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Pioneering autism research at Evelina London

Posted on Friday 28th October 2016
Eben Berry and Mum Naomi

Naomi Berry and her son Eben, now 14, took part in the original PACT study.

A study which involved experts from Evelina London Children's Hospital has found that helping parents to communicate better with their child at an early age can reduce the severity of autism symptoms for years.

Autism spectrum disorder is a developmental disorder that affects about one in 100 people. Research published in medical journal, The Lancet, showed that the effects of early intervention continued for six years after the end of treatment. It is the first time a long-term effect of early intervention for autism has been identified.

The study looks at the Preschool Autism Communication Trial (PACT) that compared early intervention with conventional treatment. The intervention involves a speech and language therapist filming a parent and child interacting and then discussing ways that the parent can help to enhance the child’s social communication. Researchers found that preschool children who received the intervention had less severe overall symptoms six years later compared with those receiving usual treatment, with improved social communication and reduced repetitive behaviours. At follow up, there was a 17 per cent reduction in the proportion of children with severe symptoms in the group who took part in the filming.

However, there was no significant difference between the two groups on measures of language, anxiety, challenging behaviours or depression, and it is recognised that the children will require ongoing support.

Dr Vicky Slonims, senior consultant speech and language therapist at Evelina London, was one of the principal investigators of the study and led the delivery of the treatment to children in London who took part. She said: “The research is the first to show an improvement in autism symptoms over many years, following treatment. These symptoms were previously thought to be very resistant to change. It indicates that a focus on the very earliest stages of social communication is very beneficial for children with autism.”

Naomi and Mike Berry and their son Eben, now 14, were involved with the PACT study. Their son Jacob, 12, is also autistic and they believe the methods they learnt on the study have benefitted both children.

Naomi, a learning support assistant from Eltham in south-east London, said: “We were told about the PACT study when Eben was diagnosed at three and a half. He was finding it very hard to communicate, especially when anxious, and would scream, cry and roll around on the floor because he couldn’t express what the problem was.

“The therapist made me think about my approach and advised me to hold back more. In the first film of my interaction with Eben, I realised I was talking the whole time and encouraging him to play with me. The next time she said I shouldn’t talk at all and wait for him to initiate play first. Over time his eye contact started to improve, he was more comfortable looking at me and being close to me and passed me his toys. It was a valuable tool to learn and gradually his speech and communication improved.

“The method helped me and Mike to understand Eben more as a person and how his mind worked. The skills we learned are now part of our everyday life so it’s been invaluable for us and changed the way we approach helping our children.

“Years later Eben is doing well and is in mainstream school. He still finds social situations hard but we are 100 per cent sure that he would be struggling a lot more with his communication had he not been in the PACT study. We can’t praise it enough.”

Other centres involved in the research, which was funded by the Medical Research Council, were Northumberland, Tyne and Wear NHS Foundation Trust, Manchester Children’s Hospital, Manchester Academic Health Sciences Centre, King’s College London, the University of Manchester and Newcastle University.

New research

The team at Evelina London has recently started a new study funded by the National Institute for Health Research (NIHR) which involves a larger number of children with autism, looking specifically to see if children can transfer the skills learnt in different contexts when interacting with their parents. This study will involve working with parents at home and staff in schools to help them interact with the child.

To find out more about autism spectrum disorder visit NHS Choices.