Beyond Stigma

When I've talked to researchers about the reportedly low prevalence of autism outside of the U.S., Canada and the U.K., the word that comes up repeatedly is ‘stigma.’ Some South Korean families, to use an oft-cited example, think of autism as a mark of shame, and are hesitant to seek medical help for their child's developmental problems.Less talked about are the parents in developing countries who do, in fact, seek help — sometimes hundreds of miles from home — but have trouble getting it because of poor healthcare infrastructure, high costs, long lines and, most dishearteningly, doctors' lack of awareness. That was what struck me the most in a survey about Rett syndrome in Chinese families, published 21 November in the American Journal of Medical Genetics Part A.Read more at...SFARI, December 2011.