The goal of this initiative is to describe the health and health care trajectories of individuals with autism spectrum disorders (ASD) and their families, and to evaluate the feasibility of using a large population-based database for research on risk factors for ASD. The most recent prevalence data from the Centers for Disease Control and Prevention (CDC) show that one in 110 children have a diagnosis of Autism Spectrum Disorder (ASD), an increase of 57 percent between 2002 and 2006.

Clearly, ASD is a significant public health challenge.  ASD is characterized by core social and communication deficits.  Additionally, there are numerous reports of co-occurring medical conditions such as gastrointestinal disorders, immune dysfunction, and food sensitivities.  However, there is limited scientific evidence on the physical health correlates of ASD, particularly at a general population level. In particular, we know relatively little about the range of health trajectories of people with ASD, both before and after the initial presentation and diagnosis of ASD. Similarly, we know little about pre- and post-diagnosis patterns of health care use over time among people with ASD.

In this context, there is the need for a large-scale study of the health and health care trajectories of children with ASD and their families. A better understanding of the rate of co-occurring medical conditions in children with ASD and their families, and medical decision-making within these families, will inform health care service policy and planning. Additionally, health conditions may provide clues to the heterogeneity of the disorder by providing phenotypic subtypes that could be the basis for exploring genetic and environmental risk factors for ASD.

Such a Health Outcomes study would employ data on one or more large representative populations in the United States to describe the health and health care trajectories of individuals with ASD and their families. The initial phase of the study would analyze existing data to describe health outcomes and utilization of health care services in this population, both before and after ASD is identified for a given individual or within a given family. The study would also gather data that would determine the feasibility of using the database(s) for further exploration of genetic and environmental ASD risk factors.

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