It Took Having Another Child To Realize My Son Has Autism

It wasn't until Karen Olson Edwards had her daughter that she understood how much her son was struggling

When my son was born, he didn’t cry.

It was my first pregnancy. I imagined our child magically emerging, screaming. That’s not what happened. It was quiet. Too quiet. He needed help to start breathing, but even when he could breathe on his own, he still didn’t cry. My husband walked toward him and asked the NICU team if he was okay, over and over. “Come over here,” someone said. “He’s turning his head toward your voice.”

I was barely conscious and don’t remember much. When I woke up, I saw him properly for the first time. I could barely move, and his head was misshapen and wounded. We just stared at each other. Not in a fuzzy-edged picturesque way. More like in a “what the heck was all that about” sort of way. He was observant and serious, all seven pounds and raised eyebrows. It wasn’t at all what I expected. The plan had completely changed.

We took him home. For months, he cried. I carried him in a sling all day and slept next to him all night. When I tried to leave or be separated for any length of time, he’d usually scream.

As a toddler, he wouldn’t sit on my lap at library storytime. He was too busy throwing himself on the ground. He hit his head on the floor. He pushed and hit other children and nothing I tried seemed to stop it. I was doing something wrong, right? Other kids could calmly play with cars without throwing them, roaring, making repetitive noises. Other kids would wave back to strangers, not just stare. One friend sent me an email that said, “I feel like I need to be the one to tell you this. He needs to be separated from you more. He needs to become independent. He should be able to go to other people by now.” I closed my laptop and cried.

When our daughter was born, he was almost two years old. She smiled at everyone. She sat happily in a swing. By 18 months, she calmly played with other children. Our son’s sensory seeking and sensory defensiveness increased. He continued to throw himself on the floor, especially when we entered a new place. When we entered a new coffee shop, he announced our arrival with a faceplant. I figured out his behavior with other children was an attempt to say hello or connect. We practiced saying hello, waving to a friend. He was three, and basic things were still very challenging.

I hit the wall. Hard. I knew we needed help. I felt like no one could see me, and no one could see how much he struggled. He passed the short autism screening at the pediatrician. He smiled and laughed and had eye contact with us. He didn’t always line things up. He had a couple of friends. Still, the doctor referred us to an evaluation team. We started filling out forms.

He was in a parent-child class one half day a week. I approached the teacher with a form. She said he struggled to engage with other children, wandered away when someone was talking to him and had inconsistent eye contact. I stared at it, and then I stared at him. I started watching him. It was true. He would start talking, and then start looking somewhere over my head, then coming back just for a second, then back up at the ceiling, a little off to the right. It was often the same pattern, like he was trying to do math in his head, or figure out where a leak was coming from.

After testing, we sat at a table with a psychologist. It was July, and the air conditioning was turned up too high, and the woman kept saying “kiddo.” She said that he was, in fact, autistic. Immediately, I felt such immense relief. I felt like finally, someone believed me when I said he just seemed different from other kids. Someone believed that some things were sometimes harder for him. Someone believed him, too.

I looked at my husband. He was in shock. It was the same look he had when he looked above the blue curtain in the operating room, wondering what was going on with the new baby that had just been pulled out of me. Is he okay?

He’s okay. He’s nine, now. He's immensely creative. He prefers a small group of friends. He is old enough to explain a sensory problem. Currently, it’s about paper napkins and straw wrappers. His vocal and physically self-stimulating behaviors (known as “stims”) come and go depending on what he's feeling.

Working through his everyday life has improved with social stories. “It’s nice to say goodbye to friends instead of just getting up and walking away.” “There is a microphone here today. That’s something we didn’t expect, but it’s okay.” We live in a major city and hear a lot of sirens. He calms himself by saying that sirens are loud so people will know that driving rules, like going through a red light, might change.

Change can cause a lot of anxiety. I find that this one is really hard for people on the outside to understand. It can appear indignant or “bratty.” People don’t understand that it’s not a choice to get locked up just because something isn’t exactly as expected. In addition to plans changing, not knowing what to expect is tricky. Once we were visiting my parents and planned to go out for ice cream. The store was unexpectedly closed. He refused to get in the car seat, and I refused to strong-arm him into it. I had to respect where he was in the moment. I tried to explain that it wasn’t about the ice cream. It was about the change. We would have walked back to my parents’ house if it wasn’t pouring rain.

I could say all the quirky things. All the things that “sound” like he's autistic, like you’d see on TV. The fluctuating eye contact he still has, his green eyes never quite landing with regularity. His early affinity for collecting nutcrackers and lining them up neatly in his closet. His absolutely incredible memory. His reluctance to hug or touch or be touched. But that’s only a small part of who he is.

People can have a flawed vision of autism. There is the stereotype of math genius that can’t talk to people and appears robotic. It’s just not true, and actually really hurtful. Making friends and reading social cues can be difficult sometimes, but certainly not impossible. He is so interesting and loving, and I love watching him thrive in his relationships. I know he’s worked hard. I’m so proud of him.

Sometimes plans change. Sometimes the baby doesn’t cry, and sometimes the baby does. Sometimes you can get ice cream, and sometimes you can’t. I look back to those days just after his birth. We stayed up late at night, staring at each other. That observant little baby is still my boy. Nine years old, sharing trivia, still crashing onto the floor and couch. Sometimes plans change. I’m glad they do.

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