Global Autism Public Health Initiative Background Report: India, Chile, and South Africa

Background: Autism Speaks, the world's largest autism advocacy and science organization, has begun to enter into partnerships with various countries through its Global Autism Public Health Initiative (GAPH) that aims to increase public and professional awareness of autism spectrum disorders (ASD) worldwide, improve service delivery, and enhance research expertise and international collaboration through training of international researchers. Little is currently known about the global epidemiology rates of autism because of major differences in culture and subsequent differences in screening and diagnostic techniques around the world. In addition, limited awareness and understanding of autism among both parents and professionals can lead to stigma, which in turn may limit access to autism diagnostic services. Objectives: To move forward in creating global partnerships, preliminary information must be gathered to inform Autism Speaks' unique plan of action for each territory. This research examines the existing awareness, research, and service infrastructure in India, Chile, and South Africa, and identifies potential challenges and specific areas of needed improvement in each country. Methods: The first step in creating a background report was to compile a list of ten core questions focused on the steps a family takes to receive a diagnosis and appropriate services for their child as well as the infrastructure currently in place for awareness, services, and research. Once questions were developed, the approach taken in finding answers was primarily internet based research. Information was collected regarding public and professional awareness of autism, research capabilities, and service provision in India, Chile, and South Africa. The results were organized as answers under each core question and then evaluated to determine which key organizations may be valuable GAPH partners, but also to identify specific challenges each country faces and areas where the current system of diagnosis and treatment needs improvement. Results: It was found that while each country is lacking in the three areas of awareness, services, and research to varying degrees, they each face unique challenges. India struggles most with the incredible diversity of its peoples which creates difficulties when unifying support systems and awareness campaigns across multiple languages and cultures. Chile, on the other hand, has to combat the prevailing attitudes that Thimerosal-containing vaccines are the cause of autism and detoxification can cure the disease in some children. In South Africa, the greatest challenge is shared by all three countries: resources are limited and often inaccessible because of the area's physical size. Conclusions: To overcome the many present challenges, researchers, service providers, parents, and awareness groups must work together to bring about key changes to aid the autism community.