Executive Summary: Identification, Evaluation, and Management of Children With Autism Spectrum Disorder

Autism spectrum disorder (ASD) is a common neurodevelopmental disorder with reported prevalence in the United States of 1 in 59 children (approximately 1.7%). ASD significantly influences the lives of affected children and families because they may need extensive behavioral, educational, health, and other services. Primary care providers play a critical role in identifying, diagnosing, and managing ASD in children and providing support for their families. This document provides a summary of the clinical report “Identification, Evaluation, and Management of Children with Autism Spectrum Disorder,” published concurrently in the online version of Pediatrics. In the years since 2007, when the American Academy of Pediatrics published the clinical reports “Identification and Diagnosis of Children with Autism Spectrum Disorders” and “Management of Children with Autism Spectrum Disorders,” reported prevalence rates of children with ASD have increased, understanding of potential risk factors has expanded, awareness of co-occurring medical and behavioral conditions and genetic contribution to etiology has improved, and the body of research supporting evidence-based interventions has grown substantially. The updated document discusses evaluation and treatment as a continuum in 1 publication with a table of contents to help the reader identify topic areas within the report. ASD is more commonly diagnosed than in the past, and the significant health, educational, and social needs of individuals with ASD and their families constitute an area of critical need for resources, research, and professional education.High-quality pediatric care calls for the development of systems to promote accurate and early identification, cost-effective and timely diagnosis, prompt implementation of evidence-based interventions, involvement of the patient and family in shared decision-making, and steps toward elimination of disparities in access to care for all children and youth with ASD. Care within a medical home, using a chronic care model in which health and community systems interact with informed patients and families to ensure more-satisfactory outcomes, is recommended for children with ASD.Shared decision-making calls for the health care provider to engage in respectful, reciprocal dialogue to plan and monitor choices in care. The pediatrician can help educate youth with ASD and their families about how to evaluate the evidence for interventions, advocate for participation in clinical research when appropriate, refer families to support organizations, include the patient in decision-making, and prepare families to navigate transitions.All children and youth with ASD should have a medical home, a source of care that is accessible, collaborative, culturally sensitive, knowledgeable, and cost-effective. To best serve patients and families affected by ASD, the clinician caring for children and youth with ASD should be familiar with issues related to diagnosis, co-occurring medical and behavioral conditions, and the impact of ASD on the family to provide a medical home for these patients. Actively addressing capacity building to care for children and youth with ASD requires initiatives directed at provider education and practice quality improvement and public health, educational, and social programs to support families in their journey from diagnosis to service provision to the transition to adult care.The American Academy of Pediatrics supports the current approach taken by the Interagency Autism Coordinating Committee of the National Institutes of Health of including representative stakeholders in planning a meaningful research agenda. Stakeholders include families and affected individuals, scientists, clinicians, and public health agencies. This committee’s 2009 strategic plan, updated in 2017, identified 7 areas for research funding: (1) early detection, (2) underlying biology, (3) genetic and environmental risk factors, (4) treatments and interventions, (5) services and implementation science, (6) life span services and supports, and (7) epidemiological surveillance and infrastructure. It is important that multiple levels of inquiry be pursued simultaneously to inform evidence-based clinical care. These include the following:Research in all of these areas is critical to move forward with early diagnosis, effective treatment, and evidence-based interventions at each age. To provide appropriate care to all children and families affected by ASD, organizations responsible for health, education, social services, and public health need to collaborate and build integrated and adequately funded and staffed systems. The pediatric health care provider plays a critical role in identifying young children at risk for ASD; shepherding these children through diagnosis and into effective interventions; supporting the families, including siblings; anticipating and managing co-occurring health and behavioral disorders; and preparing the youth and family for transition to adult services. The updated clinical report provides the health care provider with information and resources to support the care of the child and family affected by ASD.Susan L. Hyman, MD, FAAPSusan E. Levy, MD, MPH, FAAPScott M. Myers, MD, FAAPPaul H. Lipkin, MD, FAAPMichelle M. Macias, MD, FAAPAnne B. RodgersDennis Kuo, MD, MHS, FAAP, ChairpersonSusan Apkon, MD, FAAPLynn F. Davidson, MD, FAAPKathryn A. Ellerbeck, MD, FAAPJessica E.A. Foster, MD, MPH, FAAPSusan L. Hyman, MD, FAAPGarey H. Noritz, MD, FAAPMary O’Connor Leppert, MD, FAAPBarbara S. Saunders, DO, FAAPChristopher Stille, MD, MPH, FAAPLarry Yin, MD, MSPH, FAAPTimothy Brei, MD, FAAPBeth Ellen Davis, MD, MPH, FAAPSusan E. Levy, MD, MPH, FAAPPaul H Lipkin, MD, FAAPScott M. Myers, MD, FAAPKenneth Norwood, Jr, MD, FAAP, Immediate Past ChairpersonCara Coleman, MPH, JD – Family VoicesMarie Mann, MD, MPH – Maternal and Child Health BureauEdwin Simpser, MD, FAAP – Section on Home CarePeter J. Smith, MD, MA, FAAP – Section on Developmental and Behavioral PediatricsMarshalyn Yeargin-Allsopp, MD, FAAP – Centers for Disease Control and PreventionAlex Kuznetsov, RD akuznetsov@aap.orgCarol C. Weitzman, MD, FAAP, ChairpersonDavid Omer Childers, Jr, MD, FAAPJack M. Levine, MD, FAAPMyriam Peralta-Carcelen, MD, MPH, FAAPPeter J. Smith, MD, MA, FAAPNathan L. Blum, MD, FAAP, Immediate Past ChairpersonJohn Ichiro Takayama, MD, MPH, FAAP, Web site EditorRebecca Baum, MD, FAAP, Section Member, Committee on Psychosocial Aspects of Child and Family HealthRobert Voigt, MD, FAAP, Newsletter EditorCarolyn Bridgemohan, MD, FAAP, Program ChairpersonNerissa S. Bauer, MD, MPH, FAAPEdward Goldson, MD, FAAPMichelle M. Macias, MD, FAAPLaura Joan McGuinn, MD, FAAPMarilyn Augustyn, MD, FAAP – Society for Developmental and Behavioral PediatricsBeth Ellen Davis, MD, MPH, FAAP – Council on Children With DisabilitiesAlice Meng, MD, FAAP – Section on Pediatric TraineesPamela C. High, MD, MS, FAAP – Society for Developmental and Behavioral PediatricsCarolyn McCarty, PhD cmccarty@aap.orgLinda Paul, MPH lpaul@aap.org