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Parent Mediated Interventions in Autism: The Search for Meaningful Outcomes

Age

  • Toddlerhood (13-35 months)

Abstract

Teaching parents of very young children with autism spectrum disorder (ASD) to interact with their child in the manner of an interventionist has become a key strategy for early intervention programs. Despite a growing literature documenting stress in parents of children with ASD, little is understood about the impact on parents of implementing interventions. Instead, research has focused on child outcomes, which are not as significantly altered through parent mediated programs as they are in professionally implemented services. The primary goal of this study is to partner with families to redefine "success" in parent mediated interventions with very young children with ASD; influencing clinical practice and altering intervention outcomes research. Our central hypothesis is that parent mediated early intervention can be successful in positively impacting family well-being, parental health and cognition, and parent-child interactions, and that understanding these meaningful and functional outcomes will allow improved interventions and therefore child and parent well-being. This hypothesis will be addressed through two phases of design employing mixed-methods to determine appropriate measurement of meaningful outcomes. Work throughout this project will be guided by partnering with families of individuals with ASD through a Consumer Advisory Council and by adhering to the principles of Community-Based Participatory Research (Israel, Schulz, Parker, & Becker, 1998). The study will 1) explore themes in family narratives related to their experiences of parent mediated early interventions, 2) use these themes to guide selection of meaningful parent and family outcomes, and 3) assess the effect on these parent and family outcomes of a parentmediated intervention based upon the Early Start Denver Model (ESDM; Rogers & Dawson, 2010; Rogers, Dawson, & Vismara, 2012). It is hypothesized that the ESDM will have a positive impact on the family outcomes derived in this study, and that there will be a significant positive relationship between parent and child outcomes. This study seeks to advance the current knowledge regarding parent mediated interventions for young children with ASD, providing a common language for research in the important area of family well-being, while supporting more extensive engagement of families in this discussion, and reinforcing the need to consider the child within the family context. Parent mediated interventions are often talked about as the key to providing the intensity of services children with ASD require and to providing for underserved populations, but it is necessary to understand whether this type of intervention is likely to support child and family outcomes, or simply provide another stressor to the family system, damaging long-term well-being.

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