EXCLUSIVE | 'What Happens After Us?': The Unanswered Question Haunting Parents Of Autistic Children

"What after us? Who will look closely into these things after we are gone?" is a profound question that most Indian parents of autistic children can identify with. There is an employment quota for disabled people in India, but there are no plans for autistic children. When parents consider their child's future, they are troubled by the government's indifference to autistic children and its inadequate understanding of autism. A comprehensive future for children with autism is not supported by India's current infrastructure. "I won't be controlling things from a photograph; that is impossible, right? This thought definitely crosses my mind, which brings a terrible anxiety that always remains with parents like us. We are looking for a place, or continuing to look for a place, where our children will remain secure after we are gone," said Sumon Bhattacharya, a resident of Kolkata, whose son Binayak is a special child. 1 In Every 65 Children As per available data, approximately 18 million people live with autism spectrum disorder (ASD). Autism is more commonly seen to occur among males than females. Analysis done in the Indian Pediatric Journal shows that ASD affects about one in every 65 to 68 children between the ages of two and nine. Although the exact causation of autism spectrum disorder (ASD) is unknown, a wealth of studies suggests that a complex interaction of genetic, neurological, and environmental variables leads to its development. A person with this neurodevelopmental disorder is born with abnormalities in the structure and wiring of their brain. ALSO READ: ABP Live Doc Talk | Screen Time Impacts Sleep, Behaviour, Communication In Autistic Children Autism is not an illness that will affect a person in the same way. Many spectrum disorders fall under the umbrella of autism. Since there are no consistent behavioral indicators, the effects of autism will differ greatly from person to person. An avid reader, Binayak, 22, finds his life's rhythm in paintings. Though in his childhood days he ran away from books, from the age of 12-13, he started gaining deep interest in reading. His parents then introduced him to books such as those by Bengali author Shirshendu Mukhopadhyay and others. Using his powers of imagination, Binayak brings down pages of books through sketches on paper, and that perhaps is one of his biggest strengths, noted his mother. Binayak with mother Sumon Bhattacharya Binayak completed higher secondary education from a regular Calcutta-based school, where he would often become a victim of bullies, and teachers also lacked empathy and understanding. This kind of experience does bother parents and forces them to worry about how society will treat autistic children. "By security, parents don't indicate financial security but rather an environment where their children will feel safe and secured, heard, and understood. I might leave a lot of money behind and ask a close friend or relative and tell them that here is the money; please give my son two square meals a day after I am gone. Taking care of him like that is not the solution. If that friend has no thorough knowledge of autism, they cannot keep my child well. It is not possible for any caregiver to do that unless it is done scientifically," added Sumon. Anamitro Chatterjee, 25, uses canvas as his imagination and colours as his power for painting down his emotions. Securing 88% in both board exams, Anamitro studied in a normal reputed school in Kolkata. Yet, there were challenges faced by his parents. His creativity is expressed the best way when he paints. Currently, Anamitro is working with the India Autism Centre as a full-time residential artist and illustrator. Anamitro with mother Piyali Chatterjee "Most schools have a career counselor for the normal students. I think now it is essential that every school has one for special children as well. People who also work as a special teacher for whom even they don't exactly understand. Like my son's school had a counselor, but my husband and I had to repeatedly go to explain that this is how you should handle him. Because they were not sensitised to handle them. Even one of the teachers who had an MA in psychiatry did not know how to handle him. I had to go and teach, telling them that this is what you do. I think sensitising is very important. So having workshops on a regular basis sensitises the children in schools and colleges," stated Piyali Chatterjee, Anamitro's mother. Autism Vs Disabilities Both at the federal and state levels, parents observe that government infrastructure has not yet expanded much. Additionally, parents report that formal career prospects for young people with autism are quite uncommon. This demonstrates the clear difference between a handicap brought on by autism and other disabilities; since each autistic child is different, studying one does not necessarily reflect the whole. Every youngster needs a distinct kind of support system. Therefore, without a thorough grasp of autism, it is extremely difficult for an organisation to properly give this support. "For that reason, I haven't really seen many government spaces that have done something for autistic youth. We cannot just abruptly push our children into the 9-to-5 working world." For that reason, we need to assign distinct tasks to each child according to their individual capacity. Those who cannot work need to be guided through a proper support system. This line of thinking... In that regard, I would say the government hasn't caught up, but in the private sector, I have seen them doing it," stated Sumon. Piyali stated that in her opinion there are really challenging issues; for example, there are numerous steps that government positions are set aside for persons with disabilities. However, patients with varying mental abilities are not covered by the impairment. "For example, my son has a slight form of autism. A person with moderate autism is not eligible for any government reservation," added Piyali. In a world where schools often shut their doors for autistic children and workplaces don't offer a seat, India Autism Centre is acting like the bridge between opportunities and autism so that no child or youth remains deprived of having a good career and future. Suresh Kumar Somani, Managing Trustee, India Autism Center stated that when he started the India Autism Center, it was driven by a simple yet urgent realisation: while awareness around autism was growing, families continued to struggle to find comprehensive, lifelong support for their children. "As a parent of a son on the autism spectrum, my wife and I have experienced firsthand the questions, uncertainties, and concerns that many families face every day. One question, in particular, stayed with us over the years: What happens after us? Who will support our son when we are no longer around? Who will understand his needs and ensure that he continues to live a life of dignity?" That question became the driving force behind the India Autism Center and continues to shape his vision for Samaavesh. Today, the India Autism Center is working to build that ecosystem through clinical services, early intervention, education, skill development, caregiver training, research, advocacy, and community engagement. "We realised that families needed more than isolated interventions, they needed a lifelong ecosystem of support for autistic individuals. We've been actively partnering with parent communities and daycare centers to create pathways for upskilling, employment, and meaningful participation in society, while also driving broader change through professional training, awareness initiatives, policy advocacy, and the creation of more aware and inclusive communities," he noted. (Ghosh is an independent journalist with a focus on health, climate change, environment and human interest stories. She is also a research contributor for Media Mavericks)