When You Hear Autism for the First Time

Cooper 26

Did you fear the word autism the first time you heard it in relation to your child?

This morning, I was asked why I feared the word autism in the beginning.

The question came from an autistic gentleman in a completely non-judgmental way.

I’m thankful he asked. It’s one of those questions that pushes me out of my comfort zone. One that prompts me to look inside myself. Look back. Be honest. And learn.

When I heard the word autism for the first time in relation to Cooper, I was young. A first time mom.

knew my son wasn’t like other toddlers his age. There was no denying it. I could see it with my own eyes.

He was three years old and had no words. None. He didn’t babble. He had no speech like sounds.

Instead he screamed. He didn’t play with toys. He only ate five foods. He hated being outside. Or going anywhere. He didn’t sleep. At all.

He didn’t seem to listen. Or understand what we were saying. Multiple daycare kicked him out. His only joy that I could see was watching Thomas the Train and Barney. He couldn’t do any testing. Refused to participate in therapy.

Those were the facts. The things I could see and touch.

The things I could feel were different.

The love for my son.
The belief that he would be okay.
The hope that he would catch up.
The dreams I had for him.

So I googled. I googled:

No words at age three.
Toddler doesn’t sleep.
Repetitive behaviors.

And every time the answer was autism. No matter what I entered in, the same answer came out.

Autism always found us.

On the surface it was definitions and signs and statistics.

But if I clicked in, the facts got scarier.

Dark, grainy, videos on YouTube of meltdowns.
Stories of kids kicked out of schools.
Terrifying accounts of aggressive behaviors.
Puberty. No self care. Group homes.

Remember, 10 years ago was a long time ago in the world of the internet, social media, and autism awareness.

There was no good. No happy.

Nothing about the beauty that lives in these children. How they hear and see and feel so deeply, and stretch out their hands to lead us off the path most traveled. Into a new world.

I didn’t hear one positive thing about autism, or Cooper, until he was almost five years old.

Instead it was all the things he would never do. Never be. Never. Never. Never.

So yes, I was terrified. So terrified that sometimes I couldn’t sleep or think or function.

I felt forced into a dark place. And that scared me the most.

And that is the exact reason why I share. To help shift the narrative.

If parents of newly diagnosed children are only told the bad, sad, hard about autism then of course they will be terrified.

They will come out fighting, ready for war, walls built so high that no one can get in. At least I did.

Me and my son against the world.

And that was wrong. But I hope you can see why.

Share the good. Share the amazing. Share the precious.

Parents, when you hear autism for the first time, and the weight of the word has you unable to stand..

Look to the kids like Cooper. And Keeping up with Kya, and Autism adventures with Alyssa, Adventures With Big E, and Alex the Artist.

These kids are thriving. They are living wonderful lives.

You will get there. You both will.

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.


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.

Share this post:

Here you can add a bit of text inviting readers to subscribe!