Autism Speaks' Global Autism Public Health Initiative (GAPH) was designed to bring sustained solutions to better of lives of individuals and families affected by autism in communities around the world. Over time, GAPH has evolved as part of an ongoing collaborative and iterative process with our partners to understand the important but complex relationship between autism advocacy, service provision and research. We recognize that while research can help answer many important questions about autism, it alone can not address all the current pressing needs of our families, especially in regard to greater awareness and service development.
GAPH began close to home in 2008 with a partnership between the United States and our closest neighbors, Mexico and Canada, in a precursor program called the Pan American Autism Awareness and Training Initiative (PAAATI). Today, Autism Speaks is exploring GAPH partnerships with more than a half dozen countries in Latin America and this past April, Autism Awareness Month, we participated in national autism conferences in Mexico, Brazil and Aruba.
Mexico City, Mexico
PAAATI held its third workgroup meeting on April 15-17 in Mexico City, Mexico, at the Centro de Rehabilitación Infantil Teletón. The previous two PAAATI workshops held in 2008 and 2009 focused on Spanish-language awareness efforts and research training, respectively. Organized by a partnership between Programa Autismo Teletón, Instituto Carlos Slim de la Salud, Clínica Mexicana de Autismo, and Autism Speaks, the meeting focused on community-based training programs for autism services with particular attention on parent-delivered intervention. The idea of enlisting parents as co-therapists has been around for about 30 years, but has received renewed insterest from the scientific community due to the impressive outcomes of several recent well-designed studies. It has also been gaining currency among international public health professionals as a potentially cost-effective way to overcome the lack of expertise and capacity, espcially in low resource countries or among underserved populations.
International experts in autism services delivered two days worth of presentations on topics including screening and diagnosis, early detection, behavioral intervention strategies, and examples of community-based service training of parents and professionals in the United States. Presenters included Deborah Fein, Ph.D. from the University of Connecticut, Wendy Stone, Ph.D. from University of Washington, and Lynn Brennan, Ed.D. of the Nashoba Learning Group. The third day was dedicated to interactive discussion among the nearly 100 participants – autism service providers from all corners of Mexico – to design and adapt the newly acquired information into programs that will address the needs of the Mexican autism communities.
The program also featured testimonials from mothers and siblings of children and adults with autism, some traveling from distant regions of Mexico to share their stories of promise and hope. While each story highlighted their own unique experiences with autism, the common theme was the overwhelming importance of family in Mexican culture and the increased importance of family involvement in the care for their loved ones with autism, which helped to explain the appeal of the parent-mediated intervention.
Porto Alegre, Brazil
The following week, April 22-24 in Porto Alegre, Brazil was the First Brazilian Meeting for Autism Research (1° Encontro Brasileiro para Pequisa em Autismo). The meeting was organized by investigators from the Universidad Federal do Rio Grande do Sul as well as Mackenzie University in São Paulo, a team of autism researchers that are actively involved in Autism Speaks International Autism Epidemiology Network. It was also supported by the Brazilian Neurology, Child Psychiatry and Allied Professional Association (ABENEPI), the main Brazilian autism parents association AMA (Associação de Pais e Amigos do Autista), and the Ministry of Education. Intended to attract an audience of research professionals from around Brazil the purpose of the meeting was to review the current state of autism science, particularly focusing on current and planned research in Brazil. Over three days the speakers addressed a “sold out” audience of over 400 participants. While most attendees were autism researchers, there was also a strong showing from the autism advocacy community representing numerous Brazilian autism organizations as well as parents from across the country.
Speakers included some of the most established autism researchers in Brazil covering topics from neurodevelopment to pharmacological treatments, as well as international experts such as Eric Fombonne, M.D., FRCP. from McGill University who discussed global autism epidemiology and Roberto Tuchman, M.D. from Miami Children's Hospital, and a meber of Autism Speaks' Scientific Advisory Committee, who discussed clinical issues and the relationship between epilepsy and autism. Government representatives from the Brazilian Ministries of Health and Education also addressed the audience, conveying the government's commitment to supporting autism specific service and research programs.
The meeting was intended to be a first-step in addressing the need for more public and professional awareness of autism in Brazil and the challenges faced by Brazilian families in need of services. It also served as a chance to highlight the impressive talent pool of Brazilian investigators in basic and clinical research, and the need for additional research support to build on existing expertise and findings. Promoting interactions and collaborations between Brazilian and international research experts, one of the meeting outcomes will be the creation of a Brazilian Autism Research Network and ultimately a Brazilian Society for Autism Research, two networks that will inform and guide scientific research in Brazil as well as the eventual development of a Brazilian GAPH program.
On April 15-18, Fundacion Autismo Aruba (FAA) hosted the first International Autism Symposium on the beautiful island of Aruba. Prime Minister Nelson O. Oduber opened the conference, which featured presentations from experts like Connie Kasari, Ph.D., Maretha de Jonge, Ph.D. and Miguel Santana, Ph.D. as well as self-advocate Valerie Paradiz, Ph.D. among others. An enthusiastic audience of several hundred parents and professionals, including those from neighboring islands of Bonaire and Curaçao, packed the lecture hall to learn the latest in autism research, treatment and advocacy.
FAA intended to use the conference to raise autism awareness on the island, and to inform community stakeholders, including government officials, of the needs of affected individuals and families. At a meeting on day two of the conference attended by several government officials, including the Ministers of Education and Social Welfare, parent leadership of FAA made a compelling case to sympathetic ears, and both the parents and officials welcomed Autism Speaks' support and encouragement to build capacity and enhance services in Aruba.
Not only are the countries of Central and South America some of our closest neighbors geographically, there is a growing Latino population in the United States among which is a growing autism community. The latest CDC estimates of autism prevalence in the U.S. showed that about 1 in every 170 children of Hispanic ethnicity has an autism spectrum disorder. Compared to the national estimate of 1 in 110, investigators are unsure whether Hispanic children are truly less affected by autism or if lower access among Hispanic families to autism services in the U.S. is to blame. However, research in Mexico and other countries of Latin America can help shed light on autism in Hispanic populations both abroad and in the U.S. Furthermore, the design of culturally sensitive and relevant awareness and service programs in Latin America can directly benefit Latin Americans living in the U.S. as well.