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Global Autism Public Health Initiative
The latest CDC estimates that 1 in 88 children in the United States have been identified with some type of autism spectrum disorder.1 Further studies conducted in other regions of the globe have that autism spectrum disorder is the fastest growing disability on the planet.2 Although recent legislation has been passed in the United States to enhance research services and create awareness for ASD, many countries in the world lack the public health programs and early intervention services that are so vital to the well-being of children with autism. A shortage of professionals with trained expertise in diagnosing and providing intervention services for ASD is a universal issue for families affected by autism. Autism Speaks, the world’s largest autism advocacy organization, has initiated the Global Autism Public Health Initiative (GAPH) to address the worldwide challenges presented by the growing number of incidence of ASD. The Global Autism Public Health Initiative aims to spread awareness, create research collaborations between nations, and enhance service delivery for ASD.3
Goals of the Global Autism Public Health Initiative
In 2008, Autism Speaks unveiled the Global Autism Public Health Initiative during the World Focus on Autism event.4 GAPH is designed to help bring the previous successes for ASD in the U.S. and Europe to the rest of the world. According to Autism Speaks5, the GAPH Initiative specifically focuses on three goals:
- Increasing public and professional awareness of autism spectrum disorders (ASD)
- Increasing research expertise and international collaboration through training of autism researchers, with a focus on epidemiology, screening and early diagnosis, and treatment
- Enhancing service delivery by providing training and expertise to service providers in early diagnosis and intervention
Initiatives similar to GAPH, like the International Autism Epidemiology Network (IAEN) and the Pan American Autism Awareness Training Initiative, were established to not only help spread worldwide awareness of autism, but to also offer “an ideal platform for training the next generation of autism researchers, where talented young scientists can learn by engaging in world-class, cutting edge efforts.”3 With international partners including families, researchers, institutes, advocacy groups, and governments in over 30 countries the GAPH imitative has made its mark on the four corners of the globe.6
The Global Autism Public Health Initiative Worldwide
Bangladesh and Southeast Asia
Since the implementation of the Global Autism Public Health Initiative progress has been made to achieve their goals in places like South Asia, Southeast Europe, and even China. In July of 2011 a seven-point “Dhaka Declaration” was adopted as part of the international conference “Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South East Asia”.7-8 The conference marked the launch of Autism Speaks’ GAPH+ Bangladesh and was a result of a collaboration between Autism Speaks, the Bangladesh government, the Centre for Neurodevelopment & Autism in Children, the World Health Organization (WHO), and WHO’s South Death Asian Regional Office (SEARO). The Dhaka Declaration was recited by the Sri Lankan First Lady Shiranti Rajapaksa during the conference.9 Some of the tenants of the “Dhaka Declaration on Autism Spectrum Disorders and Developmental Disabilities” include providing care in close proximity with families, homes, and schools, promoting participation in family life, education, and societies, and establishing a measure for assurance of quality of services and promoting a supportive national legislative and policy environment to ensure social inclusion. The declaration mandates that a regular regional conference must be held to allow for researchers to share information and monitor progress. The declaration also states that low and middle income countries need prioritization and support for adaptation of methodologies of care according to local context and specificities.8
The Dhaka Declaration was only one of the major accomplishments of the 2011 international conference in Bangladesh. The conference also announced the creation of the National Advisory Committee (NAC) on autism. The chair of this committee is Saima Wazed Hossain, who is the daughter of the Bangladesh Prime Minister Sheik Hasina.9 In an India Real Time interview Ms. Hossain explained that the “NAC is further subdivided into four different task forces: Advocacy and Awareness, Education, Health Services, and Research which have been identified as the key areas to focus on in Bangladesh.”9 A main objective of the Bangladesh government is to find economically feasible ways to engage in early identification and mass screening processes of children within the first year of life.9 This is a common goal of all countries united with GAPH.
One of the world’s most distinguished superpowers, China, is also working in conjunction with the GAPH Initiative to address the issue of autism within their country. In late 2011, the Autism Speaks science team made its way to Shanghai, China with “the goal of enhancing collaboration among Chinese and North American scientists.”10 Dr. Geri Dawson, Autism Speaks Chief Science Officer, explains that parents’ in China shared many of the distresses American parents have concerning ASD, “[She] was struck by the fact that, although China and the United States are very different cultures, autism is a common bond. Parents across the globe are looking for answers to help their children.”10 The Beijing Genome Institute, the largest genome sequencing institution on the planet, partnered with Autism Speaks to participate in the Autism Genetic Resource Exchange. According to Andy Shih, Ph. D., the Autism Speaks Vice President for Scientific Affairs, the goal of this project is to “spell out the genomes of some 10,000 participants….By spelling out the DNA “blueprints” for thousands of autism families, this endeavor will provide researchers with an unprecedented resource for deciphering the biology of autism and, potentially, producing targeted treatments.”11 This collaborative effort, which is to last two years, will create the world’s largest genome sequence library for autism research. Another project launched by the Chinese utilizes text messaging to alert new mothers to the early warning signs of autism. The hope is that this innovative new strategy will yield increases in referral, assessment, and intervention rates for children with early signs of ASD.10 The GAPH Initiative has had positive effects in Asia, but equally important projects are underway in parts of Europe as well.
Europe and GAPH
In 2011, Autism Speaks and the Albanian Children Foundation (ACF) celebrated the opening of the Albanian Children Foundation in Tirana, Albania. Like all of the projects associated with the GAPH initiative the Albanian Children Foundation Centre will bring “needed autism awareness, research, services, and professional training to families in Albania and South East Europe.”12 Liri Berisha, M.D., the president of the Albanian Children Foundation and husband to Prime Minister Sali Berisha, accompanied representatives of Autism Speaks and dignitaries from other parts of Europe and the Middle East in opening of the Albanian Children Foundation Centre. According to Mark Roithmayr, president of Autism Speaks, “Albania’s commitment to autism and to creating the Centre is impressive and should serve as an example to other countries in the region.”12 The opening of the Centre marks the pinnacle of an ongoing collaboration between the Albanian Children Foundation and GAPH. In fact, the ACF became the first partners of the GAPH Initiative in 2009. So far, GAPH-Albania has “overseen translation and publication of textbooks for parents and teachers, professionals have been trained in the use of early intensive behavioral intervention, and a pilot screening study has recently been completed in the Albanian capital Tirana.”12 The success of GAPH-Albania has caused the partnership to be used as a model for other projects, such as the South-East European Autism Network (SEAN).
The South-East European Autism Network (SEAN) was originally a collaborative effort of five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia, and Slovenia), the Albanian Children Network, and Autism Speaks, with support from the World Health Organization. Since the initial meeting in December of 2010, Bulgaria, Kosovo, and Montenegro have signed the SEAN pledge; and Greece and Serbia may also soon join.6 According to Simon Wallace, Ph.D., the Autism Speaks director of scientific development for Europe6, the South Eastern Autism Network specifically pledges to:
- Raise public and professional awareness in the region
- Provide information resources for parents and professionals
- Collect public health data on the locations of individuals with autism
- Conduct professional training in the areas of diagnosis, clinical management, and early intervention
- Provide evidence-based services for both children and adults
- Support the establishment of a regional committee to meet biannually with the goal of developing guidelines and recommendations on public health and autism
The first official SEAN network meeting occurred in February of 2012 in Ljubljana, Slovenia. The conference was attended by 300 people with the support of the Slovenian Ministry of Health and the Institute of Autism Spectrum Disorder. National coordinators spoke briefly about the common challenges they face as they attempt to address issues concerning the rising incidence of autism spectrum disorders. These common challenges include a lack of diagnostic services outside of a country’s capital city, the lack of manpower and resources necessary to diagnose the increasing amount children with ASD being referred to clinics, and the need for more diagnostic, screening, and awareness materials printed in their countries’ respective languages.6 To address these issues surveys have been created to assess health data from each country, translated versions of Autism Speaks tool kits are being created, and a training workshop is scheduled for later this year at the Regional Centre for Autism in Albania.6 SEAN members plan to reconvene in 2013 in Sarajevo, Bosnia and Herzegovina to report on the progress being made in region.
The Pan American Autism Awareness and Training Initiative actually preceded the Global Autism Public Health Initiative, but their long-term goals are identical.13 The first goal of the PAAATI is to “provide the much-needed awareness to health professionals and families as well as support for early detection and training programs.”14 The 2008 initiative is a part of an unprecedented collaborative effort between Autism Speaks, The U.S. National Institutes of Health, Canadian Institutes of Health Research, and the Carso Health Institute of Mexico to develop robust services and research efforts for ASD.15 The second goal of the PAAATI is to increase research expertise and international collaboration among countries in North, South, and Central America by “providing training to interdisciplinary autism researchers, with a focus epidemiology screening and early diagnosis.”15 The hope is these newly trained service providers will be able to deliver immediate benefits to the community, and will eventually become the source for the next generation of autism researchers for their respective countries. The third and final goal of the PAAATI is to “enhance service delivery across the Americas by providing training to professional service providers that focuses on screening, diagnosis, and educational intervention.”15 By completing each of these objectives the PAAATI can achieve its overall goal of enhancing the quality of life for individuals and families affected by ASD.
The training model is designed to build capacity for services by “providing technical assistance, content development, and education.”3 According to the Autism Speaks website3, the three phases of the training model are:
- Phase 1: Identification of a national planning group of parents and professionals that will determine the national goals and needs, and make cultural adaptations, as required
- Phase 2: Development, training, and provision of on-going technical assistance for the national training team in the desired intervention practices
- Phase 3: Support for the national training team while it transitions to become independent trainers of others in their territory
Ideally, this training model will allow for a self-sustaining system for service delivery and training of service providers at the community level.
Autism Speaks global awareness efforts have made great strides in spreading awareness of autism spectrum disorders to the far reaches of the globe. As a part of the GAPH Initiative, screening and diagnostic instruments are being translated in Mandarin Chinese, Arabic, Hindi, Bengali, Marathi, Konkani, and Zulu. This list comprises languages spoken by an estimated 1.75 billion people across the world.16 Initiatives like GAPH, World Autism Day, and Light it up Blue have been successful in expanding collaborative research and creating global awareness for autism.17 In 2009, Bob Wright, co-founder of Autism Speaks, has this to say about the state of autism, “approximately 67 million people are affect by autism around the world, and we believe the solutions will come from a community of science and research without boundaries.”14 The GAPH initiative is helping to eradicate the boundaries that prevent individuals affected by ASD and their families from receiving proper care. If you are interested in becoming a participant in the GAPH Initiative please contact Andy Shih, Ph. D., Vice President of Scientific Affairs (firstname.lastname@example.org).