Breaking the silence

While in Nepal, our group visited Autism Care Nepal, a facility created and staffed by parents of children diagnosed with autism. As is our approach to so many challenges, we Americans have forged ahead in educating parents about a continuum of autistic disorders and campaigning for more research and more advocacy, while in Nepal and elsewhere around the globe little is known about the diagnosis or how to address it at home and in social institutions.

The people I met at Autism Care Nepal are remarkable. Sunita and Kapendra, both physicians, started the center when their son Krit was formally diagnosed with autism. They and a host of parents take turns running the center–on top of their other obligations at work and home–and have brought in experts from India and the U.S. to offer workshops for families who want to know more about how to improve their children’s social and speech skills and better their relationships at home and in the community.

In Nepal, where the family is the center of everyday life, children with autism are often shunned. Mothers, in particular, are blamed for the bad karma that led to the disorder, and fathers may desert their wives and children to escape shame by association. The sheer lack of resources in the country translates into minimal or no diagnostic or treatment services for families of children with speech delays or other signs of an array of autism spectrum disorders. At best, many families rely on a favored deity to break their child’s silence.

All of these realities were difficult to process as our group watched children jumping onto swings and flying down slides in the play area behind the small building that houses Autism Care Nepal. Most were fairly young, but older children participated as well since they are prohibited from attending school where they might disrupt the learning environment for “normal” children.

The silence was heartbreaking and the advocates, parents with purpose and passion, were inspiring. I decided to write a two-part series on the situation for Autism Spectrum Quarterly. An excerpt from part one of the series is available at http://www.asquarterly.com/issues/13/articles/146/

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