Led by Dr. Peter Bearman, researchers at Columbia University’s Institute for Social and Economic Research and Policy are currently collecting life stories from parents about their experiences in recognizing their child’s autism, and their journey seeking professional help and navigating the available service systems.
Dr. Bearman is the recipient of the prestigious NIH Director’s Pioneer Award, a $2.5 million award that will support his study of the social determinants of autism. The goal of this project is to gain a better understanding of the road to diagnosis. Parents have different experiences and observations of their child’s development and they have different personal resources with which they access care and services. Parents also differ in the type and extent of their support networks and social relations. Parents often make different decisions in their quest for obtaining the right diagnosis and care for their child. Columbia would like to give parents the chance to tell their stories through an online survey. Participation in the survey may help researchers understand the heterogeneity of autism as well as how children develop over time.
If you are the parent of a child with autism, you can participate in the online semi-structured survey at Columbia University’s website, http://www.understandingautism.columbia.edu
“The autism epidemic is a huge and complex puzzle which impacts hundreds of thousands of children and families,” said Bearman. “It is one of the most pressing population health problems of our time. The Pioneer award makes it possible for us to think new thoughts and take big chances in our understanding of the epidemic and hopefully to make major contributions to public health.”
Numerous studies have investigated hundreds of factors believed to be associated with both the incidence and increased prevalence of autism. However, a significant dilemma facing researchers is that no single factor correlates very highly with the developmental disorder.
Peter Bearman’s research aims to provide new insight into the increased prevalence of autism by comprehensively and simultaneously examining the major factors potentially driving this epidemic. Bearman’s study seeks to identify to what extent each of the three competing theories-expanded criteria for diagnosing autism, environmental degradation, and genetic inheritance-is able to account for the rise in autism cases.
In the first stage of his project, Bearman will build new data sets that enable him to understand potential gene-environment interactions, and assess the impact of changes in diagnostic criteria, family dynamics, and other factors in accounting for the autism epidemic. The second phase of his research will focus on understanding the social networks of doctors, hospitals, schools, and interacting parents in neighborhoods and associations whose activities construct the epidemic as we observe it. The third stage of the project will extend the framework developed for analyzing autism to other non-contagious epidemics, ADD, ADHD and bi-polar disorder which, though biologically unrelated to autism, may share some underlying social dynamics.
NIMH Director Dr. Tom Insel recently interviewed Dr. Bearman about his work. Video and transcript of this interview are available at http://www.nimh.nih.gov/media/video/bearman.shtml