JOIN USPeople with autism have said that the world, to them, is a mass of people, places and events which they struggle to make sense of, and which can cause them considerable anxiety. In particular, understanding and relating to other people and taking part in every day family and social life may be harder for them. Help is at hand for such people in Kolkata in the form of Indrani Basu, a mother of two boys.
Basu’s journey began in 1998 when her elder son was diagnosed with autism at the age of 14. Prior to the diagnosis, he was in a mainstream school but he suffered from stress and struggled to cope owing to his lack of social skills. The diagnosis at NIMHANS, Bangalore, led Basu to realise that her younger son could also be autistic as he exhibited similar traits. Her fears proved true when the four-year-old was labelled autistic.
Steeling herself
Basu, a teacher of English and Geography, was at a loss initially, but she steeled herself in the face of adversity and realised that she had to do something meaningful for her sons. Back then, most schools for autistic people in India were in a fledgling state and she tried hard to find someone who could explain to her the behavioural patterns and communication difficulties of autistic people. She saw light after attending a workshop organised by Merry Baruah of Action for Autism. Baruah provided the answers to her questions, prompting her to move to Delhi and re-train as a teacher of autistic people.
Basu returned to Kolkata in 2002-03 and started working for a well-known organisation devoted to the welfare of disabled people. She also started the Autism Society of West Bengal as a support group for parents of autistic children. However, the demand for more services for such people and the need to create a better understanding of this complex disorder forced her to quit her job and take on the autism society full time around five years ago.
Basu is honest with parents who come to her seeking replies to their problems. She does not keep them in the dark and believes that it is right to paint the correct picture. Whereas many special schools do not believe in involving parents in the classroom, most of the teachers in Basu’s school are the mothers of the wards themselves. They train in how to deal with autistic people and then come back to teach. Their job is not to let their wards slip into oblivion but to keep them associated with society. And although autism cannot be cured, with appropriate, consistent and timely intervention, significant progress can be made.
The learners, totalling around 40, engage in a host of activities to keep themselves busy. The most important thing the children learn is to communicate and they also pick up pre-vocational skills. Embroidery, stitching, clay modelling and weaving classes are held at the school. Basu hopes the learners, with some luck and empathy from others, will find work placements at NGOs and charity organisations. She is hopeful that with some support, some of them will find jobs in the open market while the rest will work in sheltered workshops.
Basu travels to neighbouring countries such as Bangladesh to provide therapy and hold workshops. She has recently been chosen to receive an award instituted in the USA — the Heartspring Award for Innovation and Creativity in Special Education. She is also trying to set up a daycare centre for learners in Kolkata between the ages of 12 and 18.
However, the project that is closest to Basu’s heart currently is a home that she wants to set up for the learners. It is not uncommon to find care homes and housing with support (also called Supported Living or Independent Living) in countries such as the UK. In a Supported Living situation, a person has his own home and support is put in place to help him live independently. This could mean that such persons are supported for a few hours a week, every day, overnight or 24 hours a day. The support is carefully planned to meet their needs to live independently. In India, sadly, such a concept is relatively unknown.
Basu is currently exploring the possibilities of setting up a residential home on the outskirts of Kolkata. She says she is extremely worried about what will happen to the learners when they grow older and lose their parents. She is desperately trying to gather funds so that the future of her vulnerable wards will be made secure.
Unfortunately, she has made no real headway and her project remains just a dream.