Global Health Research Unit on Neurodevelopment and AutisM in South ASia Treatment and Evidence - NAMASTE

Global Health Research Unit (GHRU): Neurodevelopment and AutisM in South ASia Treatment and Evidence (NAMASTE) is an ambitious programme which aims to develop a flexible evidenced pathway towards universal health coverage for young children with Autism, focused on four sites in South Asia: Delhi and Goa in India, Colombo in Sri Lanka, and Kathmandu in Nepal.

Autism, a severe neurodevelopmental disability, has a significant impact on a child’s developmental trajectory into adulthood, with profound long-term consequences on the individual and their families. About five million families in India alone live with a young autistic child, the great majority with no access to services. Over a 10-year collaboration, Sangath, an Indian public health research not-for-profit, and the University of Manchester have carefully adapted and expanded an early intervention, developed and tested in the UK with evidence for improving long-term autism outcomes for non-specialist delivery in South Asia. The resulting ’Parent-mediated Autism Social Communication Intervention for Non-Specialists Plus (PASS Plus)’, is the first of its kind having shown real-world effectiveness in low resource settings. Sangath has in parallel, also developed an extensive digital training and supervision platform for health workers to support non-specialist delivery of a range of psychosocial interventions. NAMASTE will extend this work, with additional collaboration with the World Health Organization’s group-delivered ’Caregiver Skills Training’ (CST) for more general neuro-disability, into a comprehensive detection care pathway, which will include a novel, flexible digitally enabled, two-level screening protocol (for young children with neurodevelopmental difficulty); combined with a complimentary evidenced intervention protocol embedded in the health systems where possible.

NAMASTE will also develop a training, research and capacity building hub across India, Sri Lanka and Nepal over 5 years (2022-2027). Initial workforce development will build clinical and research capacity across each country; including masters, doctoral, and post-doctoral training from the UK for future health leadership. In each region and at each stage, community partners, self-advocates and co-applicants will help co-design awareness materials and advise on tool and protocol development. Evaluation of this program will be disseminated in international scientific and policy forums. This GHRU will generate a hub for high quality research in autism and other developmental disorders in South Asia.

In summary, the NAMASTE will work within five parallel workstreams to achieve its aims:

Workstream 1 - Development of tools and workforce

Development and adaptation of tools followed by digitally supported training of disability-naïve non-specialist providers to (i) reliably carry out screening and detection activities and (ii) deliver complex interventions for neurodevelopmental disorders (NDDs) and autism spectrum disorders (ASD) under supervision with high fidelity.

Workstream 2 - Detection

Implementation of a two-stage detection procedure in each site to identify NDDs and ASD, with identification of enablers and barriers to implementation at policy, health system, and practitioner levels.

Workstream 3 - Intervention

Implementation of the PASS Plus and WHO CST interventions for NDDs including ASD.

Workstream 4 - Inclusion and participation

Work with lived experience advocates and experts to co-develop and implement a multi-site public engagement strategy using guidance on participatory approaches to build awareness about childhood NDDs including ASD with a view to increasing community level knowledge and the participation and inclusion of persons with ASD.

Workstream 5 – Capacity building

Development of clinical and research capacity across each country, alongside extensive postgraduate training. Trained individuals will develop the capacity in key areas, that will help to achieve the NAMASTE aims during the project timeframe, and beyond via the development of a South Asia Neurodevelopmental Disabilities Research Hub.