Coming to understand the child has autism: A process illustrating parents' evolving readiness for engaging in care.
Stephen J Gentles, David B Nicholas, Susan M Jack and 2 others
PMID 31508991WHAT IT FOUND
Parents often became aware and motivated before diagnosis, but readiness varied.
Clinicians should ask what parents already know and have tried, then tailor information and support. Extensive information at diagnosis may overwhelm parents still early in this process.
Key findings
01Most parents reached initial awareness that their child had autism before diagnosis, and only a minority became aware after diagnostic assessment.
02Parents moved through variable steps: forming an image of difference, questioning signs, knowing something is wrong, and being convinced it is autism, with readiness growing as certainty grew.
03Denial and grieving delayed some parents' readiness to engage in care, but grieving was described as transient.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
Most participants were mothers; fathers were included mainly through mothers' accounts, except three dyad interviews, so the process may differ for fathers. The sample was purposefully selected from Ontario and may not represent other regions, cultures, or families whose first language is not English. Words such as most, minority, and majority describe this sample only and may not represent all parents. The study describes parents' experience and meaning-making, not whether any clinician strategy improves child or parent outcomes. Professional interviews were used mainly to confirm and refine interpretations, not as direct findings.
Declared interests
The author(s) disclosed support from two Strategic Training Initiative in Health Research fellowships funded by the Canadian Institutes of Health Research, including an Autism Research Training Fellowship jointly funded by the Sinneave Family Foundation and a Knowledge Translation Canada Fellowship, and a research award from Autism Ontario.
The easy way to misread this
Do not assume a diagnosis automatically makes parents ready to engage. Many parents became aware and motivated before diagnosis, while others were still in denial or grief at that point.