Communication-centered Parent-mediated treatment for Autism Spectrum Disorder in South Asia (COMPASS).

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Eighty percent of the world's children with Autism Spectrum Disorders (ASD) live in low resource settings. Recent evidence from high-income countries supports the effectiveness of targeted parent-mediated interventions for the early treatment of children with ASD. Interventions that are delivered through parents have the additional advantages of improving parental knowledge and morale, potentially promoting the social empowerment of mothers, generalising into improvements in the family environment for the child and thus potentially conferring long-term impacts on the social context, the child's environment and functional outcomes. The Pre-school Autism Communication Therapy (PACT) trial conducted in the UK is the largest yet trial of this kind. It is targeted at getting parents to recognize their child's social communication difficulties and create an environment which gives the child a space and time to communicate at their own pace. This intervention uses video feedback techniques to work with parents to enhance their understanding and responsiveness to the atypical communications of young children with autism. The trial showed that children with ASD who received this treatment benefited from the enriched communication environment that their parents were able to create; this in turn had a positive impact on the social interactions the children initiated. More importantly these changes, in the parent child interaction and independent communication from the child, were sustained in a follow up study after six years which demonstrated a decrease in autism symptoms in children who received the intervention. The intervention has now been successfully adapted for use in South Asia, including relevant cultural adaptation to enhance parental acceptability, developing a supervision and training cascade to allow the intervention to be delivered by community based non-specialist workers, and delivery of the intervention at home. The resulting Parent mediated intervention for Autism Spectrum Disorders in South Asia (PASS) was subsequently evaluated in a pilot trial which demonstrated its acceptability, feasibility and efficacy. Subsequently, the team in India have developed and piloted a complementary comorbidity package creating a comprehensive intervention for children with ASD in the 2-9 year age group (PASS Plus). Evaluation methods have also been adapted and tested in both of these pilot studies. Most children with ASD in India and other low resource settings do not receive evidence based care which the proposal investigators have shown can reduce the symptoms of ASD and is feasible and acceptable for delivery in the proposed study setting. The proposed trial will build on this pilot work already carried out in India, and will carry out the largest, definitive, trial of the intervention, involving 240 participants recruited through two tertiary government hospitals in the capital city of New Delhi, which cater to an urban poor population. The intervention will be delivered through existing health system frontline workers. The trial will evaluate the effectiveness and cost effectiveness of the intervention on symptoms of ASD and parent-child interaction as well as more general impacts on child functioning, parental well-being and social empowerment. COMPASS will be the largest trial of its kind for ASD in any low resource setting and the evidence generated will have an impact not only health policy and practice in India, home to over 5 million children with ASD, but also other low resource settings in the region.