Posted by Amy Daniels, Ph.D., Autism Speaks assistant director of public health research
This month, the journal Autism Research publishes a special issue titled “Global Perspectives on Autism.” It is the first time an autism journal has dedicated an entire issue to global research.
As a public-health scientist, I am keenly interested in improving services and quality of life for all individuals and families affected by autism spectrum disorder (ASD). So I am encouraged to read about the strides researchers are making in building awareness and services across the globe. They are recognizing that we must engage local communities and autism families if we are to translate research into action and improve lives in real and lasting ways. Importantly, this must include respect of and appreciation for the needs of different cultures.
The issue opens with “Perspectives from the Common Ground,” an editorial on the importance of global research in both advancing basic science and improving each country’s ability to deliver autism services. As the writers point out, a balance must be struck between delivering services today and advancing basic science that can revolutionize services in the future.
A second editorial, “Autism and the Grand Challenges in Global Mental Health,” summarizes the challenges to conducting autism research in low- and middle-income countries. It highlights the importance of overcoming barriers by engaging local communities, investing in low-cost tools for screening and diagnosis, and training community health workers and parents to deliver interventions.
The editorials are followed by “Global Prevalence of Autism and Other Pervasive Developmental Disorders.” Prevalence is the proportion of individuals in a population with a given condition. Based on 33 international studies, the authors estimate average global prevalence to be 1 in 160. The number is similar to some of the earlier prevalence estimates in the U.S. Since then, more recent estimates have found much higher U.S. prevalence, the most recent being 1 in 88. The authors acknowledge that autism prevalence in many countries remains largely unknown. Still, estimating prevalence gives a picture of autism’s overall burden. It also helps local advocates build awareness and lobby for services and policies to benefit their communities.
The series continues with two research reports made possible by funding from Autism Speaks. (See grant descriptions here and here.) The first is “Screening for Autism in Mexico.” The researchers used a Spanish-language version of the Social Responsiveness Scale, a screening instrument widely used in the U. S. The good news is that they found it can accurately screen for ASD in Mexico. The second report is “Challenges, Coping Strategies and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India.” It includes interviews with local parents, teachers and health care providers in Goa. Not surprisingly, many of the stresses, strains and challenges they describe are achingly similar to those expressed by many U.S. families.
In “Communities in Community Engagement: Lessons Learned from Autism Research in South Africa and South Korea”, the authors describe an approach called community-based participatory research. The aim of the approach is to overcome barriers to research participation. The authors make clear that stigma – an issue prominent in many articles in this series – is a major barrier to research participation in both countries. I found this striking given the tremendous economic and cultural differences between the two countries. Another barrier is a lack of family trust in the research process. Together, these issues underscore the importance of working closely with families in ways that respect their values and culture. Again I was struck with the similarities to research challenges often encountered in economically disadvantaged and ethnic minority communities in the U.S.
The issue’s final article is “A Global Public Health Strategy for Autism Spectrum Disorders,” and its authors include members of Autism Speaks Global Autism Public Health initiative (GAPH). It summarizes GAPH’s strategy for engaging families, advocates, governments and service providers around the world. The goal in each country is to set national priorities for autism research, training and capacity building. The article highlights Albania and Bangladesh. These are just two of more than thirty countries that have relationships with Autism Speaks through its GAPH program. Always, our guiding goal is to help families affected by autism.
As global awareness of autism gains momentum, I look forward to more research advances from other countries. I am also excited to see how research is translating into tangible improvements in the lives of individuals with autism across the globe.
For all the differences between the U.S. and the countries described in this series, I am more struck by the similarities. They remind me that global autism research has the potential to deliver far more benefits here at “home” than we may fully appreciate.
For more news and commentary, please see our 2012 IMFAR page.
For more blog posts on global autism research, see Autism Speaks and the Movement for Global Mental Health, Collaborating in SouthEast Europe, From the President: An Eye-Opening Visit to Albania and Autism Speaks Being Heard in Europe. Using our Grant Search, you can explore more of the global research we are funding here. This research would not be possible without the support of our families, donors and volunteers. Thank you!