Identifying autistic children: Priorities for research arising from a systematic review of parents' experiences of the assessment process.
Sinead O'Neill, Grainne M O'Donnell
PMID 38659201WHAT IT FOUND
Parents consistently reported that the assessment process was confusing, lengthy, and often felt hierarchical.
They valued respectful, clear communication and being treated as experts on their child. Many felt overwhelmed by information during feedback, highlighting a need for structured, supportive interactions rather than just clinical data.
Key findings
01Parents frequently experienced the identification process as confusing and lengthy, with unclear pathways to services.
02Respectful, empathetic relationships and clear, simple communication were highly valued by parents, particularly during feedback sessions.
03Many parents felt their concerns were initially overlooked or discredited by professionals before the diagnosis was made.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The review only included studies where a psychologist was part of the assessment team, which may not reflect all diagnostic contexts. The studies spanned 20 years, during which diagnostic criteria and societal attitudes toward autism have changed significantly. The review focused on parents' perspectives, not the experiences of autistic children themselves. Most studies were conducted in Western contexts (US, UK, Ireland, Sweden, Hong Kong), limiting generalizability to other cultures.
Declared interests
The authors declared no financial support for the research or authorship of this article.
The easy way to misread this
Do not interpret these findings as evidence that involving a psychologist improves outcomes. The authors explicitly state they did not assess whether psychologist involvement impacted parental experience, only that it was an inclusion criterion for the studies reviewed.