How to talk about autism

I was confronted very early with the realization that talking about my son's having an autism diagnosis would be unthinkable. 

At our appointment where Keller was diagnosed by our pediatric neurologist, as my ears were still ringing from the news I couldn’t even comprehend, and as I was still wiping desperate tears from my eyes, I asked the doctor a question I will never forget.

"If I am in the grocery store and Keller is having a meltdown right there in my shopping cart, what am I supposed to do?" I asked animatedly. "Tell them he has autism!"

"Yes," she said calmly and firmly. "You need to simply tell them he has autism."

I huffed and growled as a thousand things came to my mind, not brave enough to say any of them out loud.

Some of my less charming thoughts included, "What will that person think of us?" "What if it’s someone I don’t even know!?" "What if it’s someone I DO KNOW?" "What if I can tell they are judging me?" "What if I have to explain autism to them?" "What if they are uncomfortable?"

I spiraled into it real quick.

I couldn’t believe she said that to me. Just tell them. I just TOLD THEM?Was she kidding? There was no way I could do that!

But that wise advice stirred in me for weeks and months and became something that I learned to accept and even lean into.

What I slowly learned was that the meltdowns were definitely going to happen.  The embarrassing moments were definitely going to happen. The judging and strange looks were definitely going to happen. The uncomfortable episodes and stares were definitely going to happen. It was all going to happen. I had to just learn how I wanted to respond to it.

So one day, I decided I would just start talking about it. I told my friends at the gym. I told the lady at the grocery store. I said it in the sermon I gave in front of my congregation. I started to write blogs and share them on social media. I talked about it so much I didn’t know if I would stop.

I realized somewhere in there that I needed to talk about it. The world needed to hear about it. Not to feel sorry for me or to pity us, but because so many other families were facing challenges and unknowns and they needed compassion. They needed people to come near and not shy away. They needed people to love and not judge. That is what I kept finding the more and more I shared. I found openness, empathy, and kindness. 

I shared it because I was told to. I shared our personal story and how it affected me. I shared because I had to. I shared because the world needed me to.