A space of their own

My son was born different. He is 23 now. About 20 years back, there was practically nothing to help children like him who were diagnosed with autism spectrum disorder.

When our doctor told us that my son may be having autism, I was confused. We were educated parents but had never heard of the term. Those were difficult days. I didn’t know what to do. For 10 years, I went around in circles. The special school he went to did not mete out his specific requirements as it also catered to kids with all kinds of disabilities. Finally, I decided to go for self-help. We started the Autism Society of India. It helped us vent out our problems. We also got experts to talk about it and I found solace in it. In 2009, I set up the Assisted Living For Autistic Adults (ALFAA).”

The experiences of Ruby Singh, founder, Assisted Living for Autistic Children, is no different from mothers of similar children. As another ‘Autism Awareness Day’ approaches, some of these mothers and special educators, while sharing their experiences, talk about the need for better awareness among the parents and the society.  

“Early intervention is extremely critical, but even today, this is missing,” says Vanitha S Rao, founder of Sunshine Centre for Autism. “There are a lot of cases which come in pretty late. And by pretty late, I mean, when the child is four years old. As I specialise in early intervention, I can say that when I get a child at 18 months, there is a lot of difference. Eight out of 10 children can perform pretty well at school when they are brought for intervention at that age.”

“I would also say that it is important for all paediatricians to be sensitive in early recognition. Many a time, a parent may raise a doubt about the child’s abilities, but the paediatrician asks them to wait. As it applies for all, society needs to be more accepting of the children,” she adds.

Bengalureans are not unfamiliar with Snehalatha Rajan, a life of exceptional courage. She raised her two sons Roshan and Ritvik who were not just differently-abled but visually impaired too. Not one to let anything down, she made them carve a niche for themselves. Their musical prowess made them a delight on stage. Although Roshan passed on sometime back, he had achieved more than one could think of. Ritvik was born with severe motor function and speech disability. In spite of that, he communicated with the world through his musical skills, earned the honour of a ‘visharad’ in Hindustani classical music and is now a music teacher with DPS.

Ask Snehalatha what keeps her going and she says, ‘“I don’t give up easily. I believe in neither looking ahead nor looking behind. Ritvik takes music classes at home. Whatever he earns online, he puts it into his education. My concern is what would happen to him when I am not there? My aim is to make him independent, to improve his communication skills so that he can help himself. It would be helpful if someone would teach him functional mathematics for basic life sustenance. But the question remains — where to knock? But I have to keep going,” she says.   

The renowned autism expert Dr O Ivar Lovaas’s words, said decades ago, stand true now more than ever — “If they can’t learn the way we teach, we teach the way they learn.”

Although the society has come a long way in accepting the differently-abled, myths and stereotyping still remains. “What we do at ALFAA is to keep the children engaged. It’s important that a child with autism spectrum disorder be taken out of their comfort zone and away from their parents for some time. They become violent only because they do not know any other way to communicate. It is important to keep them engaged and let them be in their peer group,” adds Ruby.