Makiko Kaga, M.D. was clearly nervous. She told me so, several times.
Dr. Kaga is the Director General of the Japanese National Institute of Mental Health at the National Center of Neurology and Psychiatry (NCNP). She is also our collaborator and the main organizer of the “Joint Academic Conference on Autism Spectrum Disorders” that Autism Speaks co-hosted December 1-3, 2011 in Tokyo, Japan.
She and her team of about a dozen junior faculty, post-docs and graduate students had been working feverishly preparing for the conference. In this first academic conference of its kind devoted to autism, Autism Speaks brought six leading autism researchers from the U.S., with expertise ranging from epidemiology to intervention, to share their work, including unpublished results, and to explore collaborative opportunities with their Japanese counterpart. Dr. Kaga’s team was charged with coming up with the right mix of presentations by Japanese and U.S. scientists that would ease productive exchange and interactions. From my own experience, this is easier said than done, especially with language and cultural differences. Plus, you never really know how well things will flow and gel until it happens.
Around the same time, Masatsugu Tsujii, Ph.D. and Teruko Ujita of Japan Developmental Disabilities Network (JDD-Net) were having similar jitters. Working together with Autism Speaks’ communications manager Danielle Yango and Alison Bradley, from our international PR firm BLJ, they were responsible for staging awareness activities throughout the three-day conference, concluding with an awareness event involving Yoko Ono. Ms. Ono is Autism Speaks’ Global Autism Awareness Ambassador and she kindly agreed to take time from her busy schedule to join many Japanese families and professionals to raise awareness about autism.
Teruko Ujita is a mom, and the Executive Director of JDD-Net. She is one of those super effective people who, no matter how chaotic things get around her, is always calm and ready to flash a big smile. Autism Speaks’ collaboration with the Japanese autism community really started about 18 months ago with a chance meeting between Dr. Tsujii and I at IMFAR 2010. So to say he was feeling the pressure to deliver is probably an understatement.
A couple of times during those tense hours, various people mentioned “Lost in Translation,” the cult Sophia Coppola film starring Bill Murray about feeling dislocated in the Japanese culture. Each time I muttered “shut up” under my breath, not wanting to be drawn into the whirlpool of anxiety around me.
In the end, we really didn’t have to worry. Or rather, maybe because all our wonderful colleagues obsessed so much over every detail, both the academic conference and the awareness event with Yoko Ono unfolded brilliantly. Both Japanese and U.S. researchers told me how much they learned at the conference, and how they plan to follow up and explore collaborative opportunities in areas like early screening to environmental sciences. I knew everything was going to be OK with the awareness event when right before Yoko Ono took the stage for an hour of inspirational remarks and TV and press interviews, she was smiling and clapping watching Salsa Gum Tape, a band comprised of individuals with disabilities, along with a packed hall of families and professionals performing a rousing interpretation of John Lennon’s “Imagine.”
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.