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NCJ Number: NCJ 242359     Find in a Library
Title: Transparency, Hope, and Empowerment: A Model for Partnering With Parents of a Child With Autism Spectrum Disorder at Diagnosis and Beyond
  Document URL: HTML 
Author(s): Janice Mulligan, M.S.W., R.S.W. ; Radha MacCulloch, B.S.W., M.S.W. ; Bethany Good, M.S.W., R.S.W. ; David B. Nicholas, R.S.W., Ph.D.
  Journal: Social Work in Mental Health  Volume:10  Issue:1-6  Dated:2012  Pages:311 to 330
Date Published: 2012
Page Count: 20
  Annotation: This study examined the experiences of parents receiving a diagnosis of Autism Spectrum Disorder (ASD) for their child.
Abstract: While models for conveying a diagnosis of Autism Spectrum Disorder (ASD) are beginning to emerge in the literature, relatively little is known about how a diagnosis is delivered and experienced by families. This study examined the experiences of parents receiving a diagnosis of ASD for their child. Based on a phenomenological approach, a purposive sample of 10 parents (8 mothers, 2 fathers) participated in in-depth, semi-structured interviews aimed at understanding their diagnostic experience. Findings revealed a lengthy, complex, and discouraging assessment and diagnostic process that resulted in parents feeling confused, disempowered, and overwhelmed. Identified themes associated with diagnosis comprised: initial recognition that “something is different”; waiting, worry, and uncertainty; preference for diagnostic information in a hopeful tenor; feeling overwhelmed with information and emotion at diagnosis; processes of grief, relief, and making sense of ASD; and becoming an advocate, expert, and case manager. The importance of empowering parents by providing support, information, resources, and tools for navigating the complexity of service/treatments at the time of diagnosis was emphasized within a parent–professional partnership. A protocol for practice, focused on enhanced parental empowerment, is offered including specific clinical guidelines (what to share, how to share, and when to share) for sharing a diagnosis of ASD. Abstract published by arrangement with Taylor and Francis.
Main Term(s): Mental disorders
Index Term(s): Emotional disorders ; Medical research ; Medical evaluation ; Cognitive developmental theory ; Parental attitudes ; Attention deficit disorder (ADD) ; Canada
Type: Report (Study/Research)
Country: United States of America
Language: English
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