2 decades of Sethu building bridges for Goa’s neurodiverse children

Adil (name changed), 16, was diagnosed with autism spectrum disorder as a toddler. Intensive therapy helped him learn to communicate verbally. Along the way, he discovered a talent and passion for art. His portfolio is a combination of portraiture, still life, landscape, maps and paintings from significant moments in India’s history. Adil currently helps his mother run her home catering business. Thanks to the intervention of Sethu Centre for Child Development and Family Guidance (Sethu) team, he could pave the path of his life and carve a niche for himself.

It was exactly two decades ago that Sethu was born in 2005 through a team of six women professionals, who had no grand plan apart from the fact that they were crazy about children and fiercely committed to their wellbeing. All they wanted to do was serve children and their families. So they started a new child development organisation in Goa. The three founding professionals were Dr Nandita De Souza, who continues as the director, Anjali Barretto, a speech and language pathologist, who even now heads of the Child Development Centre and Yogita Joshi. The founder trustees were Ameeta Mascarenhas, who is still on board; Elvina Menezes and Sneha Bhandare.

Ameeta Mascarenhas recalls, “When Nandita invited me to be a trustee of Sethu, I was quick to agree, seeing the dire need in Goa for what she envisioned – a multi-disciplinary centre to help children develop and thrive. We started out with a handful of committed professionals and a dream. Twenty years on, we have thousands of children in our incredible, joyful neurodiverse family. I’m humbled by the trust and appreciation we’ve received and grateful for the support and funding. We’re now building a new state-of-the-art centre which will help us expand our services, widen our reach and continue to build a bridge to a more inclusive reality for our children. Can we change the world? We’ll never know if we don’t try. So we’re trying our hardest to make it happen.”

Sethu’s beginnings, while small, were powered by boundless commitment and passion. Today, it is a multi-award winning non-profit striving to build a neurodiversity-affirming world through family-centred care. Sethu actively collaborates on advocacy efforts and works closely with Anganwadis. By the time Sethu turned 18, they had over 10,000 registered children, not including the hundreds they interact with through their various outreach programmes such as Gnyandeep and Inclusive Education.

Sethu offers support to children from birth to age 18, and their families. The team works with children facing a gamut of challenges, from neurodevelopmental disabilities to emotional difficulties as they navigate the turbulent adolescent years, due to unrest at home, etc. Multiple studies prove that the sooner the intervention begins, the better it is. For disabled children or those who’re vulnerable to disability due to factors such as low birth weight, premature birth, genetic conditions, etc, it’s best to start at birth or shortly after. This is when the brain is developing rapidly, and can learn best because it’s most ‘neuroplastic’ or able to form connections better and faster than at any other time in life.

However, factors such as lack of awareness about disability, inadequate facilities for assessments, testing and early intervention mean that many families come to us when their children are toddlers or even much older, explains Dr Nandita. She cites the example of Aseem (name changed) who was 11 when he was diagnosed with autism at Sethu. He continued to receive intervention services with us. Now close to 25, he has higher education degrees from Linnaeus University, Sweden, and Brunel University, London, is an internationally certified game-ranger, open-water-diver and author-in-the-making.

Aseem’s mother Seema points out, “Dr Nandita explained to us why Aseem had the habit of holding his breath underwater for extended periods – something not a single other doctor had been able to explain for seven years previously. We tried her recommendations and Aseem was such a happy cookie. Next day we were at Sethu and have been like ‘Betaal’ behind Vikram ever since.”

Similar is the case of Mitali (name changed), who is now a successful screenwriter. She came to Sethu when she was diagnosed with dyslexia as a teenager. “I would look forward to my weekly sessions at Sethu throughout the week. It was the best time ever – very comforting and homely. It’s amazing to just be there. Sethu has done a lot for me, I can’t imagine my life without it,” agrees Mitali.

Dr Nandita herself, self-diagnosed with ADHD in her 50s! Diagnosis for some neuro-developmental conditions such as autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD), have increased in recent decades but not necessarily due to an increase in incidence, per se,” and adds, “Possible reasons include greater public awareness and better diagnostic criteria resulting in more frequent identification of these conditions; revisions in diagnostic manuals, such as the DSM-5 in 2013, which have broadened the definitions of certain disorders, to encompass a wider range of behaviours and developmental issues; and less societal stigma, which has encouraged more individuals to seek evaluations and support, contributing to higher reported prevalence. There is also ongoing debate about the potential over diagnosis of conditions like ADHD and ASD, where normal behaviours might be medicalised, leading to unnecessary treatments.”

Sethu first opened doors in an apartment in Miramar very generously lent to them, rent-free, by Eric Menezes, and many moves since, the organisation is finally set to move into its own premises at Guirim. The new premises, built to universal design principles for accessibility will have custom-built spaces that will enable Sethu’s highly qualified interdisciplinary team to perform to the best of their skills and abilities, and the children and families it serves, to get maximum value for their time in session with Sethu.

There will be custom-equipped rooms for therapy, counselling and testing where children can receive comprehensive, individualised assessments; comfortable, welcoming spaces where families can access resources and connect supportively with Sethu’s professionals as well as network with other families; as well as space for workshops, support groups and a variety of programmes vital to Sethu’s mission of building an inclusive, neurodiversity-affirming Goa.

Out of the total cost of the building of Rs 10 crore, Sethu has already raised Rs 7.2 crore till date, thanks to the generosity of hundreds of individuals as well as businesses that support their mission to be a centre of excellence in child development, family centred care and inclusion through interdisciplinary services, training, advocacy and research. As of now, the organisation does not receive any financial support from the government. “We’re currently racing against time, banking on continued community support is vital to help us raise the remaining amount,” says Dr Nandita.

When she looks back at this incredible journey and explores what the future has in store for Sethu, Dr Nandita has this to say, “When we started Sethu our only purpose was to offer care to children with disabilities in Goa. We never imagined that Sethu would grow into a movement for inclusion, led by a multidisciplinary team of professionals together with thousands of children and families who are the agents of change in their communities. We believe that every child in Goa can thrive when they are celebrated and nurtured. This is the responsibility of each one of us as it is only through supportive collaborations that we can build a caring village around every child.”