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Calls to Action

KwaZulu Nata KZN Autism-Study

South Africa

Little is known about how frequently Autism Spectrum Disorder (ASD) occurs in children in developing countries. The primary aim of the KZN Autism Study is to find out how best to identify children who are suffering from ASD in South Africa. Without understanding how autism occurs in South Africa, researchers and service providers cannot plan on how to help those children and families suffering with the burden of autism. This is particularly true of indigenous African children with ASD, who often do not have access to services. In addition to the limited information about autism epidemiology and the lack of service availability, South Africa is a region of the world with a very high prevalence of HIV infection. This presents a unique opportunity to study autism in the context of HIV infection and explore the possible link between the two. The committed health personnel from Inkosi Albert Luthuli Central Hospital (IALCH), Phoenix Assessment and Therapy Center (PATC), and the ASENZE Study, along with personnel from Columbia University and support from the KZN Department of Health, will design and carry out a study that will test how best to identify and assess children with ASD in the Zulu language and culture, explore the prevalence of autism in South Africa, and further explore the hypothesized relationship between autism and HIV infection. The team will adapt and translate the Ten Questions (TQ), Social Communications Questionnaire (SCQ), and Autism Diagnostic Observation Schedule (ADOS), and use those tools to conduct a pilot epidemiology study that will identify a population of children with autism in South Africa. In addition, this group will work conduct important ethnographic analyses which will explore awareness and understanding of autism and how autism is perceived by the community. Ultimately, this study will develop the necessary research infrastructure to allow for the identification of children with autism in South Africa, will shed light on the awareness of and service availability for autism in the region, and will provide the groundwork to investigate the possible connection between HIV infection and autism.