With South Asia reporting the highest global prevalence of childhood neurodevelopmental disabilities (NDDs), a new regional initiative is aiming to evaluate this pressing issue of delayed diagnosis and care through community-driven solutions. The work published in June as a manuscript titled, ‘Co-designing a community engagement toolkit to raise awareness of screening and care for neurodevelopmental delays and disabilities in India, Nepal, and Sri Lanka’ was led by a group of 13 researchers who developed a Community Engagement Toolkit, in India, Nepal, and Sri Lanka, that is designed to improve early detection and family support for children with developmental delays, including autism and intellectual disability.
The toolkit, part of the larger NAMASTE programme (Neurodevelopment and Autism in South Asia Treatment and Evidence), was developed using participatory research involving 185 individuals. These included 94 caregivers, 68 non-specialist health workers, 14 specialist service providers, and 9 autistic adults, who participated in interviews and co-design workshops across Delhi, Goa, Lalitpur (Nepal), and Colombo (Sri Lanka).
A regional need for early detection
South Asia is estimated to have the highest prevalence of developmental disabilities worldwide, with 1.2 million children under the age of five living with autism and another 3.9 million with intellectual disability. Yet early detection remains low due to stigma, myths, and gaps in both caregiver knowledge and public health messaging. Many families reported delays even when they had regular access to health services.
A 57-year-old mother from Goa who participated in the research, said, “My paediatrician must have seen the signs, but he was not telling us; later on, I asked him, “why didn’t you tell me my son had Autism, he said that he was scared of losing a patient because many times parents don’t take the diagnosis well.”
Toolkit
The research identified three critical stages where caregivers needed information: (1) recognising early signs from birth, (2) navigating diagnosis, and (3) coping after a confirmed NDD diagnosis. Based on these needs, the toolkit offers nine multilingual components, including: awareness posters to highlight key developmental milestones; a Child Development Milestone (CDM) calendar for monthly tracking; leaflets and videos offering caregiver stories, self-care guidance, and evidence-based support resources.
These components were developed with feedback from Community Advisory Boards in all three countries and reflect the voices of mothers, fathers, grandparents, autistic adults, and local health workers.
India’s implementation focus
In India, the toolkit is being piloted in east Delhi and north Goa districts, where Anganwadi workers are being trained to use and distribute the materials. The content has been adapted to the relevant Indian languages and cultural settings, and caregivers reported preference for printed materials over digital ones due to accessibility issues.
Importantly, the toolkit integrates with India’s Mother and Child Protection (MCP) Card, a government health tracker that is under utilised for developmental monitoring. The CDM calendar addresses this gap by making developmental milestones more visible and understandable in everyday family life.
Voices from Nepal and Sri Lanka
In Nepal, where developmental screening tools are limited, the toolkit fills a major gap by introducing visual aids and referral information through Female Community Health Volunteers. In Sri Lanka, although families receive the Child Health Development Record (CHDR), many reported not understanding what to do when a milestone is delayed.
A 44-year-old mother from Lalitpur said, “Usually, all the materials were in English. It was difficult to understand. Everything was new at the time. I feel that if I had known about it when she was two or two and a half, she would have been diagnosed earlier.”
Empowering families and frontline workers
Beyond materials, the toolkit is also about changing attitudes. Videos feature real caregivers and health workers, focus on strengths rather than fear, and avoid clinical jargon. It encourages inclusive language, recognises shared caregiving in joint families, and supports mothers — who bear the brunt of responsibility — with mental health tips and self-care guidance.
“Too often, caregivers are left confused and unsupported, and even steered away from seeking care because of stigma and lack of credible and accessible information,” said lead author of the study, Sweta Pal of Sangath, India, a mental healthcare non-profit. “This toolkit aims to bridge these critical gaps by offering clear, simple, actionable information and handholding caregivers through the journey of recognising early signs and navigating the path to care.”
Next steps
The toolkit is the first of its kind in South Asia, and novel for most parts of the world. It is designed using human-centred design principles and embedded in a public health context. It is currently being rolled out as part of community-based early screening programmes. The developers hope future research will evaluate whether it leads to earlier diagnoses, better engagement, and ultimately, improved developmental outcomes for children.
“This is more than just a set of posters and videos,” said Dr. Gauri Divan from Sangath and co-author, “The components have been designed keeping in mind the often difficult and tortuous journeys that families of children with disabilities must travel when they seek answers for their child’s difference. It is a reflection of what families told us they needed — and we hope that local governments will leverage these resources to ensure their availability for families in the future.”
Published – June 28, 2025 07:03 am IST
