By Marjorie Madfis
I am the mother of a 16 year old girl who was diagnosed with PDD-NOS, an Autism Spectrum Disorder, when she was two and a half. Before she was born, I never knew anyone with autism. By the time my daughter was 12 months old, I had a suspicion. By the time she was 18 months old, I knew something was out of the ordinary, though my pediatrician did not. I sat down in a friend’s office and cried. For several years, I thought, “Oh, one more speech therapy session and she’ll be all better.” Since then, I’ve undergone a continual process of learning. I found that being a mother of a child with autism is an all-consuming job and life, yet I have to juggle full-time employment with parenting.
When I started fundraising for National Alliance for Autism Research (NAAR) in 2001, I thought that within a few years, we would have identified a cause and a cure. Eleven years later, as I attended various sessions at IMFAR, it seemed to me that identifying the cause or causes — let alone a “cure” — is still at least a few years away. However, I was reminded that scientists have undertaken a vast amount of research, which has led to greater understanding of the disorder and its attributes.
At IMFAR, I attended an interest group session about autism in females and learned that females make up only about 20-25% of children diagnosed with ASD. This session left me with many questions about why fewer females are diagnosed. Is it because they are not identified until they are older? Are females better able to compensate?
I also attended a session about cognition and behavior across the lifespan. I understood roughly 33% of what was said. The researchers reported on auditory and visual processing, multisensory processing, motor impairments, posture, balance and the implications of each for socialization. This session helped me understand that there is a correlation between the sensory system and social skills.
It was taxing to comprehend the data and findings from the researchers’ sessions. Parents are not the primary audience at IMFAR. In fact, I would guess we made up less than 5% of the audience. However, several researchers approached me during the cocktail reception to tell me they appreciated my questions during the Q&A sessions. I told them I wanted to make sure I got the most out of it. My dad always said, “There is no such thing as a stupid question; if you don’t know, ask.”