Before she was named Assistant Director of Public Health Research at Autism Speaks in 2012, Amy Daniels was a globe-trotter. As an Asian studies major, she spent her junior year abroad at Peking University. After college, Daniels went to Ukraine as a Peace Corps volunteer, teaching English at a secondary school and leading youth programs at a social services center for vulnerable children. There, she interacted extensively with children with disabilities, who are often the most neglected in society and often institutionalized. She was struck by both the stark disparities in care and the importance of public health for addressing these children’s substantial needs.
Daniels continued her odyssey with the humanitarian aid non-profit AmeriCares, helping to lead the initial response to disasters such as the tsunami that hit Sri Lanka in December 2004. Her work required her to assess post-disaster needs, which sparked an interest in program evaluation and survey methodology. “I’m sure I did it completely wrong,” she recalls candidly, “because I didn’t have the training yet.”
To add that skill and many others, Daniels enrolled at the Bloomberg School. Her master’s advisor, Shannon Doocy, PhD ’04, who is a faculty member of the JHSPH Center for Refugees and Disaster Response, enlisted Daniels on a project to develop and implement a post-earthquake household survey in Peru. Daniels remembers how excited the JHSPH students were by their survey’s value to the communities on the ground.
In 2006, Daniels interned at the World Health Organization in Geneva, Switzerland, where she crunched data for a global initiative to assess the mental health systems of low- and middle-income countries. It was here that her experiences with program evaluation, needs assessment, and child health and development coalesced and led to pursuing a doctorate in public health in the Department of Mental Health.
Daniels credits her current position at Autism Speaks to networking with as many people from as many backgrounds as possible, and making connections with other students and faculty who “came from different experiences, different levels of knowledge and expertise,” yet were “open to sharing their experiences and working together.” She describes her advisor, Philip Leaf, and another mentor, David Mandell, as “rock stars” in their respective fields of child mental health services and autism services and policy.
Daniels had analyzed data from the Interactive Autism Network (IAN) research database at the Kennedy Krieger Institute, but after finishing her PhD, she wasn’t entirely committed to academia and considered returning to a nonprofit. Mandell introduced Daniels to a senior staff at Autism Speaks who later hired her. The more she learned about what the organization was doing in the realms of international public health, the more interested she became.
Daniels observes that while individual children are the public face of autism, “there are commonalities. Taking a public health approach helps understand those commonalities and how they translate into challenges and needs at the population level.” Autism is not just defined by core symptoms, such as repetitive behaviors and difficulties with social interaction, but is also accompanied by a wide range of difficulties, from co-morbid health conditions to access to care, that make it very much a public health issue.
Daniels is involved in overseeing and promoting a variety of public health research projects supported by Autism Speaks, including field testing of interventions and studies on risk factors and etiology, particularly genetic and gene environment perspectives. On the global front, she oversees activities in Europe and countries of the former Soviet Union as part of the organization’s Global Autism Public Health initiative.
Finally, Daniels noted that autism may be even more common than is currently believed. The most recent US prevalence estimate is 1 in 68, based on the CDC-funded Autism and Developmental Disabilities Monitoring Network Study. But researchers in South Korea, using more rigorous methodology, found a 1 in 38 prevalence. Findings from the Korea study may indicate that the prevalence of autism in the United States is a significant underestimate. “Regardless of the numbers, what is clear,” Daniels’ notes, “is that existing services are not meeting the growing population and needs of individuals on the spectrum.” As Autism Speaks continues to probe for answers to the puzzle of autism and provide solutions for families, Daniels is combining her passion for serving children with special health needs and her experience in brokering collaborative, evidence-based programs to benefit underserved and marginalized populations.