When Everyone Stares: Life with Autism


‘It feels like everyone is staring at us mom.’

That’s what my 10-year-old son said to me a few days ago.

First, I’ll tell you he wasn’t wrong. Everyone was staring at us.

A member of our family has a disability and while it’s not physical, meaning, you don’t ‘see’ it…. everyone sees it.

Our oldest is 12 years old. On the paper in my desk drawer, it says his diagnosis is severe, level 3, nonverbal autism. It says a lot of other things too. His most recent evaluation was 24 pages long.

I tried to read the whole thing. I’ll tell you, I couldn’t. It hurt my heart. And it made me sad and a bit angry. So, I read, and I skimmed. I took breaks and I came back to it and I looked for the important words. And then after a good cry I put it away in my drawer.

His name is Cooper, and he loves trains and the month of December and treasure collecting and parties.

I often feel like those reports strip away the boy, the person, and leave the hard parts. I say his name all the time. So often, it may be noticeable. But I want the people around the table to remember the boy first.

‘It feels like everyone is staring at us mom.’

‘They are staring Sawyer. But we have to remember that most people are kind and curious. They don’t know autism or Cooper.’

‘And, truthfully buddy, sometimes people are afraid of things and people that are different.’

I watched him process what I had said about his older brother, and our family, and our life.

He looked small for a second. Messy hair. A chocolate stain on his t-shirt.

He’s never known a life without autism. A brother born into advocacy.

He’s never hid, not once, even during his older brother’s hardest moments. It’s unbelievable really.

‘They could just say hi, mom. I wish they knew that. We are just people.’

This kid amazes me. Every single day.

I think one of my greatest gifts is watching my children grow up into adults.

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.

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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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