Imaginative play has an important role in child development. Scientific evidence suggests that the ability to engage in "pretend play" may translate into increased abilities in social interactions and social-cognitive function. However, children with Prader-Willi syndrome (PWS) commonly struggle with pretend play. Many PWS families have been participating in an ongoing study funded by FPWR and led by Dr. Anastasia Dimitropoulos at Case Western Reserve University, whose goal is to assess and optimize pretend play activities and social cognition in PWS. We recently spoke with Dr. Dimitropoulos, and learned about her life and focus on PWS research.
Camp Hope: Formative Experience With PWS
Even before college, Dr. Dimitropoulos recalls finding science extremely exciting. She began her undergraduate career at Emory University as a pre-med majoring in psychology, really enjoying her coursework on abnormal psychology. One summer during college, Dr. Dimitropoulos served as a counselor at Camp Hope, a summer camp held at the Clemson University Outdoor Lab for adolescents and adults with developmental and other medical challenges. Here she gained first-hand experience caring for individuals with intellectual disabilities. In particular, one camper had PWS, and came to Camp Hope with copious information regarding her needs — including detailed instructions specifically about food-related issues. This camper also had very memorable behavioral meltdowns when her food-related needs were not met. Dr. Dimitropoulos's experiences as a camp counselor made a lasting impression on her, motivating her to start pursuing research in the field of intellectual disability. When Dr. Dimitropoulos returned to school, she began working in a lab studying language skills in individuals with both Williams and Down syndromes.
Graduate Work in PWS Psychology
After graduating from Emory in 1995 with a BA in Psychology, Dr. Dimitropoulos continued her studies as a graduate student at Peabody College at Vanderbilt University within the Kennedy Center there on disability research. For her Masters degree in General Psychology, she focused on tantruming behavior in PWS, and extended her PhD thesis research into the question of ritualistic behavior in children with PWS. For this research, the Prader-Willi Syndrome Association (USA) was instrumental in connecting Dr. Dimitropoulos with parents who then filled out surveys related to the care of their children with PWS.
After obtaining her PhD in Developmental Psychology in 2002, Dr. Dimitropoulos continued as a postdoctoral researcher at Yale University, performing fMRI brain imaging of individuals with PWS as well as control subjects, to characterize blood flow in the brain before and after eating. This research demonstrated distinct patterns of brain activity for those with PWS following food consumption. Since 2005, Dr. Dimitropoulos has been on the faculty in the Case Western Reserve University Department of Psychological Sciences, where she is currently an Associate Professor.
Behavior and Cognition in PWS
The primary research focus for Dr. Dimitropoulos and her group is understanding behavior and cognition in individuals with PWS. Two key areas of study include hyperphagia and autism-like behavior. In collaboration with Dr. Sasha Key at Vanderbilt University, Dr. Dimitropoulos has recently embarked on a project focused on eye tracking and hyperphagia. Participants in this research study are shown images of food and non-food objects, and eye-tracking measurements are used to gauge how long each type of image is studied — i.e., a measure of interest.
The goal is to gauge how intervention with targeted medications impacts the interest in food-related images. As she described in her presentation at the October 2014 FPWR research conference, Dr. Dimitropoulos has also had a longtime interest in the nature of autism-like behaviors in individuals with PWS. She has characterized the ability to recognize faces in both PWS and autism spectrum disorder (ASD), and basic social behavioral and emotional patterns common to both PWS and autism.
Study With Families: Pretend Play to Address Social Cognition in PWS
Recently, Dr. Dimitropoulos has been collaborating with her colleague, Dr. Sandra Russ, and Case Western graduate student, Olena Zyga, to understand the challenges associated with pretend play in PWS and ASD. Furthermore, they aim to understand how these challenges translate into challenges regarding overall social and cognitive development. So, what exactly is "pretend play"? This is a type of play in which objects, toys, and people are treated creatively, as if they were something else, part of a made-up story that a child tells.
Pretend play is to be distinguished from "functional play," in which, for example, a toy car is rolled back and forth on the floor. In pretend play, the car would be rolled into and parked in an imaginary garage, and then taken out, transformed into a space-ship, and flown to the moon. In initial studies of children between ages 7 and 15 with PWS, Dr. Dimitropoulos and her group found that children with PWS showed similar deficits in pretend play abilities to those found in children with ASD, although the specific pretend-play challenges depended on the genetic subtype of PWS (i.e., deletion or uniparental disomy). Furthermore, they found significant improvements in pretend play when an adult intervened to facilitate play activities.
As a follow-up program, Dr. Dimitropoulos is running the Parent-focused Remote Education To Enhance Development ("PRETEND") program, which is funded by FPWR. This study focuses on 3-5 year old children with PWS, ASD, and a control sample, and aims to examine the early social challenges faced by children with PWS, in comparison/contrast with the other samples. The other key goal of the study is to develop strategies for parents to help optimize creative play in children with PWS, in order to enhance social and emotional development. One truly novel aspect of this study is that it is primarily being conducted from participants' homes via "telehealth" (i.e., video conferencing) sessions, in order to cast a wide geographic net.
For each participating parent-child pair, the study consists of 12 sessions over a 6-week period, starting with an initial assessment measuring the child's cognitive, social, and emotional abilities. Then, an individualized program of strategies is designed and implemented to help the parent engage his or her child in play, minimize behavior problems, and build pretend play skills (and the related social and emotional functioning) in the child. While still in progress, the PRETEND program has already shown some extremely promising results!
Outside of work, Dr. Dimitropoulos spends a lot of time as a self-described "taxi driver," shuttling her 12- and 9-year old sons to their various extracurricular activities, and making sure everyone gets where they need to go. She enjoys reading fiction novels, and exposing her sons to their Greek heritage, about which she is very proud.For updated information on PWS clinical trial opportunities and to sign up for a monthly PWS Clinical Trial Alert, visit the PWS Clinical Trials page.