CPHI Senior Fellow discusses her research on autism spectrum disorders (ASD) and discusses the changing prevalence of ASD and its’ public health implications.
Susan E. Levy is a pediatrician specializing in neurodevelopmental disabilities. Her clinical and research interests center on the care of children with autism spectrum disorder (ASD). Her research focuses on early identification, diagnosis, surveillance and treatment of children with ASD. In particular, Dr. Levy focuses on the use of complementary and alternative medical treatments (CAM).
Dr. Levy is the founder and director of the Regional Autism Center (RAC) at Children’s Hospital of Philadelphia and serves as the co-principal investigator of PA-CADDRE (Pennsylvania Center for Autism and Developmental Disabilities Research and Epidemiology). PA-CADDRE is a Center for Disease Control and Prevention-funded research program of The University of Pennsylvania School of Nursing and Children’s Hospital. The goals of this program include ASD surveillance to determine prevalence, screening and early identification of ASD, and research on the etiology of ASD.
Autism Spectrum Disorders – A Look into the Changing Prevalence over Time
Q: What do we know about Autism Spectrum Disorder (ASD)
Autism spectrum disorder (ASD) is characterized by a number of factors including:
- Persistent deficits in social communication and social interaction across multiple contexts;
- Restricted, repetitive patterns of behavior, interests, or activities;
- Symptoms must be present in the early developmental period (but may not be recognized until later); and cause clinically significant impairment in social, occupational, or other important areas of functioning.
The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment or disability that children with ASD can have.
Q: How has our understanding of Autism changed over time?
Autism today is quite different compared to 15 years ago when I first became involved in the research. This is in large part due to changing criteria with different versions of the DSM diagnostic manual, which paralleled some of the changes in the reported prevalence. The biggest change happened in 2013 when the criteria changed to combine social characteristics and communication into one category – which really makes sense because communication that is not for social purposes is not as meaningful. The changes in criteria over the years have made a difference in terms of how we look at the field – the criteria went from being very narrow to much broader.
Q: What would you tell parents who are concerned about the link between Autism and Vaccinations?
I feel that the evidence is firm that vaccinations, particularly the MMR, are not related as a cause of autism. I think that families deciding without full information to withhold vaccination are putting other children and individuals at very high risk.
Q: Where do you see the field of ASD going?
Moving forward, hopefully we will look at the autism spectrum disorder as a category of disability with a better appreciation for the range in severity of symptoms and core difficulties, and the impact of co-occurring symptoms or disorders which have a large impact on quality of life. That’s an area in the clinic that we’re much more tuned into now because of some of the work we’ve done with our Autism Speaks grant, looking at the impact of co-occurring conditions such as sleep disorders.
The other important area is the move over the last ten years to earlier identification, and with promising tools and strategies to identify kids at high risk for the diagnosis – such as kids with genetic disorders, premature infants, and siblings of kids with autism. There’s a really a big push towards early identification.
Q: What research are you currently working on?
My largest project is with Jennifer Pinto-Martin on a CDC funded large multi-site case-control study of risk factors for ASD in children ages 2.5-5 with autism. It’s a case-control study with 3 groups: one group of kids who have ASD, one group of kids who have developmental delay (not autism), and the 3rd group is a population control. It’s a phenomenal study with a very large sample size in all groups. We are just starting to delve into the data, looking at the phenotypes and risk factors.
The other research program I am involved in is through Autism Speaks Autism Treatment Network (AS-ATN). Autism Speaks has funded 17 autism treatment networks across the country and in Canada and is committed to investigating and improving medical care for kids with ASD, as well as identifying difficulties. We have enrolled families into the database, and have started to study and look at issues about treatment.
Q: How does your research translate into practice?
I’ve recently taken a course from CHOP’s Office of Clinical Quality Improvement and am a champion for my division in terms of looking at quality improvement and improving patient safety. So a big focus of my activities has been developing pathways and strategies for different providers or experts to evaluate children with ASD and other neurodevelopmental disorders and identify comorbid behaviors that could complicate treatment and progress. Thus, what we’ve learned from the CDC study in terms of risk factors and causes and profiles is going to help us in terms of management.
Career Path – From Clinician to Researcher and Public Health Advocate
Q: How did you get started in the field of development disabilities?
I became interested in developmental disabilities during my residency at St. Christopher’s Hospital for Children. As a 2nd and 3rd year resident, I realized I was very interested in taking care of kids with special healthcare needs and chronic neurological and developmental disorders. My first year of fellowship focused on developmental disorders, and then I received more training at Kennedy-Krieger Institute at Hopkins. I came to CHOP and Penn in the early 80s to work in our general developmental disability evaluation unit. Shortly after, I became interested in ADHD and along with a child psychiatrist (Dr. Tony Rostain); we founded the CHOP ADHD evaluation and treatment program.
Q: What provoked your work with ASD?
I became interested in ASD In the early 90s and received additional training. At that time I also started working with Jennifer Pinto-Martin. In the summer of 2001, we submitted a grant to the CDC and we were chosen as one of the centers to be a surveillance site and to develop a multi-site case-control study. For me, in a sense, the rest was history.
Q: Why did you decide to receive a Master of Public Health?
In the mid-2000s, I started thinking, ‘I’m doing public health research; I really need to get more training.’ In 2009 I started the MPH program, and then graduated in May 2013. The MPH has given me a great perspective in terms of appreciating the challenges and issues of kids with autism and special healthcare needs. As a clinician, my training in public health also helps me talk to people when they are concerned that ASD is an “epidemic – that there is not an increased risk of having it due to exposure as we would classically talk about an epidemic.” Rather, we know that the increased numbers are related to the broadening criteria over time, heightened awareness about the diagnosis, and earlier diagnosis. So I started off as ‘just a clinician,’ and morphed into this researcher and public health advocate.
Q: How do you consider yourself a Public health Advocate?
I’ve been active in the American Academy of Pediatrics, particularly the Council on Children with Disabilities. I’ve been a contributor to the clinical reports in terms of diagnosis and treatment of kids with autism spectrum disorders; I was a co-author of the autism toolkit to help pediatricians, and using what I learned from my capstone on shared decision making, I’m going to co-author a clinical report for the American Academy on shared decision making for children with developmental disorders, bringing it full circle.