Although parents seem to notice the slightest changes, both negative and positive, in their child’s behavior, scientists need quantitative data to fully understand the effects of therapy methods, diets, medicines, etc. Matthew Goodwin recognizes this, and he and his colleagues at the Georgia Institute of Technology received a $1 million grant from the Simons Foundation Autism Research Initiative to help parents collect data at home to then be analyzed by the team. Think about it: parents will be able to collect research on their child with autism in a non-disruptive way, without bringing them to a therapy setting.
This two year program involves families in the Simons Foundations’ Variation in Individual Project (VIP), and “aims to connect genetic mutations likely associated with autism and other neurodevelopmental disorders with clinical and behavioral patient profiles.” [i] The process’ first year will begin by identifying behaviors that are crucial to categorize autism, followed by deciding which sensing systems to use. After those two stages are complete, families around the country will use this system:Boston,Atlanta, andProvidence,R.I., and eventuallyNew York,Florida, andLos Angeles. With more and more families involved in the study, a clear picture will be painted for the researchers to analyze.
The second year will be dedicated to data analysis, using cameras, audio recorders, and physiological sensors (worn and operated by parents). These methods will track sleep, seizures, language use, and other important behaviors. “General affect and deviations from a child’s typical behavior” will be closely watched. According to Goodwin, this is the first time a study will be using a “total lay person.” Both families and the professionals will reap the benefits of this study, as families will be closely monitoring their children, aware of what to be looking for and professionals will have data to base their methods off of. Too often does autism go unnoticed, and Goodwin is hoping to change that by implementing a low-impact and easy system for parents and caregivers alike.
[i] “News at Northeastern” Autism research at home. 18 Jul 2013. Web. < http://www.northeastern.edu/news/2013/07/autism-research-at-home/>