Mapping the Dilemmas Parents Face with Disclosing Autism Diagnosis to their Child.
Nitsan Almog, Orit Kassel, Nili Levy and 1 others
PMID 35951204WHAT IT FOUND
Parents struggle to disclose autism to their children due to fears about stigma and the child’s understanding.
Most believe the child should be told, but few have done so, citing a lack of practical guidance on how and when to start the conversation.
Key findings
01The study identified five interrelated themes representing parental dilemmas: autism visibility, the stigma of the word 'autism', timing concerns, disclosure to family members, and the practical 'how-to' of telling the child.
02A majority of parents believed their child should be told about the diagnosis, yet only a small fraction had actually disclosed it, highlighting a gap between belief and action driven by uncertainty.
03Parents cited fear of the child using the diagnosis as an excuse for negative behavior ('secondary gain') and concern that the child would not understand the diagnosis as key reasons for delaying disclosure.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample was limited to parents of autistic boys in the first focus group, so findings may not apply to parents of autistic girls. Participants were self-selected and already aware of the disclosure dilemma, potentially excluding parents with more acute shame or conflict who did not engage. The study was conducted in Israel, so cultural attitudes toward stigma and diagnosis may not generalize to other contexts. The second workshop relied on anonymous Mentimeter responses and chat, which may lack the depth of the first focus group's face-to-face interaction.
Declared interests
The study was conducted in cooperation with the Family Center of ALUT, an autism organization. The authors state there was no conflict of interest in the collaboration.
The easy way to misread this
Do not interpret the high percentage of parents who believe their child should be told as evidence that disclosure is currently happening or that parents feel supported in doing so. The data shows a significant gap between belief and action, with only 19% having disclosed the diagnosis, indicating that parents are stuck and need practical guidance, not just encouragement.