Transparency, Hope, and Empowerment: A Model for Partnering With Parents of a Child With Autism Spectrum Disorder at Diagnosis and Beyond

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.