Dr A K Kundra first learnt about autism in 1984, when he was teaching English in Andhra Pradesh’s Bolarum district. The teaching staff here had identified one child to be “different”.
At first, Dr Kundra assumed that the child in question was behaving differently on purpose to escape studies, but when his behaviour did not change, he figured it had something to do with a learning disability.
When he travelled to London a few months later, he learnt more about the disorder and set up an entity inside the school in Bolarum district for children with autism.
That was Dr Kundra’s first initiative for the autistic community. Since then, he has contributed tremendously towards their welfare, including opening an Autism Ashram (shelter home) in Hyderabad in 2012.
His latest project, The Autism Guardian Village (AGV), was opened in 2020 and is a one-of-a-kind residential space in India designed exclusively for persons with autism and their families.
Spread across 10 acres of land, the space has 84 cottages and hundreds of trees, a community hall, a dining area, a hospital, and a cafe. Of the total cottages in the gated community, 35 are occupied, and the remaining are fully booked.
The Better India speaks to Dr Kundra and Mona Rai, one of the occupants, about the importance of having an exclusive autism-friendly environment and how this affects mental wellbeing.
The idea of establishing a village came to Dr Kundra when several parents confessed that they were not ready to part ways with their kids or family members, but at the same time, wanted a safe space for them.
“Shelter homes abroad have wide spaces where they dedicate one acre for five children. I did not want to compromise on land, so I first purchased a huge portion with my personal savings. After getting the necessary permissions, I got 5-year-old trees of amla, mangoes, neem, and more to set up the greenery, which helps keep the mind calm. Each cottage is priced at a rate of Rs 35,00,000,” says Kundra.
The 2-BHK houses have fewer walls so as to allow free movement. Dr Kundra says that as people with autism tend to eat more, the kitchen has doors that can be kept locked.
“Persons with autism can become obese easily if they don’t exercise, and with obesity comes other lifestyle-related disorders. So we have been extremely mindful of their physiological and psychological needs. They love swings, so we have installed them on the porches,” adds Dr Kundra.
The entire space is vehicle-free for people to move around freely without the risk of accidents. Dr Kundra notes that people with autism are often fascinated by cars, so if one is kept outside the house, they tend to bang on it.
The care and maintenance of this village is done by Dr Kundra’s management team, comprising professionals and experts. They carry out group activities in the community hall daily — these include vocational training, music, reading and so on.
Each activity is designed to support the child and adult. For example, they often conduct drumming sessions to relieve anxieties and stress. It is like a neurological workout with
visual, auditory and motor cortices at work, Dr Kundra says.
There is also a general store inside the complex, where three young adults are employed. Delivering essentials to cottages is another effective socialising tool, says Dr Kundra.
The campus has a basketball court, table tennis, mini golf course and billiards as well.
From two-and-a-half-year-olds to 42-year-olds, there are people with autism people from every age bracket, which proves beneficial for the parents. The youngest mother is now able to learn everything from other parents and raise her child better.
The families can live in the village for as long as they wish, and when a parent is longer there, the management will send a caregiver to the cottage.
‘It’s like a big family’
Tanmay was two-years-old when he was diagnosed with autism. Initially, his parents Mona and Bhanu were in denial. They assumed he would catch up eventually in a playgroup with the other kids.
Lack of awareness and educational material on how to raise a child with autism were their biggest concerns. The parents put in earnest efforts to get therapists and educators who would address challenges like social interaction, learning disability, emotional understanding and so on.
“Our world ad collapsed and suddenly we were running all around Noida to get experts. Lack of sensitivity, insufficient infrastructure and apathetic medical attention forced me to quit my job. The days were a mix of highs and lows. We became hands-on parents to raise our little boy in a safe environment. We worked hard to be able to afford everything,” says Mona, who was the first parent to book a cottage.
Bhanu passed away last year and Mona shifted to the complex in November 2020.
“Now that I was a single mother, I was very apprehensive of making such a move, but this decision has been so fruitful. Our neighbours gave us all three meals in the first week and every parent approached us like we were family. Despite the meltdowns and screams, which is common in people with autism, the environment is so positive with so much greenery and dogs,” Mona says.
The best thing, she adds, is that Tanmay got comfortable with place before she did.
Now 21, he prefers his own company and develops anxieties when he is surrounded by people. But here, he socialises more and often likes to visit his neighbours. Mona was surprised to see her son sit in someone else’s house for 30 minutes.
“He goes for a bath, picks out his own clothes, makes tea by himself and does other such chores after coming here. Everyday is well-structured, keeping the schedules of the children in mind. He has to be at the vocational centre from 9 am to 3 pm everyday for activities. He rests for some time after coming home and evenings are reserved for walking inside the premises. He hits the bed around 9.30 pm. I also get enough time to do my own things,” she adds.
Mona also shares how parents have formed a strong bond with each other. No one has to explain autism or worry constantly about what others will say.
A consultant by profession, Mona is no longer the nervous and apprehensive parent she was when she moved in. The environment has helped both of them to cope with the loss of Bhanu.
She has observed that Tanmay’s anxieties and crying have reduced. He likes sitting on the porch, observing passersby, and even saying hi to them, which is a significant development according to Mona.
You can reach AGV here.
Edited by Divya Sethu