As the issue of developmental disabilities among children began to enter the nation’s consciousness in the 1980s and 1990s, no one knew how common these conditions were or how best to deploy public resources for health, education and social services.
Dr. Marshalyn Yeargin-Allsopp of the Centers for Disease Control and Prevention stepped into the breach, initiating, designing and implementing studies and surveillance systems that have documented the scope of intellectual disabilities, cerebral palsy, hearing loss, vision impairment, epilepsy and autism.
“Dr. Yeargin-Allsopp has been a pioneer in identifying the prevalence of autism and other developmental disabilities,” said Dr. Deborah Hirtz, a professor of neurological sciences and pediatrics at the University of Vermont.
“The methods she adopted are globally recognized as the gold standard, and the body of work that has been developed from these systems has been instrumental in policies, public health practices and services for children with special health care needs,” Hirtz said.
As a pediatrician, Yeargin-Allsopp was deeply interested in childhood development and, after joining CDC in 1981, saw a huge opportunity to gain a better understanding of how many children are affected by developmental disabilities. In the process, she helped build the nation’s scientific infrastructure for surveillance of these conditions.
It wasn’t easy. The issue was new to many people and there was resistance from the educational community about sharing information. Through sheer persistence, she was able to get educational records, such as intelligence tests and teacher and psychiatric evaluations, that helped paint a fuller picture of the children and bolster CDC’s work.
“She had a really good sense of networking the communities to make these programs successful,” said Dr. Coleen Boyle, the director of CDC’s National Center on Birth Defects and Developmental Disabilities. “She was able to develop relationships with the people who represented the educational system and the health care providers for these children.”
Looking at the big picture, Boyle said, “Marshalyn’s major accomplishment was really bringing developmental disabilities into the mainstream of epidemiology.” Hirtz described Yeargin-Allsopp as the “champion for the previously under-recognized but important segment of our population–those with developmental disabilities.”
As a result of Yeargin-Allsopp’s work, today we know that about 10 million children have some type of developmental disability due to physical, learning, language or behavior impairments, and as many as one million children are living with autism spectrum disorder. Most important, her research laid the foundation for health care providers, schools and support organizations to provide better services to these children and their families.
The autism data has been “very powerful in influencing the expansion of health, social and educational services for these children,” Hirtz said. In addition, she noted that the data collected on hearing loss through the surveillance system has led to universal screening of children’s hearing at birth.
Yeargin-Allsopp’s first study began in 1984 when the CDC started conducting surveillance in the Atlanta metropolitan area to determine the prevalence of selected developmental disabilities among children. This study became the model for CDC’s work and, in 1991, led Yeargin-Allsopp to develop and implement the first ongoing population-based active surveillance system for developmental disabilities in the United States.
In 1998, these surveillance methods were used in a study of autism in a New Jersey community, which resulted in the establishment of a national autism monitoring network. This was the first time the government was able to collect comprehensive autism data that was based, in part, on behavioral descriptions that could be standardized across the country.
Yeargin-Allsopp’s scientific contributions include more than 100 publications that have been cited more than 7,000 times, and developmental disabilities epidemiology studies that are considered among the best in the world. Yeargin-Allsopp is now the associate director for children with special health care needs at the CDC’s National Center on Birth Defects and Developmental Disabilities, and has been working on issues ranging from cerebral palsy to the Zika virus.
Yeargin-Allsopp, who grew up in the segregated South and was the first African-American woman at the Emory University School of Medicine, said she has been guided by a strong faith, a supportive family, positive role models and a commitment to public service. Even after 37 years at the CDC, she’s not ready to call it quits.
“There is still a lot of work to be done,” she said. “We all have to find our place and do what we can do to make this a better world. It’s not a time to back off. It is a time to ratchet it up as far as I’m concerned.”