Mapping the Dilemmas Parents Face with Disclosing Autism Diagnosis to their Child

J Autism Dev Disord. 2023 Oct;53(10):4060-4075. doi: 10.1007/s10803-022-05711-y. Epub 2022 Aug 11.

Abstract

The diagnosis of autism is often delivered solely to the parents, a practice that forces them to confront the dilemma of whether, when and how they should disclose it to the child. The present study seeks to probe deeper into the phenomenon of diagnosis disclosure and lead to a clearer understanding of the dilemmas parents? face. This article presents an analysis of a focus group and an online survey conducted with parents. The analysis produced a model that maps parents' dilemmas regarding diagnosis disclosure to their child. The dilemmas, found to be complex and interconnected, concern the invisible nature of autism, the word autism and stigma, time motif, child's environment, the act of disclosure itself, and the child's personal narrative.

Keywords: Autism; Diagnosis disclosure; Dilemma; Identity; Parents.

MeSH terms

  • Autism Spectrum Disorder* / diagnosis
  • Autistic Disorder* / diagnosis
  • Child
  • Disclosure
  • Humans
  • Parents
  • Social Stigma