By Autism Speaks Director of Public Health Research Michael Rosanoff. This post is from Michael’s new Tumblr.com travelogue: “Travel for Good: Adventures of a science guy on his journey to promote global public health. To follow travelforgood, click here.
Am I making a difference? I’ve asked myself this same question, every time I’ve boarded a flight, every time I’ve said goodbye to my family over the last 8 years. In that time, I have flown more than half a million miles as partner and consultant to governments, NGOs, policy makers, and service providers across the globe. Each and every time the wheels leave the runway, I ask myself, and hope, whether what I am doing on this trip will truly make a difference. As I board another return flight home, reflecting back on not just the last few days but on the last few years, I can proudly say yes, I am. But this really isn’t about me.
It’s not me alone making a difference. Far from it, in fact. It’s those partnerships I mentioned that are truly responsible for the difference-making. They are the reason why families of children with developmental disabilities, such as autism, have hope for a new, brighter future. That’s not easy to say if you know about the challenges many of these families have been through and many continue to face. The following is a story, not about the challenges, but about resilience in the face of challenge. That story takes place here, in the Philippines.
I write to you from Tacloban, in the Eastern Visayas of the Philippine archipelago. Why does that name sound familiar? It was a name on everyone’s minds, and TV sets, just two years ago. This image might help you remember. It was taken from the international space station in November of 2013.
Typhoon Haiyan, (less) affectionately known around these parts as Yolanda, also has another distinction, deemed the strongest storm ever recorded on Earth. Yolanda made landfall near Tacloban on November 8, 2013 with wind speeds approaching 200mph. The winds took homes, but it was the storm surge that took lives. Officially, Yolanda was responsible for 6,300 casualties across the Philippines, though unofficially, the Assistant Secretary of Health Ubial told me herself that she believes 10,000 lives were lost in Tacloban alone.
With permission, I share some of the Assistant Health Secretary's photos taken from the air and ground in the first days following Yolanda:
When you see it on TV, it seems distant, almost surreal. I had reached out to colleagues in the Philippines the day it happened. I reached out to my Filipino friends at home, making sure their families were ok. Now I am actually here. At first, I was simply unable to connect what I had seen on TV two years ago to what I was now seeing in person, in front of my own two eyes. Maybe it was the 30-hours-of-travel-induced jetlag. Or perhaps it was a testament to how well the city has recovered. It was not until I heard the personal accounts and saw the photos taken with their own cameras that it became all too real. Now, as a sit at my departure gate, I can’t help but feel a deeper appreciation and connection after meeting the real people behind the pictures and news reports.
What am I doing in Tacloban, you ask? I’m here for autism. That’s the reason why I travel. As director for public health at Autism Speaks, I travel the world as part of an effort we call the Global Autism Public Health Initiative. Our continuing mission: to promote the public health of the global autism community. I have had the great fortune of visiting more than 30 different, sometimes exotic, always welcoming countries. I’ve even been to the Philippines twice before. But this time is different. Because this time I’m not just here for autism. I’m here for autism and for Yolanda.
A more specific description of our mission is to improve access to evidence-based autism services in low resource and underserved communities worldwide. Tacloban is both low resource and desperately underserved. Until recently, a developmental pediatrician had to be flown in from Manila to see the growing and seemingly endless waiting list of children with developmental red flags. What may be worse is that some children have yet to even make it to the waiting list because the stigma surrounding autism in the Philippines is too heavy a burden for some families to even face.
Success relies on raising awareness and reducing stigma, training non-professional service providers at the community level, and collecting data that can better inform health policy. But none of this happens without having the right partners in the community. Parents, self-advocates, teachers, doctors - the people who truly understand the situation. We also partner with governments. Ministries of Health, Education, Social Welfare, Labor. Even Heads of State and their spouses (often when they too have an affected family member). Top down meets bottom up as we like to call it. We are the middlemen/women, the matchmakers, the honest brokers. But only together can we even hope to make a difference. A difference in the lives of the millions affected by autism, from New York to Tacloban and everywhere in between.
In the Philippines, our grass-roots NGO friends, Autism Hearts Philippines and the Autism Society of the Philippines, lead the charge. Technical support from us combined with their uber-effective advocacy efforts (also known as stick-to-itiveness), the country’s Department of Health has made autism a top priority. It led to the first prevalence study of autism in the country. The site of the study, Tacloban. After the typhoon, Autism Hearts and ASP began an effort, which provided a foundation for the study, to locate all of the autism families displaced by the storm and in desperate need of help. As devastating as the storm was to your average family, it was that much more difficult for the family of a child with autism. Autism Speaks was able to provide a number of small grants to the families affected by Yolanda. While this provided a temporary reprieve, it more importantly helped open the door to a more lasting solution.
Tacloban's autism community gathers following Yolanda:
This brings me back to why I’m here. Yesterday, the Department of Health pledged its support to launch a Parent Skills Training Program developed by Autism Speaks and the World Health Organization. It will equip parents with the skillset needed to care for their children in the absence of specialists. The project will eventually reach across the Philippines. The launch site will be none other than Tacloban. Home grown trainers will empower dozens and eventually hundreds, if not thousands, of families to deliver evidenced-based care to their loved ones while the Philippines continues to bolster the capacity of its specialists.
So does this qualify as making a difference? The autism community is already a resilient bunch. In a way, autism families are stronger than most, hardened by the fight some face, whether it be for services or simply for acceptance. For some, an autism diagnosis can be devastating. Even more so in a place where autism is so stigmatized and where help is almost non-existent. Now take away their homes. Their possessions. Their safety. The lives of their loved ones. The autism families that survived and even thrived after Yolanda have to be the most resilient bunch I have ever met.
Snapshots from the Tacloban Autism Walk:
According to the theme of this year’s ASP Tacloban autism walk (which took place in the same mall nearly destroyed two years ago), we are “Onward to an Autism OK Philippines.” In my opening remarks, I told the more than 100 families, the families of Yolanda, that they are way more than OK. And while they may have felt honored by my words, I was honored just to be in their presence.
With a chance to catch my breath at the departure gate, I hit the social media accounts I had been neglecting all week. Ten new friend requests. I accept every single one. One of my new friends tells me, “Mr. Michael, thank you so much for sharing with us your time. Your effort strengthens our advocacy for autism.” Coming from someone who has been through the worst, those words me makes me feel like maybe I am truly making a difference. But it makes me realize something far more important. Who am I to say that I am making a difference? It’s not about me. It’s not about me at all. It’s about those families, those providers, those advocates, and those officials who truly feel the impact of a difference being made. It’s about the ones who see brightness on a once dark horizon. I’m just grateful for the chance to try to make a difference.
Speaking of this not being about me, I want to thank a few people who made this trip both possible and such a success: Lynda Borromeo of Autism Hearts Philippines, Assistant Secretary of Health Paulyn Ubial, my colleague Lucia Murillo, and of course all the families of the Autism Society of the Philippines Tacloban chapter.
I hope you'll enjoy the following video featuring some very special local talent:
Learn more about Autism Speaks Global Autism Public Health initiative here.