“I was worried when my son Anujit could not call me ‘Mamma' even after two-and-a-half years. We were in Noida then and paediatricians told us not to worry as some children start speaking late. But when his kindergarten teachers told us he could not settle down or mingle with other children, we realised something was wrong,” recalled Ruby Singh, wife of an Army officer.
Anujit was later diagnosed with autism, a developmental disorder that affects the brain in the areas of language and social skills, imagination and activity. People with autism avoid eye contact, have difficulty in expressing needs, will start to speak well and then completely forget language or repeat an activity many times over.
Typically, autism appears in the first three years of birth. People with autism have no particular “look” or behaviour, making early diagnosis impossible without awareness.
Ms. Singh, who is experienced in handling autistic children, has started a trust for adult autistics called Assisted Living for Autistic Adults (ALFAA). “We caregivers can take care of our children till we are alive. What will happen to them after our death? Every autistic child is different and needs individual attention,” Ms. Singh told The Hindu on the eve of World Autism Awareness Day observed on April 2.
“Children with autism have difficulties in communicating; this is not just the use of speech but also other forms of communication, including body language. They also have major deficits relating to people around them. They have poor learning skills and require specialised learning settings. They learn better in individual training. This makes cost of education very high,” said Jayashree Ramesh, who runs the Academy for Severe Handicaps and Autism (ASHA).
There is no known cure for autism, but early intervention and identification are considered the most important factors influencing the long-term outcome in children with developmental disabilities, she said.
Pointing out that the Government of India has failed to recognise it as a disorder, both Ms. Singh and Ms. Ramesh said it was unfortunate that even the recently concluded Census of India had not considered it.
“Now that the Union Ministry of Social Justice and Empowerment is working on a new law that will include autism as one of the disabilities, we hope to see a change for the better,” they added.