Autism Reports
2024
July 2024
The Centers for Medicare & Medicaid Services (CMS) has released the 2024 Medicaid & Children’s Health Insurance Program (CHIP) Beneficiaries at a Glance: Autism Infographic. The infographic provides an overview of the prevalence of autism, characteristics of Medicaid and CHIP beneficiaries with autism, prevalence of common co-occurring health conditions, and utilization of treatment services.
February 28, 2024
A recent report from the GAO analyzed how the IACC helps to promote the health and well-being of people with autism. It found that NIH has demonstrated 6 of 8 best practices to coordinate agency programs and activities but said that 2 best practices are only partially fulfilled and can be improved. The recommendations were to strengthen tracking and reporting of federal activities related to recommendations of the IACC Strategic Plan and the other was to enhance documentation of procedures to prevent duplication of effort. On March 18, GAO released an easy-read version of the report. The easy-read version uses plain language and visuals to make the report easier to understand.
February 2024
A new report from the Child of the North initiative reveals a crisis in children's autism assessment in the U.K. The report warns that thousands of autistic children and young people are waiting months—or even years—for health and education support. The report sets out a number of key recommendations for tackling the assessment crisis, calling for a "needs-led" approach instead of relying on a "diagnosis-led" system, where early identification becomes the norm and faster effective support is offered without relying on a diagnosis. The report also highlights that there has been a 306% increase in the number of children waiting for an autism assessment since COVID-19.
2023
July 2023
Autistic people often have greater health care needs than non-autistic peers. According to the National Autism Indicators Report: Health Care Experiences During the COVID-19 Pandemic, the pandemic-related changes in access to health care may have been an extra burden on autistic individual’s health and, ultimately, quality of life. Researchers at A.J. Drexel Autism Institute’s Policy and Analytics Center examined changes in access and disruptions to health care services for autistic children and adults during the beginning of the COVID-19 pandemic. These findings will inform better evidence-based practices for future public health emergencies to improve policies and programs for autistic individuals.
June 2023
Applied Behavior Analysis (ABA) is a type of behavioral therapy that incorporates psychological principles of learning theory and behavior modification. This resource is intended to provide an understanding of ABA, its history, purpose, and practice; give insight into diverse perspectives and individual experiences on what leads to positive or negative outcomes; and support individuals and families to advocate for the highest quality of care across Autism services and supports. The Autism Society of America says its mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully.
May 2023
National security organizations need highly skilled and intellectually creative individuals who are eager to apply their talents to address the nation's most pressing challenges. In public and private discussions, officials and experts addressed the need for neurodiversity in the national security community. The purpose of this report is to understand the benefits that people with neurodivergence bring to national security; the challenges in recruiting, working with, and managing a neurodiverse workforce; and the barriers in national security workplaces that prevent agencies from realizing the full benefits of neurodiversity.
March 2023
The CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network provides a snapshot of autism spectrum disorder (ASD) among 4-year-old and 8-year-old children in multiple communities across the United States. ADDM found that 1 in 36 (2.8%) 8-year-olds were identified with ASD in 2020. Although the report shows improvements in identification of autism over time, identification was disrupted by the COVID-19 pandemic.
March 2023
The National Autism Indicators Report: Introduction to Medicaid and Autism explores how autistic individuals use Medicaid and how their service use changes across the life span, from infants to older adults. The report uses data from the from the Centers for Medicaid and Medicare Services (CMS) from 2008-2016. The number of autistic people enrolled in Medicaid tripled between 2008 and 2016 to nearly 600,000, almost 70% of whom were children. The focus of service use changes across the lifespan, but little is published on how autistic adults over age 65 use long-term services and supports. Additionally, there is a lack of mental health services provided by Medicaid. This is the first report in the A.J. Drexel Autism Institutes' new Policy Insight series of National Autism Indicators Reports.
2022
April 18, 2022
The latest National Autism Indicator's Report: The Intersection Of Autism, Health, Poverty And Racial Inequity, written by the Autism Intervention Research Network on Physical Health (AIR-P) and the Health Services Systems Node of AIR-P, shows that autism, poverty, and non-white race/ethnicity appear to increase rates of health problems and challenges in accessing care. Each of these factors is an important health risk factor individually and they have an even greater impact in combination. According to the report, over half of autistic children live in low-income houses and one in four live in poverty, a rate higher than children without autism. Racial/ethnic disparities in health remained even when grouping data by household income.
2020
This report provides indicators of health and health care for autistic persons across the lifespan. Topics include overall health, health services, medication, insurance, and accessing services.
This report describes the impact of the Comprehensive Autism Care Demonstration (ACD), a program that offers ABA services to TRICARE-eligible beneficiaries. The report includes a discussion of clinical improvements seen in children with autism who are receiving ABA therapy and a description of lessons learned to improve the program.
The 2020 Community Report on Autism (PDF - 21 MB)
From the Autism and Developmental Disabilities Monitoring (ADDM) Network: A Snapshot of Autism Spectrum Disorder among 8-year-old Children in Multiple Communities across the United States in 2016.
The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years whose parents or guardians live in 11 ADDM Network sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin).
The Early Autism and Developmental Disabilities Monitoring (Early ADDM) Network, a subset of the overall ADDM Network, is an active surveillance program that estimates ASD prevalence and monitors early identification of ASD among children aged 4 years.
2019
This document summarizes several key national reports on transition for youth and young adults on the autism spectrum.
2018
Community Report from the Autism and Developmental Disabilities Monitoring (ADDM) Network (HTML version), Full Report PDF
A Snapshot of Autism Spectrum Disorder among 8-year-old Children in Multiple Communities across the United States in 2014. Funded by the Centers for Disease Control and Prevention (CDC), United States Department of Health and Human Services
Findings from the ADDM Network, on the basis of 2014 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD among children aged 8 years in multiple communities in the United States.
2017
Medical Therapies for Children with Autism Spectrum Disorder--An Update (HTML version), Full Report PDF (7 MB)
The purpose of this report is to examine the effectiveness and safety of medical interventions to treat autism symptoms for children aged 2 to 12 years. This report is a follow-up to reports released in 2011 and 2014.
Interventions Targeting Sensory Challenges in Children With Autism Spectrum Disorder—An Update (PDF - 4 MB)
This comprehensive evidence review funded by the Agency for Healthcare Research and Quality (AHRQ) was conducted to assess the effectiveness and safety of interventions targeting sensory challenges for children with autism spectrum disorder (ASD).
Federal Agencies Should Take Additional Action to Support Transition-Age Youth (HTML version), Full Report PDF (5 MB)
This report describes federal efforts to address the needs of youth on the autism spectrum as they transition to adulthood and way the federal government can improve planning for and delivery of these services.
2016
Youth with Autism: Roundtable Views of Services Needed During the Transition into Adulthood (HTML version), Full Report PDF (5 MB)
Youth with Autism Spectrum Disorder (ASD) transitioning to adulthood may need a wide range of services and supports to help them achieve their goals, according to a panel GAO convened in March 2016. The panel describes services and supports that youth (ages 14-24) with ASD transitioning to adulthood may need to address autism characteristics and other health conditions that affect their ability to attain their life goals.
Federal Autism Activities: Agencies Are Encouraging Early Identification and Providing Services, and Recent Actions Could Improve Coordination (HTML version), Full Report PDF (2.5 MB)
Federal agencies have taken various actions to encourage early autism identification and interventions, such as specifically soliciting research in these areas. From fiscal year 2012 through fiscal year 2015, the departments of Defense (DOD), Education, and Health and Human Services (HHS), awarded about $395 million for research on early identification and interventions for autism.
Youth with Autism: Roundtable Views of Services Needed During the Transition into Adulthood (HTML version), Full Report PDF (5 MB)
Youth with Autism Spectrum Disorder (ASD) transitioning to adulthood may need a wide range of services and supports to help them achieve their goals, according to a panel GAO convened in March 2016.
The USPSTF commissioned a systematic review to evaluate the evidence on the accuracy, benefits, and potential harms of brief, formal screening instruments for ASD administered during routine primary care visits, and the benefits and potential harms of early behavioral treatment for children identified with ASD through screening. The review focused on studies of screening in children younger than 3 years who were unselected (ie, not identified because of risk factors or concerns regarding ASD).
Report to Congress 2016: High-Priority Evidence Gaps For Clinical Preventive Services (PDF – 376 KB)
In this sixth annual report, the USPSTF has identified six recent topics for which the current evidence was insufficient for the Task Force to make a recommendation, including screening for autism in young children. Future research in these areas can help fill these gaps and would likely result in important new recommendations that will help to improve the health of Americans.
This is the 6th Community Report from the ADDM Network, which tracks the number and characteristics of children with ASD and other developmental disabilities in diverse communities throughout the United States. The purpose of this Community Report is to highlight the ADDM Network's most recent scientific findings on ASD and empower those living in the ADDM Network communities to use these data for action.
Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012: Summary | Full article
The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence and characteristics of ASD among children aged 8 years whose parents or guardians reside in 11 ADDM Network sites in the United States (Arkansas, Arizona, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin). For 2012, the combined estimated prevalence of ASD among the 11 ADDM Network sites was 14.6 per 1,000 (one in 68) children aged 8 years. Estimated prevalence was significantly higher among boys aged 8 years (23.6 per 1,000) than among girls aged 8 years (5.3 per 1,000).
2015
This report by the CDC describes survey-based estimates of the lifetime prevalence of autism spectrum disorder from the 2014 National Health Interview Survey (NHIS).
The USPSTF commissioned a systematic review to evaluate the evidence on the accuracy, benefits, and potential harms of brief, formal screening instruments for ASD administered during routine primary care visits, and the benefits and potential harms of early behavioral treatment for children identified with ASD through screening. The review focused on studies of screening in children younger than age 3 years who were unselected (i.e., not identified because of risk factors or concerns regarding ASD).
This report published by the A.J. Drexel Autism Institute's Life Course Outcomes Research Program presents evidence on a wide range of experiences and outcomes of young adults on the autism spectrum between high school and their early 20s.
Federal Autism Research: Updated Information on Funding from Fiscal Years 2008 through 2012 (HTML version), Full Report PDF (868 KB)
This report provides information gathered by the GAO on federal funding for autism research activities from 2008-2012.
2014
Resolution: "Comprehensive and Coordinated Efforts for the Management of Autism Spectrum Disorders"
(PDF – 145 KB)
(PDF – 145 KB)The World Health Organization through the 67th World Health Assembly adopted this resolution to advise a clear set of actions to facilitate comprehensive intersectoral response to the needs of persons with ASD and other developmental disorders in all countries with high-, middle-, and low-income.
through the 67th World Health Assembly adopted this resolution to advise a clear set of actions to facilitate comprehensive intersectoral response to the needs of persons with ASD and other developmental disorders in all countries with high-, middle-, and low-income. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010 – MMWR Surveillance Report (HTML version), (PDF – 711 KB)
This scientific research report from the CDC describes the background, methodology and results of a study of 2010 autism spectrum disorder prevalence data from the Autism and Developmental Disabilities Monitoring (ADDM) Network, which monitors the number of 8-year-old children with ASDs living in diverse communities throughout the United States.
Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 - FY 2012) (HTML version), Full Report PDF (3 MB)
This Report to Congress is required by Public Law 112-32 (PDF – 121 KB), the Combating Autism Reauthorization Act of 2011. The report describes progress and expenditures made in autism spectrum disorder (ASD)- related research and services activities across the Department of Health and Human Services, the Department of Education, the Department of Defense, the Environmental Protection Agency and the National Science Foundation from fiscal years 2010- 2012. Read the Full Report
In 2009, the Centers for Medicare & Medicaid Services (CMS) contracted with L&M Policy Research (L&M) and its partners, Truven Health Analytics (formerly the health care business of Thomson Reuters) and the National Association of State Directors of Developmental Disabilities Services, to address the growing need among federal and state policymakers and stakeholders for accurate and comprehensive information regarding available services and supports for people with ASD. The Autism Spectrum Disorders (ASD) State of the States of Services and Supports for People with ASD report stemmed from the Interagency Autism Coordinating Committee's (IACC's) 2010 and 2011 Strategic Plans. The overall goal of this project was to capture information about services for people with ASD across all federal and state-level agencies and offices that could serve as a useful tool and be updated on an as-needed basis. In addition, the project aimed to identify gaps in data.
2013
This resolution adopted by the General Assembly of the United Nations promotes the need to protect the human rights of individuals with ASD by ensuring equal opportunities and participation in society.
promotes the need to protect the human rights of individuals with ASD by ensuring equal opportunities and participation in society.Federal Autism Activities: Better Data and More Coordination Needed to Help Avoid the Potential for Unnecessary Duplication, GAO-14-16, November 20, 2013 (HTML version), Full Report PDF (3.7 MB)
This report describes the GAO's assessment of the activities of the Interagency Autism Coordinating Committee and the federal agencies within the Department of Health and Human Services, Department of Education, Department of Defense, National Science Foundation and Environmental Protection Agency from 2007-2013.
- Comments from the Department of Defense
- Comments from the Department of Education
- Comments from the Department of Health and Human Services
- Comments from the National Science Foundation
- IACC Public Member Response Letter to GAO Report, March 6, 2014 (PDF – 161 KB)
- GAO Response Letter to IACC Public Member Response Letter to GAO Report, April 3, 2014 (PDF – 116 KB)
Secure Document. 508 Compliance not Available.
Combating Autism Act: HHS Agencies Responded with New and Continuing Activities, Including Oversight (HTML version), Full Report PDF (758 KB)
This report describes how Department of Health and Human Services (HHS) agencies have responded to the Combating Autism Act of 2006 (CAA) by establishing some new autism activities and continuing others. The report focuses on the activities of the National Institutes of Health (NIH), the Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC).
2012
National Center for Health Statistics Data Brief – Diagnostic History and Treatment of School-aged Children with Autism Spectrum Disorder and Special Health Care Needs (HTML version), Full Report PDF (624 KB)
This report describes the results from a 2011 telephone survey of over 4,000 parents or guardians of a child between the ages of 6-17 who had a confirmed diagnosis of ASD, intellectual disability, and/or developmental delay. These survey interviews were a part of the Pathways to Diagnosis and Services Study, sponsored by NIMH, in collaboration with the CDC National Center for Health Statistics (NCHS) and the HRSA Maternal and Child Health Bureau at the Health Resources and Services Administration (HRSA). Key findings were that most children with ASD were diagnosed after age 5 and that they use multiple services and medications.
Restraint and Seclusion Resource Document (PDF – 1.5 MB)
The U.S. Department of Education issued this Resource Document to provide guidance, and describe fifteen principles that States, school districts, school staff, parents, and other stakeholders may find helpful to consider when States, localities, and districts develop practices, policies, and procedures on the use of restraint and seclusion in schools.
This scientific research report from the CDC describes the background, methodology and results of a study of 2008 autism spectrum disorder prevalence data from the Autism and Developmental Disabilities Monitoring (ADDM) Network, which monitors the number of 8-year-old children with ASDs living in diverse communities throughout the United States.
This report from the CDC provides a lay-friendly summary of the background and results of a study of 2008 autism spectrum disorder prevalence data from the Autism and Developmental Disabilities Monitoring (ADDM) Network, including both compiled information from all sites and a detailed state-by-state breakdown of the information. It also includes sections describing how these data may be used and questions and answers about autism and autism prevalence.
2011
Report to Congress on Activities Related to Autism Spectrum Disorders and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006-FY 2009) (HTML version), Full Report PDF (1 MB)
This Report to Congress is required by Public Law 109-416 (PDF – 49 KB), the Combating Autism Act of 2006 (CAA). The report describes progress and expenditures made in autism spectrum disorder (ASD) research and services activities since the enactment of the CAA. Read the Full Report | Read the Summary and Highlights
This report, released on April 1, 2011, assesses the implementation of evidence-based/promising practices through the lens of state experience, summarizing the current state of ASD-related services in Arizona, California, Connecticut, Indiana, Maine, Missouri, New Mexico, Pennsylvania, and Wisconsin. The report describes the types of services and supports provided by state and local governments; the sources of funding for programs; and the policy, staffing and implementation issues to be addressed to effectively serve people with ASD.
2010
This report describes the results of a comprehensive review of scientific evidence regarding the efficacy, effectiveness, safety, and availability of ASD-related psychosocial services and supports for children, transitioning youth, and adults with ASD, including data on the evidence based interventions for people with ASD across the lifespan and data on the costs associated with providing services to people with ASD.
2009
This is the second NIH Biennial Report submitted to Congress under the requirement established by Section 104 of the NIH Reform Act (Public Law 109-482 (PDF – 178 KB)). The report serves as a useful reference for understanding NIH activities and operations and includes information about NIH programs related to autism research.
This is the Report to Congress on the NIH Autism Centers of Excellence for Fiscal Years 2008 & 2009, required in Section 404H of the Combating Autism Act of 2006 (Public Law 109-416 (PDF – 49 KB)). This report is included as a chapter in the NIH Biennial Report for Fiscal Years 2008 & 2009, submitted to Congress under the requirement established by Section 104 of the NIH Reform Act (Public Law 109-482 (PDF – 178 KB)).
2006
Federal Autism Activities: Funding for Research Has Increased, but Agencies Need to Resolve Surveillance Challenges (PDF – 882 KB)
This report provides information on (1) the National Institutes of Health's (NIH) and the Centers for Disease Control and Prevention's (CDC) autism activities and these agencies' funding of autism activities, (2) programs that federal agencies have under way to support services for people with autism and concerns related to providing services, and (3) coordination of federal autism activities.
2005
This report reflect DHHS annual activities pertinent to Division A, Title I of the Children's Health Act of 2000, which include: Section 101 — Expansion, intensification, and coordination of activities of the National Institute of Health (NIH) with respect to research on autism; Section 102 — Developmental disabilities surveillance and research programs; Section 103—Information and education; and Section 104 — Interagency Autism Coordinating Committee. Section 105 of the Act requires the Secretary of HHS to submit an annual report to Congress "concerning the implementation of this title and the amendments made by this title".
GAO Report: Special Education – Children with Autism (PDF – 615 KB)
This report describes the trend in the number of children diagnosed with autism served under IDEA, the services provided to these children, the estimated per pupil expenditures for educating children with autism, and approaches to their education.
2004
This report reflect DHHS annual activities pertinent to Division A, Title I of the Children's Health Act of 2000, which include: Section 101 — Expansion, intensification, and coordination of activities of the National Institute of Health (NIH) with respect to research on autism; Section 102 — Developmental disabilities surveillance and research programs; Section 103—Information and education; and Section 104 — Interagency Autism Coordinating Committee. Section 105 of the Act requires the Secretary of HHS to submit an annual report to Congress "concerning the implementation of this title and the amendments made by this title".
2003
This report reflect DHHS annual activities pertinent to Division A, Title I of the Children's Health Act of 2000, which include: Section 101 — Expansion, intensification, and coordination of activities of the National Institute of Health (NIH) with respect to research on autism; Section 102 — Developmental disabilities surveillance and research programs; Section 103—Information and education; and Section 104 — Interagency Autism Coordinating Committee. Section 105 of the Act requires the Secretary of HHS to submit an annual report to Congress "concerning the implementation of this title and the amendments made by this title".
Complementing the activities of the IACC, the Department of Health and Human Services and the Department of Education sponsored an Autism Summit Conference. The summit provided a public forum to disseminate, evaluate, and integrate the latest practice- and science-based autism information among Federal, academic, and community participants. The summit included keynote addresses from public officials and sessions focused on issues such as implementation of optimal services, early screening and diagnosis, and biomedical research.
2002
This report reflect DHHS annual activities pertinent to Division A, Title I of the Children's Health Act of 2000, which include: Section 101 — Expansion, intensification, and coordination of activities of the National Institute of Health (NIH) with respect to research on autism; Section 102 — Developmental disabilities surveillance and research programs; Section 103—Information and education; and Section 104 — Interagency Autism Coordinating Committee. Section 105 of the Act requires the Secretary of HHS to submit an annual report to Congress "concerning the implementation of this title and the amendments made by this title".
2001
This report reflect DHHS annual activities pertinent to Division A, Title I of the Children's Health Act of 2000, which include: Section 101 — Expansion, intensification, and coordination of activities of the National Institute of Health (NIH) with respect to research on autism; Section 102 — Developmental disabilities surveillance and research programs; Section 103—Information and education; and Section 104 — Interagency Autism Coordinating Committee. Section 105 of the Act requires the Secretary of HHS to submit an annual report to Congress "concerning the implementation of this title and the amendments made by this title".
