Treated as a disease, autism is yet to be understood by society, parents of autistic children said.
“The ignorance level about autism is very high in India. Autism is treated as a social stigma. Taking children to parks has become difficult for parents as people stare at your kids. As parents of autistic children, we do not discuss the disorder to anybody else other than our immediate family (members),” said Bhaskar Kumar, a parent.
“It is not easy for parents to talk about autism to their colleagues or to people as it is misunderstood as mental retardation. The level of awareness about Autism Spectrum Disorder (ASD) in India is very poor,” Bhaskar added.
However, at the Centre for Brain Development and Repair (CBDR) situated on the campus of National Centre for Biological Sciences (NCBS), Bangalore, extensive research is being done on ASD and dementia.
The University of Edinburgh and the Institute of Stem Cell Biology and Regenerative Medicine (inStem), Bangalore, have started the CBDR to study disabilities that arise from alterations in brain development.
Dr Shona Chattarji, professor of Neurobiology, NCBS, and director of the CBDR, said, “The initial objectives are to get human stem cell platform ready and to generate patient-derived cells. It is also important to have required manpower at the CBDR to work with the human cell platform and the stem cell tissue derived from Indian patients,” he said.
The professor said parents deny that their children have autism and still consider it as a taboo. Talking about the numbers, he said, “A systematic study on the number of autism patients in India is missing. As per a study, in the USA one person in 120 has ASD.”
Lambodar Ray, secretary, Autism Society of India (ASI), said, “Acceptance of autism as a disorder is absent and parents refuse to accept that their children have ASD largely due to social fear. There is a lack of awareness about ASD, which is an intellectual disorder.”
“Early intervention and right kind of therapy may help children grow in a rather normal way. The need of the hour is training institutes either funded by the government or private agencies to equip autistic children with suitable skills. Extensive awareness campaigns about ASD and parents’ cooperation in early intervention are needed,” added Ray.