Report to Congress

on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities

FY 2019 - FY 2023

Full Report

Table of Contents | News Release

Background

Individual pictures of three people, a child, teenager and older adult, smiling

Introduction

Autism Spectrum Disorder

According to the U.S. Centers for Disease Control and Prevention (CDC), autism spectrum disorder (ASD) is a developmental disability estimated to affect 1 in 36 children¹ and approximately 2% of adults² in the United States. Autism contributes to differences in areas including social interaction and communication, executive functioning, sensory processing, and motor coordination. These differences can impact social relationships and other aspects of daily living. Each individual on the autism spectrum has a distinct and unique set of strengths and challenges and may need varying levels of support in different areas. For example, data from the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network estimates that 37.9-48.5% of children on the autism spectrum have co-occurring intellectual disability.^1,3 Individuals on the autism spectrum with accompanying language and/or intellectual disabilities or other co-occurring physical or mental health conditions may require specialized supports across the lifespan.

Research suggests that autism can be reliably diagnosed by the age of 18-24 months.⁴ However, the median age of diagnosis in the United States is not until after 4 years of age,¹ and diagnosis often occurs even later among those without intellectual disabilities or delays in social communication.^1,3,5 Because autism is a lifelong condition, and the combination and degree of characteristics can differ greatly from one individual to another, its associated challenges and support needs can range from modest to very extensive. The federal government conducts a variety of activities with the goal of maximizing the health and well-being of autistic children and adults. However, additional research and efforts are needed to better understand the biological differences that underlie autism; increase early identification; develop and improve interventions; and promote access to interventions, supports, and services across the entire lifespan for all individuals on the autism spectrum.

Autism continues to be a top national health priority. Federal agencies, private research and services organizations, advocacy groups, academia, state and local agencies, and other entities engage in collaborative efforts to advance autism research and improve relevant services and support systems. This report describes activities and efforts of federal departments and agencies to address research, health, and related services and support needs that will improve outcomes for children, adolescents, and adults across the autism spectrum.

Editorial Note on References to Autism: The terms "person with autism," "person with autism spectrum disorder (ASD)," "autistic person," and "person on the autism spectrum" are used interchangeably throughout this document. Some members of the autism community prefer one term, while others prefer another. The U.S. Department of Health and Human Services (HHS) respects the different opinions within the community on the use of this language and does not intend to endorse any particular preference. In addition, the term "autism" is generally used in this document, and "ASD" is used when referring specifically to the DSM-5-TR defined diagnosis. HHS supports the use of accessible language in its public documents, including documents related to autism.

Legislative Background

The Combating Autism Act (CAA) of 2006 (Public Law 109-416) was enacted on December 19, 2006, to strengthen federal coordination around autism. The CAA amended the Public Health Service Act to authorize the expansion and enhancement of federal activities related to autism research, surveillance, early detection, interventions, education, and disability programs. The law also reconstituted the Interagency Autism Coordinating Committee (IACC), originally created under the Children’s Health Act of 2000 (Public Law 106-310), as a federal advisory body with specific membership requirements and a charge to provide federal coordination of autism-related activities, as well as a venue for public input on issues related to autism.

The CAA authorized $945 million in federal funds to support autism-related federal efforts through September 30, 2011. Additionally, the CAA required the Department of Health and Human Services (HHS), in conjunction with other federal departments, to submit a report to Congress on the progress made in implementing provisions of the CAA. The law was reauthorized as the Combating Autism Reauthorization Act (CARA) of 2011 (Public Law 112-32). The CARA provided for a continuation of federal autism programs authorized in the CAA, including the IACC, and also required a report to Congress describing progress on federal autism activities.

The legislation was next reauthorized as the Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act) of 2014 (Public Law 113-157). This law reauthorized the continuation of the IACC and several other federal autism-related programs. It also required HHS, in conjunction with other federal departments, to submit a report to Congress on federal autism activities. Additionally, the Autism CARES Act of 2014 required the preparation of a second report "concerning young adults with autism spectrum disorder and the challenges related to the transition from existing school-based services to those services available during adulthood."

One new provision of the Autism CARES Act of 2014 was the creation of the role of the National Autism Coordinator (NAC) within HHS to "oversee, in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities;" "implement autism spectrum disorder activities, taking into account the strategic plan developed by the IACC;" and "ensure that autism spectrum disorder activities of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative."

Autism CARES Act of 2019

The Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act) of 2019 (Public Law 116-60) was signed into law on September 30, 2019. The law reauthorized the autism-related activities that were conducted under the Autism CARES Act of 2014 and authorized $1.8 billion in federal funds to provide support for activities related to autism research and services through 2024.

The Autism CARES Act of 2019 also includes the following provisions:

Continues efforts in autism surveillance, research, education/awareness, early detection, and intervention, including efforts to increase cultural competency and provider training across several federal departments/agencies.
Reauthorizes the IACC to coordinate federal agency efforts related to autism, serve as a forum for public input, and provide advice to the HHS Secretary on matters pertaining to autism.
Adds four new federal departments to the IACC: the U.S. Departments of Housing and Urban Development, Justice, Labor, and Veterans Affairs.
Requires a Report to Congress on federal activities related to health and well-being in individuals with autism.
Requires a Report to Congress on activities related to autism, including progress made in implementing the provisions of the Autism CARES Act of 2019.

For additional information on reports to Congress and authorizations under the CAA, CARA, Autism CARES Act of 2014, and Autism CARES Act of 2019, see Table 1.

Table 1: Past and current U.S. autism legislation, with date of enactment, authorized funding amount, and required reports to Congress.

U.S. Autism Legislation
Legislation Combating Autism Act (CAA) of 2006 (Public Law 109-416)	Date Enacted December 19, 2006	Authorized Amount $945 million	Required Reports Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities under the Combating Autism Act of 2006 (FY 2006 – FY 2009)
Legislation Combating Autism Reauthorization Act (CARA) of 2011 (Public Law 112-32)	Date Enacted September 30, 2011	Authorized Amount $693 million	Required Reports 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)
Legislation Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act) of 2014 (Public Law 113-157)	Date Enacted August 8, 2014	Authorized Amount $1.3 billion	Required Reports Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Autism CARES Act of 2014 (FY 2014 – FY 2018) 2017 Report to Congress: Young Adults and Transitioning Youth with Autism Spectrum Disorder
Legislation Autism CARES Act of 2019 (Public Law 116-60)	Date Enacted September 30, 2019	Authorized Amount $1.8 billion	Required Reports 2021 Report to Congress on the Health and Well-Being of Individuals with Autism Spectrum Disorder Under the Autism CARES Act of 2019 Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Autism CARES Act of 2019 (FY 2019 – FY 2023)(current report)

U.S. Autism Legislation

Legislation

The following elements of this Report to Congress are required by the Autism CARES Act of 2019:

"A description of the progress made in implementing the provisions of the Autism CARES Act of 2019;"
"A description of the amounts expended on the implementation of the amendments made by the Autism CARES Act of 2019;"
"Information on the incidence and prevalence of autism spectrum disorder, including available information on the prevalence of autism spectrum disorder among children and adults, and identification of any changes over time with respect to the incidence and prevalence of autism spectrum disorder;"
"Information on the average age of diagnosis for children with autism spectrum disorder and other disabilities, including how that age may have changed over the 4-year period beginning on September 30, 2019, and, as appropriate, how this age varies across population subgroups;"
"Information on the average age for intervention for individuals diagnosed with autism spectrum disorder and other developmental disabilities, including how that age may have changed over the 4-year period beginning on September 30, 2019, and, as appropriate, how this age varies across population subgroups;"
"Information on the average time between initial screening and then diagnosis or rule out for individuals with autism spectrum disorder or other developmental disabilities, as well as information on the average time between diagnosis and evidence-based intervention for individuals with autism spectrum disorder or other developmental disabilities and, as appropriate, on how such average time varies across population subgroups;"
"Information on the effectiveness and outcomes of interventions for individuals diagnosed with autism spectrum disorder, including by severity level as practicable, and other developmental disabilities and how the age of the individual or other factors, such as demographic characteristics, may affect such effectiveness;"
"Information on the effectiveness and outcomes of innovative and newly developed intervention strategies for individuals with autism spectrum disorder or other developmental disabilities;"
"A description of the actions taken to implement and the progress made on implementation of the strategic plan developed by the Interagency Autism Coordinating Committee;" and
"Information on how States use home- and community-based services and other supports to ensure that individuals with autism spectrum disorder and other developmental disorders are living, working, and participating in their community."

This Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Autism CARES Act of 2019 (FY 2019 – FY 2023) describes autism-related activities and coordination efforts that span over 25 federal departments, agencies, divisions, and offices. The report includes updates on interagency coordination of autism efforts, and information submitted by the U.S. Departments of Health and Human Services, Defense, Education, Housing and Urban Development, Justice, Labor, Transportation, and Veterans Affairs, as well as the Environmental Protection Agency, Institute of Museum and Library Services, National Aeronautics and Space Administration, National Endowment for the Arts, National Science Foundation, Social Security Administration, U.S. Agency for International Development, and the U.S. Geological Survey. All departments, agencies, divisions, and offices contributing to this report conduct activities related to individuals on the autism spectrum and/or individuals with intellectual and developmental disabilities more broadly while including autism as a significant focus. The report covers all elements required in the Autism CARES Act of 2019 for the period of fiscal years (FYs) 2019, 2020, 2021, 2022, and 2023 (information for FY 2023 may not be complete as this report was in preparation during FY 2023).

Interagency Coordination

Interagency coordination under the Autism CARES Act of 2019 is accomplished through two major mechanisms for coordination of autism activities across the federal government: the IACC and the NAC. The IACC is charged with coordinating federal agency efforts related to autism and collecting input from the autism community to formulate advice and recommendations to the HHS Secretary that can be used to guide federal activities. The NAC is charged with "oversee[ing], in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities", facilitating coordination of federal agencies in their implementation of advice provided by the IACC, and "ensur[ing] that autism spectrum disorder activities of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative."

This section describes the roles and activities of the IACC and the NAC, as well as government-wide initiatives working to enhance diversity, equity, inclusion, and accessibility (DEIA), including for individuals with autism or other developmental disabilities, in the federal government.

Interagency Autism Coordinating Committee (IACC)

The IACC was established in its current form by Congress under the CAA and was most recently reauthorized under the Autism CARES Act of 2019 to coordinate federal autism-related efforts and provide advice to the HHS Secretary on matters pertaining to autism. The Committee uses public input it gathers to inform its activities, including the development of the IACC Strategic Plan, which serves as a guide for federal agencies in planning autism-related research, services, and support activities. In addition, the Committee monitors federal and community activities related to autism and compiles an annual IACC Summary of Advances in Autism Research to inform Congress and the public of major advances in autism research.

The Autism CARES Act of 2019 outlines the requirements for membership of the IACC, which includes representatives of federal agencies and public members representing a variety of perspectives within the autism community. Through its inclusion of both federal and public members, the IACC helps to ensure that a wide range of ideas and lived experiences are represented and discussed in a public forum.

Public membership includes autistic individuals, family members and caregivers of children and adults on the autism spectrum, autism researchers, clinicians and service providers, and leaders of national research, service, and advocacy organizations. Federal members represent the following departments and agencies that address autism research and/or services:

Department of Health and Human Services (HHS)
- Administration for Children and Families (ACF)
- Administration for Community Living (ACL)
- Agency for Healthcare Research and Quality (AHRQ)
- Centers for Disease Control and Prevention (CDC)
- Centers for Medicare & Medicaid Services (CMS)
- Food and Drug Administration (FDA)
- Health Resources and Services Administration (HRSA)
- Indian Health Service (IHS)
- National Institutes of Health (NIH)
- Substance Abuse and Mental Health Services Administration (SAMHSA)
Department of Defense (DoD)
Department of Education (ED)
Department of Housing and Urban Development (HUD)
Department of Justice (DOJ)
Department of Labor (DOL)
Department of Veterans Affairs (VA)
Environmental Protection Agency (EPA)
Social Security Administration (SSA)

IACC Fulfillment of Autism CARES Act of 2019 Mandates

The activities of the IACC described below fulfill the Committee’s congressional mandates under the Autism CARES Act of 2019.

IACC Strategic Plan

The Autism CARES Act of 2019 requires that the IACC "develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including as practicable for services and supports, for individuals with an autism spectrum disorder across the lifespan of such individuals and the families of such individuals, which shall include (A) proposed budgetary requirements; and (B) recommendations to ensure that autism spectrum disorder research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative;" and submit to Congress and the President "an annual update to the strategic plan," including "any progress made in achieving the goals outlined in such strategic plan."

The IACC’s original Strategic Plan was completed in 2009, and updates were issued for 2010, 2011, 2012, 2013, 2016-2017, and 2018-2019. These documents were submitted to Congress and the President as required. Beginning in July 2021, when the IACC was reconvened under the Autism CARES Act of 2019, the Committee began work on a new version of the Strategic Plan, resulting in significant updates to the Plan’s content and Recommendations.

Since 2009, the IACC Strategic Plan has been organized around seven community-based Questions. These Questions were updated in the 2021-2023 edition of the Strategic Plan, although they remain focused on the same topics:

How Can We Improve Identification of Autism? (Screening and Diagnosis)
What Is the Biology Underlying Autism? (Biology)
What Are the Genetic and Environmental Factors that Contribute to Autism and its Co-Occurring Conditions? (Genetic and Environmental Factors)
Which Interventions Will Improve Health and Well-Being? (Interventions)
What Services and Supports Are Needed to Maximize Health and Well-Being? (Services and Supports)
How Can We Address the Needs of People on the Autism Spectrum throughout the Lifespan? (Lifespan)
How Do We Expand and Enhance Research Infrastructure Systems to Meet the Needs of the Autism Community? (Infrastructure and Prevalence)

Each of the seven chapters reflects a Question and includes an aspirational goal, a summary of the state of the field and recent advances, remaining gaps, and existing opportunities in autism research, services, and policy. The Committee makes three Recommendations for each Question area addressing potential opportunities for advancement and research and services priorities. In addition, there are two Cross-Cutting Recommendations addressing issues related to (1) sex and gender and (2) promoting equity and reducing disparities. The 2021-2023 IACC Strategic Plan also contains a chapter describing the impact of the coronavirus disease 2019 (COVID-19) pandemic on the autism community. The IACC also expanded its list of Core Values listed in the Strategic Plan, which already included Impact, Equity and Inclusion, Excellence, Responsiveness, and Spirit of Collaboration, to incorporate Community Focus, which emphasizes "the need for inclusion of community stakeholders with lived experience and partnerships with underserved communities, to enhance research, services, and supports."

The 2021-2023 IACC Strategic Plan recommends continued research and services efforts across each of the seven Question areas and the Cross-Cutting Recommendations, while also highlighting emerging research and services needs and opportunities around topics such as intellectual and communication disabilities in autism; sensory and motor differences; older adulthood; support for individuals with high support needs; neurodiversity; community-based participatory research; and equity for underserved populations such as racial and ethnic minorities, girls/women, and LGBTQIA+ (Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, and Asexual) individuals. Overall, the Strategic Plan emphasizes the need to improve research on and services and supports for autistic individuals across the entire spectrum and across the entire lifespan. The Plan also includes a Budget Recommendation, as required by the Autism CARES Act of 2019, calling for total U.S. autism research funding to reach $685 million by 2025.

A companion easy-read version of the 2021-2023 IACC Strategic Plan was also published to make the Plan more accessible. It provides a short summary of the Strategic Plan, including the 24 IACC Recommendations.

The 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy was completed by the Committee in 2023 and is posted on the IACC website for public access. The IACC Strategic Plan is required to be submitted to Congress and the President under the Autism CARES Act of 2019, and the HHS Secretary and all federal agency representatives on the Committee are provided with the Strategic Plan for use in planning activities within their departments and agencies.

IACC Summary of Advances in Autism Research

The Autism CARES Act of 2019 also requires that the IACC "develop a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, interventions, including school and community-based interventions, and access to services and supports for individuals with autism spectrum disorder across the lifespan of such individuals" and submit to Congress and the President an annual update on the summary of advances.

The IACC has issued an annual Summary of Advances in Autism Research for each of the following years: 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2018, 2019, 2020, 2021, and 2022. The Summary of Advances provides lay-friendly summaries of the year’s top advances in autism research as identified by the Committee, covering specific areas mentioned in the Autism CARES Act of 2019 and organized in alignment with the seven Question areas of the IACC Strategic Plan. Beginning with the 2020 IACC Summary of Advances, an easy-read version has also been released that summarizes the full publication in a briefer, more accessible format.

IACC Monitoring Activities

The Autism CARES Act of 2019 requires that the IACC "monitor autism spectrum disorder research, and to the extent practicable services and support activities, across all relevant Federal departments and agencies, including coordination of Federal activities with respect to autism spectrum disorder."

The IACC monitors federal and community autism activities in several ways. At IACC meetings, the Committee regularly hears presentations from federal agencies, researchers, and community organizations that are involved in autism research and services activities, allowing the Committee to stay abreast of recent developments, emerging issues, and best practices. Additionally, the "Round Robin" session at every IACC full committee meeting allows federal and public members of the Committee to share updates on recent autism-related activities. Since 2021, information shared during the Round Robin session is also compiled as a written document and posted on the IACC website for the Committee’s and the public’s reference. The IACC also reviews the autism and broader disability research literature when preparing Strategic Plan updates and the annual Summary of Advances. Each IACC full committee meeting also includes a session for public comment so that the Committee can gather and consider input from members of the autism community.

The IACC Autism Research Portfolio Analysis Reports are prepared to assist the IACC in assessing progress toward research priorities described in the IACC Strategic Plan. The Portfolio Analysis Report analyzes information about autism-related research projects funded by federal departments/agencies and private organizations. The report describes the amount of funding and number of projects relevant to the Objectives/Recommendations set forth in the IACC Strategic Plan, providing a snapshot of the research landscape and allowing the Committee to determine which areas of its Strategic Plan are currently well-covered by ongoing research and which areas need additional efforts. This report provides valuable information about autism research funding to both federal departments/agencies and the public.

The 2008, 2009, 2010, 2011-2012, 2013, 2014-2015, 2016, and 2017-2018 Portfolio Analysis Reports are available on the IACC website. The data collected for these reports have also been made available in the IACC Autism Research Database (ARD), a publicly accessible database that contains detailed project information for all autism research projects included in the Portfolio Analysis Reports. The ARD allows for keyword searches, multi-year search, sorting, and specialized reports, enabling members of the public to quickly access data about projects that have been funded by federal departments/agencies and participating private funders.

IACC Recommendations

The Autism CARES Act of 2019 requires that the IACC "make recommendations to the Secretary regarding any appropriate changes to [Federal] activities, including with respect to the strategic plan," and "make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder, and the process by which public feedback can be better integrated into such decisions."

The main way in which the IACC makes recommendations to the HHS Secretary is through the IACC Strategic Plan. The 2021-2023 IACC Strategic Plan contains 24 Recommendations, including a research Budget Recommendation (that takes into consideration both federal and private funders), for further efforts in specific priority areas that encompass research, services and supports, and policy.

IACC Meetings

The Autism CARES Act of 2019 requires that the IACC "shall meet not fewer than 2 times each year" and that "all meetings of the Committee shall be public and shall include appropriate time periods for questions and presentations by the public."

Table 2 highlights IACC full committee, working groups, workshops, and other meetings and events (in-person, conference call, or virtual) that have taken place each year since 2019. The Committee was out of session and did not meet in 2020 while HHS completed the selection and appointment of new members under the Autism CARES Act of 2019. Committee meetings resumed in July of 2021. All meetings of the IACC, including in-person and virtual meetings, are open to the public. Recordings of past meetings; meeting materials, summaries, and transcripts; and registration information for future meetings are available on the IACC website.

Table 2: The number of IACC full committee, working group, and workshop meetings that took place from 2019-2023.

IACC Meetings: 2019-2023
Year 2019	Full Committee 3	Working Groups 1	Workshop and Other Events 2	Total 6
Year 2020	Full Committee 0	Working Groups 0	Workshop and Other Events 0	Total 0
Year 2021	Full Committee 2	Working Groups 0	Workshop and Other Events 0	Total 2
Year 2022	Full Committee 3	Working Groups 1	Workshop and Other Events 0	Total 4
Year 2023	Full Committee 3	Working Groups 0	Workshop and Other Events 0	Total 3

IACC Meetings: 2019-2023

Year

Full Committee

Working Groups

Workshop and Other Events

Total

IACC Outreach and Transparency

As a federal advisory committee, the IACC complies with the Federal Advisory Committee Act to ensure that meetings of the full committee are open to the public. IACC subcommittee and planning/working group meetings are also open to the public. Since 2020, the IACC has moved to include videoconferencing of all full committee meetings and other meetings, such as working group meetings and workshops, to increase accessibility. Prior to 2020, all IACC full committee meetings were webcast through NIH VideoCast, and working group or other smaller meetings were conducted by phone and made publicly accessible through a conference call-in number. In addition, transcripts, minutes, and/or summaries of all meetings are posted on the IACC website. To provide rapid notification of upcoming meetings and Committee news, the IACC disseminates information through an email listserv, Twitter, and a digital newsletter.

At every IACC full committee meeting, the Committee seeks input from the public through open public comment periods. In the past, public comments were delivered in person; since 2020, members of the public have been able to deliver oral public comments via videoconference. Members of the public have always had the option to submit written public comments. Members of the IACC discuss the presented comments and often develop action items based on issues discussed. In addition, the Committee periodically issues formal Requests for Information (RFI) to gather public input for strategic planning purposes. The last IACC RFI was issued in 2021, and input gathered was used in the development of the 2021-2023 IACC Strategic Plan. Written public comments, written statements of the oral public comments, and RFI responses are archived on the IACC website.

Through these various means of actively gathering public input, providing public access to meetings of the IACC, providing public access to IACC documents, and disseminating information about IACC events and products, the IACC provides numerous opportunities for public involvement and continues to enhance the transparency of the Committee's decision-making process.

The IACC website facilitates public access to information about the IACC, its activities, and its publications. The website currently hosts the agenda, minutes, meeting materials, slides, transcripts, public comments, and video recordings from the meetings of the IACC, its subcommittees, and planning/working groups, as well as reports and publications produced by the Committee. The website also contains background information about the Committee and its work and links to non-IACC documents that may be of interest to the autism community. Additionally, the website provides access to federal press releases related to autism and disabilities, including news updates from the IACC, as well as federal autism and disability reports that may be helpful to the autism community.

Each April, the National Institute of Mental Health (NIMH) sponsors special events in recognition of Autism Awareness Month to highlight the contributions of autistic individuals to society and increase awareness and outreach. These events are open to the public, and recordings are posted on the IACC website. Since 2019, these events have highlighted topics such as the needs of autistic girls and women and the contributions of autistic individuals to the visual and performing arts. These events have allowed individuals with lived experience to share their challenges and successes in various fields and social contexts, with the goal of increasing public understanding of autism and appreciation for their many contributions. For a full listing of past events, see the IACC’s Autism Awareness Month webpage. This webpage, in addition to the Autism Events webpage, also lists events hosted by other federal agencies, such as annual Autism Awareness Month events hosted by IHS and the NIH’s National Institute of Environmental Health Sciences (NIEHS), and private organizations.

In October 2021, a resources section was launched on the IACC website. This section contains resources from both government and trusted non-government sources to assist individuals on the autism spectrum and their families with finding helpful information on key topics of interest to the autism community. Topics in this section currently include About Autism; Agencies and Organizations; Transition; Employment; Housing; and Coronavirus.

National Autism Coordinator (NAC)

The Autism CARES Act of 2014 created a role for a NAC within HHS to oversee implementation of federal autism activities based on the recommendations of the IACC, as well as ensuring that federal autism efforts are not unnecessarily duplicative. The current NAC was appointed by the HHS Secretary in 2023 and oversees the Office of National Autism Coordination (ONAC) in NIMH at the NIH.

One of the main ways in which the NAC facilitates federal coordination of autism activities is through the Federal Interagency Workgroup on Autism (FIWA), which is chaired by the NAC. The NAC ensures that FIWA members are informed of IACC activities and recommendations, as well as emerging community issues, and facilitates coordination around implementation of the IACC Strategic Plan. FIWA meetings allow for the exchange of updates on interagency/interdepartmental activities and coordination of Reports to Congress and other interagency/interdepartmental reports. The following agencies and departments are currently represented on the FIWA:

Department of Health and Human Services (HHS)
- Administration for Children and Families (ACF)
- Administration for Community Living (ACL)
- Agency for Healthcare Research and Quality (AHRQ)
- Centers for Disease Control and Prevention (CDC)
- Centers for Medicare & Medicaid Services (CMS)
- Food and Drug Administration (FDA)
- Health Resources and Services Administration (HRSA)
- Indian Health Service (IHS)
- National Institutes of Health (NIH)
- Office of the Assistant Secretary for Planning and Evaluation (ASPE)
- Substance Abuse and Mental Health Services Administration (SAMHSA)
Department of Defense (DoD)
Department of Education (ED)
Department of Housing and Urban Development (HUD)
Department of Justice (DOJ)
Department of Labor (DOL)
Department of Transportation (DOT)
Department of Veterans Affairs (VA)
Environmental Protection Agency (EPA)
Social Security Administration (SSA)

Preparation of Reports to Congress on autism activities required under the Autism CARES Act of 2014 and Autism CARES Act of 2019 has been coordinated by the NAC, with input from the FIWA and the support of the NIMH Office of Autism Research Coordination (OARC) and the ONAC. These include the 2017 Report to Congress on Young Adults and Transitioning Youth with ASD; the Report to Congress on Activities Related to ASD and Other Developmental Disabilities (FY 2014 – FY 2018); the 2021 Report to Congress on the Health and Well-Being of Individuals with ASD; and this current report, the Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities (FY 2019 – FY 2023). The NAC has also led or played an important role in the development of special reports to Congress, such as the 2022 Report to Congress on Supportive Services for Individuals with Autism, requested by the House Committee on Appropriations in FY 2022 (House Report 117-96).

In 2019 and 2020, the NAC and OARC worked with the FIWA to organize a series of public webinars on topics relevant to transition age youth and young adults on the autism spectrum. The primary purpose of these webinars was to disseminate important updates on federal programs to autistic individuals, their families and caregivers, and community providers. Topics covered in the webinars include health care transition, career pathways, and transportation and mobility. The NAC also organized a webinar for federal staff in 2019 focused on measures of functioning in autistic individuals. This webinar featured four researchers performing federally funded research and allowed federal agency officials to exchange information on outcome measures currently used in research. As a result of this webinar, the NAC collaborated with staff from NIH, ACL, and DoD to write an editorial that was published in the journal Autism in Adulthood in 2020.⁶

Since 2021, the Acting NAC/NAC has enhanced information-sharing and coordination among federal agencies and has regularly shared updates with the IACC regarding federal and community activities relevant to autism. Updates provided to the FIWA and the IACC by the NAC include:

Recent significant government-wide or federal department and agency initiatives and reports relevant to autism or disabilities;
A high-level overview of the activities of other federal advisory committees that address issues related to individuals with disabilities (see Table 3); and
Recent initiatives, reports, and conferences of community organizations that may inform federal activities.

The activities of the NAC to disseminate information to federal agencies about relevant activities taking place across the federal government and community organizations promotes collaboration and contributes to the prevention of duplication of effort by ensuring federal agencies have up-to-date information regarding autism activities. Through meetings of the FIWA, the NAC fosters cross-departmental and cross-agency collaboration on activities related to autism.

Table 3: Additional federal advisory committees that conduct work on disability-related issues.

Federal Advisory Committees Related to Disability
Federal Advisory Committee Coordinating Council on Access and Mobility (CCAM)	Managing Agency DOT Federal Transit Administration (FTA)
Federal Advisory Committee Federal Communications Commission (FCC) Disability Advisory Committee (DAC)	Managing Agency FCC
Federal Advisory Committee Federal Partners in Transition (FPT)	Managing Agency DOL
Federal Advisory Committee Interagency Committee for Disability Research (ICDR)	Managing Agency HHS ACL
Federal Advisory Committee Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC)	Managing Agency HHS SAMHSA
Federal Advisory Committee National Advisory Committee on Individuals with Disabilities and Disasters (NACIDD)	Managing Agency HHS Administration for Strategic Preparedness & Response (ASPR)
Federal Advisory Committee National Council on Disability (NCD)	Managing Agency Independent federal agency
Federal Advisory Committee President’s Committee for People with Intellectual Disabilities (PCPID)	Managing Agency HHS ACL
Federal Advisory Committee RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregiving Advisory Council (FCAC)	Managing Agency HHS ACL

These Executive Orders have created new opportunities to enhance federal programming to serve the disability community, including individuals on the autism spectrum, and individuals who may have intersectional identities (e.g., individuals with a disability who are also girls/women and/or from minoritized racial, ethnic, or LGBTQIA+ communities). Many federal agencies have created initiatives that include a focus on individuals with disabilities or individuals with intersectional identities in response to these Executive Orders. Many of these programs are discussed within the narratives for individual departments and agencies within this report.

In addition, President Biden’s June 2021 Executive Order 14035 on Diversity, Equity, Inclusion, and Accessibility in the Federal Workforce launched a whole-of-government initiative to cultivate a federal workforce that draws from the full diversity of the nation and advances equitable employment opportunities, including for individuals with autism and other disabilities. The Executive Order established a DEIA Initiative, led by the Director of the Office of Personnel Management and the Deputy Director for Management of the Office of Management and Budget, that provides leadership, technical assistance, and guidance to agencies as they work to achieve the directives in the Executive Order and advance DEIA policies and practices.

The Government-Wide Strategic Plan to Advance DEIA in the Federal Workforce offers a roadmap for implementing the Executive Order and lays out key steps agencies can take to strengthen DEIA in their workforce policies, practices, and culture. In addition, the Executive Order charged all agencies with analyzing the current state of DEIA across their workforce and develop an Agency DEIA Strategic Plan to advance DEIA within their workforce and address any barriers to equal employment opportunities. Federal agencies have also developed their own DEIA activities and initiatives to fulfill these Executive Orders, including advancing DEIA for individuals with disabilities.

One multi-agency initiative developing models for bringing neurodivergent workers, including autistic individuals, into the federal government to meet staffing needs is the Neurodiverse Federal Workforce Pilot Program. This is a collaborative effort among MITRE (a federally funded research and development center established to advance national security in new ways and serve the public interest as an independent advisor), U.S. federal agencies, academia, and private industry that seeks to increase high-tech career opportunities within the federal government for individuals on the autism spectrum. The program was a grand prize winner of the Government Effectiveness Advanced Research Center Challenge, funded by the Government Services Administration and the White House Office of Management and Budget.

The program includes a modified application and interview process, professional development coaching, and co-worker autism awareness training. It offers a solution for both underemployment of autistic adults and the shortage of high-tech talent, especially in cybersecurity and data management, in U.S. federal agencies. The program consists of a paid one-week training and evaluation program and a paid six-month internship to help program participants launch a career in the federal government. The National Geospatial-Intelligence Agency hosted the first cohort of candidates on the autism spectrum in December 2020. In addition, the Neurodiverse Federal Workforce team is working on a Federal Autism@Work Playbook, which is a guidebook of best practices for employing autistic individuals in the federal government. The playbook will provide examples of successful neurodiversity programs and helpful guidance, including how to create pathways for navigating federal hiring authorities and clearance, allowing the pilot program to be replicated and expanded by other federal agencies.

In addition to the Neurodiverse Federal Workforce Pilot Program, the federal government is actively recruiting and hiring persons with disabilities, including autism and other developmental disabilities. The U.S. Office of Personnel Management hosts a page on Disability Employment with information for federal agencies to use in recruiting, hiring, and retaining individuals with disabilities and targeted disabilities, including autism. The U.S. Department of Labor (DOL) also supports a wide range of programs to promote disability employment, which are discussed later in this report.

These and other efforts across the federal government (see Appendix III), in addition to those of the IACC and the NAC, ensure that federal departments and agencies are working together to promote equity, inclusion, and accessibility across the full diversity of the U.S. population, including individuals with autism and other disabilities, in federal government employment, programs, and policies.

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