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An Exploratory Study on the Epidemiology of Autism Spectrum Disorder in Nepal
Background: Early markers of Autism Spectrum Disorder (ASD) are present within the first 2 years of life making diagnoses possible by 24 months. Early diagnosis enables access to early intervention, known to promote better developmental outcomes in young children. However, there is limited research regarding the age of diagnosis (AoD) of ASD in low and middle-income countries (LMIC). Moreover, lack of awareness, cultural differences in interpreting ASD symptoms, delayed or alternative modes of help-seeking behaviours, limited access to intervention services and stigma associated with the disorder have led to delayed diagnosis of ASD in LMIC.
Objectives: The average AoD of ASD between 2010 and 2015 in Nepal was examined for males and females. The frequency of children diagnosed with ASD was also studied according to ethnicity, ecological zones, and districts. Finally, any change in AoD across the 6 years of sampling was examined.
Methods: De-identified data of 246 children registered at AutismCare Nepal Society (ACNS) from January 2010 to December 2015 and with a diagnosis of ASD as determined by paediatricians, child psychiatrists, and psychologists, were included in the study. The age of ASD diagnosis (in months) of children, gender, ethnicity and postcodes were extracted. Ethnic codes defined by Health Management Information System, Department of Health Services, Nepal were utilised to classify ethnicity. The postcodes were categorised into the types of ecological regions and districts according to Nepal Central Bureau of Statistics, 2011.
Results: The average AoD in children registered at ACNS between 2010 and 2015 in Nepal was 58 months ranging from 14 to 187 months. The ratio of a 1:3 Male (n-187): Females (n=59) diagnosed with ASD confirmed previous studies. There was no difference in AoD between males and females. The majority of the children (80 %, n=153) were from Upper caste groups. On the contrary, there were only 62 children from relatively advantaged group whereas 31 from a disadvantaged group. There was no significant statistical difference in AoD across three ethnic groups. But, Upper caste groups were diagnosed 7 months earlier than “Relatively Advantaged” and 17 months earlier than “Disadvantaged Group”. In addition, the hill region had the highest number of diagnosed children (n= 211) in contrast to Terai (n=33) and Mountain regions (n=2). In particular, 76 % of the children from the hill region were living in Kathmandu Valley. Finally, there was an increase in the number of children registered at ACNS between 2010 to 2015, with a decreasing trend in the AoD from 2013.
Conclusions: The findings show wide variability in the AoD of children with ASD in Nepal, with a decrease in diagnostic age over time. This decrease from 2013 coincides with the introduction of the DSM-5. The findings also illustrate a significant ethnic inequality and regional disparities in the number of children diagnosed with ASD. In conclusion, there is a great need to reduce the disparity in available services to promote early diagnosis of ASD across the population in Nepal.