Asperger’s Syndrome is often referred to as high functioning autism. The first time I heard the term Avery, my son, was in third grade. His teacher was gently trying to explain why she believed he needed to be tested. At the time, he was nine, and after several appointments, it was determined that he did not have AS. It would take us seven painful years to find the right doctors and correct diagnosis. Weeks before Avery turned 17, we traveled to Deerfield, IL, where we met with a team of neuro-psychology specialists. After sharing our extensive history and two days of testing, the results were in; he indeed had Asperger’s. My world was rocked. On one hand, I was relieved to have the answers I had been seeking for years. On the other hand, the guilt was overwhelming. How could I have lived with this young man his whole life, watched him struggle, even suffer, and not have insisted that doctors listen to me?
People who suffer from AS often have difficulty making friends; they engage in one-sided, long-winded conversations, have unusual nonverbal communication, such as lack of eye contact and few facial expressions, have a hard time “reading” other people or may have difficulty understanding humor. They frequently speak in a voice that is monotone, rigid, jerky or unusually fast, are often extremely literal and have difficulty understanding the nuances of language, despite having a good vocabulary. This list describes Avery to a T and what I realized when he was 16 years old was that we had missed years of valuable time that could have helped him learn critical coping skills. Instead, when faced with a situation that produces anxiety, his immediate response is to escape. In middle school that meant getting lost in a good book, but by high school, it often meant getting lost in his smart phone. Avery’s daily life was once explained to me like this, “Avery’s mere survival of daily life requires constant work that feels like lifting heavy weights straight over your head and keeping them up all day long”. Who can do that? I know I couldn’t. I’ve had to learn to lead with compassion and be more lenient by building needed mental and emotional breaks into his day.
My biggest regret would be all the lost years, but my biggest joy is watching him continue to grow. He works very hard at navigating life. You might see him around town either working his part-time job at Musser Public Library, taking MCC classes or selling dog treats at our farmers’ market. I hope when you see him you say hello, but understand that he might not be so quick to respond. He might not smile back at you though; we’re still working on that one.