How Parents Learn about Autism Treatments through School-based Social Networks

Elizabeth McGhee-Hassrick

Autism is a serious disorder affecting perhaps one in a hundred children in the United States. Treatment in childhood can have a significant effect on development. Most children with autism spectrum disorders receive intensive educational interventions as their primary form of treatment. These treatments often take place in schools and require collaboration between home and school, because children diagnosed with autism have difficulty transferring skills learned in one setting to another. To manage a child’s autism treatment effectively, parents need access to knowledge, including general knowledge about autism, treatment approaches, special education law, and the availability and quality of local services, as well as monitoring capacity, in other words the ability to monitor fidelity of treatment and to adjust the treatment protocol as a child develops. While doctors can provide information about autism and its treatment, and may also help parents identify local services, parents’ contacts with teachers or other care providers as well as other parents are likely to be critical to their day-to-day management of treatment. We know essentially nothing, however, about how these informal social interactions influence parent knowledge or monitoring capacity. Research suggests that the configuration of an organization can impact the formation of parent social networks. The proposed research uses qualitative data collection and social network data from two differently organized school settings to examine the process by which parents of different social classes and racial groups learn from other parents and from clinicians, teachers, and other personnel about their child’s autism treatments and how these interactions shape the ways in which parents manage their autistic child’s treatment. Students diagnosed with autism are typically situated in two different classroom settings. Depending on their individualized education plan, they are located in self contained classrooms or mainstreamed in general education classroom settings. How might these different configurations shape the formation of parent social networks? The data collected for this research project compares the social networks of parents who have children enrolled in regular education classrooms with those of parents of children diagnosed with autism who are enrolled in various different kinds of classroom settings. Do parents of children diagnosed with autism interact with other parents at their child’s school? How do the social networks of parents of children diagnosed with autism vary from the social networks of other parents at the same school? This research will contribute to special education research by examining how varying organizational contexts in schools shape how parents learn about their child’s treatments from their interactions with others. By examining the social network processes that underlie parents’ capacity to manage their child’s treatment, I hope to identify interactional mechanisms that impede or support the ongoing treatment of children diagnosed with autism. The proposed research will advance our scientific understanding of social determinants of treatment and outcomes for autistic children, and provides new conceptual tools for understanding disparities in treatment and outcomes. In addition, this research supports the design of interventions that generate key interactional supports to help close the current gap in autism treatments for low-income and minority children.

About Elizabeth McGhee-Hassrick

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