This past week, I’ve been doing a lot of research to familiarize myself with the updated literature about autism globally, what’s being done in other countries, etc etc. In the process, I’ve learned soooo much more about autism in other countries, and I am full of even more passion and conviction about what we do here at the Global Autism Project.
Outside of the United States, Europe, the UK, Australia, and Canada (sometimes called the “western world”) the next top five producers of autism research are Japan, China, Brazil, India, and Turkey. Yet China, one of these five, didn’t have their first documented case of autism until 1982, about 40 years after Kanner’s first description of autism. There are only two countries on the entire continent of Africa that have published any research.
Research isn’t everything though—there are about 100 countries in the world that have formal autism advocacy or support organizations. This is great, but on the other hand… this means that almost a hundred countries don’t. Within the past two years, the first article has been published out of Iran about Iranian families experience of having a child with autism, and what that means for working with families of children with autism in developing countries.
I find myself really hopeful and energized by what I’ve found. On the one hand, the research from other countries about autism has EXPLODED in the past 5 years. This is incredible; we know that autism awareness and acceptance is happing all across the globe, even as we speak. It also highlights how much work there is to do and how valuable our work is. 74% of parents in the Iranian study reported they don’t feel physically well, indicating increased physical stress. Mothers in South Korea still prefer a diagnosis of reactive attachment disorder to autism, because it means they can take the blame for failed parenting, as opposed to having the “genetic black mark” of autism on their family.
Someday, I want all of these parents to know the name of the Global Autism Project, and be filled with hope. I want them to know that autism is not a death sentence, and I want it to really NOT be a death sentence. I want them to have something to believe in. Every day I’m grateful that Molly and the Global Autism Project found me and gave me something to believe in. I can only hope the same for families all over the world…
Research and Training Coordinator