Feeling and filling the GAPH…

By: Dang Koe

AUTISM Speaks launched the Global Autism Public Health (GAPH) Initiative in the Philippines during the first International Autism Conference held in the country last February, Autism Speaks was founded by grandparents of a child with autism — Bob and Suzanne Wright. Founded in February 2005, Autism Speaks has grown into United States’ largest autism science and advocacy organization. It is “dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.” (source: www.autismspeaks.org).

With the GAPH Initiative, Autism Speaks now goes international in addressing the challenges of autism worldwide. After all, anywhere in the world, “a major barrier to improving the health and well-being of children and families touched by autism is the lack of knowledge and expertise. This limits access to care and early intervention and impedes the development of appropriate public health programs that can improve the quality of life for individuals with ASD and their families. These challenges are further complicated by a shortage of experts and trained professionals.”

This columnist was privileged to meet and interact with Autism Speaks’ Vice President of Scientific Affairs. Andy Shih, Ph.D., develops and implements the organization’s research program by working closely with members of Autism Speaks’ Board, Scientific Advisory Committee, senior staff and volunteer leadership. He also oversees the administration of the organization’s grant-making process for research.

(from left to right) Autism Speaks National Director of Communications and Marketing Dana Marnane, Autism Speaks’ Vice President of Scientific Affairs Andy Shih, Ph.D., Autism Society Philippines Chair Emeritus, Erlinda Koe, Autism Speaks Assistant Director of Public Health Research and Scientific Review Michael Rosanoff, M.P.H.

During my first meeting with Andy, I discovered not only a man with a very impressive scientific research background (a Ph.D. in cellular and molecular biology from New York University Medical Center; published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation; etc.). I also discovered a man who truly understands what families dealing with autism go through. He vows to “speed solutions to the families by confronting autism on all scientific fronts.”

Now it’s time to listen. Autism Speaks thru Andy Shih.

In a nutshell, what is Autism Speak’s GAPH Initiative?

GAPH is a way to help individuals and families touched by autism all around the world to find answers for a better tomorrow. Through GAPH, Autism Speaks aims to support our partner’s efforts to enhance autism awareness, research, and services in their own country. It is a program designed to meet the needs and priorities of the local community in ways that are widely available, feasible, and cost-effective.

What makes Autism Speaks so passionate about GAPH?

Autism Speaks’ mission is to change the future for all who struggle with ASD. The well-being and interests of our families is our top priority, and everything we do must ultimately answer the question: how does this help individuals and families with autism? While we have much more to learn, we believe there are many lessons and insights we can share with stakeholders around the world now that can help make a difference.

In each of the countries where GAPH has been initiated, please share “success stories.”

Every country is different, but we have seen many instances when the stakeholders come together to make a real difference for the families. In less than one year, for instance, our GAPH partners in Albania have begun planning an official prevalence study, held an educational workshop on autism science and care for professionals and families, and are about to pilot a professional training program based in a recently established service center for autism.

autism prevalence study in each country. In addition, we have begun planning a parent-training GAPH partnerships in both Ireland and Mexico had similarly led to the development of the first-everpilot project to be implemented later this year. And last year, Autism Speaks assisted Qatar with their first-ever national autism awareness campaign that urged parents to learn the signs of autism.

What are the major lessons learned in each of these countries?

The main lesson learned is that all countries, large or small, rich or poor, can help individuals and families with autism. It takes commitment and collaboration among all the stakeholders, but most of all, local leadership and ownership to ensure lasting change for the community.

What can Filipino families dealing with autism hope for from GAPH?

GAPH aims to empower local stakeholders to develop and disseminate feasible and sustainable community-based solutions that will make a real difference in the lives of individuals and families touched by autism.

It is not going to be easy, but by bringing together all the key stakeholders to work together and to develop a national consensus agenda for the Filipino autism community, we are building a future where:

(1) both the public and the professionals are well aware of ASD and the importance of early diagnosis and intervention; (2) there will be many more skilled professionals providing high quality services to families in need; (3) there will be parents trained as co-therapists to better manage and care for their affected children, even in currently under-served populations, to maximize outcome; (4) there will be robust public health statistics and autism surveillance systems that will help inform policy development and program performance; and (5) there will be community-based solutionsthat GAPH-Philippines pioneered, adopted and sustained by the public health system of the Philippines in perpetuity.

A better tomorrow… for individuals and families touched by autism all around the world. Autism Society Philippines has always been ready and willing to collaborate with organizations who share the same hopes and dreams of the more than 600,000 Filipino families living with, and loving, autism.

To know more about the different programs, services and events of Autism Society Philippines, please visit www.autismsocietyphilippines.org.

Source: Manila Bulletin, March 7, 2010, 11:37am