Caregivers' expectations of their non-verbal autistic children in rural KwaZulu-Natal.
Fatima Haffejee, Jennifer A H Pahl, Saira B Karrim
PMID 39354795WHAT IT FOUND
Caregivers of non-verbal autistic children in rural KwaZulu-Natal expected communication, education and support, but inadequate explanation of diagnosis, language barriers and unclear therapy purpose shaped those expectations.
Key findings
01Caregivers' understanding of autism was shaped by diagnosis information and language, with non-English speakers reporting poorer understanding.
02Communication expectations varied, including verbal speech, functional communication and attainable goals such as following simple instructions.
03Three caregivers did not understand the purpose of therapy or the difference between speech and occupational therapy, and expectations were shaped by how information was shared.
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
Eleven caregivers from five districts were interviewed, so this is a small purposive sample and not generalisable to all rural families. The study reports expectations and experiences, not measured child outcomes, so it cannot show whether speech-language therapy, occupational therapy or counselling works. Caregivers were identified through speech-language therapists at public hospitals, so families who did not access services or were not referred were not included. The paper's suggestions for counselling and resources are implications, not tested interventions.
The easy way to misread this
Do not read these themes as evidence that speech-language therapy, occupational therapy or counselling improves outcomes. The study reports caregivers' expectations and experiences, not measured effects.