Many parents of children diagnosed with Asperger’s syndrome follow a long, twisting path as they try to find out what is going on with their child. Many children with AS are initially diagnosed with everything from ADHD to mood disorders.
When my son Elias was three, my husband and I knew something wasn’t quite right, but we had trouble putting our fingers on it. He was meeting his milestones as expected, but he was always different. Looking at photos from this time period, especially ones taken at his daycare, Elias is always sitting apart from the other children, usually with a worried look on his face, or staring in another direction, not at the person taking the photo.
He was a temperamental and highly emotional child, crying on the drop of a hat and unable to handle any sort of frustration or change in plans. While this wasn’t so troubling when he was three, as he got older, it was clear that emotionally, he was a great deal less mature than his peers. He also had a number of other “quirks,” such as his attachment and interest in all things scientific, as well as habits of constant throat clearing, finger picking, humming, and, occasionally, knocking his head into the wall — especially when he was upset about something.
It became difficult to do any number of activities with Elias in tow. Grocery shopping in particular was challenging. He would get so upset that he would actually vomit. But things really fell to pieces when school started. Practically from the first day of kindergarten, we were getting phone calls from the school detailing his exploits. One particular incident stands out. I had been called to come pick him up because he had upended the students’ tables and pulled apart the teacher’s desk in an out-of-control frenzy. When I arrived to pick him up, he was completely out of control, screaming and fighting me. I had to call my mother to come help until we could get him calmed down enough so that I could drive.
Around this time the pediatrician diagnosed Elias with ADHD. He was prescribed Concerta. The medication worked to calm him down some, but it didn’t change any of his other unusual behaviors. Life went on, and we continued to struggle.
Over the next few years, we saw four different counselors and three different psychologists. Elias was diagnosed with everything from oppositional defiant disorder to an iron deficiency. We attended classes on better parenting techniques, read every book we could get our hands on about discipline and behavioral modification techniques, and tried out a variety of different medication combinations. Nothing seemed to have any effect.
Finally, a counselor recommended a colleague who was a psychiatric ARNP. We took Elias to see her, without much hope in our hearts. We just wanted to know what was wrong and why nothing we tried worked. We truly believed we weren’t bad parents, but we did feel clueless.
After a battery of tests and questionnaires, the ARNP finally emerged with a diagnosis we hadn’t heard before: Asperger’s syndrome. I had vaguely heard about it… but wasn’t that a type of autism? My kid wasn’t autistic — he spoke just fine, didn’t butt things with his head (usually), and was generally pretty tuned in. This couldn’t be right.
I went home and read everything I could find about Asperger’s. As I read, I constantly found myself nodding as I recognized each one of the signs and symptoms. All those odd behaviors I had thought of as “Elias quirks” — they were all symptoms of autism. The repetitive noises. The humming. The play that repeated the same theme over and over. The meltdowns. The rigidity. The shutdowns. His obsessions that he would constantly pester us about. It was all there.
At first I was furious that so many of these so-called experts had never spotted this before. But on the other hand, they didn’t see what we saw every day. I’ve heard it said before by others on the spectrum: “I’m high-functioning… except when I’m not.” This statement fits my son to a T. When he’s engaged and interested, he seems like a regular kid. When he’s shutting down and trying to squeeze himself into a cupboard because he needs the pressure to feel safe, not so much.
We still don’t have all the answers. There’s a very good reason why autism is often represented by a puzzle piece. But we have at least some of the pieces in place, and we’re gaining more every day. We have a counselor who has been working with kids on the spectrum for 20 years, and Elias is a patient at a phenomenal nationally recognized autism clinic. We have hope, and some days, that’s all that matters.
Photo by Lance Neilson