The Autism Speaks science team traveled to Shanghai, China, last week with the goal of enhancing collaboration among Chinese and North American scientists. Despite the challenges of speaking different languages, we learned a lot from each other. Our Chinese colleagues were eager to hear about new research and treatments being developed in North America. The Americans were impressed with the technological prowess of the Chinese.
A prime example of this technological power is the Beijing Genome Institute, the largest genome sequencing institution in the world and a new Autism Speaks partner. In the coming year, the Beijing Genome Institute will be sequencing the DNA of families participating in our Autism Genome Resource Exchange (AGRE) program, allowing us to create the world’s largest whole genome sequence library for autism research. (See our related news item.)
Another example is a recently launched Chinese program that sends text messages to new mothers, alerting them to the early signs of autism. Chinese researchers are studying whether this innovative “eHealth” strategy results in better referral, assessment and intervention rates for children with early symptoms.
Although my conversations and learnings from my Chinese colleagues were enlightening and we planned many future collaborations, the most significant moment for me was talking to 200 Chinese parents of children with autism. I walked into a room filled with mothers and fathers eager to hear new information about autism. Through a translator, I described new research findings and treatments and fielded questions from the audience.
The questions were remarkably similar to those I hear from parents in the United States. One mother told me that her son had frequent tummy aches and constipation; she wondered if this could be related to his autism. Another parent asked what she should do about her daughter’s fear of fireworks, a common part of special events here. Should she keep her at home and miss the family outings? A father showed me a large bag filled with medicines he had purchased through the mail and asked if I thought they would help his child.
We talked about the association between autism and gastrointestinal problems and how treating these physical problems can relieve discomfort and, so, help children gain more from their educational programs. We talked about auditory sensitivities and discussed a range of strategies for helping children cope with loud noises. And we talked about how to evaluate whether a treatment is truly effective and safe for a child.
As our conversation continued, I was struck by the fact that, although China and the United States are very different cultures, autism is a common bond. Parents across the globe are looking for answers to help their children. My hope is that Autism Speaks Global Autism Public Health Initiative will be able to make a difference for these families. By partnering with scientists and clinicians in China, we can translate and adapt many of the tool kits and other resources we have developed here in North America—while also learning from our colleagues and families in China.