Implementing and evaluating Social Attention and Communication Surveillance (SACS) to prospectively identify autism in very young children in Nepal.

Abstract Background Although Autism Spectrum Disorder (ASD) can be identified as early as 12 months and diagnosed by 24 months, the mean age of diagnosis of ASD in Nepal is ∼58 months, with children missing the opportunity for early intervention. Aims This study implemented and evaluated a Nepali version of the Social Attention and Communication Surveillance (SACS-N) tool, to identify children between 11–30 months who are at “high likelihood” of ASD in a local community in Nepal. Methods Sixty Female Community Health Volunteers (FCHVs) were trained to monitor and identify the early signs of ASD using SACS-N. Results Overall, 1926 children were monitored with the SACS-N, with 11 children (0.57 %) referred for further assessments at 11–15 months (n = 4), 16–21 months (n = 4), and 22–30 months (n = 3). Of these children, 10 children had a developmental disorder, including ASD and Global Developmental Delay; no information was available on one child who migrated. Hence, the positive predictive value (PPV) of SACS-N for all developmental disorders was 100 %. Of seven children attending a gold standard diagnostic/ developmental assessment, three had ASD (43 % PPV for ASD). The estimated prevalence of ASD ranged between 0.16 % to 0.26 %. Conclusion Community-based developmental monitoring of ASD and other developmental delays by FCHVs is a feasible, cost-effective and sustainable approach to promoting early identification of ASD in Nepal. Further training and awareness of autism is needed for more accurate and increased referral rates using the SACS-N, including regular supervision of FCHVs.