Action for Autism marks 25 years, goal ahead is to focus on services for adults on the spectrum
Action for Autism, the organisation that pioneered the autism movement in India completes 25 years. Apart from improving the quality of life for people with autism and their families, the non-profit also works with the larger public and government to build awareness. Going ahead, it plans to focus on services for adults with autism.
The Gathered Leaves, a play that explores the dynamics in a family where one of the main characters has autism, will be staged to mark 25 years of Action for Autism (AFA).It's an apt choice for a non profit that is credited with putting autism on the map of India and enabling families with the right kind of support and interventions.
Started in 1991 as a parent support group, AFA's aim was to raise awareness about autism in India. Be it the Open Door school for children with autism, counselling services for parents, the widely circulated Autism Network periodical to launching India's first website for autism, AFA has been rightly credited with creating an environment that enables people with autism to reach their full potential.
More critically, AFA has also played a crucial role in developing training modules for teachers and students as well as lobbying with the government to ensure that autism gets recognised at the policy level.
Going ahead, says Merry Barua, Founder-Director, AFA, there's a plan to revise the goals.
For many years we have been doing multiple things, looking at all that we can do to make society inclusive for autism. Now, we are looking at what we can focus on in terms of services and we feel should be on adults. There is a lot happening for children with autism now. Education is becoming more inclusive for instance but in reality, employment is still very little. There are few people with autism who have got into employment. Many more are struggling. We need to focus on higher education, needs of adults, including people with high support needs. - Merry Barua, Founder-Director, Action for Autism
The strategy change was triggered in part by a study in the National Capital Region by AFA three years ago. The study looked at about 70 adults with autism in the region. Of the 70 studied, only one was in inclusive employment, a few were in sheltered workplaces, while the rest were home. "We could see that there's a terrible lacuna", adds Merry.
Since then, AFA has started working on employment and soft skills training. This has included talking to corporates. Going ahead, AFA plans to talk to colleges about the kind of support systems needed for young adults with autism. Indrani Basu, who runs the Parent-Family Training Programme, one of AFA's flagship initiatives, feels this is a gap that needs to be worked on. Indrani, who has been with the AFA for 12 years, has a 27-year-old son with autism.
"While the basic philosophy remains the same as an adult, employment, independent living, with minimal or high support, as well as support to parents who are older, educating employers and the community becomes critical", says Indrani, who finds an enormous gap between what is needed and what is provided. It is a gap that must be addressed. "Are we looking at a place where our children will be safe and be able to survive, or a future where they are living to the fullest potential which moves far beyond safety to one of inclusion?", she asks.
The three main focus areas, says Shubhangi Vaidya, parent to a 22-year-old with autism should be employment, social security and social inclusion. Shubhangi's son works at Aadhaar, a work skills centre run by AFA. "Many of our young adults have not been through formal schooling as the Right to Education Act came into effect only recently. The kind of opportunities we see today were not available to our kids", she points out. Their ability to negotiate with employers and peers is also affected.
Sujata Banerji, parent to a young adult with autism, is relieved to hear about AFA's future plans.
"The population of adults with autism is also increasing in India every year so we need a secure life for them after us. There are many adults who can functionally do routine work very well but have difficulty in communication, social skills, and following the subtle work behaviors in place at companies". She hopes AFA will continue to focus on not just training adults with autism but also their parents".