How do families face the disclosure of an autism diagnosis? A pilot survey among families of children with autism spectrum disorder

Background: Most families of a child with autism spectrum disorder (ASD) have difficulty accepting the diagnosis when they are first faced with it. Although acceptance is inherently taken for granted among the professionals, studies in the West have reported that some families must undergo an extended process toward acceptance, which in turn is regarded as having a negative impact on the prognosis of the child. This is also the case in Japan, where practitioners encounter many families who refuse to accept the diagnosis and thus raise their ASD child without the necessary information on the disorder.

Objectives: As a pilot survey, the present study determined 1) when the families were first notified of the child having a diagnosis of ASD; 2) what the families were told at that time; 3) who, other than the parents (e.g. the child, the siblings), were notified; 4) whether the families accepted the diagnosis; and 5) whether the disclosure had any impact on the child’s development.

Methods: We enrolled 100 parents who are members of a non-profit organization for families having a child with ASD. They were willing to fill out a self-report questionnaire on the disclosure of the diagnosis and their acceptance of it.

Results:  We found that most parents having a child with ASD had difficulties accepting the diagnosis. Furthermore, they tended to conceal the information from relatives and close friends until they had finally accepted the diagnosis.

Conclusions: The results underscore the importance of an interactive process between families and practitioners to help the parents accept the disorder.