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July 14, 2022

The Secret Life of Autism: Why I’m Tired of Living in Shame & Loneliness.

I remember it like it was yesterday.

It will be 30 years this month that I experienced rejection for the first time in my life. I was beginning my grade nine school year. After a summer being away from home, I was nervous to come back to school for some reason. I tried to comfort myself by saying, “Wendy, don’t be silly, you have been best friends with these girls for four years, everything is going to be fine. You are in the popular group. Everything will be great.”

But my soul must have known something my brain was trying to deny. Four weeks into the school year, a week after my 15th birthday, my “best friends” told me they didn’t want me to be in their group anymore. For whatever reason, they had decided I was not good enough to hang out with them.

It was the first time my heart was broken.

I can still taste the rejection.

I felt like someone had punched me in the stomach and the pain would not go away.

I was so ashamed I told no one—not even my parents. Obviously, there was something incredibly wrong with “me” to be outcast like that.

I had no words.

The school year went on, and I hid in the bathroom at breaks, only coming out when I absolutely needed to. When I came out, I would put a smile on my face and act like everything was okay. But everything was far from okay. The life-giving connection of friends that we all crave and need was broken. My heart felt sick.

Fast forward 20 years to when I gave birth to my beautiful baby girl. Her bright blue eyes lit up my soul. How happy I was to be her mama. Everyone loved her when she was a baby. Everyone embraced her. But when she was around one year and a half and it was noticeable she was “different,” I noticed the world started to change again.

There weren’t as many smiles when they saw her. They were nervous with awkward looks and sometimes asked insensitive questions. Just like when I was in high school, I went from feeling the confidence of being in the popular group to becoming an outcast once again.

We would try to go to playgroups…it never worked.

I would try to enroll her in classes…she wasn’t accepted.

I would take her to a restaurant in an attempt to be normal…we were given evil looks when she would help herself to someone’s french fries off their plate because in her world everything is everyone’s.

I pushed through the rejection for a long time. But then I couldn’t take it anymore. I started retreating, just like I did from the hallways of high school into the bathroom at recess and lunch. I stayed away from any situation where I might feel the pangs of rejection.

It was just too much.

Loneliness seemed to be a better fit than the pain of being rejected once again.

Only this time it wasn’t just me. It was me and my daughter.

It’s been several years of living life in this way, staying away from anything that might cause me pain. But there is a cost to living that way. The cost is connection. I don’t want to live that way anymore. We all need our folks. We are wired for love, hope, and community.

Dr. Caroline Leaf, who is an enlightened neuroscience, says that “our brains are wired for love. It works as a perfect orchestra in an atmosphere of love and connection.” There are so many autism parents living as though they have been “mean girled” by this world.

Because we have been. We live with shame every day as we see the world reject our child and indirectly…reject us.

And it needs to stop.

The shame needs to stop. There is so much shame that can come with being a parent of a child with autism. Shame that we did something wrong to “cause” this.

Was it the epidural?

Did I not eat enough prenatal vitamins.

Was it because they watched too much TV?

Was it the vaccines?

Not enough omega 3s?

Or the shame from the world we receive on a daily basis when we attempt to go out into the world?

“We can’t accommodate your child.”

“Why can’t they talk?”

“What’s ‘wrong’ with them?”

We need to stop hiding in the bathroom. We need to fight for connection because it’s life-giving to our children and to us, and loneliness has many detrimental effects. Dr. Douglas Nemechek reported that “loneliness has the same impact on mortality as smoking 15 cigarettes a day, making it even more dangerous than obesity.”

We need to fight to find our folks. It’s hard. Trust me, I know. But we are wired for connection, and we and our children deserve connection. I’m so tired of living in shame and loneliness. We must create the way for ourselves and our families, and the many families that are living the same life as us. Can we rise today? Let go of our shame? Embrace the path we are on with joy and gratitude? I think if we rise together, we can.

It’s time to stop being “mean girled” by this world that doesn’t think children with autism are worthy of being a vital part of it. They are worthy! We are worthy! We all deserve to be accepted.

Your child is beautiful and so is mine.

Let’s all take a deep breath and let the shame fall off our shoulders.

We’re in this together.

~

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