Posted by Michael Rosanoff, MPH, Autism Speaks associate director for public health research and scientific review. (Follow me on Twitter @AS_ScienceGuy.)
For many scientists, autism is an inspiring lifelong challenge. For many families, it’s a lifelong challenge of a different kind. The mission we share – researchers and families alike – is to better understand autism and how to improve the lives of all who are affected.
Yet so many questions remain unanswered around autism’s growing prevalence. More importantly, we lack adequate support for the growing number of individuals needing services.
I would argue that the group best equipped to address these gaps in knowledge and services includes our current and future public health professionals.
For this reason, I was thrilled that Autism Speaks partnered with Columbia University’s Department of Epidemiology to co-sponsor “Breakthroughs in Autism and Related Disorders.” This scientific symposium connected families, students and public health professionals with a wide range of autism experts.
Through the lens of public health, the participants examined the urgent and rapidly growing needs of the autism community. Presentations focused on what we know and what we still need to learn about topics ranging from risk factors to diagnosis and treatment.
“We are only scratching the surface of the tip of the iceberg in understanding the causes of autism,” Helen Tager-Flusberg, Ph.D., said at the meeting. Dr. Tager-Flusberg currently serves as the president of the International Society for Autism Research. And she meant the over-the-top mixed metaphor. We're only scratching the tip.
Rising Prevalence Raises Questions
The symposium’s reoccurring theme was autism’s rising prevalence. It wasn’t that long ago when autism wasn’t even on the public- health radar. A 1967 report, for example, pegged its prevalence at less than one in a thousand young children. That meant that, for years, autism received relatively little research funding. Only highly trained specialists provided autism services, and they were few in number.
As we know, prevalence estimates have increased dramatically. Today, we estimate that autism affects at least 1 in 88 children and an untold numbers of adults. With this increase in reported prevalence, autism has become a public health priority for the two reasons I mentioned previously:
We must understand what is causing autism and the increased prevalence.
We must support the growing number children and adults affected.
What’s Driving the Increase?
The symposium speakers focused on what we know about the changing prevalence of autism. This included discussing the risk factors that may be playing a role.
We know that part of the increase is due to increased awareness and a broader diagnosis that helps identify less-severely affected individuals. However, these factors account for only a portion of the rise.
We’ve also found risk factors at play. These include influences during child development before and soon after birth. Some of the clearest examples include parental age and a mother’s nutrition around the time of conception, as well as infections during pregnancy. We know these factors can alter autism risk as they interact with genetic predisposition.
Yet even these known risk factors don’t fully explain the rise in prevalence. And few of them provide us with concrete, practical recommendations for reducing autism risk. This reminds us of the complexity of translating basic research into real-life solutions for families.
Meeting the Colossal Need
Regardless of why autism has increased, we have more people needing services than ever before. Moreover, we have growing numbers of adults with autism needing appropriate opportunities to become part of our society. This need will rapidly grow as today’s children reach adulthood in the coming years and decades.
Autism poses a particularly large public health challenge. Simply put, we’re talking about millions of children and adults, many of whom need costly, intensive services. The toll of childhood autism on family income and productivity can be huge. The need for continuing support can be lifelong.
What’s more, as a spectrum disorder, autism presents a broad range of symptoms and severity. As one speaker put it, we can learn a lot from research and treatment of other spectrum disorders such as epilepsy. But one of the lessons is that there may never be a one-size-fits-all solution.
The Road Ahead
The good news is that we know that early detection and early intervention can significantly improve outcomes. It’s our ability to deliver these services that hasn’t kept pace.
Major barriers exist to accessing even basic autism services, let alone to earlier services. These challenges are magnified for underserved populations such as rural communities and ethnic minorities.
In countries struggling with malnutrition and infectious disease, autism services can be almost non-existent. This is made worse in societies where autism comes with stigma and discrimination. Yet as we continue to see child mortality decline worldwide, are we prepared for the influx of children challenged by developmental disorders such as autism?
We must develop innovative strategies to expand evidence-based autism services around the world. In addition to sharing our experiences, we also have much to learn from resource-poor countries about delivering culturally sensitive and cost-effective care.
The symposium closed with a call to action. The challenges ahead are many. But so are the opportunities. Increased autism awareness has set the stage for public health professionals to deepen our understanding of causes and ramp up our delivery of effective services and supports. We are up to the task.
I’d like to extend a special thank you to the Autism Speaks community for sharing our passion and supporting this work. If you haven’t already, I hope you’ll visit our webpages on the Autism Speaks Early Access to Care Initiative and our Global Autism Public Health initiative. (Follow the text links.) You can also explore many of the public-health research projects we are funding using this website’s Grant Search.