NEW YORK, N.Y. (April 1, 2009) – Autism Speaks, the world's largest autism science and advocacy organization, announced today a new partnership with the Albanian Children Foundation (ACF) the first international accord in the Global Autism Public Health (GAPH) Initiative. In addition, they announced an agreement with Irish Autism Action to form an advisory committee to facilitate the development of a GAPH partnership. As Autism Speaks marks the second annual World Autism Awareness Day (WAAD), it reviews autism science and research around the world assessing the prevalence, investigating underlying biology and causes of autism spectrum disorders (ASD) in pursuit of treatments. Autism Speaks is currently supporting a host of international projects and multinational research collaborations, some of which are undertaken with outside partners. For these projects, Autism Speaks share of the spending totals $10.8 million over multiple years. Countries involved in this research include Australia, Bangladesh, Canada, Denmark, Germany, Finland, India, Israel, Italy, Norway, South Africa, South Korea, Sweden, Taiwan and the UK.
Bob Wright, co-founder of Autism Speaks said, “Approximately 67 million people are affected by autism around the world, and we believe the solutions will come from a community of science and research without boundaries. The work of Autism Speaks in global science and research is an important path to investigate causes, prevention, treatments and a cure for autism; increase international awareness of autism spectrum disorders; and advocate for the needs of all individuals with autism and their families in our global community.”
The GAPH Initiative provides support to other countries to move their autism research and awareness forward by enhancing public and professional awareness of autism; developing clinical and scientific expertise/capacity and international research collaboration; and developing and training professionals in early detection and intervention. As partners in the GAPH-Albania Initiative, the ACF and Autism Speaks have agreed to work together to develop sustainable programmatic solutions that will ensure comprehensive and appropriate services for Albanian children with autism and their families. The first step is to collect data which will inform public health policy and be applied to enhance the capacity and expertise of the Albanian autism clinical and scientific communities, and develop advocacy and information programs to raise public and professional awareness in Albania. Dr. Liri Berisha, wife of the Prime Minister of Albania, expressed her support saying “The partnership between the Albanian Children Foundation and Autism Speaks is an important milestone for and highly welcome by the community of families affected by autism, the professional community and the Albanian society overall.”
“The ACF has provided real benefits to the lives of children and families in Albania and formed strong international collaborations to achieve their mission of providing help to children in need,” said Geraldine Dawson, Ph.D., chief science officer of Autism Speaks. “The goal of the collaboration is to establish a sustainable autism public health program to benefit Albanian children and families in need.”
In Ireland, Autism Speaks announced and agreement with Irish Autism Action (IAA) to form an advisory committee which intends to facilitate the development of a GAPH partnership. The committee will be comprised of representatives from IAA, Autism Speaks, members of the Irish autism stakeholder community and expert researchers from Ireland and abroad.
“IAA has made major strides since its launch in 2001,” said Dr. Dawson. “They are advancing the rights of people with autism nationwide, as well as supporting diagnosis and education. A GAPH-Ireland Initiative will assist them in their new focus on autism research and training.”
“Irish Autism Action is delighted to have the opportunity to collaborate with Autism Speaks on this project,” said Kevin Whelan, CEO Irish Autism Action. “We see this as a defining moment in implementing policy in Ireland in relation to autism services.”
Autism Speaks continues the existing international collaboration between both Qatar and the Pan American Autism Awareness and Training Initiative (PAAATI). PAATI, which preceded the formation of GAPH, involves collaboration between Autism Speaks, the National Institutes of Child Health Development (NICHD), the American Academy of Pediatrics (AAP), the CARSO Health Institute, Clinica Mexicana de Autismo (CLIMA), and the Canadian Institutes for Health Research (CIHR). Autism Speaks and the Shafallah Center for Children with Special Needs in Doha, Qatar continue their partnership designed to increase global autism awareness and help the Shafallah Center to become an international leader in autism genetics research and service delivery.
For the first time in 2008, Autism Speaks launched funding mechanisms designed exclusively to support international epidemiology research, and committed $1.5 million to a number of new multi-year projects. In addition to ongoing projects in Bangladesh, India, South Korea, and Taiwan, Autism Speaks' international epidemiology portfolio now also includes the first-ever autism prevalence study in South Africa as well as studies in New Delhi and Goa, India. In South Africa, investigators will not only explore the prevalence of autism but also lay the groundwork to investigate the hypothesized relationship between autism and HIV infection. Lay abstracts of the most recent Autism Speaks International Epidemiological Portfolio follows this release.
Before studies can be conducted around the world, the assessment tools used to diagnose individuals must be translated to ensure cultural sensitivity. As such, Autism Speaks is currently supporting screening and diagnostic instrument translations in Mandarin Chinese, Arabic, Hindi, Bengali, Marathi, Konkani, Korean and Zulu. Combined, these languages are spoken by an estimated 1.75 billion people worldwide. The Chinese Mandarin versions of the gold-standard diagnostic instruments, the ADOS and ADI-R, were recently approved and are currently available for research and training purposes.
Autism Speaks also funded a proposal from a sub-group of the International Autism Epidemiology Network (IAEN) focusing on registry-based epidemiology. This project aims to uniquely study autism prevalence and potential environmental and genetic risk factors using a large, combined database, or "registry of registries," with information from six international sites. The International Collaboration for Autism Registry Epidemiology (iCARE) includes population based health registry data from Australia, Denmark, Finland, Israel, Norway, and Sweden, with Columbia University and the CDC assisting in data coordination and analysis. The IAEN, co-developed by Autism Speaks and the Centers for Disease Control and Prevention (CDC), now engages nearly 80 research professionals from 30 countries around the world.
The Autism Speaks Baby Siblings Research Consortium (BSRC) involves the work of 23 scientists from 19 institutions across the globe. This work investigates the infant siblings of children with ASD. Different studies focus on how autism is expressed in early behavioral and biomedical symptoms, which in turn will hopefully lead to both early diagnosis and treatment. Key BSRC efforts in the past year include:
- The start of studies investigating genetic and environmental risk factors in high risk groups.
- Autism Speaks launched its first primary BSRC project to study over 1000 sibs and their family members.
- Autism Speaks provided $5 million in funding to link two continuing studies of high risk siblings as early as pregnancy. One was supported to look at environmental risk factors, and the other is designed to identify neurobiological markers and brain growth patterns in infancy. The Autism Speaks funding expanded both projects to gather additional genetic, environmental and behavioral data and to pool the information pooled across seven sites and 1500 families.
- Autism Speaks facilitated the Toddler Treatment Network to identify goals, objectives and activities to improve measurements, define best practices for parent-implemented interventions, facilitate new researchers into the field, and to disseminate information to parents. Many of these objectives have been met including training on newer measures to identify infants (ADOS-t) and identification of common measures.
- Researchers in Canada validated the use of a standardized measure, called the AOSI, to identify children as young as 18 month of age.
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 the nation's largest autism science and advocacy organization, 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. Autism Speaks funds more than $30 million each year in new autism research, in addition to supporting the Autism Treatment Network, Autism Genetic Resource Exchange, Autism Clinical Trials Network, Autism Tissue Program and a range of other scientific and medical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2 and an award-winning, multi-year national public service advertising campaign with the Ad Council. Autism Speaks' family services efforts include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and the distribution of community grants to local service providers. Its government relations division has played a critical role in securing federal legislation to advance the federal government's response to autism, and has successfully advocated for insurance reform to require insurers to cover medically-necessary autism therapies. Each year, Autism Speaks Walk Now for Autism fundraising events are held in more than 70 cities across the country, as well as Canada and the United Kingdom.
About the Co-Founders
Autism Speaks 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. He also serves on the board of directors of the Polo Ralph Lauren Corporation and RAND Corporation. Suzanne Wright has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She serves on the boards of several non-profit organizations and is also Trustee Emeritus of Sarah Lawrence College, her alma mater. To learn more about Autism Speaks, please visit www.autismspeaks.org.