Systematic review of measures and interventions for caregiver adjustment to child autism diagnosis.
Elysha Clark-Whitney, Lucy A Tully, Adrienne I Turnell and 3 others
PMID 41518230WHAT IT FOUND
Research on how caregivers adjust to an autism diagnosis lacks a standard definition or validated measure.
Four interventions showed some benefit, but evidence is too mixed to recommend a specific approach. Clinicians should focus on listening to individual caregiver experiences rather than applying a universal adjustment model.
Key findings
01The field uses 42 different measures across 22 constructs to assess caregiver adjustment, indicating no consensus on how to define or measure it.
02Of eight identified interventions, four showed statistically significant improvements in caregiver adjustment, but effect sizes varied and clinical significance was not reported.
03Mothers comprise 81.81% of study participants, and fathers are underrepresented, meaning findings may not apply to male caregivers.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The review included only English-language, peer-reviewed quantitative studies, potentially missing qualitative insights or non-Western perspectives. Study quality was variable, with many studies failing to report how autism diagnoses were confirmed or whether samples were representative. The total participant count (14,163) is inflated because multiple studies used the same large datasets. Fathers and autistic parents are significantly underrepresented in the evidence base. Intervention studies had small samples and mixed designs, limiting conclusions about efficacy.
Declared interests
The first author received an Australian Government Research Training Programme Scholarship. The authors declared no other conflicts of interest.
The easy way to misread this
Do not interpret the lack of a 'gold standard' measure as evidence that caregiver adjustment cannot be assessed. It means current tools are inconsistent and often unvalidated for this specific population. Also, do not assume interventions that help mothers will help fathers, as the evidence base is heavily skewed toward mothers.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →