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"Something had to be done, so I did it"

In narrating why she felt the need to start Action For Autism in India (AFA), Merry Barua told Anne-Marie Prayas that “something had to be done, so I did it”. She narrates her experiences and developments as one of the first persons in the country to recognise the need for a national movement for the development of autistic children.

Picture of Merry Barua of the A.F.A.

What did you do prior to founding Action For Autism (AFA)?

Before starting Action For Autism, I spent a lot of time with my autistic son at home, teaching him and giving him all the care and attention he required for his development. I also worked part time as a free lance writer, editor and journalist in my spare time. Prior to AFA, I use to volunteer some of time working with children suffering from cerebral palsy.

Back in the early 1990s there was close to no awareness about autism, in the country. Due to the lack of knowledge, no one had stepped forward and taken the initiative to serve these children. Something had to be done so I did it.

You founded AFA back in 1991. What was it like, when autism was not generally recognised or understood?

It was not easy and I felt the need to start from scratch, by sensitising people and creating awareness. I did everything I could to disseminate information about autism, from distributing posters and pamphlets to creating support groups with parents of autistic children. I spent my time counselling these families and creating network groups around the country with interested parents. It was a slow but steady start.

What would you say was the turning point in the organisation’s history? When did you feel that AFA was proving its worth?

1994 was the year when AFA took a drastic turn for the better. We launched our journal Autism Network (it’s still in circulation) in that year. That was the first time when I started working with other autistic children, apart from my son. Autism strikes each individual with varying results. Hence it was a challenge to start a school where I would be working with different children at different ages. No one taught me how to manage. I trained myself and later passed on the knowledge to others.

Two years later we launched our first training workshop for parents and professionals. Their keenness to learn was very encouraging and motivating for us as an organisation.

What does AFA do on a practical level for autistic children and their families?

The main aim of AFA is to create awareness among the general population, educationalists, mainstream professionals, policy makers and medical staff, thereby removing taboos surrounding autism. We have a library stocked with various books on autism, which is the only one of its kind in the country. Our journal Autism Network is being circulated around the country for the benefit of several families.

We run various programmes for schooling autistic children at different levels of their development. Parents are an essential part of these programmes as they learn the art of interaction and are able to put it to practice at home as well. We have started early intervention programmes where we take in children from as young as two years of age. It is never too early to work on the development of a child. We also have a vocational training centre for teenagers where they learn skills which could help them contribute to society.

We look after the medical aspects of the child’s development by doing routine diagnosis and functional assessments. We have trained psychologists and psychiatrists for this purpose. These medical professionals also devote a lot of their time to research about the character of this disability.

As awareness about autism is growing round the country, the demand for training workshops has increased. We travel around the country, and even cross the border to Bangladesh and Pakistan, holding Teacher-Training programmes for parents and professionals. Since last year our programmes have been officially recognised with the RCI. Several other organisations have mushroomed in India, using AFA as their model.

We network with these organisations and facilitate parents with information about them. Lastly, we lobby with the government and other policy makers to increase sensitivity and make policy changes.

What is the government’s attitude to autism? Has it changed noticeably during AFA’s lifetime?

Initially the government was ignorant and unconcerned, but not any more. There is a huge change in its attitude and ignorance has been replaced with a keenness to learn and a willingness to listen. This year we received our first grant from the government. Though small, it’s a promising start.

What is AFA’s biggest achievement to date?

Our biggest achievement, today, is that we have managed to bring autism to the forefront of national consciousness. The biggest marker of this development is that autism is now included in the National Trust. The subject is no longer met with ignorance but instead, it’s treated with sensitivity.

AFA depends on volunteers for many of its projects. How do you maintain the high level of support?

We are a very “happy organisation!” Volunteers who work with us do not have to be pushed to get involved. They get involved themselves. The atmosphere is so lively and energetic that the volunteers can’t help being an active part of it. This contributes to the positive development of the children. The atmosphere even impacts parents. 90% of the parents who come here end up with a positive attitude.

How many members do you have at the moment? How many children benefit on a day-to-day basis from your Open Education programme?

We have various kinds of members. There are 500-600 general members, 50-100 life memberships and about 250 associate or affiliate members. On an average we have about 50 children coming in every day but we want this number to grow once we shift our centre.

Where do you find your funding?

We have a lot of individual donations and some organisational funding as well. Organisations include the Danish Autism Society, Ministry of Social Health and Environment, Ireland Aid and a few others. The National Trust donates specifically towards the Teacher-Training programmes.

In addition, we charge parents a nominal income-based fee, for medical diagnosis.

You have just celebrated the laying of the foundation stone of AFA’s national Centre in Delhi. What does this development mean to you?

This development is extremely exciting and satisfying. For the very first time in the history of our organisation we would be able to give our beneficiaries exactly what they need. We can stop making do with limited resources.

You are still fundraising for the construction of the centre. How much is still to be found? How do you propose to make up the shortfall?

We still need Rs 1 crore for the construction. Even though it is a huge amount, I strongly believe that funds will come in. It will not be easy but I have strong faith that it’ll happen anyhow.

If you could see ahead to five year’s time, what would you hope to achieve by then?

We have a lot of plans for expanding AFA. We want to work towards a specialised vocational centre for autistic teenagers and adults, so they can feel a part of mainstream society. We also want to build a residential unit for these children so they can learn to look after themselves and live independently. I want to bring AFA to a level of professionalism where it could work as a model for similar organisations around the country.