Awareness versus Acceptance. Autistic versus Person with Autism. Disability versus Characteristic. Challenge versus Gift. ABA versus Playtime. Nature versus Nurture. Inclusion versus Exclusion. Sameness versus Difference. Blue versus Red.
All perfectly acceptable topics for the month of April…the month designated as Autism Month. But for the last few years the theme for the month has been disagreement, arguing, fighting, disrespect, and hurtfulness. My first “April” was in 2007, a few months after my giggle monster had been diagnosed with Autism Spectrum Disorder. I was almost excited for the month because I knew people would be talking about autism and I’d have the chance to find resources and engage in the conversations that only seemed to be happening in therapist offices and private phone calls at that point in life. The designation of April created a place and space for conversations to happen and they were happening all over the internet. I found facebook groups that led to some of my closest friendships today. I “met” people through their blogs; I’ve sat on the edge of my seat following their highs and lows over the years. I even started my own blog in hopes that something in our journey would be useful or comforting for someone else out there like so many blogs have been for me.
But then something started to happen. I don’t even know what the initial “event” was but people started trying to claim one set of experiences as the Truth. By default this meant anyone else’s experiences were wrong. Struggles began over who could and/or should speak about autism and even over what those conversations should be. Each year that struggle has become increasingly hostile. Moderators have shut down facebook groups because they couldn’t find a way to bring the struggles back to meaningful conversations. Blogs have gone silent because writers don’t want to constantly have to defend their experiences or maybe they worry about the future generations that will read those comments and think hey they are talking (fighting) about me. A community has truly become divided.
I guess I don’t need April. We live the giggle monster’s flavor of autism each and every day. I know the research and when I need answers I can do more research. And honestly I’ve become much more confident in this journey than I was six years ago. I still wake up some nights drenched in sweat over worry about the future but I have a lot of “moments” to cherish that can usually carry me through the rough patches. So I wasn’t sure if I wanted to venture into the Autism “thing” this year. To be completely transparent, I hadn’t even written my April 1st blog post because I just wasn’t sure if I wanted to go there.
Then this morning Caden was sitting at the table working on math. I casually asked him if he knew that April was Autism Awareness month. He pointed out that he had no idea what that even meant; I explained that it was a month that people talk about autism and can learn more about it if they want. Without hesitation he replied cool.
I’ve thought about that all day. And he is right. It is cool. April is a space and place for conversations to occur. I owe it to Caden to throw myself into the month and see if I can offer anything useful for someone somewhere out there. Maybe I will find myself in some negativity and I’ll have to figure out how to respond but at least that’s a choice I have. Caden doesn’t get to choose his struggles but I’ve never heard him complain about them either. So I’m going with I’m going to call it April and Autism—that’s cool Month because my giggle monster says so.
Disclaimer: I feel I should probably add that a few minutes after our conversation Caden did ask if Autism was a present holiday. And honestly maybe there will be along with some cupcakes because April seems like a great place and space to celebrate my blue-eyed giggle monster for all the wonderfulness that he is.