When My Son Received an Autism Spectrum Diagnosis

My wife, Teri, and I took our son, Leo, for his 2-year-old wellness check with his pediatrician. Our normally bubbly and cheerful nurse practitioner did not seem to be in her normal spirits and bluntly delivered her thoughts, “You need to get Leo to the University of Iowa. I think he has autism.”

Shocked, Teri and I looked at each other. Sure, we knew he was had a speech delay, but up until now, everyone — including the pediatrician — reassured us it was “normal” and OK, and we just had to be patient with him. His other health care providers, his speech therapists, his preschool director and our friends all agreed he was simply speech delayed but certainly not autistic. Now, suddenly, that reassurance was pulled from underneath us.

We were both indignant. My wife responded, “Wait. You told us six months ago that he didn’t have autism, and he was just speech delayed. You said we shouldn’t worry about it. What has changed?”

The nurse practitioner, rather gruffly, explained the noises Leo was making — and often made, especially when he was uncomfortable or anxious — could be a sign of autism. She said his lack of speech so far and his general avoidance of eye contact could be indicators something more was going on. She told us she would refer Leo to Iowa City to assess him for autism and then left the room.

We looked at each other, looked at Leo, and looked back at each other. I remember rolling my eyes, saying something like, “Well, she was clearly having a bad day and decided to take it out on us. We can go to the University of Iowa for the diagnosis so she can feel better in knowing he doesn’t have it.” Teri agreed, and we bundled up Leo and went home.

Leo is our first and likely only child. We went through so much to get him to be a part of our life, which is another story entirely. But since he’s the only child we’ve ever raised, it’s hard to see his behavior as anything but “normal.” It was all we knew. We’d know if something was off about him… right? Wouldn’t we have that parental sixth sense? And he was nothing like the images of autistic individuals I had in my head (similar to the movie, Rain Man). Leo had a contagious laugh and an incredible smile. He was affectionate and loved to hug and kiss. So he couldn’t be autistic. No, he couldn’t be. But the pediatrician’s visit planted the seed that maybe, just maybe, he was different.

About a month later, I took Leo to the Iowa Public Broadcasting System Imagination Station, an event where kids can meet and get their picture taken with the public television cartoon stars, such as Daniel the Tiger, Curious George, Wyatt of “Super Why” and more. I brought a friend and Leo’s godmother, Kelly, along to help wrangle Leo. Kelly does lots of volunteering, including for agencies focused on helping children with various disabilities.

Early on in the event, I started watching Leo’s behavior in comparison to the other kids his age. I watched the other kids reveling in the arts and crafts, and their looks of awe in meeting their cartoon heroes.

When I looked at Leo, he was most fascinated with the chairs. Yes, the chairs. The chairs in the hallway, the outdoor chairs between the buildings, the chairs in the lounge area, and the chairs in the room with Wyatt of “Super Why,” his favorite public television show. He’d get in them. Play with the arms. Wiggle around. Get out of the chair. Repeat.

It was in this moment that the diagnosis started to become real. I looked at Kelly with tears in my eyes and remember distinctly saying, “Leo isn’t like the other kids, is he? He’s different.” And after a breath, I went on to say, “He’s autistic, isn’t he?” She smiled kindly, gave me a hug, and said, “I think he might be. But it’s OK. He’s a great kid!” After a few tears and a couple more hugs, I composed myself and we finished out the event — which involved quite a few more chairs.

Another month later, and we were at the University of Iowa for his autism diagnosis evaluation. The team was made up of a speech pathologist, a psychologist, an autism coordinator and others. During one part of the evaluation, I was sitting at a long conference room table with most of the autism team, watching Leo, Teri and a member of the autism team interact via video camera. I saw the way he played with toys — he mostly picked them up and dropped them. He did not use toys in a functional way. He would not respond to simple commands or requests. He didn’t respond to his name or look at the individual who was talking to him. It all became clear to me while watching my sweet little boy on that black and white, static-filled image. I closed my eyes, trying to hold back the tears. A member of the team caught my eye, and I managed a weak smile. She smiled back with knowing, kind eyes.

After several hours of testing and interviews, Leo was diagnosed with autism spectrum disorder. It had happened. The team delivering the news did it in the most compassionate way I could imagine, and for that I will be forever grateful. We finally let the tears flow as we tried to make sense of the news. It’s strange to say it was shocking, but denial is a strong defense mechanism. We were still holding out for a report that all was well, and he was simply speech delayed.

But reality hit, and our denial was shattered. We knew it was important to move forward and help our son thrive. We were given several great and important suggestions for Leo’s interventions from the University of Iowa team. As we headed to the parking lot to begin the autism journey, our eyes had been opened. We had so much to learn and had a wonderful little man who was ready to help teach us.

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Getty image by SanneBerg