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Susan Levy

Regional Autism Clinic

Children's Hospital of Philadelphia
Philadelphia, PA 19104

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I am a developmental pediatrician specializing in neurodevelopmental disabilities. My clinical and research interests center on the care of children with autism spectrum disorders (ASD). My research focuses on early identification, diagnosis, surveillance and treatment of children with ASD. In particular, I focus on the use of complementary and alternative medical treatments (CAM).

I am the founder and director of the Regional Autism Center (RAC) at Children's Hospital of Philadelphia and serve 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.

PA-CADDRE is currently engaged in ongoing prevalence studies of ASD based on clinical record review in children 8 years of age residing in Philadelphia County. Our center, in collaboration with 15 other centers of the ADDM (Autism and Developmental Disabilities Monitoring) Network, recently reported the most current prevalence rates for autism in 8-year-old children across the country. In the 14 states included in the study during 2000 and 2002, the prevalence rate indicates that 3.3 to 10.6 out of every 1,000 children have autism, with a weighted average of 6.6 children with autism in every 1,000 children. Pennsylvania (specifically Philadelphia County) has a prevalence rate of 5.3 children with autism per 1,000 children. This rate is clustered with most states, which have a range of 5.2 to 7.6 autistic children in every 1,000 children. PA-CADDRE is embarking upon the next phase of surveillance, which will examine records of children who turned 8 years of age in 2006.
In addition, PA-CADDRE will participate in a multi-state collaborative study to help identify factors that may put children at risk for ASDs and other developmental disabilities. This study, SEED (Study to Evaluate Early Development), will take place in six different geographic areas across the country. The centers include Kaiser Research Foundation (California), Colorado Department of Public Health and Environment, Johns Hopkins University, University of North Carolina at Chapel Hill and University of Pennsylvania School of Nursing with Children's Hospital. It will be the largest collaborative scientific study to date to explore the causes of autism. The study will include a total of 900 children on the autism spectrum and two comparison groups, one composed of 900 children with other neuro-deveopmental disabilities other than autism and one with 900 typically developing children, for a total study sample of 2,700 children across all six sites.

I am also collaborating with researchers of PA-CADDRE to study the efficacy of integrating universal standardized general and autism-specific screening methods in a population of young children in urban pediatric practices associated with Children's Hospital. The goals of the study are to compare the effectiveness of a two-tiered screen (a general developmental screen, followed by an autism-specific screen if the child fails the general screen) compared to an autism-specific screen at critical ages (e.g., 18 months, 24 months and 36 months).

In addition, I am working closely with members of the Division of Gastroenterology, Hepatology and Nutrition to study intestinal permeability in children with ASD, which may have implications on the popular use of elimination diet treatments. In an earlier study we reported that more than 30 percent of young children with an average age of 4.5 years and who were recently diagnosed with ASD were using some type of CAM at the time of their initial evaluation at the RAC. I am currently studying the prevalence of CAM in a population of individuals who have a genetic disorder known as IDIC-15, which is highly associated with clinical manifestations of autism. Our goal is to understand the use of CAM in a population of individuals for which we know the etiology of autism in order to help gain an understanding of the factors that lead to the use of CAM by families of children with autism or other developmental disabilities.

Sample of Significant Publications

Levy SE, Hyman SL. Novel treatments for autistic spectrum disorders. Ment Retard Dev Disabil Res Rev. 2005. 11(2): 131-42.

Levy SE, Souders MC, Ittenbach RF, Giarelli E, Mulberg AE, Pinto-Martin JA. Relationship of dietary intake to gastrointestinal symptoms in children with autistic spectrum disorders. Biol Psychiatry. Feb 15, 2007. 61(4): 492-7.

Levy SE, Souders MC, Wray J, Jawad AF, Gallagher PR, Coplan J, Belchic JK, Gerdes M, Mitchell R, Mulberg AE. Children with autistic spectrum disorders. I: comparison of placebo and single dose of human synthetic secretin. Arch Dis Child. Aug 2003. 88(8): 731-6.

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