“Autistic.” Yes, I say it.

My son is autistic. 

I know how that term is hated by some many. I get it. It reverberates through my whole being when I say it.

He is beautiful, comical, energetic and charming. People love him instinctively.  I know I’m supposed to say he is a gregarious kid who loves animals and trains, and thrives outdoors and just happens to be autistic. Like he just happens to have blue eyes, no big deal. I know how I am supposed to talk about autism – as an afterthought, as a minimized part of the larger person.

I know the words matter. Brace yourself.  He’s autistic and I’m an autism mom. With that label comes a whole flood of negative perceptions and discrimination, and I choose to face those head on.

There is nothing minimal about autism, nothing compartmentalized about its impact. Every waking moment is permeated by it. It’s not an afterthought, not something we just happen to have. Autism informs every moment and interaction we have. It forms who he is and reinvented who I am; it matters always.  

To change how we speak about autism to protect our kids from all the stigma associated has an instinctive appeal. I did it for a while, but I’ve come back to just calling it like it is. The label carries weight and people interact with him based solely on that label.  That defines them, not him; it shows their limitations more clearly than his. 

I tiptoed around it for a while, like I did with his stimming. I now choose not to back down from the label, the stigma or how uncomfortable we make others. I choose not to pretend this is okay or hide it.  He doesn’t “just happen to have autism”. It is so much more than that.  It is a celebration and a struggle for us each day, a roller coaster of successes and meltdowns, of expression and silence, of accomplishment and determination and of not yet reached milestones.

LittleOne is shaped by it. We are shaped by it. He doesn’t just happen to be unable to tell me his feelings, his needs, or his desires. Autism blurs his understanding and mutes his articulation. 

Every interaction is dictated by the constraints of autism. Saturday LittleOne told me for the first time in his life that he was hungry. Hungry.  It’s an abstract internal feeling that up until today he could not recognize, interpret and verbalize.  Today he woke up sobbing and unable to tell me why. I held him for half an hour while tears fell and I will never know why.

He’s more than the label, so much more. But we are keeping the label in hopes that one day people will see what really means, and all the reasons to love and welcome our kids across the vastness of autism.

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