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Child neurodevelopment and autism research unit launches in South Asia

Indian woman with kid with disabilities at Autism Centre
Photo: University of Manchester

A £6.95 million Global Health Research Unit on Neurodevelopment and Autism for children in South Asia is to launch with the help of University of Manchester expertise.

The NIHR Global Health Research Unit on Neurodevelopment and Autism in South Asia Treatment and Evidence  -known as NAMASTE – has been awarded by the National Institute of Health and Care Research (NIHR) using UK aid from the UK Government which supports global health research.

NAMASTE builds on Manchester’s own autism programme and more than a decade of partnership with India, to implement a novel integrated detection-care pathway for young children with autism and their families in India, Sri Lanka and Nepal, using lay health workers.

NAMASTE will also develop much needed research capacity in the field of neurodevelopmental disorders in South Asia.

Autism Spectrum Disorder (‘Autism’) is a severe neurodevelopmental disability with significant impact on children’s social development and independence into adulthood and profound economic consequences. The WHO included autism as a key priority in its Mental Health Action Plan in 2014.

About five million families in India live with a young autistic child, the great majority with no access to services. Over a 10-year collaboration, Sangath and The University of Manchester have carefully adapted an autism programme developed for the UK to the South Asian context. The resulting ‘Parent-mediated Autism Social Communication Intervention for non-Specialists Plus’  (PASS Plus), delivered by lay-health workers, is the first of its kind and has shown real-world impact in two initial randomised controlled trials, with large-scale evaluation underway in New Delhi.

NAMASTE will be a collaboration between the two lead organisations and Autism Care Nepal, the College of Paediatrics Sri Lanka, Harvard Medical School, La Trobe University, Kings College London, the World Health Organisation and Ummeed, Mumbai.

Prof Jonathan Green, the Lead Investigator from the University of Manchester said, “I am delighted and proud at the launch of the NIHR Global Health Research Unit NAMASTE. This is the culmination of more than a decade of development work between University of Manchester and South Asia partners, particularly Sangath in India. It is a tremendous award for Global Health Research and Development in Autism; initiating for the first time an evidenced integrated detection and care support pathway adapted to the needs of low resource settings with non-specialist delivery. NAMASTE has the potential to initiate a step-change in the reach and effectiveness of Autism health care in low-resource settings and support ongoing clinical research developments to benefit the whole region and beyond.”

“I am delighted and proud at the launch of the NIHR Global Health Research Unit NAMASTE. This is the culmination of more than a decade of development work between University of Manchester and South Asia partners, particularly Sangath in India” said Prof Jonathan Green.

Dr. Gauri Divan, co-principle investigator from Sangath stated: “This is the result of over ten years of systematic research in the area of community care for autism which we have been doing in Sangath. We know that families continue to struggle to receive a diagnosis and then to find proven affordable care. We hope to use our experience with working with ASHA workers in Delhi, who have been delivering the PASS Plus intervention in the homes of families. This experience has given us confidence that we can implement this across districts in South Asia by collaborating with existing health care providers and provide examples for scaling up services.

Parent advocate Gopika Kapoor, who will be part of the programme shared “ As a parent of a child with autism, living in an urban areas, with access to resources and no financial constraints, I am aware of my privileges, as I am of the fact that my son and I form a minority in the Indian subcontinent. NAMASTE will help families across the subcontinent access evidence based care techniques which will help them support their children to thrive.”

Dr Sunita Amatya, Chairperson, AutismCare Nepal Society stated that “NAMASTE is a potential game changer in the arena of developmental disabilities and autism and is an absolute need of the time in Nepal. The need for early detection and intervention services has not yet been identified at a policy level in Nepal, and this program will facilitate this step.”

Dr Asiri Hewamalahe, Consultant Community Physician, Ministry of Health, Sri Lanka and Dr Dilini Vipulaguna a community paediatrician, who will together be leading the work in Sri Lanka are clear that

“Namaste will complement the existing system of early detection and early interventions for developmental disorders including autism in Sri Lanka. Most importantly, it will fill the gap in caregiver training and parent advocacy which is a timely need for families. During the current context of economic hardships to Sri Lanka ‘Namaste’ is indeed a blessing”.

Prof Vikram Patel from Harvard Medical School, is pleased that the work that his team has supported in Sangath involving the use of digital platforms to help non-specialists to learn and then deliver pyscho-social interventions will be incorporated in NAMASTE. “Digital tools offer the most exciting opportunity to rapidly scale up, and assure the quality of, psychosocial interventions for mental health. NAMASTE will be the first program in the world to do so for autism”.

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