1.5 the Story of a 17-Year Longitudinal Clinical and Brain Imaging Study of Autism Spectrum Disorder from Childhood into Adulthood

I will explain how my pediatric and psychiatry training at Johns Hopkins, along with my clinical observations and early research findings on head circumference and comorbid mental health conditions in people with autism spectrum disorder, led to my conceptualization in 2000 of the need for a longitudinal clinical and multimodal brain imaging study of autism spectrum disorder from childhood into adulthood. I will discuss the strengths and limitations of longitudinal studies, the challenges, and how the model I was taught at Johns Hopkins—the need to “wed” research with good patient care—has helped retain participants and families over many years. I will present the results of the longitudinal study to date, what the participants and parents have identified as important to them, and the new questions that now need to be answered. Longitudinal studies that integrate different levels of investigation are critical for elucidating and understanding developmental, maturational, and aging changes across the life span in individuals with autism spectrum disorder.