Back in the 80s in India, if you uttered the word autism, you were most likely to be met by a confused stare. No one knew much about the condition, let alone understand it. And then the movie ‘Rain Man’ released with Dustin Hoffman’s epic performance of a man suffering from autism, and this word entered at least popular vocabulary in India too.
Grabbing that opportunity, one woman, Merry Barua, went around video libraries in New Delhi, pasting information about autism on all available video cassettes of the movie, in the hopes of raising more awareness about the condition.
What started as one woman’s passionate battle to increase people’s knowledge of autism, something that affected her own son, has today become a national movement. This erstwhile journalist, from writing, speaking to educating others about it, also started her organization ‘Action for Autsim’ in 1991 to build systemic support for not just the children affected, but even parents and educators to help them understand and provide the right kind of support systems. She also started Open Door, the first school in the Indian subcontinent exclusively for autistic children.
1 in 89 children are diagnosed with Autism Spectrum Disorder in India. Extrapolate that to 2.2 million children and about 13 million people live with that condition, as per reports. A developmental disorder that affects communication, detected early, the condition can be managed with age-appropriate learning systems and supports.
In 1996, lobbying hard, Ashoka Fellow Merry Barua, led a delegation of parents of autistic children from throughout India to speak out for inclusion of autism in the National Disability Bill. The Ministry of Welfare recognized the disability, and in 1998 India’s Prime Minister declared that the government wants to expedite the passing of “the National Trust Bill for mental retardation, cerebral palsy, and autism.” In 2006, Autism was finally included in India’s Disability Act (now the Rights of Persons with Disabilities Act, 2016), inaugurating a much needed conversation around state support for this condition that affects so many.
Such victories and the growth of the movement, to setting up the National Centre for Autism, has hardly been an easy journey for Merry.
But it is all credit to her indomitable spirit, as a mother and a changemaker, that today, thousands of children affected by the condition are able to lead much better lives because of the work she and her organization have put in. Not to mention the countless thankful parents, for whom Merry’s support has meant greater acceptance and understanding of their child, and hope for better lives for their families, breaking the stigma around the condition.
Merry Barua is an Ashoka Fellow and part of a network of leading social entrepreneurs bringing transformative change in society. To know more about Ashoka, head here.