by Anna Diofasi, Humanitas Global
Amidst a multitude of global concerns for people’s health and well-being, developmental disabilities such as autism often get overlooked. It was in recognition of this informational and programmatic deficit, that the UN has declared April 2 World Autism Awareness Day. Despite the relatively small space it occupies on the development agenda, Autism Spectrum Disorder is no small scale concern. It is believed to affect about 1% of the world population – over 700 million people – and it occurs across all geographies, racial, ethnic and socioeconomic groups. Its impact on children, families, and their communities across the globe is considerable, yet research and professional support services are almost exclusively concentrated in developed countries. There is a dearth of information on the condition in the developing world and even less availability and access to support services and treatments despite the importance of early diagnosis and early intervention.
In India, where 10 million people are estimated to live with autism, cases are often misdiagnosed as schizophrenia or another form of mental retardation. This prevents children from participating in behavioral therapy and other treatments that can improve the skills of autistic patients. Moreover, parents in most developing countries have to rely on informal sources of support and information, which might reinforce an inaccurate understanding of the condition. A 2011 survey of Iranian families with children with autism showed that the majority of parents struggled to understand the factors that contribute to the development of autism. There is limited availability of educational resources in languages other than English, making it difficult for non-English speaking families in developing countries to access reliable information. A recent study conducted in Goa, India, highlighted that many teachers also have difficulties to understand or recognize signs of autism spectrum disorder. This makes it more difficult for children with autism and their families to receive adequate support from schools in their communities, often resulting in isolation and stigmatization.
Films and television shows appear to have played an important role in raising awareness about autism in developing countries where access to formal informational materials is limited. In the Goa study, both teachers and parents cited that storylines in popular media that included a character with autism improved both their own and their community’s understanding of the condition and helped reduce stigma. There are also numerous encouraging examples of community-based education and intervention, such as the Ann Sullivan Center in Peru (CASP), which provides an immersive environment and family-centered curriculum for over 400 students with autism and other developmental disorders. As a result of CASP’s focus on leveraging the strengths and talents of each child, many of its graduates are now working in positions at the Ministry of Health or with international companies like Alcoa that allow them to make use of their diverse skills and abilities.
If we are to realize a truly inclusive world, with opportunities for prosperity for all, we need to strengthen institutional capacity both in developed and developing countries. We need to raise awareness and improve information for parents, educators, health workers, and the community at large. We also need to improve coordination for health, education, and additional support services to foster early diagnosis and intervention for children with autism spectrum disorder. The first step we can take is to learn more about the condition. For more information on World Autism Awareness Day, and autism spectrum disorder, you can find information on the UN’s World Autism Awareness Day site or on the website for the Light It Up Blue for Autism Awareness initiative.
