CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care Identification, Evaluation, and Management of Children With Autism Spectrum Disorder Susan L. Hyman, MD, FAAP,a Susan E. Levy, MD, MPH, FAAP,b Scott M. Myers, MD, FAAP,c COUNCIL ON CHILDREN WITH DISABILITIES, SECTION ON DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS Autism spectrum disorder (ASD) is a common neurodevelopmental disorder abstract with reported prevalence in the United States of 1 in 59 children (approximately 1.7%). Core deficits are identified in 2 domains: social aGolisano Children’s Hospital, University of Rochester, Rochester, New b communication/interaction and restrictive, repetitive patterns of behavior. York; Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania; and cGeisinger Autism & Developmental Medicine Institute, Danville, Children and youth with ASD have service needs in behavioral, educational, Pennsylvania health, leisure, family support, and other areas. Standardized screening for Clinical reports from the American Academy of Pediatrics benefit from ASD at 18 and 24 months of age with ongoing developmental surveillance expertise and resources of liaisons and internal (AAP) and external reviewers. However, clinical reports from the American Academy of continues to be recommended in primary care (although it may be performed Pediatrics may not reflect the views of the liaisons or the in other settings), because ASD is common, can be diagnosed as young as organizations or government agencies that they represent. 18 months of age, and has evidenced-based interventions that may improve Drs Hyman, Levy, and Myers all participated in development of the outline of material to be covered, generation of content, and editing of function. More accurate and culturally sensitive screening approaches are the document; and all authors approved the final manuscript as needed. Primary care providers should be familiar with the diagnostic criteria submitted. for ASD, appropriate etiologic evaluation, and co-occurring medical and The guidance in this report does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking behavioral conditions (such as disorders of sleep and feeding, gastrointestinal into account individual circumstances, may be appropriate. tract symptoms, obesity, seizures, attention-deficit/hyperactivity disorder, All clinical reports from the American Academy of Pediatrics anxiety, and wandering) that affect the child’s function and quality of life. There automatically expire 5 years after publication unless reaffirmed, is an increasing evidence base to support behavioral and other interventions revised, or retired at or before that time. to address specific skills and symptoms. Shared decision making calls for This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have filed collaboration with families in evaluation and choice of interventions. This conflict of interest statements with the American Academy of Pediatrics. Any conflicts have been resolved through a process single clinical report updates the 2007 American Academy of Pediatrics approved by the Board of Directors. The American Academy of clinical reports on the evaluation and treatment of ASD in one publication with Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication. an online table of contents and section view available through the American Academy of Pediatrics Gateway to help the reader identify topic areas within DOI: https://doi.org/10.1542/peds.2019-3447 the report. Address correspondence to Susan L. Hyman. E-mail: susan_hyman@ urmc.rochester.edu To cite: Hyman SL, Levy SE, Myers SM, AAP COUNCIL ON CHILDREN WITH DISABILITIES, SECTION ON DEVELOPMENTAL INTRODUCTION AND BEHAVIORAL PEDIATRICS. Identification, Evaluation, and Autism spectrum disorder (ASD) is a category of neurodevelopmental Management of Children With Autism Spectrum Disorder. Pediatrics. 2020;145(1):e20193447 disorders characterized by social and communication impairment and Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 145, number 1, January 2020:e20193447 FROM THE AMERICAN ACADEMY OF PEDIATRICS restricted or repetitive behaviors.1 criteria after publication of the in children at different ages. What is ASD affects more than 5 million Diagnostic and Statistical Manual of reported is age at recognition of Americans, with an estimated Mental Disorders, Fifth Edition (DSM- symptoms, not the actual onset. As prevalence of approximately 1.7% in 5)1 in 2013. The DSM-5 established a result, prevalence is more typically children.2 The care needs of children a single category of ASD to replace reported than incidence, reflecting with ASD are significant, affect the subtypes of autistic disorder, rates of ASD in the population at parents and siblings as well, and Asperger syndrome, and pervasive a point in time. require substantial community developmental disorder not The reported prevalence of children resources. Direct and indirect costs of otherwise specified in the Diagnostic with ASD has increased over time, caring for children and adults with and Statistical Manual of Mental and primary care providers are often ASD in the United States in 2015 were Disorders, Fourth Edition, Text asked about the reasons for this estimated to be $268 billion, more Revision (DSM-IV-TR). With the increase. This increase may be than the cost of stroke and current reported prevalence rate of 1: attributable to several factors, hypertension combined.3 The lifetime 59 children (approximately 1.7%), all including broadening in the cost of education, health, and other primary care providers can expect to diagnostic criteria with ongoing service needs for an individual with have children and youth with ASD in revisions of the Diagnostic and ASD ranges from $1.4 to $2.4 million their practices.2 As noted in earlier Statistical Manual of Mental Disorders dollars, depending on whether he or clinical reports, the primary care (DSM), the more inclusive definition she has any co-occurring intellectual provider has critical access to the of pervasive developmental disorder disabilities.4 To deliver timely and child in the context of the medical with the adoption of the Diagnostic effective medical, behavioral, home to identify symptoms of ASD and Statistical Manual of Mental educational, and social services early in childhood, support the family Disorders, Fourth Edition (DSM-IV) in across the lifespan means that through the process of diagnosis and 1994,8 increased public awareness of primary care providers must intervention, address etiologic the disorder and its symptoms, understand the needs of individuals evaluations, help the family recommendations for universal with ASD and their families. ASD is understand how to interpret the screening for ASD,5,9 and increased more commonly diagnosed now than evidence supporting different availability of early intervention and in the past, and the significant health, interventions so they can effectively school-based services for children educational, and social needs of engage in shared decision-making, with ASD. In part, the increasing individuals with ASD and their and manage co-occurring medical numbers of children with a diagnosis families constitute an area of critical conditions that may influence of ASD may reflect diagnostic need for resources, research, and outcome and affect daily function. substitution, the recognition of ASD in professional education. The primary care provider can help children previously primarily minimize disparities in age of diagnosed with intellectual disability In the 12 years since the American diagnosis of African American and or a co-occurring genetic syndrome.10 Academy of Pediatrics (AAP) Hispanic children and be alert to the A true increase in the prevalence of published the clinical report potential for gender bias in symptom ASD associated with other biological “Identification and Evaluation of recognition.7 This updated document risk factors is also possible. Children With Autism Spectrum aims to provide primary care Disorders”5 and its companion, providers with a summary of current Prevalence rates in US populations “Management of Children With information in a single report that are similar to those of other Autism Spectrum Disorders,”6 will help guide them in providing industrialized countries,11 and lower reported prevalence rates of ASD in a medical home for the patient rates are reported in resource-limited children have increased, with ASD. countries, where epidemiological data understanding of potential risk are more difficult to collect.12 Data on factors has expanded, awareness of national samples suggest that the co-occurring medical conditions and SECTION 1: PREVALENCE prevalence of ASD is stabilizing.2,13 genetic contribution to etiology has Incidence is the onset of new Ongoing epidemiological studies help improved, and the body of research diagnoses over time in a selected to understand changes in the supporting evidence-based cohort. Without consistent reported prevalence over time. interventions has grown substantially. longitudinal data in a specified Epidemiological data help to predict This updated clinical report builds on cohort, incidence cannot be the need for services and identify previous reports and guidance for determined. Because of the potential risk factors. Surveillance care of children and