A story to remember

Sangeetha Chakrapani seen working with autistic children at Together Foundation in Andheri. Pics/Shadab Khan

Childhood stories work at different levels - they become family myths, or just tickle the funny bone, while some become guiding lights for an unknown future. But a few special ones become part of collective learning, especially when uploaded to an app called AutiTales, which will be launched later this month by the Together Foundation Trust that works with people with autism.

The stories are audio-visual experiences designed for autistic individuals of all ages. They are participatory exercises in which the autistic person listens, reads, types keywords, matches visuals with text, draws figures, and records voices - all of which eventually builds language and comprehension. Step-by-step assistance is provided at every point to the neurologically challenged person who either wishes to revisit the story, or skip a step, depending on where s/he stands in the broad spectrum of autistic behaviour.

At the outset, the stories seem sketchy and linear - Tina eats a cake on her birthday or Jordan is given chocolates by his teacher. But the stories essentially help connect dots for those who cannot avail of the natural organic childhood joy of listening to stories. The idea is not just story narration, but to give a chance to people with autism to "show" their understanding, and "to enable them to ‘do' things in order to fully experience a story". Also, these stories come to life with repeated encounters, each time bringing a new dimension for the recipient.

Sangeetha with her banker husband V Chakrapani and their four children, Jayanthi, Jayashree, Lakshmi, and Krishna

After all, what's life without stories - an Alibaba, a Chimanrao, a Red Riding Hood or Mowgli, asks Sangeetha Chakrapani, 49, the brain behind AutiTales. The mother of two autistic 18-year-old girls, Sangeetha is the founder trustee of Together Foundation; the trust draws its core philosophy from her personal learnings. No wonder the first nine stories uploaded in the app are somewhat like the ones that she narrated to her quadruplets in their toddler years. While her two neurotypical children responded to the plots, the other two didn't get simple concepts or the verbal usages; they would lose interest and fail to be part of the storytelling fun. Simple concepts such as a cake, a flower, the sun, or the table couldn't be passed on in the natural course.

"It's difficult to accept that two of your loved ones cannot enjoy bedtime stories, which are such a crucial part of growing up. I didn't feel good about it. In fact, I started thinking about how I could deconstruct these natural conversations. That made me arrive at AutiTales, because this way my Lakshmi and Jayanthi, and many other individuals with autism across age groups, could partake in the magic of stories," says Sangeetha, whose recent Ted Talk sums up the Chakrapani couple's life story - spanning from the birth of four underweight babies to the realisation that two of them have autism, a lifelong developmental disorder.

As parents, the Chakrapanis had to first accept that "these children are not ‘problems' which will eventually get ‘solved' one day". Instead they had to learn to perceive their children as distinct human beings, adults, who can be empowered with as many skill sets as possible - be it data entry, baking or assembling labels for clothing brands.

The journey therefore, began with some tough learnings - the foremost was that the Chakrapanis will negotiate their relationship with autism without any expectation of quick results. Both are professionals in their own right; V Chakrapani is a banker by the day, and also steers Together Foundation's funds and space management. Sangeetha was part of the advertising industry in Bengaluru before she was married. She is most remembered for initiating an ambulance service for street animals. But their roles as parents took precedence over most things after the birth of their special children. In fact, Sangeetha participated in several training programmes before she sculpted the Together Foundation. She has a post-graduate degree in Integrated Education and Counselling; she studied Planning Tools for Inclusive Practices. She trained in the TEACCH Transition Assessment Profile programme for adolescents and adults on the autism spectrum, which lays emphasis on those with transitional and vocational needs.

Sangeetha says each initiative at Together Foundation's centre in Andheri requires extensive homework, including a bakery unit, a paper plate and paper bag manufacturing unit, and a shop, which trains and employs people with intellectual disabilities. Currently, 25 adults with autism and other disabilities avail of the skills imparted in the sheltered workshop.

The foundation also runs a nationwide Phone A Friend With Autism group involving diverse people who are phone buddies to individuals with autism. The centre is run by seven teachers from the field of disabilities. The foundation's website, www.togetherfoundationtrust.org, has documented teaching programmes which are also born out of the sharing of insights by parents and caregivers. The experience of teaching individuals with autism, since the organisation's inception, forms the edifice of the modules.

For instance, the demo videos on personal hygiene instill independence in the washroom. The case study on the use of the phone creates several windows of expression for individuals with autism. After getting due training in Alternative and Augmentative Communication (AAC), Together Foundation now has an AAC book, which covers a variety of articulation levels required in diverse settings - be it a puri bhaji order at a restaurant or a chest check-up at a doctor's clinic or a ticket purchase in a bus. Daily living needs have been factored into each teaching module.

Communication is central to all Together Foundation efforts, including the AutiTales app.

The trust believes that despite the odds, the buzz of activities should never cease, be it ladoos for Ganpati or season's greetings with integrated messages on autism or Independence Day tributes shared online. "We cannot afford to lose momentum or hope, because our adults, who are no longer children, have varying needs. We have to populate the discourse with activities which engage the Together community in its entirety - friends and family included," says Sangeetha, who is currently giving back-end finishing touches to AutiTales. Fortunately, Together Foundation enjoys support from diverse donors - Rajani and Ramesh Tendulkar Charitable Trust, Perowshaw Dhunjishaw Bolton Charities, HT Parekh Foundation and Tata Investment Corporation.

Kiran Khalap, co-founder and managing director of Chlorophyll advertising firm, has helped in creating Together Foundation's logo and brand identity. Khalap says: "The biggest highlight of Sangeetha's work is the generosity in sharing everything she has learnt through back-breaking work and perseverance. Both husband and wife represent the classic Hero archetype, whereby they enter zones of extreme discomfort [that normal human beings shun]... and emerge triumphant." Khalap feels that the couple has the ability to single-handedly transport society to a new level of sensitivity, hope and positivity.

The Together logo has a beautiful back story, which speaks of the family's role in supporting autistic individuals. "I was touched by the bond that the four siblings shared. The two children care deeply for the siblings on the autism scale. So that explains ‘together'. I encouraged them to amplify their ‘togetherness' in their own logo," Khalap recounts.

Sangeetha's theory is clear: She believes in knocking on as many doors as humanly possible. "We have had donors from all corners of the world, and not necessarily those with personal reasons for supporting us. There are many who believe in donating just to support autism and other disabilities. We have to actively seek them out, without getting tired - exhaustion is not an option for us." In this context, Together Foundation, along with Vedaanta Senior Living Services, will soon launch a space in Bengaluru where adults with autism will learn to live independently. The project will be operational from 2025 and factors in parents who will accompany their wards. The Together Community is actively seeking parents who are interested in the community living experiment. The good news is that many have already subscribed to the notion.

Sumedha Raikar-Mhatre is a culture columnist in search of the sub-text. You can reach her at sumedha.raikar@mid-day.com