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Why I Used To Cringe at the Word 'Autistic' and Why I Don't Anymore

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I used to cringe at the word “autistic.”

I hated that word.

I had a blog draft started called, “Why I Cringe at the Word ‘Autistic.’” I asked my family to stop saying it by politely and lovingly telling them it was putting a label on my son. It was defining him, and he’s so much more than just an autistic kid.

My feelings on the word “autistic” are hard to articulate. The word sounds so severe to me. It boiled down to this, though: Autism is not something my son is. Autism something my son has.

Of course, it’s just one little word and it’s not meant in a negative way. But when something is so close to you, such a big part of your life, impacts your child —  the child who you’re incredibly protective of — a simple word can stir up emotions.

Here’s where this changed for me.

I was reading a blog post about using word “retarded” to refer to a mistake or something you don’t like. The comments below the post steered in different directions. “Is autistic” vs. “has autism popped up. Someone who actually has autism offered her opinion, which completely peaked my interest. Who better to listen to about autism awareness than someone who actually has autism. Here’s what she said:

“I am autistic though. Not a person ‘with’ autism. Autism is not a personality quirk that I carry around with me, it’s a part of who I am.” 

Now, imagine if someone without autism said this:

“People are autistic though. They’re not people ‘with’ autism. Autism is not a personality quirk that they carry around with them, it’s a part of who they are.”

These statements make different impacts. Hearing someone who actually has autism say it made all the difference for me. I have my own struggles, but the bigger picture is about my son. One day, when he’s able to put his thoughts into words, I’ve got to ensure that I truly listen to what he has to say and not get caught up in my own emotions and ideas about what he wants. After reading her comment and reflecting on it, I’ve come to the seemingly obviously realization that I will forever ask for my child’s opinion.

I’ve said before that I can’t imagine my son without autism, yet I was so hung up on the word “autistic.” That’s not what I’m truly hung up on though. I’m scared. I’m afraid Brandon’s peers won’t understand him. I’m afraid when his teachers talk about him they’ll say, “You know, Brandon… the autistic one.” The thing that keeps me up at night is that Brandon’s feelings will be hurt because some adult lacks compassion and understanding or an innocent child just doesn’t understand.

After reading this woman’s comment, I’ve changed my perspective. Being open and willing to change one’s thoughts when warranted is so important in this special needs world. Brandon is autistic. As I’ve said before, that doesn’t define him, but it is a part of who he is. I’ve known this all along.

This post originally appeared on Ramblings of a Special Mom.

Originally published: January 22, 2015
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