In my Research Methods and Laboratory in Psychology course at Brandeis University this past spring, we spent some time discussing representative sampling and the importance of recruiting a diverse population. This is essential in order to achieve external validity, the extent to which the results of a study can be generalized to other situations or to other people. (If you would like to learn more about representative sampling, click here!)
Representative sampling is often a concern in autism research including at the Center for Autism Research. Many of the families that are able to bring their children in for various assessments and research projects are affluent Caucasian families, and this can potentially confound the data. Since the studies mostly involve these certain groups, researchers cannot know whether the results are generalizable to a larger population or whether they are solely consistent with that particular group.
The Center for Autism Research is aware of this issue and is trying to combat it through various new projects such as the Response to Name app. Diminished response to name is a hallmark feature of autism that can potentially serve as an early indicator of an autism spectrum disorder. Researchers at CAR have developed a mobile smartphone app that prompts a parent or guardian to stand behind their child when the child is engaged in an everyday activity and to call their name. Thus, families don’t need to come into the lab to participate. The app then video records the response and uploads the file to a secure network. Parents also rate whether their child responded to their name. (More information about the pilot run of the smartphone app can be found here.)
This past week I have been watching the videos (about 30 trials per participant!) and coding them for certain information including whether the name calling bid was typical, if the child was in view of the camera, and if they responded. It has been very interesting for me to observe the different ways that children with autism, children with other developmental disorders, and typically developing children respond to their own names. This phenomenon was not something I thought much about before, but now the distinctions are becoming clear to me and I better understand the importance of studying this trend.
It is the hope of the Center for Autism Research that in the future, the data collected from this app will be used to better understand “response to name” and aid in the early screening and potentially diagnosis of autism spectrum disorder. The use of the mobile app is extremely valuable in the effort to get a wider range of families to participate in research. With the introduction of the app, there is greater accessibility to the study which hopefully will be a step towards more accessibility to diagnoses and treatment for underrepresented groups.