Autism Speaks, Grand Challenges Canada and Pakistan’s Human Development Research Foundation are partnering on a major rollout of an innovative program for families of children with autism and intellectual disabilities.
The program integrates two components: first, the Parent Skills Training program, developed by Autism Speaks and pilot tested with the World Health Organization; and second, the Family Networks for Kids innovation, piloted by the Human Development Research Foundation with the support of Grand Challenges Canada.
The Parent Skills Training program empowers parents and other caregivers to work with children who have autism in practical, culturally sensitive ways using strategies that research has shown to be effective.
Read more about the Autism Speaks/WHO Parent Skills Training program here.
Developmental disorders including autism and intellectual disabilities affect an estimated 13.2 million Pakistani children – almost all of them untreated due to poor awareness, stigma and lack of specialist services outside urban areas. The new project will deliver and test the effectiveness of Parent Skills Training across a rural area of Pakistan that is home to more than a million people.
“It is so exciting to see this vision – for a new system of evidence-based care delivered by nonspecialists – becoming a reality,” says Andy Shih, Autism Speaks senior vice president for scientific affairs.
“Most importantly, we want to learn two things from this ambitious project,” Dr. Shih adds. “How well does our current Parent Skills Training program work when you scale up to a population level and how can we integrate a program such as this into a country’s existing systems of health, education and social protection.”
Through its Global Autism Public Health Initiative (GAPH), Autism Speaks has a special interest in developing affordable, evidence-based autism screening methods and interventions for children in countries where most families lack access to professional services.
Chief among these is the Parent Skills Training program. Through the program, WHO and Autism Speaks staff and researchers have begun training highly motivated parents, educators and community health workers to serve as Master Trainers in countries and communities that lack access to professional autism specialists and therapists. The Master Trainers, in turn, train community members – including other parents and teachers – who in turn teach still more families and caregivers how to work with children who have autism.
Autism Speaks and the WHO pilot tested the Parent Skills Training program in China last year and has trainings in the planning in other world regions.
The Pakistani project is the first large-scale deployment of Parent Skills Training. It will include a rigorous study to evaluate the approach’s effectiveness on this large scale.
Working with local partners
The project will build on the Family Networks for Kids (FaNs) program created by Pakistan’s Human Development Research Foundation.
Funded by Grand Challenges Canada, FaNs is designed to guide parents in recognizing and helping children cope with mental health issues. Grand Challenges Canada, which is funded by the Government of Canada, is dedicated to supporting bold ideas with big impact in global health.
In each Family Network, family volunteers called “champions” learn to help both with their own children and neighboring families whose children need such services.
As part of the new partnership with Autism Speaks and Grand Challenges Canada, FaNs will start screening 27,000 families for autism and intellectual disabilities. They will do so using wireless phone connections to an Interactive Voice Response system. The system prompts parents through a screening questionnaire. This reduces the need for rural families to travel to distant medical centers or wait for health workers to visit to their villages for screening.
Importantly, the new funding will also allow the foundation to train 300 of its champions to deliver the Autism Speaks/WHO Parent Skills Training to local parents, teachers and other caregivers. The training will employ electronic tablets loaded with interactive learning modules that include story-telling characters.
The goal is to provide these services to at least 3,000 children and teens.
Read more about the FaNs program and its results here.
To evaluate the effectiveness of the program, researchers will compare daily function and behavior of children whose parents receive the training with that of a control group of children whose parents are wait-listed to receive it after the study period.
“In many ways, this is no different than developing a medicine,” Dr. Shih says. “We need to see how Parent Skills Training works in real-life communities on a large scale. Only then can we see if we need to further refine our methods to maximize their benefits to children and families.”
World Vision Pakistan and Pakistan’s Federal Ministry of National Health Services have pledged to provide additional support for the project. The Pakistani government has also expressed interest in assessing the program for wider adoption across Pakistan.
Learn more about Autism Speaks Global Autism Public Health initiative here.
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