"We had to search the internet and ask people how to help our child to have a normal life at school. There were no rules in place that the school was aware of. Finding out about the child's rights and to help him have a normal day at school smooth has not been easy," said the mother of an eight-year-old autistic boy who fought a long battle with Jamnabai Narsee School, Juhu, so he could get a shadow teacher.
On Tuesday, the parents of autistic kids announced a charter defining the rights of these children and their guardians that should help these families.
'The Prevention of Human Rights Violations in a Learning Environment for Children with Autism Spectrum Disorder' underlines the basic services required to be provided by institutes or professionals serving families that have cases of autism spectrum disorder (ASD).
Merry Barua, founder director, Action for Autism, a Delhi-based association, said: "The charter is born out of a crying need to protect the dignity and self-respect of children who are often at the receiving end of punitive and restrictive measures under the guise of education/therapy. As there is no legal and binding code of ethics in India, parents find themselves helpless and crushed in the face of such malpractices."
Barua said the points in the charter were open for discussion by parents, professionals and lawmakers.
"It is a first step towards a code of ethics, which is now mandatory for India after the ratification of the United Nations Convention for the Rights of Persons with Disabilities in 2007," said Chitra Iyer, trustee, Forum for Autism, a Mumbai-based association.
Iyer informed that the charter can be accessed at www.forumforautism.org. "We will hold workshops on this and invite suggestions," Iyer said.
Mumbai, Thane and Navi Mumbai alone have around 2.3 million persons with ASD. However, the facilities available are very few.
Experts say that in spite of concessions granted by the education boards, Mumbai schools were ill-equipped to deal with autistic children. "It is important that schools only employ special educators and sensitize teachers to make the environment conducive for students with autism. Schools can use the buddy system or visual timetables and instructions to enable them to interact better," said Aysel Engineer, a special educator with a school in Khar.
The charter is born out of a crying need to protect the dignity and self-respect of children who are often at the receiving end of punitive and restrictive measures under the guise of education/therapy.
—Merry Barua, founder director, Action for Autism