Chat app offers key to unlocking stories on autism in Chinese families

Family, as a core value of the Chinese culture, sometimes can be a double-edged sword. On one hand, family members have strong bonding relationships with each other and everything good and bad. On the other hand, when something unfortunate happens to one of the members, the whole family might get upset and blame themselves, thus feeling shameful when they most need to reach out for help.

After months of effort, I was finally approved to participate in a seminar last fall for parents of autistic children, organized by the Charles B. Wang Community Health Center in New York City. The organizer reminded me many times that I could not take photos or video during the seminar, and that I should not approach any participants unless they were willing to talk to me. All of the parents at the meeting were Chinese. After I introduced myself and my reporting project, most of the parents look at me with kindness and, probably, some appreciation. We practiced stress-release yoga together and listened to a guest speaker talk about how to apply for specialized school, during which time several parents complained about the long wait times to get their children in. After the seminar, I waited until the last person left, but no one wanted to talk to me.

In my previous blog post, I shared my motivation and plan for this project, which I reported for the 2015 National Fellowship. I wrote about how barriers prevented parents from reaching out for help. Now the barriers were mine. I started to ask everyone I met if they knew anyone who has autism. The strange thing is that people didn’t want to talk about it right away, but often after our conversation they would often text me to suggest that I talk to someone whose child might have autism. They would provide the social network contact information. The idea occurred to me that maybe social networks are a better way for people to talk about things they don’t otherwise want to talk about.

The breakthrough came when I happened to talk to an insurance saleswoman who had helped a parent apply for long-term care for her autistic daughter. The sales lady sent me the mother’s WeChat name card and after she accepted my request to connect, we started to talk immediately. Jackie is a first generation immigrant from Shantou, China. She used to work in a community organization and is quite talkative. And unlike many Chinese parents who want to hide their autistic children, Jackie is very proud of her daughter and tells everyone how pretty she is.

Jackie introduced me to several other parents through WeChat and I started to listen to their stories. Only one of them was willing to be interviewed on camera besides Jackie. But the good thing is that I finally connected with the invisible group of autistic Chinese families. Through them, I found CARES, a community organization helping special needs children that appears to be very popular among the parents but little known outside the group.

While I was working on my project, the Charles B. Wang Community Health Center started up their first official WeChat account, and their special needs team started their own WeChat group. But there is still a language barrier. Most WeChat communications only exist between parents and unauthorized experts, such as herbal medicine therapists or nutritionists who speak Chinese. This results in much incorrect information, but unfortunately, this is the best help a lot of the parents can find. For Chinese parents of autistic children, first, they run into the culture barrier, and then, the language barrier.

Here are a few things I have learned from reporting on this subject:

Social networking software is extremely helpful in communicating with people who don’t want to engage in face-to-face conversations. Every time I speak to parents in “real life,” they always tell me that they don’t have anything to say. But on WeChat, they sent me text messages and voice messages, almost as if they had entirely different personalities. Many of them were happy to refer me to other parents facing similar situations. I carefully formed an interview request statement for parents to pass along, and it turned out to be very helpful.

Dig deep with one person and you might find more sources, but first find the right person. During this project, I struggled a lot in finding the right person. I talked to an herbal medicine therapist — he claimed he could cure autism with Chinese herbs — by phone and met him several times, but I finally figured out that I was completely wasting my time. I now realize I should have started with the family members. They tell the best stories, and they also turned out to be unexpectedly resourceful.

When there is no specific data about the issue, ask why. Lack of data can also be a story. I also struggled a lot in finding statistics data on autism within Chinese American communities. I searched online and asked everyone I interviewed, but found nothing. And I kept asking why, until it nearly became my storyline: In the third story, I talked about how financial, cultural and language barriers isolate Chinese families dealing with autism from mainstream autistic communities, and due to this “island effect,” community health agencies are unable to gather enough reports or data. That in turn makes it difficult to secure resources and funding to deliver meaningful help.

Consider all distribution channels. In addition to the TV version, I also made a WeChat version of my story and used social media to get back to my interviewees. Social media spreads the word much faster, and to a broader audience, than TV alone. And unlike TV, the video link shared via WeChat can be viewed many times. With the permission from my station, I also sent a copy to the Charles B. Wang Community Health Center. They told me they plan to play the video in the lobby and the waiting room of the pediatric department.

Emails with the video link have also been sent to city officials to let them know about these unaddressed health issues in the Chinese community. One council member replied that he would love to hold a special event on autism awareness day in the community, and a state Senator also said he would pay greater attention to the challenges posed by language barriers when it comes to receiving health coverage.

I hope these tips are helpful, and I would love to talk to any reporters or editors who are reporting on similar issues or looking for health stories from Asian communities. Contact me at melodycao@sinovision.net or iamcxl@gmail.com.

Find Melody Cao's fellowship stories for SinoVision here.