Legal Provisions, Educational Services and Health Care Across the Lifespan for Autism Spectrum Disorders in India.

India is estimated to have over 10 million persons with autism. Rising awareness of autism in India over last decade with ready access to information has led to an increase in prevalence and earlier diagnosis, the creation of services and some policy initiatives. However, there remains a gaping chasm between policy and implementation. The reach and quality of services continues sketchy and uneven, especially in the area of education. The present review discusses existing legal provisions for children and adults with autism in India. It also discusses Governmental efforts and lacunae in existing health care facilities and education services in India. While there are examples of good practice and stories of hope, strong policy initiatives have to support grassroots action to improve the condition of persons with autism in India.

Parenting a child with autism in India: narratives before and after a parent-child intervention program.

In many low and middle income countries where autism-related resources are scarce, interventions must rely on family and parents. A 3-month Parent-Child Training Program (PCTP) at Action For Autism, New Delhi, India is aimed at empowering and educating parents, encouraging acceptance of their child, and decreasing parent stress. Forty couples were asked to describe their child with autism using the Five Minute Speech Sample (FMSS), an open-ended narrative method, before and after the program. Parents described a wide range of child behaviors, primarily social and cognitive skills. While all families were of a relatively affluent strata compared to the general Indian population, there were nonetheless significant differences in parents' narratives based on their income levels. Coming into the program, parents with relatively less income focused on their child's immediate and material needs, while higher income parents discussed their parental roles and vision for society. After the PCTP, parents were more likely to reflect on their child beyond comparisons to 'normality,' and beyond the here-and-now. Mothers were more likely than fathers to reflect on themselves and their relationships with their child. Understanding parents' experiences and narratives is essential for the evaluation of interventions such as the PCTP, as Indian parents are incorporated into a growing global network of 'parents of children with autism.'

Translation and usability of autism screening and diagnostic tools for autism spectrum conditions in India.

There is a critical need for screening and diagnostic tools (SDT) for autism spectrum conditions (ASC) in regional languages in South Asia. To address this, we translated four widely used SDT (Social Communication Disorder Checklist, Autism Spectrum Quotient, Social Communication Questionnaire, and Autism Diagnostic Observation Schedule) into Bengali and Hindi, two main regional languages (~ 360 million speakers), and tested their usability in children with and without ASC. We found a significant difference in scores between children with ASC (n = 45 in Bengali, n = 40 in Hindi) and typically developing children (n = 43 in Bengali, n = 42 in Hindi) on all SDTs. These results demonstrate that these SDTs are usable in South Asia, and constitute an important resource for epidemiology research and clinical diagnosis in the region.