Psychological Impact of Autism Screening on Caregivers.
Ramkumar Aishworiya, Devon Gangi, Van Kim Ma and 4 others
PMID 42063217WHAT IT FOUND
34.7% of caregivers reported negative feelings while completing autism screeners, but most said the feelings were mild, lasted under a day, and did not affect daily life.
Positive feelings like curiosity and feeling informed were far more common.
Key findings
0134.7% of caregivers reported at least one negative feeling while completing autism screeners, but 85.3% of those said it did not affect daily functioning and 87.5% rated it as barely noticeable or mild.
02Negative feelings were more common when the child screened positive (41% vs 28%) and in the ASD outcome group (71%). First-born parents (42.6% vs 27.7%) and mothers with a college degree or higher (36.8% vs 26.2%) were also more likely to report them.
0386.2% of caregivers endorsed at least one positive feeling while completing screeners, with 'curious' (53.5%), 'interested' (46.3%), and 'informed' (45.0%) being the most frequent.
STILL TO COME
How it was doneWhat they found
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What it does not show
The feelings questionnaire was completed at the end of the study, after all screenings and diagnostic results were known, so caregivers' answers may have been shaped by what they already knew about their child. Respondents were more likely to have higher household income and higher parental education than non-respondents, so the findings may not represent families with less education or lower income. The study was conducted in a research setting with online screenings and free diagnostic evaluations, not in routine primary care, so the experience may differ from what a family encounters at a well-child visit. The questionnaire did not cover the full range of psychological harms identified in earlier qualitative studies.
Declared interests
National Institutes of Health (grant R01MH121344). One author (S.O.) reports travel reimbursements and honoraria from Autism Speaks and Autism Science Foundation, and book royalties from Guilford Press. Other authors declare no conflicts.
The easy way to misread this
Do not read this as proof that autism screening is psychologically harmless. The feelings were measured retrospectively, after caregivers already knew their child's screening result and diagnostic outcome, so their answers may have been shaped by that knowledge. The sample was also skewed toward college-educated families, and the study was conducted in a research setting rather than routine primary care.
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