The Secret World of Autism

I am often asked to write about autism. Especially in preparation for Autism Awareness Month. Prior to my son’s diagnosis, I never knew this month even existed. That’s how it typically goes I guess. People don’t pay attention until it’s their life. I get it. That was me pre-autism. Now, my whole world is an Autism Awareness Month.

When I am asked to write about autism I struggle with finding the right words. Autism makes up a million different stories of hope, love, adversity, struggles and beauty. How do I put all of that into one 600 word article?

I have a seven-year old with nonverbal, severe autism, and I invite you to take a peek inside our secret world. Autism can be scary, isolating, beautiful, humorous and sad. I, along with many other families, live in this world. Our children are the faces of invisible disabilities. Years ago disabilities were kept quiet. They were hidden. They were removed from the home. They were institutionalized.

Thankfully, that is not the case anymore. It is the year 2018, and parents are stronger and more equipped than ever to care for their disabled children. And accommodations are made to help keep our kids safe and in their own homes as long as possible.

What is Autism?

When I started writing this article I thought about my purpose. Do I want to educate? Yes, of course. I thought about giving you facts. I could say that autism is a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

I could also tell you that in 2014, the CDC released new data on the prevalence of autism in the U.S. The study identified 1 in 42 boys and 1 in 189 girls are on the spectrum. Pretty scary stuff.

Those are facts about autism.

But that isn’t the world that we parents live in. In my home, I don’t think about labels. My kid is not autistic or disabled. He is simply my son. I love him. I don’t think of my kid as being different. Yes, almost everything is more challenging for him. But, he is still my sweet, little, adorable, silly son. It’s as simple as that.

So, telling you the facts really mean nothing. Instead, I’ll tell you the real stuff. I’ll tell you about the emotional sides of autism. The parts that parents go through every single day.

My Secret World

I’ve lied awake countless night worrying about my son and his future. I haven’t slept through the night in six years. I’ve developed an ulcer. I’ve lost weight. I have severe PTSD.

I spend days and nights worrying about my son’s future. I am so scared of dying before my son that there are times I just breakdown. I worry about who will love him and care for him after I’m gone. I worry about what is going to happen to him when I can no longer provide care. I’ve even beat myself up for not having more children to help ease the burden.

I’ve cried enough tears to fill an ocean. I could tell you that I’ve dreamt of my son’s voice. I’ve heard it so vividly in my dreams that when I wake up I actually miss the boy in my dreams.

I stare at my son for hours just wondering what is happening in his head. I would trade anything to climb inside his head just so I could see the world from his view.

Having a child with disabilities has turned me into a nurse, a doctor, an advocate, a fighter, an educator, a therapist and a psychologist. All titles I never wanted.

Our family lives in isolation. Because my son’s autism is so severe we can’t go to stores or zoos or restaurants. If we do go to a public place like a park, we wait for a rainy day so there are less people.

Autism has robbed us of milestones and special moments. I have physically agonized over the moments we’ve missed. The countless conversations, games, and moments.

I’ve grieved for the little boy that I dreamed about when I was pregnant.

I’ve seen my son hit himself. I’ve seen him beat his head ferociously against walls and floors to get his point across. I’ve seen him in pain. I’ve held his screaming body while countless anesthesiologists put him to sleep.

I’ve watched people stare at us. Stare at him. They wonder if I am a bad mom. They wonder what is wrong with him. They wonder if I don’t discipline my seemingly normal looking son.

I’ve been judged. I’ve been shamed. I’ve even been shushed. I’ve cried myself to sleep. I’ve cried on my drive to work. I’ve cried at my desk. And I’ve cried in private.

I’ve lived the past six years in waiting rooms while my son has therapy. His village has hundreds of people in it from social workers to teachers to doctors and I know them all by first name. They have become my friends.

I’ve yelled at doctors, social workers and insurance companies. I have begged, pleaded, and argued for help. I have seen the ugly side of the healthcare system. I could say the system is broken.

Having a child on the spectrum has affected every aspect of my life. It impacted my marriage. My friendships and my career.

And most importantly, I didn’t know what true love really was until I held that little boy in my arms. And then again when I was told he was autistic. I loved him even more. He was still absolutely perfect to me. I vowed to give him the best life ever. This is my secret world. It is a selfless, exhausting and rewarding job.

This is the Face of Autism

I would like to introduce you to the little boy that has completely changed my life. This is Cooper.

Photo Credit: Kacie K. Photography

He is seven years old and loves trains, funny sounds and being tickled. He is smart and loving and silly. But those qualities often get overshadowed by his struggles and by words like autism, disabled and nonverbal. He is so much more than those labels. He is a complete joy. He is perfect.

Being Cooper’s mom has given me a purpose. I know what it’s like to fight for things like milestones and services and equal rights. I take nothing for granted anymore. Autism has made me strong. Autism has given me a voice. Autism has shown me love.

An Invisible Disability

Cooper has his arms and legs. He can see, hear, run and jump. He looks normal. But the reality is he has never made a friend. He has never spoken a word. He has never been invited to a birthday party or a play date. His disability isn’t fatal. He will hopefully live a long life. But he will most likely never move out or live on his own. He won’t drive a car or manage his money. He may never learn to use the toilet. He may never learn how to care for himself. He may never understand safety. This is the reality of severe autism.

Autism is an invisible disability that affects 1 in 68 children. My goal, as a mom to a child with autism, is to help remove stigma around my son’s disability. I want him to be invisible no more. I want people to see more than ‘just’ autism. I want them to see the beautiful parts.

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 and subscribe to our newsletter.

(This piece, written by Kate Swenson, originally appeared on  Twin Cities Moms Blog)