Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder.
Helen McConachie, Nuala Livingstone, Christopher Morris and 8 others
PMID 28861649WHAT IT FOUND
Parents of young children with autism valued measuring happiness, anxiety, sensory discomfort, distress, aggression, sleep problems and parent stress, not only core social communication symptoms.
They wanted assessments to capture daily living and family impact.
Key findings
01Parents ranked happiness, anxiety, unusual fears, sensory discomfort, self-esteem, distress, nonverbal ability, sibling relationships, parent stress, aggression, sleep problems and social exclusion among the most important constructs to measure.
02Parents wanted assessment to recognise children's skills and future participation, including independence, life skills and awareness of danger, not only impairments.
03Researchers prioritised maladaptive behaviour, while parents had ranked happiness and anxiety among the top constructs.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
This is not an intervention trial; it reports what parents and professionals valued, not whether treatments improved outcomes. The qualitative studies included in the review were generally poor in reporting sampling, recruitment, data collection and analysis, and key details were often missing. Only seven qualitative papers remained after screening, and only two focused specifically on younger children. The parent consultation involved 17 parents from three UK sites, so the views may not represent all families. The Discussion Day included a small number of parents, one young adult, professionals and researchers, so stakeholder disagreement may reflect the particular participants. Diagnoses in the reviewed studies typically relied on parental report. The focus was limited to children up to age 6, so findings may not apply to older children or adults.
Declared interests
The supplied text reports funding by the Health Technology Assessment Programme. It does not report author conflicts of interest.
The easy way to misread this
Do not read these parent-rated outcomes as evidence that any intervention works. The paper reports what parents and professionals valued, not whether interventions improved them.