Study at USP Evaluates Effectiveness of Parent-Led Therapy for Autism Spectrum Disorder
One of the most important aspects of caring for and treating children with autism spectrum disorder (ASD) is ensuring that they develop their autonomy and ability to communicate. In Brazil, access to therapies that help with this process is often limited due to regional disparities or a lack of trained professionals.
To help improve this situation, psychologist and researcher Elizabeth Shephard and her colleagues are studying and promoting a new approach, PACT (Paediatric Autism Communication Therapy). This is a process mediated by parents, with the support of a specialist, focusing on communication and interaction, based on the child’s interests.
Elizabeth is developing her project at the Institute of Psychiatry at the USP School of Medicine with support from the São Paulo Research Foundation (Fapesp).
The therapy adopted in various health services is ABA (Applied Behavior Analysis), which is a more structured approach, led by a therapist, focusing on changing specific behaviors through incentives. Elizabeth explains that one of the limitations of ABA is the lack of scientific evidence to support its use, especially in the long term and in public health services.
PACT was proposed in 2004 by Jonathan Green, professor of child and adolescent psychiatry at the University of Manchester, with the aim of implementing a more scientifically sound intervention in the UK. Studies have shown that PACT significantly improved children’s social communication and family well-being, with the effects persisting after six years.
But how does therapy work in practice? The process begins with an analysis of a video of the child playing freely with the caregiver. The therapist qualified in PACT uses the video to show the parents the positive aspects of that interaction, reinforcing behaviors that are beneficial for the development of communication. One behavior that is often encouraged, for example, is making comments instead of asking questions.
“Asking too many questions places demands on the language processing of an autistic child. This is very stressful for the child, even overwhelming. So we help adults ask fewer questions and make more comments. The important thing is to use simple language that is relevant to the child’s focus of interest and reinforce what the child wants to communicate,” says Elizabeth.
In the UK, social communication therapies such as PACT have been integrated into the country’s rigorous National Health Service (NHS) as a first-line treatment for people with ASD. The challenge now is to determine whether this benefit would also be present in the Brazilian context.
Cost-effectiveness should be the subject of research starting in 2025. Regarding acceptance and effectiveness, there are already ongoing studies and even some results. In a recent issue of the journal Autism , Elizabeth and her doctoral student, Priscilla Godoy, described that Brazilian parents reported a greater understanding of their children’s needs and an improvement in their children’s social communication after undergoing PACT. The therapy, mediated by them, allowed interactions to occur in a family environment, promoting a more natural and less structured approach than traditional therapies, such as ABA.
One lesson learned from the qualitative study is that possibly closer monitoring of parents at the beginning of therapy, with a more in-depth explanation of the approach, could produce even more interesting results.
Meanwhile, the Floreah project (a play on words with “bloom,” “ASD,” and “ADHD”), which recruited babies as young as 6 months old, seeks to understand the potential benefits of an early PACT-related intervention, iBASIS therapy, in babies who are at risk for developing autism and/or ADHD (attention deficit hyperactivity disorder). Recruitment has now closed, and results are expected to begin being published in 2025.
In order for the studies and application of PACT to have national scope in the medium term, it was also necessary to create a training environment for therapists, explains Elizabeth.
“Priscilla and I opened the training center [PACT Brazil] so that people can train in Portuguese, in Brazil, and at a more affordable cost, less than half of what they would spend at the center in the United Kingdom. We translated and adapted the entire manual to Brazilian Portuguese, ensuring that the meaning was preserved, while still considering cultural and sociodemographic differences,” says the researcher. “So far, 16 professionals have been trained, but our goal is to significantly increase this number in the coming years,” she concludes.