"Even if you don't tell, everybody knows" - Dilemmas of parents of autistic children regarding diagnosis disclosure. (English)

The medical diagnosis of autism, held during childhood and adolescence, is often presented only to the parents. Therefore, they face the dilemma of when, whether and how they should disclose it to their child. While the prevalence of the diagnosis of children and adults with autism has been increasing in recent years, there is still no therapeutic approach that addresses the coping of parents, children, teenagers, and young adults, with the issue. The present study depicts a qualitative inquiry based on a two-sessions focus group with parents confronting this dilemma who have not yet disclosed the diagnosis to their child. The article presents a model of five complex and interconnected dilemmas with which parents must cope. The first concerns the invisibility of autism and the fact that it can be concealed. The second addresses the stigma related to the diagnosis and the difficulty facing the word itself. The third dilemma addresses the time motive and the concerns related to the child's reaction to the diagnosis. The fourth focuses on the child's surroundings who are aware or unaware of the diagnosis, and the last dilemma addresses the child's personal narrative and the practice of disclosure. The article's conclusion contains initial recommendations that can be used as a basis for the further development of a detailed intervention program that can assist parents throughout the diagnostic process. [ABSTRACT FROM AUTHOR]

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