Why is international research on the prevalence of autism important?
“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community. We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.
Evidence suggests that autism knows no cultural, ethnic, or geographic boundaries. It affects 1 in every 110 children (or about 1% of children) in the United States and converging research findings from around the world suggest that autism may affect 1% of the global population. However, most autism epidemiology studies to date have taken place in select areas of relatively developed nations and communities and have used strikingly different study designs that complicate comparison across studies. Further, very little is known about the occurrence of autism in low-resource territories with limited to no public health capacity and infrastructure. By working to address these barriers and to facilitate well-designed epidemiology research around the world, investigators can begin to answer questions surrounding the occurrence of autism globally.
International research can help address questions regarding the causes of autism and changes in its occurrence rates over time. Specifically, by comparing autism prevalence across nations, researchers can generate clues about the involvement of genetic risk factors or environmental exposures. International studies create opportunities to study autism in different ethnic groups, in special populations (e.g., those that are genetically closely related), and among populations with specific or uncommon environmental exposures (e.g., certain pollutants) not found elsewhere.
Additionally, some nations have special resources, such as health registries and surveillance systems that can generate large datasets and make previously impossible studies on the causes of autism possible. Autism Speaks is currently supporting the iCARE project which combines data from Norway, Sweden, Denmark, Finland, Israel, and Australia to investigate pre- and peri-natal risk factors for autism.
Just as autism’s high prevalence rate drove its emergence as a public health priority in the United States, children in nations around the world will benefit when their governments recognize that autism is not a rare disorder. Epidemiology research can help increase awareness about autism and help government agencies develop informed policies regarding care of individuals and families with autism and other developmental disorders within their country.
In addition to epidemiology, it is vitally important to investigate additional areas relevant to public health research and dissemination. Specifically, understanding the economic impact of autism can help researchers and advocates gauge the impact of autism on societies, including the quality of life of affected individuals and families. Equally important, this information can serve as a means to promote increased access to low-cost and widely available services, such as through healthcare insurance reform in the United States. Additionally, the impact of early diagnosis and early intervention on the economic burden of autism can be assessed to further make the case for increased service support to both general and underserved populations in the U.S. and aboard.
International autism research will not only shed light on the scope of the autism challenge around the world but will also serve to raise global awareness of autism. As this increased awareness can help galvanize communities, epidemiologic findings have the potential to influence government, public health agency, and medical organization policies and practices, thus benefiting previously underserved communities. In low-resource countries in particular, these efforts will function to enhance the infrastructure and capacity necessary for ongoing autism research as well as for services. International research may also help uncover previously undiscovered genetic and environmental factors that contribute to the development of autism spectrum disorders, thereby further benefiting the scientific community and ultimately, affected individuals and their families.