[Autism spectrum disorder diagnosis in young children: a clinical-ethical study on the experiences of parents and physicians].

BACKGROUND After decades of research and clinical experience, autism spectrum disorder (ASD) turns out to be heterogeneous in every sense, including phenotype and etiology. How is this heterogeneous view translated in information that is useful and significant to parents and clinicians?
AIM: To formulate recommendations with regard to clinical ASD care in young children.
METHOD: We conducted in-depth interviews on how parents (11 mothers and 6 fathers of 11 children) and physicians (n = 16) view and experience a young child's ASD diagnosis. The interviews were analysed in Nvivo 11 according to the guidelines of interpretative phenomenological analysis.
RESULTS: The interviewed parents and physicians addressed psycho-relational implications of an ASD diagnosis as much as treatment-oriented implications. Twelve months after their child got an ASD diagnosis, some disappointment regarding these implications led parents to a pragmatic understanding of an ASD diagnosis.
CONCLUSION: Our results may be useful to both clinicians and policy makers with regard to clinical ASD care in young children. An ASD diagnosis in itself may be of limited help to parents and clinicians but can be of use if it is embedded in a request-oriented diagnostic process guided by a communication model of shared decision making and aimed at elaborating a treatment-oriented profile of the child.