This month, where we have already marked World Disability Day, we can also welcome the publication, in The Lancet Psychiatry, of the first evaluation of a community health worker-delivered treatment for autism -- one of the most neglected of all disabilities -- from a developing country.
There are many reasons to celebrate this publication. First, because the evaluation was done through a randomised controlled trial, the findings have great scientific strength. Second, the study was carried out simultaneously in communities in India and Pakistan, a rare example of how scientists from the two countries can work as partners to address the common challenges our societies face. Third, the intervention was developed to take into account local understandings of autism and the ability of community-based workers with no prior training to deliver a complex intervention. But, most important, we celebrate because of what the study has observed.
[T]hough the region is very short of specialists who typically deliver autism interventions... we can offer these same interventions through appropriately trained and supervised community health workers.
The cardinal clinical features of autism become obvious by the age of two years. These features prominently include difficulties in communicating and relating to others - this can range from having no spoken language to talking at others rather than with them, along with narrow areas of interest. Autism is now thought to affect about 1 in 100 children, which would mean that about 4 million children with this condition live in India. Yet, the vast majority of these children do not receive the interventions which we know can change the course and outcome of the disorder because these are mainly provided by highly specialised health professionals (such as developmental paediatricians, special educators and speech therapists) who are not only very scarce but also almost entirely concentrated in a few urban metros and in the private sector.
Sangath, a non-governmental organisation head-quartered in Goa, has since it inception been working towards improving care for autism. The NGO is best known for its innovative use of community- and primary care-based non-specialised workers (essentially, ordinary people from the community who receive appropriate training and supervision) to deliver mental health interventions. Sangath entered into a collaboration with the University of Manchester, which has developed a new parent-mediated approach to addressing the core communication difficulties in autism - this was shown to be effective in a large trial in the UK.
The approach is to teach the parent strategies which they then carry out with their child at home... the parent's new skills get generalised into the child's daily routines.
Along with collaborators in Pakistan, we set about "adapting" this intervention, which in the UK had been delivered by highly trained speech and language therapists, so that it could be delivered by a non-specialist worker. One key characteristic of the intervention is that it was parent-mediated, i.e. the intervention is delivered to the parent and not to the child. The approach is to teach the parent strategies which they then carry out with their child at home. In this way, the strategies can be continued beyond the session with the facilitator and the parent's new skills get generalised into the child's daily routines. Another key feature is the use of video feedback -- showing the parent how they interacted with their child to allow them to recognise which behaviours support their child and which do not. The intervention was delivered in fortnightly sessions at home over six months.
The effect of the intervention was studied in a trial in which we compared a group of children who received the intervention with a group of children who continued to receive the normal services available to them in the two trial locations.
At the end of six months we evaluated whether the two groups were different in key areas of interaction. One area was in the way the parents 'synchronised' their responses to their child with autism, addressing the core deficit of the difficulty in the way a child receives and gives signals while communicating. We found that parents who had received the intervention were more "in tune" with their child's signals. This more comfortable environment then helped the child communicate more spontaneously, one of the core difficulties in autism.
We found that parents who had received the intervention were more "in tune" with their child's signals.
This is the first adaptation of a community-based intervention for children with autism which has been evaluated rigorously in the developing world. The most important lesson is that even though the region is very short of the specialists who typically deliver autism interventions in the West, we can offer these same interventions through appropriately trained and supervised community health workers. By delivering the intervention primarily through parents, they are empowered to become active participants in their child's therapy. Further, the interventions become a part of the routine interaction between parent and child. If the majority of children with autism in the region are to benefit from these new findings, policy-makers need to inject resources to use the existing infrastructure in the government and non-governmental settings to take this intervention to scale.
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