Autism spectrum disorder, or ASD, affects approximately one in 59 U.S. children, according to the most recent prevalence data from the Centers for Disease Control and Prevention. It’s a set of disorders with profound effects for children and parents alike, characterized by core difficulties in communicating and interacting with others, repetitive behavior patterns and obsessive interests, with wide variations in the severity of those symptoms as well as in language and intellectual abilities.
Psychologist Ann E. Wagner, PhD, has been at the forefront of research on ASD as chief of the National Institute of Mental Health’s Biomarker and Intervention Development for Childhood-Onset Mental Disorders Branchopens in new window, which houses the institute’s Autism Research Program. In that capacity, she oversees a wide range of studies on the characterization, pathophysiology, treatment and outcomes of people with ASD and related neurodevelopmental disorders. Last year, U.S. Department of Health and Human Services Secretary Alex Azar appointed Wagner the country’s second national autism coordinator, a role mandated by Congress in 2014 that she is holding in conjunction with her branch chief job.
In the new position, Wagner helps coordinate and implement the activities of the federal departments and agencies involved in research, service and policy related to ASD. The work helps put into practice recommendations from the Interagency Autism Coordinating Committee, a key government committee whose federal and public members help to shape the nation’s research and service priorities.
“While it’s great for the government to get input from community stakeholders,” Wagner explains, “we need an internal process for figuring out how best to address those recommendations.”
The Monitor asked Wagner about our current understanding of ASD, her views on promising trends in research and intervention, and her new role.
How has our understanding of autism changed in the past 15 years?
One is that we now see autism spectrum disorders on a continuum rather than as discrete disorders with different characteristics, a change that’s reflected in the DSM-5 [Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition]. The intent behind this change is to think about the core symptoms of ASD, including social communication disorders and repetitive and restrictive interests, along a dimension of mild to more severe. Therefore, people with ASD—including those formerly diagnosed with autistic disorder, Asperger’s syndrome and pervasive developmental disorder not otherwise specified—can have more or less pronounced versions of these same problems. In addition, specific behaviors within a category, like the category of repetitive behavior, can vary from person to person.
Our understanding of the genetic aspects of the disorder has also become more sophisticated, giving us clues about the onset and biology underlying ASD. For instance, research is starting to show that the genes involved in specific biological processes, such as the development of neuronal connections, may in some cases be expressed prenatally.
And, there is increased attention to the strengths of people with ASD—a recognition that they may have abilities that can be very useful to society and that are typically underutilized, such as the ability to discern patterns or pay attention to specific details.
In general, there is greater awareness about ASD. That said, even though we can diagnose ASD by age 2, the average age of diagnosis is still much later.
What are some of the most exciting developments in terms of interventions?
The best interventions we have for the core features of autism are behavioral interventions, many of them developed by psychologists. For example, Sally Rogers of the University of California, Davis, and Geraldine Dawson of Duke have developed the Early Start Denver Modelopens in new window, which uses naturalistic play to teach and reinforce social reciprocity. Researchers are trying to identify who responds best to which interventions so that interventions can be tailored accordingly.
Related to this, an exciting area is our increased ability to detect signs of ASD earlier in a child’s life. Investigators at [psychiatrist] Joseph Piven’s labopens in new window at the University of North Carolina, for instance, have shown differences in the patterns of neural activity in babies at 6 months who later developed an autism spectrum disorder. At Yale, researchers at [psychologist] Ami Klin’s labopens in new window have developed a groundbreaking eye-gaze methodology for assessing the potential of developing ASD. They have found that at 2 months, infants who later developed ASD actually looked at caregivers’ eyes as often as those who did not develop ASD, but that between 2 to 6 months, that ability declined. If replicated and developed into practical screening tools, findings like these could help us identify the very earliest signs that development is not proceeding typically and tailor early interventions to those developmental processes.
What is the focus of your new position?
In general, it’s to help government departments and agencies coordinate their efforts on autism and implement the advice we hear from the community. We have an internal federal working group that meets periodically.
One important area we’re focusing on is addressing the challenges faced by young adults and youth with ASD who are transitioning to adulthood—for example, obtaining supports and services needed to get post-high-school training, education, employment and social relationships—areas identified in a report by the first national autism coordinator, Dr. Thomas Novotny. While services are generally available to children and teens through schools and educational programs, there’s an alarming drop in how connected they are with their communities once they leave school. That means they are vulnerable to becoming increasingly socially isolated and less independent than they could be, and probably more vulnerable to untreated medical or mental health conditions.
What are your hopes for the field?
My ultimate goals are to continue finding interventions that work and building awareness of the strengths of people with ASD. Intervening early is how we’re going to get the most bang for our buck, and understanding the neurobiology of ASD will help us get to more effective treatments and interventions. But there remains a real dearth of interventions and services for older adolescents and adults, so we need to keep working on that, as well as on making sure that evidence- based practices are implemented properly.
In terms of my new role, my hope is that by giving the people who make decisions about policy and services a venue to talk together and coordinate, we can make some real changes that make things easier for people with these disorders and their families.
