Autism, a complex neurobehavioral disorder that includes impairments in social interaction and developmental language and communication skills combined with rigid repetitive behaviors has been a serious challenge to our society. The disorder covers a large spectrum of symptoms, lack of skills and levels of impairment. More than 10 million children in India suffer from autism. In the absence of national studies, the estimated rate for autism in India so far varied between an impressionistic 1 in 500 and 1 in 150. In the US this figure stands at 1 in 68. 1 to 1.5% or 1 in 66 children between ages of 2 and 9 are affected in India. And so much so, the survey was conducted only on 4,000 households in India.
Children with autism are different. They have limitations; they live in a world of their own. They avoid eye contact because they feel safe in doing so, whereas eye contact is a prime necessity to communicate. Children on the spectrum also have varying degrees of sensory processing problems. These range from over or under sensitivities, distorted or fragmented sensations, poor integration of all the senses and sensory modulation issues.
They think, they react, they are emotional as well as sentimental but they somewhere lack in communicating with us, or rather we cannot communicate with them. They understand each other’s language in their own way.
They are believed to be rigid and cannot accept changes; to them nothing is grey – the world is either black or white.
Dr Amrita Roychowdhury, after spending years in clinical practicing including in neurodevelopment clinics felt of doing something for these children in an organized way. She along with her father found the ‘Transcendent Knowledge Scoiety’ in the year 2015 with an aim to provide a holistic curriculum in a customized way for children suffering from autism. They stress on the overall development of the child and believe that education is not confined only in books but lies in exploring the real world. They take care that a child is aware of the valued social roles and grow as a distinct individual.
Here they nurture the children’s natural ability through various activities and let explore various materials that we use in our daily life. Along with occupational therapy they let the child explore different materials through sensory play. The curriculum also includes lot of functional learning like activities of daily living; starting from toilet training to lacing shoes, everything is being guided and taken care of with an objective to make them independent. They face lot of trouble in stabilizing in a single place and concentrating in their work. This is overcome through yoga, meditation, creative movement, music, group activities and lots of games.
Dr. Amrita says “We try to create a safe environment for them where they feel secured and can spend time as a distinct individual. Here we focus on a child’s ability than their inability”. She adds, “We humans have lot of faults and we do several mistakes daily. The difference lies in us camouflaging it and them not. They are very honest and true to themselves; they don’t think about the consequences or don’t understand how others will react to the circumstances”.
In India there has been a stigma attached to disability— shame, embarrassment, concerns about inadequate parenting— perceptions that are shared by many countries worldwide. The stigma forces the families to hide their strange children from the world. Since they are hidden, they don’t exist, that's the myth and acts barrier to awareness. It isolates families, creating a cycle of ignorance and superstition. In recent years the stigma has reduced and there is greater acceptance.
Apart from this social ignorance, autism is also not currently recognised as a separate disability under the main piece of legislation that provides benefits to persons with disability in India. However, as late as in 2011 it was recognized as one of the disabilities under another act read with the main legislative act. But no certification process had been laid down in the act and hence no certificates were being issued so far for the autistic people to enjoy the benefits. However in April 2016, after a long 15 years the government has notified guidelines of issuing the certificates, which are yet to be in place and would take some more time.
Still the autism movement in India has come a long way in the past two decades; identification and diagnoses are made at earlier ages, there are more services that cater to the needs of individuals with autism, there are also some changes in the awareness levels in the general population. But there is still a lot of work to be done. However, if people with autism are to have an opportunity to reach their maximum potential and have dignified futures, the community of parents, siblings, other relatives, and professionals will have to continue to work together as a team and advocate for the rights of this often marginalized and vulnerable sector.
Facts, Numbers, Words Courtesy: Transcendent Knowledge Society, National Centre for Autism India, Economic Times, India Today