Fifteen Years of Autism Awareness

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I approached this last Autism Awareness Month differently than I have in the past. Somehow, it’s not mine anymore…It’s hers.

Don’t get me wrong, I will continue to fight for my daughter, Lizzie, every day, and I will openly share about our lives to help others understand the dire unmet needs of our community. But, experiencing autism for over fifteen years has allowed my emotions to stabilize and a different perspective to set in.

This is how my Autism Awareness Day has changed over the years:

It has only been months since hearing the words, “Your daughter has autism.” I will fix my child and change the world in my free time! Everybody needs to know about autism and how they can help. I am going to set up a booth at the mall and talk to every person that comes by. Let’s also make t-shirts and raise money through a walk for autism!

I know all the signs and have memorized the data. I will wear autism awareness puzzle pieces from head to toe, and I won’t leave this mall play area until I screen every single kid. If you have a child that flaps, spins or walks on his tip toes, you will receive a pamphlet. Early intervention is key, you know.

Autism what? Awareness Day what? I haven’t slept a full night in over three years! I can’t even remember what year it is much less what day it is?! For us, it’s all the same day every day. 

The judgment. The stares. The nasty things said to me. OH, THAT’S RIGHT….I WILL MAKE YOU AWARE!!! 

Why does this have to be my life forever? Yes, of course I am aware. Stop talking about it already! I wish I wasn’t so aware every minute of every day. It hurts. It really, really hurts. 

This day should actually be about ACCEPTANCE. It’s not about making anyone else aware, it’s about looking at the beautiful daughter I have right in front of me and loving her as she is. 

Let’s use this day to celebrate my daughter’s gifts and the amazing things she can do! I want everyone to see the beauty she brings into the world. She’s smart, funny, and such a hard worker! 

Don’t listen to me today. I’m not the one living it. Her voice matters, so let’s all just slow down and listen to what she has to say… 

Lizzie: “Please be nice to me. All I want is to be included.”

Written by, Julie Hornok

Julie Hornok is an award-winning author, speaker, and advocate for autism. She started the non-profit, United in Autism, to bring hope to special needs moms through emotional support events. Her first book, United in Autism: Finding Strength Inside the Spectrum (foreword by Temple Grandin) is available at UnitedinAutism.com or Amazon. Join her United in Autism Facebook Community for emotional support. UnitedinAutism.com.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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