Although the rate of diagnosed cases of autism continues to climb in the United States, in many parts of the world children with autism remain hidden from view, undiagnosed, and unwelcome in schools.
The overwhelming need to do something about the international narrative led Ed.M. candidates Syeda Farwa Fatima and Sihan Yang, and alum Myra LalDin, Ed.M.’15, to launch this semester the Stages Learning Global Autism Awareness Project (GAAP), which aims to raise autism awareness in developing countries.
While they were working at Stages Learning, an educational publishing company founded by Angela Nelson, Ed.M.’13, that provides autism learning tools to therapists, teachers, and parents, their conversations with Nelson and Stages Learning Content Director Leslie Stebbins, Ed.M.’10, shifted to the challenges their home countries — China and Pakistan — faced in helping children with autism.
“In countries like Pakistan and China there is still significant social stigma attached to autism or other conditions related to mental illness or intellectual challenge. Compounded by a lack of medical professionals who are trained on autism diagnosis and treatment, this leads families to avoid seeking help, and even to hide their private struggles from family and friends,” Nelson says. “A recent study in Karachi, Pakistan found that more than half of general practitioners had never heard the term ‘autism.’ Tragically, some families even feel they are somehow at fault for having a child with special needs. By simply providing basic information, we hope to reduce stigma, while increasing awareness among families and the professionals who are in the best position to provide diagnosis and treatment.”
Fatima, Yang, and LalDin jumped at the opportunity to work on the project, narrowing the focus to their home countries. Fatima and LalDin are both from Pakistan. And, Yang is from China. They performed a needs assessment and developed the immediate goal of increasing autism awareness and pushing for early diagnosis. The latter is vital for children with autism because early identification and treatment leads to improved outcomes.
Yang, a master’s candidate in the Language and Literacy Program, had always wondered why as an educator she knew little about autism before arriving on campus. “When I came to HGSE, I met many people who cared about children with special needs. Many classroom discussions brought up children with autism,” Yang says. “I couldn’t help but wonder how I didn’t know anything about autism or know anyone with autism considering the large population and percentage of children with autism in general.”
Fatima, a master’s candidate in the International Education Policy Program, met Yang while working on a video about students with special needs earlier this year. Fatima’s experience with the issues was personal, having witnessed her brother with special needs over the years. During the break, she conducted a study to understand special education in Pakistan. “There are not many resources for students with autism. It’s a fairly new idea for the community,” she says.
GAAP’s first initiative will be a series of blog posts and a public service video to help get the word out to parents and teachers in Pakistan and China. “There is a lot to do in developing countries in terms of countering that stigma. Unless that stigma is countered, it is very hard to do anything to allow children with autism to participate in schools and the community,” Fatima says.
“Awareness is the first step and is essential for early diagnosis. Diagnosing autism as early as possible, both in the U.S. and in other countries, can lead to early intervention and treatment that can greatly reduce symptoms for many children and help them make meaningful progress as well as promote independence and improve quality of life,” Nelson says. “We now have treatment options that have strong research support that are becoming more widespread in the U.S., and we would like to see these treatments become more commonplace in countries such as Pakistan and China.”