We launch a global initiative for parent education and training in autism spectrum disorder. This is a joint project between the Naked Heart Foundation, the University of Cape Town and the University of Edinburgh.
Autism spectrum disorder (ASD) is recognised by the World Health Organisation (WHO) as a global public health priority and most people with ASD live in low- and middle-income countries where services are extremely limited (1). One of the fundamental WHO recommendations for ASD is provision of parent education and training to all families after the autism diagnosis has been made (1).
The goal of such training is to empower families to support their child and family for lifelong learning and positive advocacy. There are very few parent education and training (PET) programmes available, most of them developed and evaluated in high-income countries (2).
At present, there are no PET programmes for autism that have been designed from the outset with global implementation in culturally- and linguistically-diverse settings in mind.
Using principles of implementation science research and community-based participatory methods this ambitious 3-year project will build a new evidence-informed, culturally adaptable PET programme responding to the needs of families raising children with autism in low resource settings.
Professor Petrus J de Vries, Centre for Autism Research in Africa, Division of Child & Adolescent Psychiatry, University of Cape Town, South Africa:
“The home and family context is the most important place for autistic people to grow and learn. In this new project, we will develop a freely-available and adaptable programme to support families who live with autism around the world. By providing parents, siblings, and caregivers with knowledge, strategies and wellbeing tools, we can make sure that families are empowered and that all people with autism can thrive. I am very excited about the vast potential of this partnership project between the Centre for Autism Research in Africa at the University of Cape Town, and Naked Heart Foundation.”
Natalia Vodianova, founder of Naked Heart Foundation:
“My own experience of being a sibling of a person with multiple disabilities, including ASD, and the experience of my family have turned out to be both a great challenge and a huge inspiration. This inspiration has been one of the driving forces behind the work that Naked Heart Foundation does for almost 19 years. The work, in which a family has always been in the centre of activities. Autism does not have boundaries, but so as the Parent Education and Training (PET) programmes, that over the years have proven their effectiveness. And our aim is to put together such PET programme, that will be available in the formats and languages, suitable for families and communities across different settings.”
(1) World Health Organisation (2013). Meeting report: Autism spectrum disorder & other developmental disorders from raising awareness to building capacity. WHO, Geneva, Switzerland. 16-18 September 2013. Accessed through http://apps.who.int/iris/handle/10665/103312;
Abubakar, A., Ssewanyana, D., de Vries, P.J., & Newton, C.R. (2016). Autism spectrum disorders in sub-Saharan Africa. Lancet Psychiatry. 3(9): 800-802.
(2) Dawson-Squibb, J.J., David, E.L., & de Vries, P.L. (2019). Scoping the evidence for earlybird and earlybird plus, two UK-developed parent education and training programmes for autism spectrum disorder. Autism, 23: 542-555.