Autism spectrum disorder in India: a scoping review

Abstract

Autism is a grand challenge in global mental health to be dealt with on a priority basis. Phenotypic knowledge, biological understanding, and evidence-based intervention studies are all from western countries. We know very little about autism in the low- and middle-income countries (LMIC). Lack of infrastructure and difficulties in operationalizing research has widened the knowledge gap. We performed a comprehensive scoping review of research in Autism Spectrum Disorder in India to have an overall impression, identify gaps, and formulate evidence-based recommendations for further study. We searched PubMed, SCOPUS, and Cochrane Library to identify relevant Indian studies. A hundred and fifty-nine publications met the inclusion criteria. Most of the research contribution in autism is from few tertiary care medical centres, technological institutes, and not-for-profit organizations. We identified various themes of research like clinical profile, interventions, biomarkers, psychological, social, epidemiological, and risk factors. Evidence-based intervention studies, translation and adaptation of standard diagnostic instruments, and qualitative research on the experience of autism appeared to be state of the art. However, epidemiological studies, biomarkers identification, risk assessment studies were of low quality. There is a need for nationwide studies with representative sampling on epidemiology, biomarkers, and risk factors for a complete evaluation of the actual burden and biology of autism in India. Also, there is a need to design implementation research to evaluate the effectiveness of evidence-based interventions in routine healthcare settings. We recommend that future research should fill these gaps in understanding autism and improving its outcome in India.