Special Needs Pioneer Promotes Research and a Better Understanding of Autism

Autism Warrior: Marshalyn Yeargin-Allsopp, MD

A medical officer and developmental pediatrician at the Centers for Disease Control and Prevention where she has worked since 1981. She is also an adjunct assistant professor of pediatrics at Emory University.

Special Needs Pioneer Promotes Research and a Better Understanding of Autism

How did you come to specialize in pediatrics and children with developmental disabilities?

I decided at a very young age that I wanted to be a doctor. When I learned that there are doctors just for children (“baby doctors”), the idea crystallized. I became interested in developmental pediatrics when, after completing residency and being a young physician practicing in a community clinic, I found that many pediatric questions and issues were related to development, behavior, school, and family issues.

And as I watched my infant son grow and develop, I also had questions about development. It was almost miraculous to me. I learned there was specialized training in this area, so I applied for the training program in developmental pediatrics at the Rose F. Kennedy Center at the Albert Einstein College of Medicine.

You joined CDC in 1981. At that time, was there any work underway to examine developmental disabilities? [If no] When did that change?

I joined CDC in 1981 as an EIS Officer. EIS stands for Epidemic Intelligence Service, which is a 2-year training program in epidemiology (the study of the spread or pattern of sickness and the factors associated with health in a group of people) and public health. At that time, CDC was regularly collecting data – or information – for different birth defects, but there were no data being collected for developmental disabilities.

Dr. Godfrey Oakley was the Chief of the Birth Defects Branch at CDC at the time, and he had become interested in whether we could start to collect data specifically for intellectual disability and cerebral palsy. As a new EIS Officer, my assignment was to examine whether we could collect data for developmental disabilities similar to how we were collecting it for birth defects.

You designed and implemented the first U.S. population-based study of developmental disabilities in school-age children in Atlanta. In a research article published in 2003, you identified 987 cases of autism among a group of children (ages 3 to 10 years), resulting in a prevalence (number of people with a sickness or condition) of 34 cases per 10,000 children. Why was this finding so significant?

This was a very important finding because before this study, it was believed that autism was rare. Studies at the time – in the late 1980s and early 1990s – were showing that out of every 10,000 children, about 4 or 5 had autism. This meant that it was a pretty rare condition. Parents and clinicians started questioning whether autism was actually this rare, as they reported seeing many more young children who seemed to have autism.

As a clinician, I agreed. I had not seen any children with autism during my medical training in the 1970s, but was also now seeing children who seemed to have autism. We reported findings from Atlanta that showed that, for every 1,000 children, about 3 or 4 had autism.

What have you learned since? And what key questions remain? What do you think has changed the most?

We have been collecting data for many years now, and we have been able to increase the number of places across the United States from which we pull our data. From these data, we have learned that the number of children with autism has been increasing in multiple communities across the United States over time.

Our most recent report from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network for the 2014 surveillance year shows that in children eight years old, 1 in 59 have autism; this has increased from 1 in 150 in 2000-2002. Questions remain about potential causes of autism and about those factors that might put a child at increased risk for autism. Although it is generally accepted that autism is due to the interaction between genes and environmental factors, it is still unclear which specific genes and which environmental influences play a role.

I believe what has changed the most is who is being identified with autism. In the 1990s, about two-thirds of children identified with autism had intellectual disability; whereas today, about two-thirds of children with autism have average to above-average intellectual ability.

What has been your most fulfilling experience working in the area of autism and developmental disabilities research?

My most fulfilling experience has been the opportunity to get to know some incredible people–other researchers, parents, autism advocates, and clinicians. Spending much of my professional career studying autism and developmental disabilities has enabled me to meet some of the brightest and most dedicated professionals and some of the most loving and committed parents.

You are now working in an area that examines disability across the lifespan. What does this phrase mean to you? Why is it an important area of work?

All people are affected by a disability at some point in their lives. As Senior Medical Officer in CDC’s Division of Human Development and Disability, I provide clinical guidance to our research and programs that aim to help people with disabilities live their lives to the fullest. One such program we are currently examining relates to medical transition of children with disability; basically, how we can help children with disabilities transition effectively from pediatric health care to adult health care. Not only does this affect people with autism, but it applies to children with all kinds of disabilities.

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Why is it important that the general public be aware of disabilities?

Currently, 1 in every 4 adults has a disability, and disability becomes more common as we age.  Disabilities affect all of us at some point in time. It is important to realize that although the medical and physical aspects of disability can be challenging, many individuals still have a good quality of life and live life to the fullest.

CDC is also committed to promoting disability inclusion. Including people with disabilities in everyday activities and encouraging them to have roles similar to their peers who do not have a disability is disability inclusion. This involves more than simply encouraging people; it requires making sure that adequate policies and practices are in effect in communities and within organizations.

When you look back on your career to date, what do you consider to be your most significant accomplishments?

In my opinion, my most significant accomplishment has been establishing a system that can be used to collect data on autism and other developmental disabilities so that we can have a better understanding of how many people have these conditions. Even more than that, though, is that these data have been used as a platform for improving the lives of individuals with autism and developmental disabilities and their families, as well as for inspiring other researchers and public health professionals.

What inspires you?

I am inspired by individuals and families living – and thriving – with a disability and who face the challenges they encounter with optimism, hope, and positivity. They not only inspire others but inspire me!

What are your goals for the future?

My goal is pretty simple: To continue to make a difference. This is the reason I went into pediatric medicine, the reason I joined CDC so many years ago, and the reason I’ve worked to promote research and programs that can help individuals with disabilities be able to live their lives to the fullest. I firmly believe that the greatest gift is the ability to help others, and I strive to find ways to do this every day.

This article was featured in Issue 93 – ASD Advice for Today and Tomorrow

Amy KD Tobik

Amy KD Tobik, Editor-in-Chief of Autism Parenting Magazine, has more than 30 years of experience as a published writer and editor. A graduate of Sweet Briar College in Virginia, Amy’s background includes magazine, newspaper, and book publishing. As a special needs advocate and editor, she coordinates with more than 300 doctors, autism specialists, and researchers to ensure people diagnosed with autism receive the services and supports they need for life. She has two adult children and lives in the Carolinas with her husband.