NEW YORK, NY (September 26, 2008) – Autism Speaks, the world's largest autism advocacy organization, today unveiled its Global Autism Public Health Initiative (GAPH), an ambitious international advocacy effort whose goals are to increase public and professional awareness of autism spectrum disorders worldwide, to enhance research expertise and international collaboration through training of autism researchers -- with a focus on epidemiology, screening and early diagnosis, and treatment -- and to improve service delivery in all nations by providing training to providers in early diagnosis and intervention.
The announcement was made at the United Nations World Focus on Autism, an international forum focused on global action to address the world's autism crisis. Participants included more than a dozen of the world's first ladies, members of the UN diplomatic corps, leading researchers and autism advocates.
Autism Speaks is seeking partners worldwide who will work with the organization to foster collaborations among governments, communities, and scientists, as well as help to support self-sustaining public health infrastructures to enhance awareness and capacity for autism services and research in their respective countries. Differences in resources, infrastructure, culture, and priorities will require a customized plan of action for each territory.
As part of the awareness component of GAPH, Autism Speaks will help others emulate its highly successful U.S. awareness campaign, which has dramatically increased public and professional recognition and understanding of autism spectrum disorder (ASD) and supported the passing of significant federal and state legislation aimed at enhancing research and services. A multi-year Autism Speaks public service campaign, created in conjunction with the Ad Council, has resulted in a 43% increase in autism awareness in the U.S. The acclaimed campaign was awarded a prestigious Effie award earlier this year. The organization will share its campaign strategy, content, dissemination channels, and methods of impact evaluation so they can serve as a starting point for interested partners.
In the area of training and scientific collaboration, GAPH is focused on building research capacity worldwide by encouraging the adaptation of standardized screening and diagnostic instruments for cultural relevance and sensitivity with the goal of ensuring accurate diagnosis and early detection of ASD. While these instruments have been translated into some languages, there are still many territories that do not have access to them. To help address this need, Autism Speaks is collaborating with Western Psychological Services (WPS), the publisher and owners of copyrights on many of the key diagnostic assessments. With the help of WPS, Autism Speaks has devised a process that streamlines the translation process, ensuring best practices and timely approval.
Autism Speaks' International Autism Epidemiology Network (IAEN) is designed to promote collaborative research through the exchange of epidemiologic ideas and practices between investigators and across countries. Nearly 80 investigators representing more than 30 countries have participated. In addition to fostering collaboration, scientific networks such as IAEN offer an ideal platform for training the next generation of autism researchers.
The services training and delivery component of GAPH is based on the understanding that effective treatments involve close collaboration between professionals and families, and require sensitivity to cultural perspectives and values. GAPH will offer information and training regarding empirically supported “best practices” that can be tailored to the specific needs, cultural preferences, and values of a given territory. Parents, medical and mental health professionals, early education professionals and special education professionals will be able to vett and modify this information to fit cultural norms and values at the point of delivery. The goal is to create self-sustaining systems for service delivery and training of service providers at the community level.
“Autism is a global health crisis that knows no borders -- it does not discriminate based on nationality, ethnicity or social status,” said Suzanne Wright, Autism Speaks co-founder. “It's high time that the world begins to recognize the scope of this problem and acts internationally and locally to improve the lives of the growing number of individuals and families affected by this devastating disorder.”
“GAPH is an effort to form global partnerships that will improve our scientific understanding of autism and help the world better understand the scope of this unique health crisis,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer. “Perhaps most importantly, it will help build the infrastructures needed to provide individuals who have autism with the services and support they need and deserve. We will find the answers we seek about autism only through international cooperation and collaboration, partnerships forged in laboratories, governmental chambers and homes across the world.”
GAPH builds on Autism Speaks' successful Pan American Autism Awareness Training Initiative (PAATI), launched earlier this year. A partnership between Autism Speaks, CARSO Health Institute of Mexico, Canadian Institutes of Health Research (CIHR), National Institute of Child Health and Human Development (NICHD), and Clinica Mexican de Autismo (CLIMA), this initiative presents an integrated approach to raise awareness and develop research expertise focusing on public health and screening for early diagnosis and enhanced service delivery across the Americas.
Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 150 children in the United States, affecting four times as many boys as girls. The prevalence of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.
About Autism Speaks
Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention and treatments for autism, and to advocating for the needs of individuals with autism and their families. It was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. Autism Speaks merged with both the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN), bringing together the nation's three leading autism advocacy organizations. To learn more about Autism Speaks, please visit www.autismspeaks.org