Understanding Autism: Toward a More Inclusive World
Posted by Michael Rosanoff, MPH, Autism Speaks associate director for public health research and scientific review.
On the third and final day of the International Meeting for Autism Research (IMFAR), we had a special opportunity to reflect on the importance of holding this annual meeting outside North America for the first time in five years.
Our keynote speaker was Maureen Durkin, PhD, MPH, professor of population health and pediatrics at the University of Wisconsin-Madison. Dr. Durkin challenged us to move “toward a more inclusive world” by building on what we know about the epidemiology of autism spectrum disorder (ASD).
The goal of autism epidemiology is to discover what causes autism and why it’s more common today than ever before. This is crucial for guiding public health decisions and healthcare strategies.
Dr. Durkin’s message wasn’t your traditional IMFAR keynote speech. It wasn’t about how the latest findings pave a clear road for future research. It was about the challenges to autism epidemiology research and how the road ahead may not be “paved” at all. It may be full of wrong turns and stumbling blocks. That is, unless we take steps toward being more “inclusive.”
Dr. Durkin noted the glaring imbalance in where most autism research takes place. It’s estimated that autism affects at least 1 percent of the world’s total population. But the vast majority of research takes place in high-income regions like North America, Western Europe and Australia.
This is understandable on many levels. However, it means that we don’t know how common autism is in other regions of the world.
Uncovering autism’s global clues
Why do we need to understand autism prevalence in other regions? If autism is more or less common in different places, what might this tell us about the influence of different environments? Different genetic backgrounds? Is something protecting certain populations? Or for that matter, is autism just “different” in different cultures?
We can’t answer these questions if we don’t expand our research beyond the same populations in the same countries.
Here is what we do know. Autism has become dramatically more common over time. We can’t pin the increase on a single cause. However, we’ve identified a number of risk factors. Older parents, low birth weight, shorter time between pregnancies and certain gene mutations have all been shown to increase the risk of having a child with autism.
We also know that some of the increased prevalence is due to changes in the way we diagnose autism. This includes increased recognition of less severely affected individuals.
But even taken together, these known factors don’t fully explain the increased prevalence. Dr. Durkin made a strong case that international epidemiology research is the way to help identify the missing risk factors.
Even more importantly, too many families around the world are going without services. This is particularly true among ethnic minorities and financially poor communities that have poor access to screening and services. And it’s true in our own country as well as abroad.
An International Hunger for Autism Research
This gap in knowledge and services isn’t due to lack of interest. Around the world, there’s a huge hunger for practical public health solutions to autism.
As Dr. Durkin noted, the most downloaded article in the history of the journal Autism Research was last year’s “Global Prevalence of Autism and Other Pervasive Developmental Disorders.” (Follow the link to download it free along with an entire issue on “Global Challenges.”)
In order to advance autism science and services worldwide, we need our research knowledge to become freely available. However, global knowledge-sharing faces major barriers. Autism Speaks is taking steps to help tackle these barriers. We are doing so along with the International Society for Autism Research (INSAR) and agencies such as the National Institutes of Health, the Centers for Disease Control and Prevention and the World Health Organization.
Striking a Chord
The high point of Dr. Durkin’s talk was her call for the development and free distribution reliable and culturally adaptable autism screening and diagnostic tools. Though she was only midway through her talk, the applause didn’t wait. None of us could remember a more passionate audience response to an IMFAR speaker.
To meet Dr. Durkin’s challenge, we must work closely with local communities to better understand and address their needs in practical and culturally acceptable ways. We need to learn from them as much as they wish to learn from us.
She closed by calling for a historic expansion of epidemiologic research into low- and middle-income countries. As she discussed, this will require us to improve how we share information and engage communities and societies. In doing so, we will improve our understanding of autism as we improve the lives of those affected by it. Dr. Durkin left the stage to a moving round of extended applause.
Thanks to you
Thanks to the support of our community, Autism Speaks is playing its part in meeting this global challenge. We are funding the first prevalence studies in India, South Africa and Mexico. Through our Global Autism Public Health Initiative, we are exploring innovative ways to deliver effective services to communities with limited resources. We are doing so by encouraging partnerships between families, researchers and governments around the world.
There is still much left to do in addressing the autism public health crisis. Our success, as Dr. Durkin emphasized, relies on being more inclusive.