Pooja Nerula, a mother from Dehradun, noticed a behaviour change in her young daughter but couldn’t put a finger on the problem. “She couldn’t speak and kept running around. She was very hyper. At that time, I had no idea of a challenge like this,” recalls Pooja. Her daughter was later diagnosed with Autism Spectrum Disorders (ASD), by a specialist in Delhi. At that moment, things changed for the Nerula family.
ASD is a complex neurodevelopmental disorder that manifests in children by the age of three. The degree may vary from mild to very severe and is hence it is known as Autism Spectrum Disorder, which also covers autism. The diagnosis meant that Pooja’s daughter would have lifelong difficulties in social interaction, verbal and nonverbal communication and resort to repetitive behaviours. They were distressed for their daughter’s future and were haunted by the question ‘What happens to her after us?’, ‘How will she interact with the world?’
And then, they heard of Arunima, the Assisted Living Center in Dehradun, Uttrakhand, a home for autistic people. The Centre trains its residents to live independently by honing skills and nurturing their talent. The project started as a personal journey for Aparna Das, the Director of Arunima. Her sister, Arunima, 36, the namesake of the NGO, is an ASD person who has been under Aparna’s care for the last 20 years. While Aparna was able to provide good care for Arunima earlier, almost a decade back, she decided that Arunima needed special attention with space to grow, and so did many others like her. And Arunima, the foundation started.
“Each programme is specially designed keeping the students’ capabilities and limitations in mind,” says Tina, a teacher at Arunima. “We focus on socials conduct first such as dressing, hygiene, going out,” she further elaborates. However, training and taking care of Arunima’s residents can be a challenge. Upon arrival, the residents have several limitations to overcome – self-harm, restrictive speech, inability to clean and bathe themselves. But these are tiny bumps in the foundation’s journey to provide them with a better life. The real challenges for the foundation are from the sane society – lack of funding, the lack of suitable manpower, and the lack of support from society. Building on the third challenge, she said that few people are not able to accept autistic people and do not want the centre around their houses.
How rare is ASD in India? Actually not so rare. More than 10 million children in India suffer from autism with a prevalence rate of one in 66, according to a study. But awareness and research on the disorder remain limited, as the social bias continue to prevail. The Indian government has only recently recognised autism as a disability in 2016.
The country needs similar government-run living centres for ASD persons across India so that the services are accessible to the marginalised as well. “When government fully recognises autism and does everything necessary for the affected, I will be satisfied. Till then, we will continue to expand our centre and hope it is a model for other centres,” says a determined Aparna before signing off.
Community correspondent Luxmi Nautiyal reports from Uttarakhand for Video Volunteers.
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