Autism Awareness is Your Responsibility, Not Mine

My son, Eli, said his first full sentence before he was two years old. “That’s a dog!” He said it all the time regardless of if there was actually a dog in sight. It was on repeat in the car, at the grocery store, and at home.

My family laughed. We thought he was so cute. His voice was soft and sweet when he said his favorite sentence and the only other time we heard it was when he was reading.

Before we could make out Eli’s speech he was very interested in books. He’d sit for hours with his books spread around him. He would turn the pages one at a time and stare intently at the words and make sounds.

As his speech matured, I realized he was actually reading the words. He could read almost any book in front of him independently, but he still struggled to ask for things he wanted. I was concerned about Eli’s hearing.

At a doctor’s visit, I expressed my concerns with Eli’s pediatrician. The doctor agreed that his speech was an issue and agreed to refer him for ear tubes if he continued to have chronic ear infections. Two months later he was scheduled to have ear tubes put in.

Eli was two years old. The plan was to pay close attention to the progression of his speech over the next six months. Things did not improve. Eli could repeat words when prompted, but could not generate sentences on his own.

Everyone told me not to panic. “He’s young.” “Give him time.” “Boys develop slowly.” My mommy senses were going off and I paid close attention to them.

We were referred to a neuropsychologist who watched Eli play in her office for 30 minutes. “I see his signs of autism. I would like to refer him for speech therapy to see if a speech delay is the issue,” she told me and his father.

Less than a year passed before he was given an autism diagnosis.

When we got the diagnosis, I was not shocked. I didn’t know that much about children with autism, but I knew something was different about Eli. I was relieved to know what that difference was.

But the news was difficult to process. The first feeling I felt was worry. I just didn’t know what this meant for Eli and his future.

No parent plans to have a child with a disability.

I named him Eli Jett. I planned to scream “Go Jett!!!” at his soccer games. I planned his first day of kindergarten and his high school graduation. I planned driving him to college and crying outside of his dorm. I planned his wedding day and being a grandma.

The plans had changed. I wasn’t sure exactly how, but I definitely knew that I had to let go of my personal plans for his life.

Processing that your child has autism is one thing. Explaining it to your family and friends is another.

“Why did you let them label him?”

“Do you think it was the vaccinations?”

“Nothing is wrong with him! He’ll grow out of it.”

People meant well but knowing that did not make it easier. I spent a lot of time justifying my decision to get him evaluated. It was exhausting.

The next few years were different than before. I quit my job and devoted my time to getting to know Eli. I read a lot of books and articles, but it was most important for me to learn about him from him.

We spent a lot of time away from family and friends. During that time we missed many birthday parties and celebrations. It was hard to take him places where people didn’t understand. Staying home was the only way to avoid the stares and judgments of Eli’s meltdowns.

The most overwhelming part of mothering him during that time was apologizing and explaining his autism away. But I noticed he was unapologetic and unbothered. He had his own swag and a personality that could light up a room. One day I decided that I was not going to apologize for who he was anymore.

I could not be responsible for explaining why he didn’t want to talk to every stranger in the grocery store. Or to justify his behavior to other parents at the park.

I never thought anything was wrong with him, but I felt like explaining that he was different to other people contradicted that. Nothing is wrong with him. What’s wrong are other people’s assumptions and expectations of him.

To me, his label of autism is no different from him being black or a boy. The only difference is that you can’t see it.

As a parent of a child with autism, I have to teach Eli a lot of things. He has 6 hours of ABA therapy a day just to be able to socialize appropriately with his peers. We are constantly working on improving. Some days he doesn’t want to talk because he’s so overwhelmed by all of these tasks.

He does a lot of work to fit into society. I expect him to do it because that is just how life works. But it would be nice to see other people put in some effort to enter into his world sometimes.

If you asked me what someone could do to make the world better for children with autism, my answer would be simple: change their thinking.

Educate yourself. Don’t expect everyone to be the same. Be slow with your judgments. Be compassionate. Be accepting and teach your kids to be the same. Be willing to push yourself outside of your comfort zone to be inclusive of others.

April is Autism Awareness Month. Have you been thinking about how you can enter the world of someone who has autism?

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