PTOTSLPCohortJournal of autism and developmental disorders2025

The Caregiver Concerns Questionnaire: A Tool to Target Care for Children on the Autism Spectrum.

Paul S Carbone, Yewande Dada, Michele Villalobos and 3 others

PMID 40788333

WHAT IT FOUND

Caregivers of autistic children rated moderate or severe problems in 7 of 19 areas on average.

Language and attention concerns dropped with age, while anxiety and social interaction concerns rose. Sleep and gut issues tracked with behavioral problems.

Key findings

01On average, caregivers rated 7.60 of the 19 CCQ items as a moderate or severe problem, with language use, attention span, hyperactivity, eating habits, and anxiety receiving the highest severe ratings.

02Concerns shifted with age: language use dropped from 77.6% moderate/severe in young children to 37.8% in adolescents, while anxiety and social interaction concerns increased significantly in older children.

03Moderate to severe sleep disturbance and gastrointestinal problems were significantly associated with aggression, self-injury, hyperactivity, mood swings, and anxiety.

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 study used cross-sectional data, so it compares different children at different ages rather than tracking the same child over time. Participants were from a single specialty clinic with low racial and ethnic diversity, which may limit generalizability to primary care or diverse populations. The CCQ is a screening tool for caregiver concerns and was not validated against later clinical diagnoses in this study. Selection bias is likely, as children continuing to attend a specialty clinic may have higher support needs or more profound autism than the general population.

Declared interests

The authors certify that they have no affiliations with or involvement in any organization or entity with any financial or non-financial interest in the subject matter.

The easy way to misread this

Do not interpret the age-related differences as natural improvement or worsening within an individual. These are cross-sectional comparisons between different children at different ages, and the higher concern levels in adolescents may reflect selection bias where children with greater needs remain in specialty care.

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