Our Global Autism Public Health team reports back from the World Health Organization’s first Parent Skills Training workshop for autism
By Lucia Murillo, Autism Speaks assistant director of education research, and Kara Reagon, associate director of dissemination science. Both are members of Autism Speaks Global Autism Public Health (GAPH) team.
We’re pleased to report back from the first international “Capacity Building Workshop on Parent Skills Training for Developmental Disorders,” in Geneva last week.
Co-sponsored by Autism Speaks and the World Health Organization (WHO), the historic workshop grew out of a global effort to develop effective and practical interventions that work in communities where access to specialists is limited.
During the workshop, we helped train more than 30 master trainers, who have now returned to their countries to develop parent skills training programs. Participants included healthcare professionals, parents and government officials from Peru, India, Canada, Palestine, Russia, Kyrgyzstan, Turkey, United Arab Emirates, Iran, China, Bangladesh, Pakistan, Ethiopia, Malaysia, Egypt, Vietnam, Sri Lanka and the United States.
A model for low-resource communities
Our funded researchers helped develop this training for use by non-specialists. Importantly, the training includes strategies that can be adapted in culturally appropriate ways around the world.
Until now, programs designed to train parents to deliver autism interventions have been based on Western care models. Unfortunately, these approaches have proven impractical or otherwise inappropriate in much of the world.
As many readers of this blog column know, most children with autism aren’t getting the services they need. This “treatment gap” is especially grim in communities – from rural America to Bangladesh – that lack of access to specialists trained in proven interventions such as Applied Behavior Analysis (ABA).
It’s also become clear that simply training more professional service providers is not enough to meet the enormous and growing needs of our global community.
Fortunately, recent research – including studies funded by Autism Speaks – shows that we can empower parents and other caregivers to provide their children with effective interventions. They just need the right training and community-based support.
The goal of our program is to train parent-trainers. These need to be non-specialists already working in their communities. They include health workers, teachers and parents motivated to teach other parents.
In Geneva, we were training the first “master trainers,” who will now start training programs of their own in their countries.
The strategies we taught distilled what research has told us about the key “active ingredients” of a successful behavioral treatment program. Topics included understanding and promoting communication, learning through play, addressing challenging behaviors and ensuring caregiver well-being.
By empowering parents and caregivers with these essential teaching and support skills, we have an unprecedented opportunity to enhance outcomes for children and families living with autism and other developmental disabilities around the world.
Last week’s Geneva workshop represented the first step in an international field trial we will help launch in the coming months. It will evaluate the effectiveness of the Parent Skills Training program in communities with very different healthcare systems.
What we learn will enable us to further improve our parent training program for an official global rollout by the World Health Organization – hopefully within the next two years.
Autism Speaks will continue to work closely with WHO and our colleagues and families around the world. This will include providing technical support as needed.
We have good reason to hope that these evidence-based interventions will be a game-changer for all who struggle with autism around the world.
In closing we want to thank the World Health Organization and our Autism Speaks community for making this work possible.