Come World Autism Awareness Day (April 2), and Dr Anil Kumar Kundra will inaugurate his second Autism Guardian Village at Balasinor in Gujarat. His original facility in Hyderabad entered its 10th year in 2023, and he felt that there is an urgent need for more such centres.
A 2019 study by Neurology India says that more than two million people in India might be affected by the Autism Spectrum Disorder. However, 10 years ago, when Dr Kundra tried to find a caregiving facility for a friend’s autistic son in India, he found none. He had then blurted out that he would create a place where his friend’s son would be looked after.
“When I heard about autism years ago, I had no idea what it was. I realised that awareness is very low among Indians, even though many children are diagnosed every year,” says Dr Kundra.
The Autism Guardian Village on the outskirts of Hyderabad is an answer to the biggest worry of parents with autistic children — what will happen to our child after we die?
FEELING OF BELONGING
In the village, these parents can live with their children till the end. After a child is left with no parent, the facility looks after him/her. The expenses are drawn from a trust created by these parents and Kundra. Parents buy a house in the village which is later passed on to the child. Every child has a caregiver, and other specialists to look after his every need.
“I conceived this place for those parents who do not want to send away their children to a special facility. We have created an environment, so that these children can thrive and lead a life of dignity. The world outside is not very kind to them. In this village, the children live among people who are like them. This gives them a sense of community and removes their sense of isolation,” says Dr Kundra. The desire to help these children changed Dr Kundra’s course of life. He already had an MPhil in English. He went on to pursue masters and PhD in psychology.
Mona Rai, who lives in the facility with her 24-year-old son, Tanmay, says that the village has been their home since 2020. She moved in from Noida after her husband passed away. “Living here has improved Tanmay’s quality of life immensely. He has quickly picked up new social skills. The best part are the people who come together every day to provide a sense of belonging to the children. It’s not only the facility, but also the neighbours who look after Tanmay. I could not have asked for more.”
“Acceptance is winning half the battle. In the village, the kids make friends, find people to say hello to. They clean their rooms, their utensils and clothes in a community setting. It gives them the sense that they are also needed in this world,” says Dr Kundra.
The Autism Ashram in the village provides all kinds of therapy to the children. They study, learn vocational skills and lead a healthy life.
“We have a schedule set for them. Throughout the day, they walk, do yoga, meditate, learn, listen to music and play. At the end of the day, they are very tired and sleep well. Good sleep, nutritious food, the green environment and loving neighbours ensure that every child lives a good life,” adds Dr Kundra.
Dr Kundra, who is from Punjab, settled in Hyderabad after his father, who was in the Indian Army, was posted here. He lives with his wife in the facility. After him, he says, his two daughters will help continue his legacy.
ABOUT AUTISM
Dr Hema Nalini Kandru, a senior Consultant Developmental Pediatrician, says that Autism Spectrum Disorder is a condition where a child faces difficulty in social communication and interaction. The child has difficulty in beginning or continuing a conversation. They cannot communicate their needs either by pointing or verbally. Because of this difficulty, they may not respond when parents, other kids or teachers interact with them. They may not play in the way it is expected. They might line up toys whether it is blocks, balls or cars, depending on their interest.
Explaining the traits of children with autism, the doctor adds: “They may have sensory issues like being uncomfortable/scared with everyday sounds. They are not comfortable with haircuts, brushing or having food with certain textures. They may repeat phrases or words that they have watched or make repeated movements like flapping hands or keep running in circles. Parents usually come with concerns of a child not responding when called or not speaking as expected for age.”
Screening for autism can be done as early as 16 months. Diagnosis is done by a developmental pediatrician/ child psychologist or psychiatrist.
Specific tools for autism are used to diagnose the condition. Early identification and intervention leads to a better outcome. Depending on the individual needs of the child, therapies such as occupational therapy, speech therapy and behaviour therapy are advised. Parents play a major role and the interventions mediated by parents are more helpful.
The doctor says, “Autism is not a disability, it is a different ability. We need to support children, parents and families with this ability.”
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