Neurodevelopment and autism in South Asia

Plain English summary of protocol

Background and study aims
Early identification and support for neurodevelopmental disabilities (NDDs), including autism spectrum disorder (ASD), can improve child outcomes and lessen severity of future impairments. However, despite high prevalence of NDDs in South Asia, the region lacks affordable and quality resources to meet children’s complex social, medical, and educational needs. This exacerbates difficulties for families and communities. Task-shifting, i.e., a process of restructuring the workforce in a way where responsibilities are shifted from a highly specialised workforce to one with relatively fewer qualifications might pose a solution to this concern.

Leveraging the potential of task-shifting, the Neurodevelopment and Autism in South Asia: Treatment and Evidence (NAMASTE) implementation programme aims to strengthen existing public health and care systems within four sites in South Asia: Delhi and Goa in India, Colombo in Sri Lanka, and Godawari in Nepal. The programme is empowering a team of specialist and non-specialist health and care providers to screen children for NDDs, including ASD, within communities and provide them with appropriate, evidence-based support, through a trans-diagnostic detection-to-care pathway. It is a collaborative endeavour among the University of Manchester, Sangath (India), Sri Lanka College of Paediatricians, and Autism Care Nepal Society.

Who can participate?
Families with children aged 1 year 6 months to 9 years residing within the study geographies are eligible for screening. Among these, families with children aged between 1 year 6 months to 9 years detected with signs of NDDs, including ASD, are eligible to receive appropriate interventions.

What does the study involve?
NAMASTE’s detection-to-care pathway is being implemented through four parallel processes:
1. Screening for NDDs: Across the four sites, a team of specialist and non-specialist health and care providers have been trained to screen children within communities for NDDs, using specific, culturally adapted tools. In India and Nepal, these include the Social Attention and Communication Surveillance (SACS) and the Rashtriya Bal Swasthya Karyakram (RBSK), while in Sri Lanka, the SACS and Child Health and Development Record (CHDR) are used.
The SACS-Revised (SACS-R) and SACS-Preschool (SACS-PR), developed at LaTrobe University, Australia, identify infants, toddlers, and preschoolers on the autism spectrum and have high diagnostic accuracy, making it ideal for community-based developmental surveillance. The RBSK is a programme by the Indian government’s Ministry of Health & Family Welfare that uses a screening tool for children and adolescents between 0-18 years of age for birth defects, diseases, deficiencies, and developmental delays. The CHDR is given as an early childhood growth and development monitoring tool to caregivers of children in Sri Lanka at birth to record the child's progress till age 18, focussing on physical well-being and psychosocial development.
2. Evaluation: Pre- and post-intervention outcome measurement will consist of administering a battery of assessments on child, caregiver, and familial outcomes. Considering the unique multi-site approach, India, Nepal, and Sri Lanka, have tailored these evaluation measures to suit their contexts. Detailed information about these measures have been provided in the primary and secondary outcome measures sections.
In NAMASTE, outcome evaluations with triaged families would be conducted at two distinct time points. The first of these would be at baseline, i.e., before intervention delivery and the latter at endline, i.e., 3 to 6 months from intervention delivery for WHO CST families and 8 to 12 months from baseline for PASS Plus families.
3. Intervention: NAMASTE interventions have been tailored to meet specific needs of triaged children. Children presenting with difficulties indicative of a broad range of NDDs, such as social communication difficulties and delayed speech, would receive the World Health Organisation’s Caregiver Skills Training (WHO CST), while those showing signs of or diagnosed with ASD would be provided the Parent mediated Autism Social Communication Intervention for Non-specialists Plus (PASS Plus). PASS Plus addresses social communication challenges and difficulties in learning and performing daily living skills, along with parental well-being. The WHO CST, a group-based intervention, equips caregivers with strategies and techniques to support children with activities of daily living, communication, and reducing challenging behaviours through play-based routines, while addressing parental well-being. Both the interventions have been piloted in India and were deemed appropriate for community-based implementation.
Detailed information about PASS Plus and WHO CST has been provided in the Interventions section.
4. Community engagement & involvement: Across sites, NAMASTE has actively involved individuals with NDDs to raise awareness about and destigmatise NDDs. To facilitate this, the workstream has developed a community engagement and involvement (CEI) toolkit consisting of audio-visual and pictorial aids.
Intervention effectiveness would be assessed using a stratified pre-post quasi-experimental observational cohort design. Regression models will estimate pre-post change in child developmental and symptom outcomes accounting for covariates. Similar analysis will be undertaken for the secondary outcome variables of parent-child interaction and parent and child wellbeing.
NAMASTE would be assessing the implementation and effectiveness of this transdiagnostic detection-to-care pathway in these four diverse health systems within the consolidated framework for implementation research (CFIR).

What are the possible benefits and risks of participating?
Participation in NAMASTE will help children with NDDs and ASD receive appropriate services that may address their social, communication, and similar difficulties. The programme’s outcomes may inform policy recommendations for India, Sri Lanka, and Nepal. Additionally, in appreciation of their time and commitment to participate in the evaluations, families in India will be provided with a token amount of INR 1500 ( GBP 12.81) at each assessment timepoint; caregivers are not provided with any participatory token for attending intervention sessions except for travel reimbursements. In Nepal, PASS Plus families would receive NPR 2000 ( GBP 10.41) following all sessions and WHO CST families will receive NPR 500 ( GBP 2.60) following each session. Likewise, in Sri Lanka, families undergoing travel for the intervention sessions and evaluations would receive LKR 1000 (GBP 2.43) as travel reimbursement. Families in Sri Lanka and Nepal do not receive any additional participatory token for participating in pre- and post intervention outcome evaluations.

The only potential disadvantage is the time commitment required for the pre- and post-intervention outcome assessments and intervention sessions.

Where is the study run from?
The NAMASTE programme is being implemented in East Delhi and North Goa in India, Colombo in Sri Lanka, and Godawari Municipality of Lalitpur district in Kathmandu, Nepal.

When is the study starting and how long is it expected to run from?
The NAMASTE programme began on 01 September 2022, with the first enrolment on 26 September 2024. It is anticipated to be completed on 30 September 2027.

Who is funding the study?
The National Institute of Health and Care Research/United Kingdom-International Development.

Who is the main contact?
1. Dr Jonathan Green, University of Manchester, co-principal investigator, jonathan.green@manchester.ac.uk
2. Dr Gauri Divan, Sangath, co-principal investigator, gauri.divan@sangath.in

Contact information

Study information

Eligibility

Locations

Countries of recruitment

• India
• Nepal
• Sri Lanka

Study participating centres

Results and Publications

Study outputs

Additional files

48786_PIS_v1.0_14Jan2026.pdf

Caregiver Copies for India, Nepal and SL_English

Editorial Notes

07/01/2026: Study’s existence confirmed by the National Institute for Health and Care Research (NIHR) (UK).