Today is Thursday, day 2 of the conference and day 5 of our trip here in the Philippines. The session began with a recap of yesterday, given by one of the developmental pediatricians in attendance. By the way, in a country of almost 100 million people, there are less than 40 developmental pediatricians in all of the Philippines. Most are here at the conference.
It has been amazing to see the dedication and kindness in the parents, professionals and teachers in attendance. Everyone wants to learn from each other so that we can all better help families coping with autism. It’s also been fascinating to see a complete lack of divisiveness in the Filipino autism community. They are united in the common goal of helping families, despite organizational affiliations, personal beliefs or social status. A model for the rest of the world with similar goals.
The morning’s presentations focused on the neurobiology of autism, from genetic findings to brain structures and neuroimmunology. Young Shin Kim from Korea talked about the epidemiology of autism around the world – what we know and what we still need to learn. She began by turning the conference room of 1000 attendees into a classroom on basic epidemiology,explaining the difference between prevalence and incidence – terms that even seasoned epidemiologists can easily confuse. Simply put, prevalence measures the total number of individuals in a population with a given disorder at a single point in time. Incidence, on the other hand, describes the number of new cases in a population over a certain period of time. Dr. Kim emphasized that until we can accurately measure the incidence of autism over time, we will not be able to fully understand if we’ve seen a true rise in prevalence from 20 years ago. The talk concluded with an update of the first ever prevalence study being conducted by Dr. Kim in South Korea, supported by Autism Speaks funding. Based on preliminary findings, it is becoming ever clearer that autism truly knows no cultural or geographic boundaries.
Helen Tager-Flusberg, after delayed flights and an unexpected layover, arrived early this morning, just in time to speak this afternoon on language in autism. Tomorrow, Autism Speaks will be hosting an interactive discussion about our Global Autism Public Health Initiative and we can sense the excitement of the conference goers. Come back tomorrow to hear how it went!
By Michael Rosanoff, MPH, Assistant Director, Public Health and Scientific Review and Dana Marnane, National Director Communications and Marketing, Autism Speaks
The International Autism Conference in the Philippines officially kicked-off this morning with a bang! President of the Philippines Gloria Macapagal-Arroyo and the First Gentleman Atty. Jose Miguel Arroyo gave poignant speeches, both expressing their strong support to address the growing problem of autism that exists in the Philippines. Over 500,000 individuals living here have autism and only a small fraction of those are receiving the services they need. President Arroyo thanked all the participants for being active in the autism community and applauded the efforts of groups like the Autism Hearts Foundation and Autism Speaks. In fact, President Arroyo specifically noted the Philippines’ collaboration with Autism Speaks in launching the Global Autism Public Health Initiative to help address the needs of all Filipinos struggling with autism. It was really an honor to be a part of this touching opening ceremony that included a special performance by a gifted young boy with autism who sang a song in Tagalog about hope and love. In addition, there was a hand lighting moment that truly showed how all the groups – professionals, advocates, and government – are coming together, hand-in-hand, to address autism in the Philippines. Autism Hearts Foundation, the event organizers, provided beautiful Filipino clothing to all the speakers for the opening ceremony. Women wore Kimonas and men wore the barong.
The first day’s speakers addressed the audience of nearly one thousand teachers, parents, doctors and policy makers. The turnout was terrific, giving us an idea of just how strong the desire to learn more about autism is among the Filipino community. Lucky for them the conference speakers are some of the most experienced and well-respected researchers in the world. Their discussion topics today included the changing nature of autism diagnosis, co-morbidities seen with autism, the importance of early identification and evidenced-based treatments.
On a more personal note, we met a young mother today who was attending the conference as part of her education on autism. She is working on her earning her Master’s degree to enable her to better care for her six year-old daughter with high-functioning autism. Her daughter recently put together a 500 piece jigsaw puzzle … with the picture side down! While individuals with autism face many challenges they can often also have many gifts.
I am getting ready to head to Manila, Philippines for the first ever International Autism Conference (IAC) to be held in that country and the largest to be held in that region. It is being organized by the Autism Hearts Foundation and Autism Hearts Philippines and among the sponsors is Autism Speaks.
Medical experts from around the world will be onsite to present the most current research and information on diagnosis, assessment and treatments of ASD, as well as to review current policies to create a baseline from which to support individuals on the spectrum and their families. I am attending to present on autism awareness along with two of my colleagues from the science team – Andy Shih, Ph.D. and Michael Rosanoff, MPH.
The conference will also launch the Global Autism Public Health initiative in the Philippines (GAPH Philippines), a partnership between the Autism Hearts Foundation and Autism Speaks. The GAPH focuses on increasing public and professional awareness of ASD; increasing research expertise and international collaboration through training of autism researchers, with a focus on epidemiology, screening and early diagnosis, and treatment, and enhancing service delivery by providing training and expertise to service providers in early diagnosis and intervention.
Stay tuned later on next week for an update. The conference runs Feb. 3-5 and I hope to be able to post at least one or two recaps. I will also be tweeting if anyone wants to follow me at twitter.com/dmarnane!
By Dana Marnane, National Director Communications and Marketing, Autism Speaks
This part 2 of a 2 part series is from Michael Rosanoff and Andy Shih, Ph.D. who both work in the Autism Speaks science department. This second post is from Andy Shih. Both guest bloggers bios are below the post.
The release of the latest prevalence data by the CDC last week was important in two ways. One, of course, is its implication for the role of environmental risk factors in autism. The other is how the finding enhances awareness and supports our call for more money for research.
The same can be said for our international epidemiology efforts. As part of our Global Autism Public Health initiative (GAPH), we have been funding and planning prevalence studies with our international partners and colleagues for the past several years. In South Korea, for instance, we are expecting the publication of the first ever prevalence estimate in early 2010. We also have prevalence studies in various stages of development in Albania, India, Ireland and Mexico. All these efforts involve members of our International Autism Epidemiology Network.
In addition to the contributions these studies can make to our understanding of autism, they will also help raise awareness and inform policy development in parts of the world where affected individuals and families struggle with severe stigma, and in many instances, little or no support and care. Another way to look at it is that when you conduct a prevalence study, you are basically asking members of the autism community to stand up and be counted. When that happens, especially if the number is anywhere close to the 1 percent figure we have here in the States, their plight and needs can no longer be ignored.
Andy Shih, Ph.D. is the Vice President of Scientific Affairs at Autism Speaks, where he oversees the etiology portfolio, which includes research in genetics, environmental sciences, and epidemiology. He was responsible for the formation and development of Autism Speaks sponsored international autism research collaborations, the Autism Genome Project and the Baby Siblings Research Consortium. Andy also leads Autism Speaks’ international scientific development efforts, such as the Global Autism Public Health Initiative (GAPH). Andy joined the National Alliance for Autism Research (NAAR) in 2002.
Prior to joining NAAR, Andy had served as an industry consultant and was a member of the faculty at Yeshiva University and New York University Medical Center. He earned his Ph.D. in cellular and molecular biology from New York University Medical Center.
Andy’s research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation. He was instrumental in the cloning of a family of small GTPases involved in cell-cycle control and nuclear transport, and holds three patents on nucleic acids-based diagnostics and therapeutics. Andy is a resident of Queens, where he lives with his wife, daughter and son.
Michael Rosanoff, MPH, is a member of Autism Speaks etiology team and manages the organization’s epidemiology and public heath research grants. Since joining the organization in 2007, Michael has been the staff lead in overseeing the International Autism Epidemiology Network (IAEN) and is part of the development team for the Global Autism Public Health Initiative (GAPH). He is also a member of Autism Speaks Grants Division, helping oversee the administration of the organization’s grant-making process for research.
Prior to joining Autism Speaks, Michael conducted independent research at the Gertrude H. Sergievsky Center, a clinical, epidemiological and genetic research center at Columbia University Medical Center focused on developmental disorders of the nervous system. His research background is in genetic and psychiatric epidemiology as well as behavioral neuroscience and neuroimmunology, with publications in the fields of epilepsy and depression. Michael earned his Master of Public Health (MPH) in epidemiology from Columbia University’s Mailman School of Public Health and resides in N.J.