A parent-based therapy that helps children with autism communicate better with their families works when adapted and localised to fit low-resource settings in south Asia, report researchers from India, Pakistan and the UK in the international journal Lancet Psychiatry on Wednesday.
Autism is one of the world’s fastest growing developmental challenges that affects up to 70 million people, causing a severe effect on the social development of children. The initiative has been adapted for South Asia by Goa-based NGO Sangath in collaborated with the universities of Manchester and Liverpool and partners in Pakistan to successfully test it in India and Pakistan.
In developed countries, specialist treatment help children improve interaction with their families and peers, but these options are lacking in India outside the metros. The therapy, if implemented, will improve treatment for an estimated 5 million children with autism-spectrum disorders in the South Asia region.
Supported by the Autism Speaks Global Autism Public Health Initiative, Sangath researchers adapted a leading UK therapy method to launch PASS (Parent-mediated intervention for Autism Spectrum disorder in South Asia) programme.
The therapy was taught to non-specialist health workers in Goa in India and Rawalpindi in Pakistan, who worked with parents of 32 autistic children ages 2-9 years. “Children a little older than in the UK intervention were also included in the India study because autism is usually diagnosed late here, but there was no difference at all in the outcomes,” said paediatrician Dr Gauri Divan in Goa, who led the initiative in India.
“The communication intervention is exclusively with parents, who are counselled on how to become observers and recognise subtle signs of communication from the child. It encourages a child with autism to become more confident about communicating with parents, and since we are work only with parents, the counsellor doesn’t have to be a specialist trained in handling a child with autism,” says Dr Divan.
The PASS therapy was delivered in the parents’ first language and engagement in the treatment group began with a session on the causes and misconceptions about the condition. At the end of the 12 week period after fortnightly sessions, the children were assessed using recognised methods and shown to be more likely to initiate communication with their parents compared to the comparison group that continued treatments they were already getting.
“These techniques have helped children in the UK, but in South Asia had its unique challenges such as lack of resources, trained staff, language and cultural differences and poor access to medical centres. This study is the first to have adapted a treatment so it can be delivered by non-specialist health workers in south Asian communities,” said Professor Jonathan Green, lead author of the study.
Though the study did show a decrease in one measure of attention, suggesting that more refinements may be needed to PASS, the Manchester researchers are optimistic that it represents a cost-effective way of delivering treatment to children in areas where resources and specialist staff are unlikely to be available.
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“We took a complex intervention, simplified it without losing its core ingredients, and trained non-specialists to a high standard. Based on the findings of this study, we now plan to develop a regional training programme to make this intervention available more widely,” said Dr Divan.
“The key to developing mental health services in India is to develop simple and easily understood treatments that can be delivered by community based workers. This study shows that, for autism, these treatments can make a significant difference for the social development of children who would otherwise receive little or no help,” said Professor Vikram Patel, professor of International Mental Health and Wellcome Trust Principal Research Fellow in Clinical Science.
Researchers who also collaborated in this paper also came from, Sangath, Goa, India; Institute of Psychiatry, Rawalpindi Medical College, Pakistan; London School of Hygiene & Tropical Medicine; University of Liverpool and Royal Manchester Children’s Hospital.