Autism is Not a Dirty Word

54727947_266715707538539_2577847428417847296_n1 (1)

Every morning I wake up to messages from people on social media. Most are well-meaning. Many are kind. A few are awful. Some are bizarre. And some, tell me how to raise my son. And how I’m doing it wrong.

They tell me what I should be doing, how I can do it better, and what I can and cannot say about him.

I’ve gathered a list of what I cannot say. I cannot say he has autism. Or is autistic. I can’t say he is nonverbal or nonspeaking. I can’t say he is severe or severely affected. I can’t say he is level three, even though the MN Department of Health classifies him as so. I can’t say disabled or special needs.

When I think back to the night he was born, after what felt like days of labor, and I finally held him in my arms, never did I think describing my son would be so complicated.

Maybe it’s just best to not say anything about autism. Hide him away. Pretend. As if the intention is to erase the word autism. Because that scolding that is dished out to well meaning parents is exhausting.

His dad and I are not embarrassed. We are not ashamed. Autism is not a dirty word. It is not negative. It is not sad. And we don’t whisper it. We say it proudly and with courage.

We are raising him to be proud of who he is. His siblings too. They will be fierce advocates, standing up for people who see the world differently until one day, the fighting stops. And autism is no longer taboo.

I don’t want to fight anymore because it doesn’t get us anywhere. So here goes…

This is Cooper. He is 13 years old and he loves trains and his family. When he is happy, he hums and flaps his arms. When he is anxious, he covers his ears.

When he wants to play, he tickles people’s feet. He can communicate in a dozen different ways and he smells like the wind.

He was also born with autism, a lifelong condition that is woven through him like the thread that holds a quilt together. It is strong. Some people hide their thread. But his is visible all the time. It is bright red and dark blue. And strong. Unbreakable.

Kate and Cooper

He makes the world a better place by being here. And anyone who knows him is lucky. He is exactly who he is supposed to be and as his family we couldn’t be prouder of the person he is.

We will not hide him. We will not silence him. We will not package him up in fancy paper with a pretty red bow to make folks feel comfortable. He is not a sad story or a punchline in a joke. He is exactly who he is supposed to be.

Keep being you kid. You have an army behind you.

This is my favorite photo of him. It’s a few years old. Today he stands as tall as me and his shoes are bigger than mine. And we walk side by side, arm in arm. I used to lead him. And now he leads me.
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.
Avatar photo

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: