“There Was None Of This Autism Stuff Back When I Was In School”

Kate and coop

‘There was none of this autism stuff back when I was in school.’

I hear some version of that statement often.

It typically comes from someone older than me, and most often, not from a cruel place. More of a place of curiosity.

I do my best to educate. I explained to them that not that long ago, kids like my son were kept in different parts of the school. And before that, placed in institutions.

It’s true. Most people don’t want to believe it though. I’ve educated myself on it. Because, well, it’s the history of my son. And I want to make sure it never happens again.

I’m 39 and when I was in High School, kids with disabilities were kept behind closed doors. Yes, sometimes they’d be seen walking in the hallways or sitting in special seating at the school assembly. But that was about it.

I’m sharing this for a very important reason.

My son Cooper is 12 years old. He is a sixth grader. Here in Minnesota that makes him a middle schooler.

He has blond hair, hazel eyes, and his skin looks like porcelain. His checks are often red, like he’s been playing in the cold. And he smells like the wind. He always has.

He has a diagnosis of severe nonverbal autism with a language impairment. There are other ones too. It’s a lot when I read them all on paper. Stacked up. One after another. And I sometimes wonder how one little boy can have so many labels.

We call him Cooper. Or Snoopy. Snoopy Joe. Snoop-a-Loop. Brother.

He loves Lucky Charms, trains, Loud House, and old time train documentaries. And super soft blankets.

And when I leave the house he waits for me in the picture window overlooking the driveway.

I am telling you all of this because he is a boy first. A boy named Cooper.

He recently switched schools. His new one has been wonderful. He swims. And bakes cakes. He even had a birthday party and kids from his class came.

At his last school, during a meeting with his team of ten people, I listened as they spoke about the struggles he was having.

His dad and I commented that we didn’t know the boy they were describing. We were confused. Worried. Baffled. Scared. They spoke of bad behaviors. Dozens a day. They described him in numbers and data on a spreadsheet. Until, well, there was hardly any Cooper left.

As I listened, my mama brain and heart began sleuthing something out.

He wasn’t leaving his classroom all day.

Not to go to the lunchroom. Or to gym class. Or to go outside. Or for art or music or to even walk in the halls.

As the realization washed over me, it dawned on me that my sunshine boy, the one with three loud and wild siblings who fill his life with chaos and love and playdates and sports, who is used to being surrounded by other children, and doing fun things, and being included, was being hidden away.

When I asked why the response floored me. And I will tell you, it’s been four weeks and my husband and I still talk about it.

‘The floors and walls are hard here. We wouldn’t want him to get hurt.’ That was the response from the person in charge.

Very few statements in my life have shocked me like that one. The floors and walls are hard.

When I asked how often his peers were leaving their classrooms…I was told…

Every hour.

The typical kids. The ones who get to walk freely around.

They didn’t want Cooper in their school. Not in the cafeteria or in the hallways or in the gym.

They wanted him hidden away.

I’m sharing this because he couldn’t tell me. Not them and not now. And no one else was going to share it with me until I figured it out.

I’m angry. But I’m also energized and motivated. Because these kids deserve better.

A few days ago I received a text from a friend who has a son in the same school as Cooper.

‘Derek came home today and said he high fived Cooper in the lunchroom today! Just wanted to tell you how happy Cooper was when he saw Derek. I know as moms we just want to know that.’



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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