To manage a child's autism treatment, parents need access to knowledge about autism, treatment approaches, special education law, and local services, as well as the capacity to monitor and coordinate a child's treatment. Parents'interactions with teachers or other care providers as well as other parents are likely to be critical to their knowledge and monitoring capacity. The proposed research uses innovative social network techniques to examine how parents learn from other parents and from clinicians, teachers, and other personnel about their child's autism treatments. We hypothesize that social networks influence parents'knowledge about autism treatment as well as their capacity to monitor treatment. Because social network ties tend to form among socially similar people, we expect that networks will partially mediate the influence of parent SES and race on parent knowledge and monitoring capacity. In addition, we anticipate that the formation of network ties among parents and between parents and clinicians/educators will differ by type of organization (school, clinic). Research on network dynamics among parents, clinicians, and teachers involved in autism treatment support new intervention models that can improve the efficacy of autism treatment and address disparities. Although sophisticated network methodologies have been applied in other studies of health and health care, they have been little used in the study of autism care. Because of this dearth of research, pilot study is essential prior to a major network study on this topic. The proposed research has three specific aims: (1) to carry out qualitative data collection at three racially and economically diverse school or clinic sites;(2) based on this fieldwork, to develop and pretest a network survey for use with parents and autism care providers;(3) to implement this survey in a three-wave panel across the three study sites in order to test acceptability and feasibility and generate preliminary data. This study will generate hypotheses, yield a field-tested survey instrument, and provide preliminary evidence about the effects of social networks on parents'capacity to manage their child's autism treatment, laying the groundwork for larger-scale research and intervention.

Public Health Relevance

Autism is a significant cause of disability, and the prognosis for children with autism depends upon the treatment they receive. Social networks may help parents better manage their children's autism care. This mixed-methods pilot study will develop a network survey and generate preliminary data for a larger research project to examine the role that social networks play in autism care and develop new interventions.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Exploratory/Developmental Grants (R21)
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Social Psychology, Personality and Interpersonal Processes Study Section (SPIP)
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Kau, Alice S
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University of Chicago
Social Sciences
Schools of Arts and Sciences
United States
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