Looking for Answers in the Valley of a Thousand Hills
This guest post is by Andy Shih, Ph.D., the Vice President of Scientific Affairs at Autism Speaks. He oversees the etiology portfolio, which includes research in genetics, environmental sciences, and epidemiology. He was responsible for the formation and development of Autism Speaks sponsored international autism research collaborations, the Autism Genome Project and the Baby Siblings Research Consortium.
“On the left side of that dam over there, where middle class families live, you have electricity and running water,” he gestured out the window, “but on the other side, where most of the poor families served by our clinic live, there’s still nothing.”
Shuaib is impatient and always pushing for more progress. He leads an Autism Speaks-funded prevalence study in the Valley, the first of its kind in Africa. The study aims to generate data to inform local policy and service development, future research directions, and important clues about genetic and environmental risk factors for autism.
Shuaib was also one of the many local and international advocates and experts we heard from over three busy days at the conference, “Autism and Developmental Disabilities the South African Context,” that Autism Speaks co-sponsored with the KwaZulu Natal University in Durban. Among the many experts and stakeholders who contributed to a comprehensive exploration of the needs of the South African autism community and possible collaborations were Mrs. Mathato Mosisili, First Lady of Lesotho, Mrs. Brigitte Kobenan, founder of Autism Community of Africa, and Ms. Jill Stacey, National Director of Autism South Africa.
While some of the problems discussed, like the lack of services and need for more public and professional awareness, would resonate with any family from the US, South Africa’s unique history and culture also complicate the daily challenges.
“For a mom who wakes up every morning worrying about finding a way to feed her family, a child who doesn’t interact is not necessarily a problem,” explained Shuaib. “She is probably going to see it as a blessing that gives more time for her other problems, not a cause for concern.” Eventually, though, this mother will likely begin to worry as she sees other children beginning to interact and talk while her child falls behind.
Indeed, one of the recurring themes at the conference was how best to prioritize autism and developmental disabilities when so many life-threatening diseases or conditions, such as AIDS, malaria, and malnutrition, compete for limited public health resources.
To someone like Shuaib, however, who because of his own rural upbringing without electricity or running water is probably more attuned to life in the country, such public health policy-making is overly simplistic. As we walked around a small community clinic that anchors our study and staffed mostly by lay community workers trained by the researchers, he drew diagrams in the palm of his hand to explain how autism and developmental disabilities should be a national public health priority for developing countries like South Africa.
He argues that as child mortality decreases, simple math predicts an increase in number of children with developmental disabilities. So instead of seeing mortality and developmental disorders like autism as two distinct public health challenges, they should be tackled as parts of the same problem. Shuaib and his colleagues believe that by addressing autism and related disorders now, South Africa’s public health system can get ahead of the curve, help maximize outcomes for affected individuals and families, and minimize long term costs to society.
During our brief stay, we came to appreciate words like “ironic” as shorthand for the frustration over slow rate of progress almost two decades after the end of Apartheid. I’ve heard more than once how incongruent it seems for a country that hosted a hugely successful World Cup to not even be able to meet the basic healthcare needs of many of its people.
However, the impatience shared by Shuaib and other stakeholders we met in Durban seemed rooted more in optimism than despair. “South Africa is a country in transition,” Shuaib offered, “we are becoming a developed country, and there is so much we can do improve the life of our people if we only have the foresight and will to act.”