After 20 years since finishing undergraduate studies, Carol Wilkinson, MD, PhD, IDDRC Investigator, has observed that the therapies for autistic children with limited communication are, unfortunately, approximately the same today. In part, this is due to the derth of quality research data needed to inform the development of new treatments. What are the barriers to gathering quality data? Dr. Wilkinson explores this question and possible answers.

TSCnow After Dark Podcast - Episode 23: Mustafa Sahin, MD, PhD discusses the past, present and future research on autism spectrum disorder (ASD) in TSC.

As an undergrad, I worked closely with a preschooler with autism. He had very limited language and despite receiving a lot of excellent support, he made little progress. Then one day he spontaneous said a full sentence - “I want pizza!”. This dichotomy - how a child can have the ability to speak, but not functionally use this ability - spurred my initial research interests in autism and continues to guide much of my research interests.

I have always been interested in how complex systems form. As I realized that the developing brain is more complex than anything else in technology or nature, an interest in Computer Science in high school led to a focus in Biomedical Physics and Neuroscience in college and graduate school, and then finally evolved to choosing Child Neurology and the study of Neurodevelopmental Disorders and Intellectual Disability as a career path.

I first became interested in IDD back in high school, when I took my first trip to Romania to volunteer in an orphanage.  Many of the children I met there showed quite atypical development, along with physical features like short stature and abnormal motor activity. I wondered how changes in the environment, like lack of expected attachment to adults and play, could lead to such tangible changes in the body and brain.