A Protocol for the Disclosure of a Diagnosis of Autism by Professionals: Parent's Recommendations for Best Practice

Background: Successful disclosure of an autism diagnosis can promote timely understanding of the disorder, prognosis, and interventions, and has implications for child and family well-being.  Protocols for diagnostic disclosure have been used in other health areas to promote communication and collaboration in planning next steps.  More information is needed about how a protocol could be implemented in autism diagnostic disclosure to explore the extent to which it supports families.
Objectives: The purpose of this study was to use qualitative methodology to characterize parent opinions and recommendations regarding a protocol of autism diagnostic disclosure.  
Methods: Participants were 6 parents of children recently diagnosed with autism.  A moderator facilitated participation in a focus group.  Parents completed a follow-up questionnaire.  A narrative of the focus group was audio-taped, transcribed, and coded using qualitative methods.    
Results: Based on narrative data, a number of variables related to the disclosure protocol were identified by parents that contribute to or hamper understanding of the autism diagnosis and implications.  
Conclusions: Results suggest that several protocol variables may be helpful in supporting parents at the time of their child’s autism diagnosis.  Future research will include controlled evaluation of whether use of the protocol promotes parental satisfaction and family well-being.