Why Did I Start Questioning Autism?
By: George Wu, MD, is a Medical Director at ActiveHealth Management, where he is devoted to patient advocacy, disease awareness and education.
About four months ago, Michael McWatters came and asked me how much I knew about autism. Growing up in Asia, I knew neighborhood kids with autism but their medical condition was a sensitive topic that we were forbidden to discuss. Since the start of my medical training, I have come across patients with varying degrees of autism, but I didn’t know much about the disease. Michael started to tell me the “Pediatrician Incident.” My jaw dropped to the floor as I listened in awe. Tears started to come down. I told Michael, “I will do everything to help you raise awareness.”
Michael is the UX Director for Netsoft USA, a partner company that we have worked with for a long time. A few years ago, his twin sons were born 10 weeks premature. After a prolonged stay in the neonatal intensive care unit, the boys came home, but one twin, “C,” developed a rare pediatric lung disease. Despite being on 24-hour oxygen, “C” developed quite typically until 18 months when his development seemed to halt and, in some ways, regress; he started to lose skills and go into his own world. Michael and his wife, as concerned parents, asked their pediatrician if this could be indicative of a developmental disorder. They grew more and more frustrated as their pediatrician dismissed their concerns as the result of “C” being a sick little boy. For several months, “C” continued to fall behind. By doing their own research, Michael and his wife concluded that “C” was showing signs of autism. They jotted down their questions, and noted problematic behaviors and signs. They presented their notes to a developmental evaluator when she asked, “So what makes you think your son might have autism?” Upon reading their concerns and observations, the evaluator said, “Thank you! You just saved me an hour of questions.” After two thorough evaluations, “C” was diagnosed with autism.
The real-life struggle Michael faced to get “C” diagnosed inspired him to create the Questioning Autism? app for iPhone and iPod Touch. He also inspired me to do painstaking research on my own to understand this complex condition. As a clinician devoted to promoting disease awareness, education and shared decision-making, I felt disappointed for my profession upon hearing what happened to Michael. We both wanted to create an app that could provide some guidance, education, and a platform to help concerned parents document everything they observe. That phase is probably the most frustrating and confusing time for these parents. The app is not intended to be a diagnostic tool or have any screening purposes; it is designed to promote communication between concerned parents and their pediatricians.
“We didn’t want other parents to have to go through that,” said Michael. I agree with him and I will help bring autism awareness and education to all corners of the globe. Thank you Michael for introducing me to the world of autism.