Leadership in Health Care, Research, and Quality Improvement for Children and Adolescents With Autism Spectrum Disorders: Autism Treatment Network and Autism Intervention Research Network on Physical Health

* Abbreviations: AIR-P — : Autism Intervention Research Network on Physical Health ASD — : autism spectrum disorder ATN — : Autism Treatment Network FAC — : Family Advisory Committee GI — : gastrointestinal HRSA — : Health Resources and Services Administration NICHQ — : National Initiative for Children’s Healthcare Quality Autism spectrum disorders (ASDs) are a group of highly prevalent, lifelong neurodevelopmental disorders affecting social, communicative, and behavioral functioning. Recent studies estimate the prevalence of ASDs as 1 in 88,1,2 indicating the public health importance of the disorders and making the development of effective care and treatment of ASD an urgent priority. Among the health care concerns for children and youth with ASD is a major need to strengthen awareness and treatment of associated medical conditions with standardized, comprehensive approaches to evaluation, treatment, and monitoring. Many individuals with ASD have symptoms associated with underlying medical conditions, including seizures, sleep problems, gastrointestinal (GI) disorders, psychiatric conditions, nutritional deficiencies, and metabolic conditions; when left untreated, these conditions may not only compromise general health but also have clear effects on behavior, development, and educational outcomes for individuals with ASD. The problems that many children with ASD have with communication make the diagnosis and monitoring of medical conditions more challenging. Furthermore, the underlying biology of ASD may change the manifestations of various medical conditions and their response to treatment. Thus, special attention to these conditions is crucial for improving the quality of life for individuals with ASD. Children and adolescents with ASD encounter difficulties obtaining appropriate and necessary health care services. They have decreased access to medical specialists,3–5 coupled with increased medical expenditures and unmet needs, compared with other children with special health care needs and typically developing children.6,7 Autism Speaks and its predecessor, Cure Autism Now, have recognized the significant unmet medical needs among children and adolescents with ASD as well as the many gaps in knowledge among providers regarding the general health care challenges of individuals with ASD. Parents shared their frustrations and all too familiar tales of having to travel far distances … Address correspondence to James M. Perrin, MD, Department of Pediatrics, Harvard Medical School, MassGeneral Hospital for Children, 100 Cambridge St #1542, Boston, MA 02114. E-mail: jperrin{at}partners.org