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Thursday, January 2, 2020

Identification, Evaluation, and Management of Children with ASD

In The Politics of Autism, I discuss the sources of autism research funding -- including the Pentagon.

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.
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:

  • basic and translational science in the areas of genetics and epigenetics, neurobiology, environmental risk factors, and psychopharmacology to understand the typical and atypical brain development and function to develop ASD-specific behavioral and pharmacologic therapies;
  • clinical trials to test focused interventions informed by translational studies to provide the evidence necessary for community implementation;
  • epidemiological surveillance to gather data important for planning for current and future needs, including screening, diagnosis, and life span health and mental health services, with special attention to underserved populations; and
  • health services research to provide guidance for comprehensive, accessible, and culturally appropriate medical, educational, and behavioral care for children, youth, adults, and families affected by ASD.
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.