Changes in Knowledge on the Early Signs of Autism Among Female Community Health Volunteers in Nepal

Background: Early identification and diagnosis of autism opens pathways to early intervention (EI) services, known to have positive developmental outcomes. Yet, children in low- and middle-income countries (LMICs) are diagnosed much later, missing the critical window for EI. A major barrier to early identification and diagnosis is a lack of knowledge of the early signs of autism amongst parents and professionals, coupled with a lack of early screening and surveillance programs and tools, as well as an inadequate number of trained health professionals. However, raising awareness in local communities through cost-effective training, and task shifting to community health workers, has been widely advocated to promote early identification of autism and other developmental problems in LMICs.

Objectives: Our objective was to evaluate knowledge regarding social attention and communication development and the early signs of autism among Female Health Community Volunteers (FCHVs), in a semi-urban community of Nepal, prior to and following training on Social Attention and Communication Surveillance (SACS). An evaluation of training on their day-to-day practice with families within their homes was undertaken.

Methods: 60 FCHVs (Mean age: 44.6 years; range 29.0-61.5), 82% having at least 6-years education and 73% with >10 years work experience, attended a workshop on typical and atypical social attention and communication development in young children, the early signs of autism, and the monitoring of key behaviours relevant to identification of autism in infants and toddlers. This was part of an implementation of SACS-Nepal into the daily practice of FCHVs in the Kirtipur Municipality. They completed a survey to assess their knowledge before and after the workshop. They also evaluated the training immediately after the workshop and 6 months after commencement of implementation of SACS-N. Change in FCHVs’ confidence in monitoring and referring children at risk of autism was examined.

Results: The majority of participants were aware of social attention and communication development prior to training, with the exception of items: ‘eye contact’, ‘gesture use’, ‘imitation’, ‘pretend play’, and ‘using words’; only 37% reported knowing the word “autism”. Following training, they demonstrated significant improvement in their knowledge across all relevant behavioural items, including autism symptoms and its prevalence, diagnosis, and intervention. More than 96% reported greater confidence in monitoring and referring young children developing autism.

95% of FCHVs reported a positive impact of training on their work at 6 months, and rated the ease of implementation of SACS-N into their current practice; 73.3% agreed that parents were comfortable with the SACS-N being undertaken in their homes. Among those FCHVs who referred children for a developmental assessment, 98% reported that parents found it beneficial to participate in the SACS-N.

Conclusions: The findings indicate the effectiveness of training in improving FCHV’s knowledge and confidence in monitoring and referring young children at risk of autism. These findings have important implications for lowering the age of diagnosis in low-resource settings by developing cost-effective services to monitor, identify and refer children at risk of autism early within the community as part of standard practice with families.