ARTI: The Autism Research & Training Initiative in India
The goals of the ARTI project are: 1) to develop and evaluate a case-detection methodology for the identification of autism spectrum disorders (ASD) for use with children aged 4 to 7 years; 2) to use this method to estimate the prevalence, determinants and needs of families affected by ASD; and 3) based on these findings to generate a model for a community based intervention for ASD which can be tested in future research. These goals will be achieved in two phases over three years. Phase 1 will take place during the first year will include translation and adaptation of the Ten Questions (TQ), Social Communications Questionnaire (SCQ), and Autism Diagnostic Observation Schedule (ADOS) screening and diagnostic instruments. The instruments will be translated into the local languages of Konkani and Marathi and will be validated to ensure cultural sensitivity. Phase 2, which will take place over years 2 and 3, will focus on using these instruments in conducting a pilot epidemiology study to estimate the prevalence of ASD. The project will be conducted in the state of Goa, on the west coast of India, and will be implemented by Sangath, one of India's leading child development and mental health research NGOs. Sangath and the Goan investigators will utilize its strong collaborations with the Ministry of Education and the Ministry of Health, as well as work in partnership with a team of national and international collaborators, drawn from a range of disciplines and sectors including academics, child development practitioners, policy makers and parent groups. Not only will the current study lead to a better understanding of the scale of the autism problem in India, which can inform government and lead to policy reform, it will help establish the necessary research capacity to develop future epidemiology studies in this region. Additionally, using standardized epidemiologic methods may allow for cross-country comparisons of autism prevalence; an approach that is not currently possible. The study findings will also be used to advocate for "scaling up" community based intervention for children with ASD in India, which may serve as a model for building service capacity in other low and middle income countries around the world.