This guest post is by Andy Shih, Ph.D., the Vice President of Scientific Affairs at Autism Speaks.
When I heard about the terrible earthquake and tsunami in northeastern Japan the early morning of March 11, I immediately emailed parents and professionals I met in Tokyo and Nagoya last summer. Fortunately, they were all fine, although many said it was the strongest quake they’ve ever experienced. But other than the inconvenience of some of them having to spend the night in their offices because the trains were not running, most of them, like the rest of the country, seemed to take things in stride and tried to get back to normal.
Normal proved to be elusive in the days that followed as the scope of the devastation became more clear. And with the emerging realization of a possible nuclear crisis, the tone of emails from our colleagues and friends also changed.
On March 13, a researcher wrote: “It is not our culture to ask for help from others, but I don’t think it is the situation to worry about people’s perception.” A day later, a parent wrote: “There should be a considerable number of people with autism who are panicking with this truly unpredictable situation. They can be staying at home with fear, or at evacuation camps that are totally unfamiliar to them…”
Worried about a growing crisis for our families our staff fanned out to seek expert advice on how we can best help. The answer was to make an exception and use Autism Cares, an Autism Speaks program historically focused on helping individuals and families affected by natural disasters in the U.S., to help our families in Japan.
So as recommendations from experts started to come in, we launched our fund-raising effort on Autism Cares.
All experts we’ve contacted so far, from science advisers like Ezra Susser, Ph.D. of Columbia University School of Public Health, and a member of our Scientific Advisory Committee, to professional organizations like Direct Relief, recommend that given the many ongoing international aid efforts already in place, targeting the Japanese autism community might be the best use of Autism Speaks’ efforts and resources.
They also suggested Autism Speaks work through a leading community organization that shares our interests and goals, since they probably know the needs on the ground best. Given Autism Speaks is already in contact with several key autism/developmental disability advocacy organizations in Japan, the consensus was that we partner with them to speed relief to individuals and families in need.
However, in order to effectively target our aid as well as track and measure our impact, we still needed to better understand the needs and priorities on the ground. Fortunately, some of our researcher and parent contacts are traveling to affected areas this week as part of a government assessment/aid team, and we have requested a list of their consensus priorities based on the information they collect. Once we receive the consensus priorities, the plan is to work with our partners to establish processes and procedures to forward the resources we have raised.
In the meantime, we have asked our Autism Speaks colleague Shelley Hendrix to serve as an information resource for our Japanese contacts. Shelley is experienced in helping families after natural disasters and played a key role in our relief efforts following Hurricane Katrina several years ago, as she herself was greatly impacted by that natural disaster.
While we are still gathering information to inform the best use of our resources, the needs are undeniable and seem to grow daily. In addition to our families from communities devastated by the March 11 earthquake and tsunami, the Japanese government has recommended extending the evacuation zone around the stricken Fukushima Daiichi Nuclear Plant to 19 miles, affecting approximately 140,000 residents. This is of course more conservative than the 50-mile evacuation zone advisory issued by the U.S. Embassy.
Based on current consensus global prevalence estimate of 1%, up to 20,000 individuals and families with ASD will be uprooted and forced to navigate unfamiliar and difficult new environments. They desperately need your and our help NOW. Please visit Autism Cares to make a donation to support families in Japan.