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Please See My Son Beyond an Autism Label

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“The one thing I wish I could explain to people is he’s not what they think he is. Words he’s been branded with could never describe him. Words he’s been labeled with can never describe him. He’s not special… he’s extraordinary. To me.” Puddle Jumping — Amber I. Johnson

I read a lot of books; mostly fiction and a few self-help books. Sometimes, I find books with autism and family themes woven into the plot and I get excited to read them because I want to see how autism will be portrayed in each book. A while ago, I came across a novella called, “Puddle Jumping.” It’s about a boy with asperger’s and a girl, their friendship and falling in love. I’d never come across that before — I was curious. It was actually a pretty good book. Short and sweet, with words like those quoted above that touched my heart in a very real and deep way.

My son was diagnosed as having “an autism spectrum disorder” (ASD) when he was 3 years old. We were told his symptoms were “severe.” I was numb… all I wanted to know at the time was where he fell on the spectrum and how verbal he would be.

Several months after getting my son’s initial autism diagnosis, a developmental assessment was done and we were advised of significant delays in relation to aspects of his development. I remember being emotional and having to daily talk myself out of the emotional state I was in. I’d tell myself, this is not where his story ends, my son is so much more than this diagnosis.

I was experiencing grief — mourning the loss of the dreams I had for my child. A purely selfish grief, because I had all these dreams for my boy, and at the time, I felt in my heart that his diagnosis buried all of those dreams. Thank God I didn’t stay in that state for too long. Thankfully, I clued in to my son’s talents and to what he was dreaming about! Not my dreams, his dreams: music and drumming!

After I realized that it’s really not about me or my dreams, but about him and his dreams and what makes him flourish and shine, I quickly let go of those initial questions. All of that stuff does not matter to me anymore. All that matters is that he is happy, being exposed to what makes him happy, honing his drumming skills, doing what he does best.

So yes my son has ASD. If you say hi to him and he doesn’t respond, he’s not being rude, he heard you, he’s just processing — it’s an ASD trait.

If you see him drumming on something or on his tummy, singing songs over and over again, dancing or saying lines from his favorite TV show, he’s just “stimming” — another ASD trait.

Accept him for who he is, but know that who he is is so much more than autism and its traits.

Look beyond the label, scratch the surface and see him beyond that autism label. Take the time to really get to know him and you’ll find that he’s a person just like you and I. He has an amazing memory and is a talented drummer, whose love for music is limitless.

If we could all just look beyond the labels and see the person instead, life would be so much better. Right?

A version of this post first appeared on Diary of a Drummer Boy’s Mom.

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Originally published: March 29, 2023
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