Interventions for children with autism : how do caregivers decide?

Abstract

Thesis (Ph. D.)--University of Rochester. Margaret Warner Graduate School of Education and Human Development, 2012.This exploratory qualitative study investigated the reasons behind parents' decisions about interventions for their child with autism. Twenty-three parents from 18 families making decisions about interventions for 19 young children with autism were interviewed in order to understand their perspectives on deciding a philosophical approach, choosing a preschool program and/or deciding on alternative treatments. Five professionals were also interviewed to obtain their perspectives on their role in the decision-making process. Parents' considerations in the decision-making process were categorized into the themes of parental attributes, child attributes and program attributes. Parents utilized many resources for information upon which to make their decisions. Research on efficacy of interventions was considered by some families but was not a determining factor for any. At times parents received contradictory recommendations and needed to decide which source to trust. The culmination of these influential resources, built upon their background and life experiences, led them to have an inner sense of whether they felt an intervention would be safe and effective for their child. Parents and professionals had differing opinions on the role of professionals in the decision-making process. Although both agreed that the decisions are the responsibility of parents, parents wanted guidance from the professionals they viewed as the most knowledgeable about autism. Parents felt unprepared to make independent decisions since they did not have the knowledge and experience of professionals upon which to base their decisions. Professionals saw the decision as the right of parents since parents are the most familiar with their child, his needs and the family situation. Opportunities for clearer communication between parents and professionals and among professionals were identified. Recommendations for policy changes that could improve diagnostic and treatment services for children with autism and their families were discussed