Parent-led autism therapy successfully tried out in India, Pakistan

“This is a first as researchers from an Indian NGO, Goa-based Sangath, have collaborated with universities of Manchester and Liverpool and partners in Pakistan to adapt a parent-led autism therapy and successfully tested it at Goa and Rawalpindi, with the aim of improving treatment for an estimated 5 million children in the region with the disorder,” said lead author of the study, Professor Jonathan Green from the University of Manchester.

Autism is one of the world’s fastest growing developmental challenges; it affects up to 70 million people and has a severe effect on the social development of children. In developed countries, children are able to receive specialised treatment to improve their interaction with their families. But such specialised treatment is not available in many parts of India.

As part of the Autism Speaks Global Autism Public Health Initiative, researchers adapted a leading UK therapy method known as PACT, which help parents interact better with their autistic child, said Dr Gauri Divan, clinical lead of the study in India.

The method known as PASS was taught to non-specialist health workers in Goa, along with their counterparts in Rawalpindi in Pakistan, who in turn worked with parents of 32 autistic children who were part of the trial.

“It took two researchers — one from India and a child psychiatrist, Ayesha Minhas, from Pakistan — to adapt this intervention strategy” said Divan, a paediatrician from Goa.

“We have no experience in dealing with autistic children, but this programme gave us the opportunity to meet the challenges and then adapt it to our own cultural situation. I went on to train three graduates (non-specialist health workers) in Goa and Ayesha trained three others in Pakistan. They approached parents of these children and taught them therapeutic strategies,” explained Dr Divan.

As many as 65 children with autism spectrum disorder, aged between 2 and 9 years, were involved in the study. While 32 children were included in the intervention arm — a 12-session package over eight months — 33 were included in the control arm and they continued regular treatment for autism.

Children with autism spectrum disorder find it very difficult to communicate their feelings. So the relationship between the mother and the child is all about commands, instead of to-and-fro communication, pointed out Divan.

“Our strategy involved observing the child and picking up weak communication signals. It could be something very basic like a child who wants to play with a toy but is unable to express that to his mother. So, we recorded a video of the mother and child playing together and analysed how she was not able to pick up the signals. We got her back on track and the parent did not get too stressed about what the child wants. This also improves the child’s confidence level,” said Divan.

The therapy was delivered in the parents’ first language. The treatment began with a session on the causes of this condition and misconceptions about it.

At the end of the 12-week period, the children underwent assessments using recognised methods and were found to be more likely to initiate communication with their parents compared to the comparison group, said Dr Vikram Patel, one of the principal investigators of the study and Professor of International Mental Health at the London School of Hygiene and Tropical Medicine, UK.

“This pioneering study shows us that it is possible to implement high-quality evidence-based intervention in low-resource communities, even when there are few or no specialists,” said Andy Shih, vice-president of scientific affairs in Autism Speaks.