Special International Autism Epidemiology Project

Through interactions with the Fogarty International Center, the international component of the NIH that addresses global health challenges through innovative and collaborative research and training programs, Autism Speaks became aware of a developmental disability epidemiology project involving collaboration between researchers from India (Child Development Center, Thiruvananthapuram) and the United States (University of Pennsylvania). The researchers submitted a proposal to the Fogarty/NIH mid-2005 in response to a call for research in “brain disorders in the developing world.” Unfortunately, while the proposal was very well-reviewed, it was not funded due to NIH budgetary constraint.

Autism Speaks contacted the researchers and worked with them to modify their original proposal to further focus on autism spectrum disorders. Autism Speaks also negotiated with other funders, including the Indian National Trust/Ministry of Social Justice and Empowerment and the International Clinical Epidemiology Network, a Rockefeller Foundation founded not-for-profit network of clinical epidemiologists, health social scientists, biostatisticians, and clinical economists with two decades of experience addressing clinical epidemiological challenges around the world, to co-fund the effort.

The study is expected to yield the first national estimate of autism prevalence in India and lay the foundation for future autism research in that territory.

Child Development Center, Thiruvananthapuram, India
MKC Nair, MD, PhD

Co-Funders: Autism Speaks ($100,000/2 years), the Indian National Trust/ Ministry of Social Justice and Empowerment ($200,000/2 years) and International Clinical Epidemiology Network (INCLEN) ($201,962/2 years)

Neurodevelopmental Disabilities among children in India


Given current epidemiologic estimates, there are approximately 1.7 million individuals with autism in India. The primary objective of this research project is to assess the screening and diagnostic prevalence of neurodevelopmental disorders, including autism, in children between the ages of 2-9 in India and gain information on risk factors in these children. The investigators will develop a novel neurodevelopmental disability screening tool and consensus clinical criteria, and validate these instruments so that they can be used in as a diagnostic instrument for further evaluation of the prevalence of autism in this country. In addition to studying the prevalence of autism in Indian, the investigators will also identify the full clinical spectrum of autism using their test instruments. In addition to case ascertainment, potential risk factors for autism, including infections, nutritional deficiencies and genetic factors will be identified through open ended interviews with health personnel.

Significance: The absence of a screening tool for developmental disability in young children from developing countries has previously hindered autism research and services in these territories. As the first nation-wide epidemiology study in India focused on autism, this project could have significant impact on national research, health and education policies. The identification of an initial nation-wide developmental disability cohort would allow more refined characterization of the Indian autistic population, setting the stage for exploring future scientific opportunities in causes (more comprehensive epidemiology and genetic studies), diagnosis (Baby Sibs), and treatment (clinical trials) in that country. By generating valid data from India, capturing socio-cultural and geographical variability, researchers can better identify the true worldwide prevalence of autism and further quantify risk factors which may contribute to these differences.