Toddlers at risk for Autism Spectrum Disorders from Kerala, India – A community based screening

Highlights

• Study reports toddlers at risk for Autism Spectrum Disorders in Kerala, India.

• Culturally adapted Modified Checklist for Autism in Toddlers–Revised (MCHAT-R) used.

• 5.5% toddlers were at risk on M-CHAT-R.

• 2.7% toddlers on shortened 7-question M-CHAT R (“Best Seven”).

• M-CHAT-R and its “Best Seven” could be a viable screening instruments.

Abstract

Aims

To study the at-risk rate for Autism Spectrum Disorders (ASD) on a parent-report questionnaire in toddlers between the ages of 16–24 months.

Materials and methods

6237 toddlers from Kerala, India selected by cluster random sampling were surveyed by community nurses using the Modified Checklist for Autism in Toddlers − Revised (M-CHAT-R) translated to Malayalam and culturally adapted.

Results

5.5% toddlers were at risk on M-CHAT-R and 2.7% on “Best Seven”.

Conclusions

M-CHAT-R and its “Best Seven” could be viable community level screening instruments, albeit with further cultural adaptation for a primarily non-English speaking population in India.

Introduction

India has made rapid strides in health care in the last two decades with decline in childhood mortality (Rajaratnam et al., 2010). The focus has now shifted to issues of childhood morbidity including ways to reliably identify and provide early intervention for neurodevelopmental disorders (Maulik and Darmstadt, 2007; Dawson, 2008). Screening for neurodevelopmental disorders will help in early identification and intervention which will reduce disability and improve outcomes (Dawson, 2008; Mukherjee et al., 2014).

Autism Spectrum Disorder (ASD) is one such neurodevelopmental disorder with estimated worldwide prevalence of 6.2/1000 (Elsabbagh et al., 2012) associated with significant morbidity that needs better awareness, screening and surveillance. This is especially so in low and middle-income countries which has scarce mental health resources. There are very few prevalence studies on ASD in India, especially among toddlers. The reasons include absence of appropriate and culturally validated screening instruments in toddlers; lack of awareness; lack of trained human resources; and, stigma associated with the diagnosis (Mukherjee et al., 2015; Daley, 2004). These reasons may also explain the low prevalence rate of ASD of 0.9/1000 reported in a community study done in northern India in children between the ages of 1–10 years (Raina et al., 2015). In high income countries, there are a number of tools that are routinely used for screening children for ASD (Council on Children with Disabilities et al., 2006) and the Modified Checklist for Autism in Toddlers Revised (M-CHAT-R) is one such screening tool which good specificity and sensitivity (Robins et al., 2009). An indigenous tool called the Indian Scale for Assessment of Autism (ISAA) (Ministry of Social Justice and Empowerment, 2009) is available but has limited accuracy in younger age groups especially toddlers and therefore was not used in this study (Deshpande et al., 2015; Mukherjee et al., 2015).

To date, there are no community surveys from India which have assessed the prevalence of the risk for ASD using age-appropriately validated tools among toddlers. It is in this background that the study was executed using community health nurses to identify children at risk for ASD using the M-CHAT-R. The findings reported in this study are part findings of a larger survey which assessed health and wellness of mothers and children in the State of Kerala, India.