The Social Support Network of Adults with an Autism Spectrum Condition: An Exploration Using the Network in Action-Questionnaire.
Rinske M van den Heuvel, Michel Wensing, Hilde M Geurts and 1 others
PMID 35182260WHAT IT FOUND
Adults with autism reported few network members and wanted more friends or better contact.
Family members listed more network members than patients did, but the two often disagreed on what help was needed. Use patient self-report to guide treatment goals, not proxy estimates.
Key findings
01Proxies reported significantly more network members for patients than patients reported themselves, though other support ratings were similar.
02Over half of patient-proxy pairs had no overlap in the specific wishes they expressed for the patient's social network.
03The questionnaire's social support items formed two factors (positive support and distress) rather than the intended three, suggesting emotional and practical support are not distinct in this group.
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
The sample consisted of adults seeking specialized mental health care, often with co-occurring conditions and a history of unsuccessful treatment, so findings may not apply to autistic adults without these complexities. The questionnaire structure varied per individual based on how many network members they listed, making some comparisons less precise. The study did not check if patients and proxies were naming the same specific individuals as network members, so discrepancies in numbers may reflect different definitions of 'network' rather than different realities. The NiA-Q is a new tool; its feasibility and acceptability in routine care were not tested here.
Declared interests
The study was approved by the Medical Ethics Committee of Amsterdam University Medical Center. The text does not report specific funding sources or author conflicts of interest.
The easy way to misread this
Do not interpret the group-level agreement between patients and proxies as evidence that proxies are reliable informants for individual treatment planning. While averages looked similar, over half of the patient-proxy pairs had completely different views on what the patient needed from their social network.