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International Autism Conference – Philippines Day 6

February 6, 2010 Leave a comment

Mabuhay!

Yesterday was the final day of the conference and they saved the best for last (and not just because Autism Speaks was presenting). Dr. Peter Mundy spoke about one of the reasons that children with autism don’t spontaneously share joint attention may be because they find objects to be more interesting than the social world. Dr. Laura Schriebman discussed about how behavior is not random. When a child with autism acts out or tantrums, parents and therapists really need to determine what the antecedent was and how to remove or change it. No behavior occurs “for no reason” – there is always something that has triggered it, it’s just a matter of determining what it is. Dr. Nirit Bauminger spoke about social interaction among adolescents and ways to facilitate friendship. Her research found that individuals with autism can develop great friendships, and that friendships with their neurotypical peers can be very similar to typical peer friendships.

The last session of the day was Autism Speaks. Considering that it was the last session of a long three-day conference, we were surprised and overjoyed by the turnout for out talk. The room was packed, which told us that there was strong interest among the Filipino community about Autism Speaks and how we can help. The three of us – Andy, Michael and Dana – spoke about the Global Autism Public Health (GAPH) Initiative and our experiences around the world. We each explained a different part of the three-pronged process which aims to enhance research, services and awareness in the country through collaboration. The most important part of GAPH is community support – the families, teachers, therapists and doctors. Autism Speaks role is to act as a catalyst to help the community achieve lasting change for families coping with autism. We then concluded our talk by turning the microphone on the audience and posing the question, “what are the greatest needs of the Filipino autism community?” The response from the attendees was terrific and the development of a successful GAPH program looks very promising.

The closing ceremonies included a beautiful performance by Autism Angels – a trio of young women with autism from Autism Society of Philippines families. They sung beautifully. Their performance was followed by the niece of the Borromeos, our conference organizers, who sang an incredibly touching poem written by Charlie Borromeo for his grandson Julien. Julien was the inspiration for the development of the Autism Hearts Foundation, and the International Autism Conference would never have been possible without their leadership. We concluded the way we began with a hand print ceremony where all the speakers and dignitaries dipped their hands in paint to create a mural as a lasting testimony to the coming together for the cause of autism Philippines.

We just want to take this opportunity to again thank the Autism Hearts Foundation, the Autism Society of the Philippines, The First Gentleman’s Foundation, and the UC Davis MIND Institute for their instrumental roles in making the IAC a reality. This conference is a monumental achievement and Autism Speaks is honored to have been a co-sponsor and participating speakers. It has been an educational, touching, and truly unforgettable experience. We thank them for hosting us in their beautiful country and look forward to long-lasting partnerships and friendships.

By Dana Marnane, National Director Communications and Marketing and Michael Rosanoff, MPH, Assistant Director, Public Health and Scientific Review, Autism Speaks

International Autism Conference – Philippines – Day 5

February 5, 2010 Leave a comment

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

Philippines International Autism Conference – Day 4

February 4, 2010 Leave a comment

 

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.

 
By Dana Marnane, National Director Communications and Marketing, Autism Speaks and Michael Rosanoff, MPH, Assistant Director, Public Health and Scientific Review 

Philippines International Autism Conference – Day 3

February 3, 2010 Leave a comment

Last night, all of the conference speakers were treated to a tour of the Mall of Asia, run by SM (Super Malls) in Manila. It is the second largest mall in the country and is absolutely enormous. We were greeted by mall staff who shared a story about their unprecedented disability policy. Several years back, a teenage boy with autism was separated from his mother and became lost in an SM mall (did we mention the malls are enormous?).  Upon hearing from the boy’s mother after the incident, it was clear that the situation could have been handled much better by mall staff. The management reached out to the Autism Society Phillipines to find a way to change their policies in a way that would improve the mall and the response of its staff, not only in situations of lost children, but for the mall-going experience of all individuals with disabilities. With the help of the several PWD advocacy groups, the newly-developed SM Committee on Disability Affairs created a video featuring Filipino PWDs, which is now used as a training tool for all mall employees. Their willingness to recognize the need to accommodate not only the physically disabled, but also those with developmental disabilities has made them trailblazers in addressing the needs of the Filipino autism community. The Mall of Asia and other SM Malls have since been named the “Most Disabled-Friendly Malls” in the Philippines.

One of the local advocacy groups that worked with SM to improve mall conditions for individuals with autism was the Autism Society of the Philippines (ASP).  Today, we met the three-time past president and current Chairman Emeritus of ASP, Dang Uh Koe. She is the mother of a 16-year-old boy with autism. Over the years, Dang and her son have been through extensive therapies and continue to have home aides to assist and work with them on daily activities. Based on her and her son’s experiences during a time when so many in the community were searching for answers to their children’s service needs, Dang joined ASP, which was started by 11 mothers 21 years ago. Today they are one of the most recognized autism advocacy groups in the country and like Autism Speaks, are proud sponsors of the International Autism Conference.  Dang is an amazing woman who, through ASP, is truly making a difference in the Filipino autism community.

The conference begins today – so stay tuned here and to Twitter for updates!

By Dana Marnane, National Director Communications and Marketing, Autism Speaks and Michael Rosanoff, MPH, Assistant Director, Public Health and Scientific Review.

Philippines International Autism Conference – Day 1

February 2, 2010 Leave a comment

We arrived here in Manila after traveling over 24 hours from NYC to attend the International Autism Conference (IAC). We were greeted royally by media and representatives from the Autism Hearts Foundation (AHF), despite the early local time of 3:30 a.m. After breakfast, one of the major Filipino television networks, GMA, interviewed several of the scientists who will be presenting Wednesday through Friday. Lynda Borromeo, with AHF kicked off the press event and than introduced David Amaral, Ph.D. from the M.I.N.D. Institute. Dr. Amaral spoke of how pleased he was “to see autism research blossom in the Philippines,”  indicating that working collaboratively was part of the mission of the M.I.N.D. Institute. Autism Speaks’ Andy Shih, Ph.D. added that “we will learn from the Filipino autism community which will help us to understand the needs to speed solutions.”

Not only will the IAC bring some of the world’s most renowned autism researchers to speak to the Filipino autism community, it will also allow for the Filipino autism community to speak back and share their stories with the world. Today, we had the opportunity to speak with a Filipino mother of a 15-year-old child who has autism. She was one of the fortunate parents in the Philippines to have her child diagnosed at a very early age. However for families outside of the capital of Manila, access to diagnostic services and treatment is much harder to come by. She shared some startling statistics. While a large-scale epidemiology study has yet to be conducted in the Philippines, local experts estimate that there are at least 500,000 affected children. Of those 500,000, only five percent ever receive a professional diagnosis. And of those, only two percent receive the necessary intervention services. It is stories like these that will help shed light on the scale of the autism problem in the Philippines and from which, programs can be developed to help address these most dire needs.

By Dana Marnane, National Director Communications and Marketing, Autism Speaks and Michael Rosanoff, MPH, Assistant Director, Public Health and Scientific Review.

Leaving On a Jet Plane

January 30, 2010 Leave a comment

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

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