Background on the IACC Strategic Plan

The Interagency Autism Coordinating Committee (IACC) is a federal advisory committee that advises the Secretary of Health and Human Services (HHS) on issues related to autism spectrum disorder (ASD). It was established by the Children's Health Act of 2000 (Public Law 106-310), reconstituted under the Combating Autism Act of 2006 (CAA; Public Law 109-416), and was most recently renewed under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Public Law 116-60). One of the statutory responsibilities of the IACC under the CAA and subsequent authorizations is the development of a strategic plan for autism, to be updated annually. The Autism CARES Act of 2019 requires that the strategic plan address the "conduct of, and support for, autism spectrum disorder research, including as practicable for services and supports."

The IACC Strategic Plan, first issued in 2009, is developed by the full IACC membership and each edition has been informed by the range of perspectives and expertise represented on the Committee and gathered through public input. The newest slate of IACC members was appointed in July 2021 under the Autism CARES Act of 2019. The current Committee is the largest and most diverse to date. Committee membership includes autistic adults; parents, siblings, and other caregivers of autistic children and adults who represent a wide range of support needs; representatives of advocacy and service organizations; researchers; clinicians; and federal officials. Several of the members have dual or multiple perspectives on the Committee, for example both as a professional in a field related to autism and as an autistic adult or family member, or as both an autistic adult and a parent of an autistic child or adult. The Committee includes members from diverse communities across the United States.

Historically, the IACC Strategic Plan has been an influential document that has provided recommendations to the HHS Secretary and federal agencies on priorities for research, services, and policy that reflect the collective input of both public and federal members of the IACC, as well as views represented in the broader autism community. The IACC Strategic Plan, along with input collected by the IACC through public comments and targeted requests for information, has played an instrumental role in highlighting the need for research and services related to adults and transition age youth, co-occurring conditions, and wandering, bringing these issues to national attention at a time when they were not well-represented in federal autism programming. The spotlight provided over the years by the IACC for these and other issues has contributed to the breadth of federal activities that exist today. This new IACC Strategic Plan similarly has the potential to foster growth and enhancement of federal activities to address the needs of the autism community.

There have been several important shifts in the autism community over the past several years. The neurodiversity movement has advocated for greater societal acceptance and inclusion of autistic people in addition to increased access and accommodation of autistic individuals' needs. Autistic adults, as well as family advocates who began their advocacy work as parents of young children and have now seen their children grow to be adults, have expanded the discussion of autism in adulthood to encompass the wide variety of service needs, including those who need intensive, lifelong supports. In recent years, autistic individuals and family caregivers have increasingly become involved in autism advocacy and collaborative partnership efforts with national and local organizations and governments to ensure that programs and policy are informed by lived experience perspectives. The number of private organizations engaged in advocacy, research, and services for autism has also grown, enabling the expansion of autism research and services efforts. Advocates have emphasized the importance of reducing stigma and increasing acceptance and inclusion of autistic people, while also ensuring that there are solutions that will help people with a wide variety of support needs. The IACC believes that it is critical to promote acceptance of autistic people while also identifying and providing appropriately tailored interventions, services, and supports across the full range of the autism spectrum. These are not mutually exclusive goals. To best meet the needs of all autistic people, it will be important to engage them, their families and caregivers, and service providers to identify the most pressing issues and develop solutions that will improve outcomes across the spectrum.

The COVID-19 pandemic has had a profound impact on the autism community. Individuals with disabilities such as autism were disproportionately affected by COVID-19 and experienced poorer outcomes and higher mortality. In addition, changes in daily living such as social distancing and stay-at-home orders disrupted routines and disconnected many autistic individuals from necessary services and supports. Educational and other supports ordinarily delivered in school settings were particularly impacted by school closures during the pandemic, resulting in setbacks for students with disabilities. Research progress was also slowed by pandemic-related closures. Meanwhile, there were also some positive changes that came about in response to the pandemic. Many healthcare and service providers were able to effectively pivot to remote service delivery. In some cases, researchers were able to design new or redesign existing protocols for remote service delivery. Workplaces that had not previously considered remote work options were suddenly forced to make these options available, resulting in some benefits for autistic people who found that working from home reduced some of the social, communication, and sensory challenges that they had experienced in traditional work settings. While the long-term impacts of the pandemic on health and well-being for individuals with autism remain to be revealed, these innovations will have impacts beyond the pandemic by helping to reduce existing disparities in access to services.

The autism community has emphasized the importance of addressing the physical and mental health conditions that often co-occur with autism, as these conditions are often the greatest source of challenges for individuals on the autism spectrum and their families. The IACC added objectives addressing co-occurring conditions to its very first Strategic Plan in 2009, and in the time since then, a substantial body of research has been conducted on these conditions and initial clinical guidelines to help address these conditions have been published. There is still much more to be done, however, to understand the mechanisms behind these conditions and develop more effective treat-ments and interventions. In particular, it is important to provide mental health supports to autistic individuals and their caregivers. Advocates have long noted the need for access to acute and long-term mental health services to provide appropriate interventions and supports for autistic individuals who also have co-occurring mental health conditions, which can have a dramatic impact on well-being. Research on autism and mental health, as well as additional resources for service provision, are needed to address challenges associated with anxiety, depression, trauma, chronic stress, and other mental health issues that are faced by many individuals on the autism spectrum.

It is also critical to make advances in understanding communication challenges and providing appropriate communication supports to autistic people who need them. Research is needed to develop new approaches and technologies to help those individuals with communication challenges develop their communication skills and access the communication modalities of their choice that are most effective for them. Opportunities to improve language and/or communication skills are essential for individuals to express their wants and needs and participate more fully in all aspects of community life.

Advocates have voiced the need for more community- based participatory research, in which autistic voices and those of family members are incorporated into every stage of the research process instead of only serving as research subjects. By receiving input based on the lived experiences of advocates during the initial experimental design and every step afterward, researchers can tailor their work to better address the needs of individuals on the autism spectrum. Community-informed research priorities have the potential to be more easily translated into effective practice.

The IACC is committed to advocating for increased inclusion of autistic individuals on multiple levels. Across the field of autism research and service provision, there are many documented disparities based on race/ethnicity, gender and gender identity, sexual orientation, geographical location, level of support needs, and more. These disparities are seen across many measures, including age of diagnosis, access to intervention services, level of unmet healthcare needs, and inclusion in research studies. The consequences of these disparities can have long-lasting impacts on the health and well-being of individuals on the autism spectrum and their family members. This edition of the IACC Strategic Plan places a greater emphasis on highlighting existing disparities and identifying potential strategies to reduce them while also promoting equity and inclusion, in line with federal diversity, equity, inclusion, and accessibility (DEIA) goals.

With each update of its Strategic Plan, the IACC re-evaluates the needs of the autism community and the best ways to achieve progress. The 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy summarizes current understanding of autism-relevant topics and addresses current gaps and opportunities in autism research, services and supports, and policy. As in previous years, the IACC Strategic Plan is organized around seven general topic areas that are represented in the Plan as community-focused Questions (e.g., Question 1, "How Can We Improve Identification of Autism?," which covers the topic of screening and diagnosis). Each question is assigned a chapter in the Strategic Plan that provides an Aspirational Goal, or long-term vision for the question; a description of the state of the field; the needs and opportunities in research, services, and policy; and three broad Objectives. In this edition of the IACC Strategic Plan, the Objectives from the 2016-2017 IACC Strategic Plan have been updated and renamed as "Recommendations." This change was made in order to clarify to the community that these Objectives serve as recommendations to the Secretary of Health and Human Services, as specified in the Autism CARES Act of 2019.

The 2021-2023 IACC Strategic Plan provides, in many cases, a substantial update to the text of the recommendations from the 2016-2017 IACC Strategic Plan. There are also two cross-cutting Recommendations, focusing on sex and gender and promoting equity and reducing disparities in autism research and services. In addition, the Plan contains a Budget Recommendation as required by the Autism CARES Act of 2019. As in previous years, the IACC recommends a substantial increase in funding, which would allow for enhanced investment in research and services activities that are critical for improving the health and well-being of autistic individuals in the near- and long-term. The IACC continues to believe that aggressive but strategic investment from the federal government, state and local governments, and private organizations will be necessary in order to better meet the needs of the autism community. The 24 total updated Recommendations in this Strategic Plan, including the new equity Recommendation and the Budget Recommendation, address critical gaps and potential opportunities for advancement that were identified by the IACC.

The IACC's goal during the development of this Plan is to present a collective voice detailing the current status and future goals of autism research, services, and policy. As the work of the IACC continues, it will be vital to learn more about the needs of individuals and their families in the context of their communities so that those needs can be properly addressed. Similarly, it is important for research findings to inform practice in clinical and community settings. In this 2021-2023 IACC Strategic Plan, the focus of the IACC's Recommendations is to encourage research and services activities that will improve health, well-being, and outcomes for autistic people in all communities, while also increasing acceptance and understanding of autism. The IACC Strategic Plan addresses the issues that cause challenges for autistic people and their families, such as intellectual disability, communication disabilities, co-occurring physical and mental health conditions, behavioral challenges, and unmet service needs. The IACC hopes that this new Strategic Plan will shine a light on some aspects of autism and community needs that have not been highlighted previously, as well re-emphasize other important topics. The Committee aims to foster more collaborative efforts between government agencies and community partners to create opportunities for autistic individuals of all ages, levels of ability, genders and gender expressions, all racial, ethnic, and cultural backgrounds, and diverse communities across the country to thrive in their home and family environments, engage in pursuits that they find meaningful, and find belonging in their communities.

Overview of Progress on Strategic Plan Recommendations

The IACC Strategic Plan provides a framework to guide the autism research efforts of federal and private funders. The Plan organizes research priorities around seven general topic areas represented as community-focused "Questions." The Questions are divided further into research Recommendations (previously called Objectives) that address key research needs, gaps, and opportunities identified by the Committee. For the current Plan, the IACC made several updates and text changes to the Recommendations to reflect the voices and current needs of the autism community. The organization of the general topic area Questions remained unchanged, which enables evaluation of research progress in these areas over the last thirteen years. An evaluation of these research areas over time (2008-2020) will be provided in the forthcoming 2019-2020 IACC Autism Research Portfolio Analysis Report.

The size of the U.S. autism research portfolio has grown significantly over the past 13 years. In 2008, the reported autism research funding for federal agencies and private organizations was $222.2 million (Figure 1). In 2020, funding for autism research among both federal and private funders totaled $418.9 million, supporting projects relevant to all seven Questions in the 2016-2017 IACC Strategic Plan for ASD Research. In addition, all of the Objectives/Recommendations of the 2016-2017 IACC Strategic Plan were supported by funded projects. This indicates that the priority areas identified by the IACC were deemed by federal and private research funders to be worthy of investment.

Figure 1. 2008-2020 autism research funding from federal (yellow) and private (blue) sources based on data collected for the IACC Portfolio Analysis Report of those years. Yellow dashed shading indicates supplementary funding provided by the American Recovery and Reinvestment Act (ARRA) in 2009 and 2010.

However, some areas received greater proportions of funding than others due to the activities of the funders included in the analysis. As in previous years, Question 2 (Biology) received the largest portion of funding (45%) in 2020. Research in this field focuses on identifying the biological differences and mechanisms in early development and throughout life that contribute to autism, as well as the characterization of the behavioral and cognitive aspects of autism. Projects ranged from basic neuroscience using cellular and animal models to human/clinical studies. Question 3 (Genetic and Environmental Factors), research aimed at identifying factors that may contribute to autism, had the second largest portion of funding (18%). Question 3 research projects addressed topics such as identifying genetic variations commonly found in individuals on the autism spectrum, developing improved approaches to studying environmental exposures and gene-environment interactions, and exploring the potential roles of the micro-biome and epigenetics in autism. Investment in research Infrastructure and Prevalence (Question 7) and Interventions (Question 4) both had a significant proportion of funding at 9%. Projects in Question 7 covered data sharing, research workforce development, epidemiological studies on autism prevalence, and communication/dissemination of research findings and evidence-based practices. Question 4 projects included research on behavioral therapies, pharmacological/medication-based approaches, and technology-based interventions, including assistive communication technologies and computer and artificial intelligence-based skill training. Research projects in Question 4 encompass the development of new interven-tions using model systems and small-scale experiments as well as full-scale clinical trials. Services and Supports (Question 5) followed with 8% of total funding. Question 5 projects addressed issues surrounding access to services; coordination of community-based supports; assessment of health and safety; and improving the efficacy, cost- effectiveness, and implementation of evidence-based practices. Research to improve Screening and Diagnosis (Question 1) of autism was 7% of funding in 2020. Question 1 projects focused on research to develop biomarkers, screening tools, and diagnostic instruments to aid in early identification. Question 6 (Lifespan) research remained the smallest area of funding (4%). Research projects within Question 6 attempted to identify and address gaps in transition to adulthood and long-term outcomes in quality of life for people on the autism spectrum, including research on post-secondary education, employment, housing, adult healthcare, and community integration.

Figure 2. Autism research funding from 2008 to 2020, broken down by Strategic Plan Question area.

Figure 2 shows the trend in funding for each of the Question areas over time. From 2008-2020, total autism research funding, increased by 89% from $222.2 million in 2008 to $418.9 million in 2020. However, not all Question areas have shown the same pattern of growth. Question 2 (Biology) is the research area that has shown the largest increases in funding, reaching $192.3 million in 2019. From 2015 to 2020, research on Genetic and Environmental Factors (Question 3) has received the second largest amount of research dollars. Question 1 (Screening and Diagnosis) and Question 5 (Services) both showed an increase in funding from 2019 to 2020, and funding for Question 7 (Infrastructure) has been relatively flat from 2016 to 2020. Question 4 (Interventions) funding has also been consistent for many years but has been on a downward trend in recent years. Research focused on Lifespan (Question 6) has historically received the lowest levels of funding but has shown growth over the last four years analyzed.

Looking over the last thirteen years of analysis, significant advances have been made in autism research in each of the Question areas prioritized by the Committee. Since the development of the last IACC Strategic Plan, autism researchers have made several important discoveries and reached many milestones. However, there are still many areas of research that would benefit from additional support. An overall increase in funding to support the entire autism portfolio will be critical to move the field forward and capitalize on scientific opportunity. This new edition of the IACC Strategic Plan builds on the priorities established in the previous editions of the Strategic Plan, identifies gaps in research, and provides Recommendations for future research and services endeavors so that we can continue to make a difference in the lives of people on the autism spectrum and their families.

Federal Coordination of Autism Activities

Autism- and disability-related programs exist at numerous federal agencies to address a wide variety of issues ranging from health, research, disability services, justice, housing, employment, transportation, military needs, communication, and other diverse issues. Given the large size and distributed nature of federal activities, the U.S. Congress and federal agencies have also put in place several structures to coordinate federal activities around disabilities and, in some cases, autism specifically. These coordination structures foster interdepartmental and interagency communication and collaboration on issues that are essential to autism and disability-related federal activities.

The IACC is a foundational part of the federal coordination structure for autism that was created under the Children's Health Act of 2000 (Public Law 106-310), reconstituted under the Combating Autism Act of 2006 (CAA; Public Law 109-416), and most recently reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Public Law 116-60). It is the only autism-specific interagency federal advisory committee in the federal government. The Autism CARES Act of 2019 outlines requirements for the membership of the IACC, which includes officials representing an array of federal departments and agencies and public members who represent a variety of perspectives within the autism community. Collectively the Committee provides advice to the HHS Secretary concerning issues related to autism and coordinates federal autism efforts.

In the Autism CARES Act of 2014, Congress added a new component to the federal coordination structure by requiring the designation of a National Autism Coordinator (NAC), "an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national ASD research, services, and support activities." The duties of the NAC include coordinating and implementing federal autism research, services, and support activities, taking into account the IACC Strategic Plan, as well as ensuring that federal autism efforts are not unnecessarily duplicative. The NAC accomplishes cross-agency and cross-departmental coordination in part through the activity of the Federal Interagency Workgroup on Autism (FIWA), an all-federal working group of representatives from multiple federal departments and agencies, most of which are also represented on the IACC. The NAC has led the development of several comprehensive reports to Congress on federal autism activities and other projects requiring cross-agency collaboration.

A third layer of interagency and intra-agency coordination is composed of a series of federal advisory committees and coordinating committees that work on specific issues related to autism and disabilities. For example, the National Institutes of Health (NIH), Autism Coordinating Committee coordinates NIH intra-agency efforts on autism research.

Other advisory committees and agencies across the federal government that contribute to federal coordination on issues of relevance to autism and disabilities are listed in Table 1.

Each of these advisory committees focuses on specific topics related to disabilities, which are informative to the efforts of the IACC to coordinate autism activities.

Federal Advisory Committees Related to Disability

Federal Advisory Committee	Managing Agency	Area of Focus
Federal Advisory Committee Advisory Committee on Accessible Air Transportation (ACCESS)	Managing Agency U.S. Department of Transportation	Area of Focus Air transportation and disabilities
Federal Advisory Committee Coordinating Council on Access and Mobility (CCAM)	Managing Agency Federal Transit Administration	Area of Focus Human services transportation for people with disabilities, older adults, and individuals of low income
Federal Advisory Committee Federal Communications Commission (FCC) Disability Advisory Committee (DAC)	Managing Agency Federal Communications Commission	Area of Focus Communication technology for people with disabilities
Federal Advisory Committee Federal Partners in Transition (FPT)	Managing Agency U.S. Department of Labor	Area of Focus Youth with disabilities
Federal Advisory Committee Interagency Committee for Disability Research (ICDR)	Managing Agency Administration for Community Living	Area of Focus Disability research
Federal Advisory Committee Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC)	Managing Agency Substance Abuse and Mental Health Services Administration	Area of Focus Mental illnesses, including those that may co-occur with autism
Federal Advisory Committee National Advisory Committee on Individuals with Disabilities and Disasters (NACIDD)	Managing Agency Administration for Strategic Preparedness and Response	Area of Focus Disaster preparedness and response and disabilities
Federal Advisory Committee National Council on Disability (NCD)	Managing Agency Independent federal agency	Area of Focus Disability policy
Federal Advisory Committee President's Committee for People with Intellectual Disabilities (PCPID)	Managing Agency Administration for Community Living	Area of Focus Intellectual disabilities
Federal Advisory Committee RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregiving Advisory Council (FCAC)	Managing Agency Administration for Community Living	Area of Focus Family caregiver issues

Table 1. Additional federal advisory committees that conduct work on disability-related issues.

2021-2023 IACC Strategic Plan Recommendations

• Support research on how early detection of autism influences outcomes.
• Reduce disparities in early detection and access to services.
• Develop and adapt screening and diagnostic tools, including tools that incorporate new technologies to increase efficiency, accuracy, and timeliness of identification.

• Foster research to better understand the processes of early development, molecular and neurodevelopmental mechanisms, brain circuitry, and cognitive development that contribute to the structural and functional basis of autism.
• Support research to understand the underlying biology of co-occurring conditions in autism and to understand the relationship of these conditions to autism.
• Support large-scale longitudinal studies to answer questions about the development and natural history of autism across the lifespan, from pregnancy through childhood, adolescence, adulthood, and older adulthood.

• Strengthen understanding of genetic factors that influence autism and its co-occurring conditions across the full diversity of individuals on the autism spectrum.
• Understand the influence of environmental factors on the onset and progression of autism and its co-occurring conditions, enabling the development of strategies to maximize positive outcomes.
• Expand knowledge about how multiple environmental and genetic factors interact through specific biological mechanisms to manifest in autism phenotypes.

• Develop and improve pharmacological and other medical interventions that will maximize positive outcomes for individuals on the autism spectrum.
• Create and improve a variety of psychosocial, developmental, occupational, and educational interventions that will maximize positive outcomes for individuals on the autism spectrum.
• Develop and improve technology-based interventions that will maximize positive outcomes for individuals on the autism spectrum.

• Develop service approaches and scale up and implement evidence-based interventions in community settings.
• Address disparities in service provision and improve access to services for all, including low-resource and underserved communities and individuals and families with high support needs.
• Improve service delivery to ensure quality and consistency of services across many domains with the goal of maximizing positive outcomes and the value that individuals get from services.

• Support development and coordination of integrated services to help people on the autism spectrum successfully transition to adulthood and progress through the lifespan with appropriate services and supports.
• Support research and develop and implement approaches to improve physical and mental health outcomes across the lifespan, with the goal of improving safety, reducing premature mortality, and enhancing health and well-being.
• Support research, services activities, and outreach efforts that facilitate and incorporate accessibility, as well as acceptance, accommodation, inclusion, independence, and integration of people on the autism spectrum.

• Promote growth, linkage, coordination, and security of biorepository and data repository infrastructure systems, equitable access to these systems, and inclusion of diverse samples.
• Expand and enhance the research workforce, with attention to diversity and inclusion, and accelerate the pipeline from research to practice.
• Strengthen statistical data gathering systems to advance understanding of the autistic population, while allowing comparisons and linkages across systems as much as possible.

• Support research to understand sex and gender differences in autism.
• Support diversity, equity, inclusion, and accessibility efforts in research, services, and policy that reduce disparities and increase equity for underrepresented, underserved, and intersectional populations within the autism community and enhance opportunities for autistic people.

Increase annual autism research funding to $685 Million by 2025.
Priority areas:

• -Lifespan issues
  -Evidence-based interventions and services
  -Research on disparities and development of culturally responsive tools and services