it — people can be aware of autism, but they may not understand autism. I feel like every medical professional who I’ve been talking to about Beast looks at the nonverbal piece and doesn’t listen to everything I have to say about my son. Because they don’t listen to a verbal account of what’s going on with him and don’t understand all of the nonverbal language, he’s being dismissed.
It’s the flip side of that coin for my other son, Bubba. That kid can talk! He will talk your ears off. That’s how he processes, controls or regulates a situation. I’ve heard it a million times that he’s smart and quirky. Not a big deal. Social communication is where he faces challenges. He’ll agree to anything and say anything if he thinks he’s in trouble. He has a hard time with executive functioning. He needs clear step-by step-instructions. He was getting punished and made an example of in school, and his self-esteem suffered because the school didn’t understand him.
I want people to understand and accept my autistic boys.
My boys are snowflakes that are beautiful and complex.
Autism is an explanation and not an excuse.
I want people to look closer, see, listen and observe.
I need people to learn that my kids do certain things that may seem different, but it’s how they communicate, relate to you, express an interest, get your attention or get your love.
April 2 might be World Autism Awareness Day, but every day is autism acceptance day.
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