Practitioners' Disclosure of a Child's Diagnosis of Autism to Parents: Current Practices and Identified Barriers to Effective Communication and Support

Background: The disclosure of a diagnosis of autism in children is an event with profound implications for the child and family.  Successful disclosure can promote effective and timely understanding of the nature of the disorder, prognosis, and intervention options, and has implications for child and family well-being.  Researchers have suggested several factors that are associated with greater parent satisfaction, including interpersonal style of the clinician, quality of the information received, provision of written material, and the opportunity to ask questions.  More information about each of these and related areas is needed in order to successfully support and prepare families at the time of diagnosis.
Objectives:

The purpose of this study was to identify professionals’ current ASD disclosure practices regarding diagnostic information, related implications, next-step planning, and support for parents’ emotional adjustment, as well as their opinions regarding barriers to effective disclosure practice.

Methods: Eighty participants were identified through their membership in one of these four groups: a) the Autism Treatment Network; b) the Autism Special Interest Group of the Association for University Centers on Disabilities; c) the Leadership Education in Neurodevelopmental and related Disabilities network; and d) the University Center for Excellence in Developmental Disabilities network. Participants completed an on-line survey composed of the following sections: Demographics, Background, Description of Current Disclosure Practices, Identification of Barriers to Effective Disclosure, and Recommendations for Effective Disclosure. The survey was meticulously designed after thorough literature review and qualitative data gathered through focus groups. The tool was stringently tested and reviewed for face and content validity by 10 subject matter experts. Participants’ responses to the survey were analyzed through quantitative statistical methods (i.e., descriptive statistics, including percent, mean response levels, range of responses, chi-square), as well as qualitative methods (i.e., review and analyses of written responses). 

Results: Significant variation was found in how participants reported their practice of autism disclosure to families.    A number of variables were identified by participants that contributed to or hampered disclosure of the ASD diagnosis, expectations for outcome, emotional adjustment, next-step planning, and coordination of services. 
Conclusions: Results suggest that specific features of the diagnostic setting, clinician’s communication style, written information provided, and structure of the diagnostic session significantly impact clinicians’ perceptions of and satisfaction with their current disclosure practices.  Barriers to effective disclosure were noted in systemic, interpersonal, and content-specific areas.