The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that advises the Secretary of Health and Human Services 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 in 2014 under the Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act; Public Law 113-157). One of the statutory responsibilities of the IACC under the CAA and subsequent authorizations is the development of a strategic plan for ASD, to be updated annually. The IACC Strategic Plan, first issued in 2009, was developed by the IACC – including Federal officials and public stakeholder members – and each edition has been informed by extensive input from researchers, adults on the autism spectrum, parents, advocates, and the general public. This inclusive process has ensured that the IACC Strategic Plan reflects diverse perspectives from across the autism community. The Autism CARES Act requires that the IACC include in the Strategic Plan information concerning, "as practicable…services and supports, for individuals with an autism spectrum disorder and the families of such individuals," along with information about ASD research. In this edition, which includes an entirely new set of strategic objectives, the IACC Strategic Plan for Autism Spectrum Disorder addresses this new requirement by taking a more comprehensive approach that not only addresses autism research, but also incorporates more information about gaps, opportunities, and implications related to autism services, supports, and policies.
This 2016-2017 revision of the IACC Strategic Plan is the work of the IACC membership appointed under the CARES Act. The CARES Act increased the required number of public members on the Committee, which includes at least two members on the autism spectrum, at least two parents or legal guardians of individuals with autism, and at least two advocacy, services, or research organization representatives. Several of the members have dual roles as professionals in fields related to ASD as well as having personal experience with ASD. The slate of new and returning IACC members was announced in October 2015 and embodies a wide variety of views, perspectives, and expertise.
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 I recognize the signs of ASD, and why is early detection so important?," 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, and includes: a description of the state of the field; the needs and opportunities in research, services, and policy; and three to four broad objectives for each question topic. There is also one cross-cutting objective on the topic of ASD in females.
For the 2016-2017 IACC Strategic Plan, the Committee agreed that given the recent advances in the autism field, it was an appropriate time to re-evaluate the autism landscape and formulate new objectives for each question. With access to an extensive portfolio analysis conducted by the National Institutes of Health (NIH) Office of Autism Research Coordination (OARC), as well as the annual IACC Summary of Advances documents from past years, the IACC reviewed what has been invested in ASD research in the United States since 2008. The 23 new objectives in this Plan were created by the Committee to address critical gaps and potential advances they perceived in the current research landscape. Because the objectives have been updated and broadened from the previous Strategic Plan’s 78 research objectives, the IACC expects that multiple funder portfolios will play key roles in addressing different aspects of each objective in this Plan. Furthermore, in light of the wide range of needs in autism research and services, the IACC recommends doubling the 2015 overall autism research budget level of $343 million to $685 million by the year 2020. Although this funding would not be sufficient to accomplish all of the objectives described in this Plan, it would represent an aggressive step toward progress.
In formulating this new Plan for ASD activities, the IACC has moved toward a paradigm shift in how we approach autism. A few years ago, scientists saw autism as a disorder to be detected, treated, prevented, and cured. The majority of research was directed at understanding the genetic and biological foundations of autism, and toward early detection and intervention. Today, our understanding of autism is more nuanced. We realize that there are many different "autisms" – some severe, and some comparatively mild – and that ASD affects several distinct domains of functioning differently in each individual. We have come to understand that autism is far more common than previously suspected and there are most likely many undiagnosed children, adolescents, and adults in the population, as well as under-identified and underserved individuals and groups, such as girls/women with ASD, people in poorly resourced settings, members of underserved minority communities, and individuals on the autism spectrum with language and/or intellectual disabilities. Most importantly, individuals on the autism spectrum have become leading voices in the conversation about autism, spurring acknowledgment of the unique qualities that people on the autism spectrum contribute to society and promoting self-direction, awareness, acceptance, and inclusion as important societal goals.
Research on genetic risk and the underlying basic biology of ASD remains a primary focus of the research portfolio and does play an important long-term role in the potential to develop new and broadly beneficial therapies and interventions. These advances may one day mitigate or even eliminate some of the most disabling aspects of autism, especially for those on the spectrum who are most severely impacted. However, balanced with the potential for long-term efforts to lead to significant future advances and opportunities is the importance of efforts that can have a more immediate impact. Individuals on the autism spectrum today will remain autistic for the foreseeable future; most of them have significant unmet needs. To help those people – who range in age from infants to senior citizens – we must in the short-term translate existing research to develop effective tools and strategies to maximize quality of life, and minimize disability, while also ensuring that individuals on the autism spectrum are accepted, included, and integrated in all aspects of community life.
The community has been very clear in its calls for more research into adult issues and better services and supports for the millions of Americans living with autism today. Recent studies of adult mortality have indicated that people with ASD are at higher risk of premature death than people in the general population, painting a very disturbing picture that bears investigation. In light of data and insights from the community, the IACC proposes a comprehensive research agenda that addresses the needs of autistic people across the spectrum and across the lifespan, including improvements to services, supports, and policies. The IACC also believes that, as many in the autism community have indicated, efforts to address the many co-occurring conditions that accompany autism should be made a greater priority.
Though this 2016-2017 IACC Strategic Plan for Autism Spectrum Disorder cannot possibly capture all the changes in the ASD field since 2008, the IACC has endeavored to deliver an updated picture of the evolving landscape of autism, as well as a new, broad vision of the current and future challenges and opportunities in autism research, services, and policy. To provide a more complete and detailed view of autism research progress, this update accompanies two other annual IACC publications. The IACC Autism Spectrum Disorder Research Portfolio Analysis Report describes Federal and non-Federal investments in autism research. The annual IACC Summary of Advances in ASD Research describes specific scientific findings that members of the IACC identify as having significantly advanced the field and as having the potential to impact public health and quality of life in the ASD community. Together, with this 2016-2017 IACC Strategic Plan for ASD, the Committee hopes that these documents will provide an insightful overview of the state of autism in 2017, as well as outline a strategic agenda for future progress.
The IACC Strategic Plan for ASD will accelerate and inspire research, and enhance service provision and access, that will profoundly improve the health and quality of life of every person on the autism spectrum across the lifespan. The Plan will provide a blueprint for ASD research and services efforts, engaging the participation and input of government agencies, private organizations, and the broader autism community.
The purpose of the Strategic Plan is to focus, coordinate, and accelerate innovative research and foster development of high-quality services in partnership with stakeholders to address the urgent questions and needs of people on the autism spectrum and their families.
The IACC adopted the below core values and emphasized their significance to the 2016-2017 Strategic Plan development and implementation:
Sense of Urgency: We will focus on responding rapidly and efficiently to the needs and challenges of people on the autism spectrum and their families.
Excellence: We will pursue innovative scientific research of the highest quality and development and dissemination of evidence-based services and practices to maximize the quality of life for people on the autism spectrum.
Spirit of Collaboration: We will treat others with respect, listen with open minds to the diverse views of people on the autism spectrum and their families, thoughtfully consider community input, and foster discussions where participants can comfortably offer opposing opinions.
Community Focus: We will focus on making a difference in the lives of people affected by ASD, including people with ASD, their families, medical practitioners, educators, and scientists. It is important to consider the impact of research on the quality of life, human rights, and dignity of people with ASD, from prenatal development forward.
Partnerships in Action: We will value cross-disciplinary approaches, data sharing, teamwork, and partnerships to advance ASD research and service activities.
Equity: We will prioritize improved access to detection, intervention, and other services and supports for individuals with ASD, and commit to the goal of reducing disparities across the lifespan, spectrum of ability and disability, sex and gender, racial and cultural boundaries, socioeconomic status, and geographic location to improve the health and quality of life of all individuals with ASD.
Please note: The terms "person with autism," "person with 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 Committee 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 terms "autism" and "autism spectrum disorder (ASD)" are used interchangeably throughout this document unless otherwise noted.
Overview Of Progress On Strategic Plan Objectives
The Interagency Autism Coordinating Committee (IACC) launched its first Strategic Plan for Autism Spectrum Disorder Research in 2009, providing a framework to guide the autism research efforts of Federal and private funders. The IACC Strategic Plan organizes research priorities around seven general topic areas represented as community-focused "questions." The questions are divided further into research objectives that address key research needs, gaps, and opportunities identified by the Committee. Prior to the 2016-2017 IACC Strategic Plan, the most recent update to the IACC Strategic Plan’s objectives occurred in 2011, leading to a total of 78 objectives for autism research.
The 2014-2015 IACC ASD Research Portfolio Analysis Report provides the most recent progress on the previous IACC Strategic Plan objectives. In 2015, significant progress was made toward completing the objectives in the 2011 Strategic Plan, with 97% (76 objectives) of the 78 objectives either partially or fully completed – meaning objectives had all or some of the required funded projects. Considering the period from 2008-2015, only 3% (2 objectives) of the 2011 Strategic Plan objectives were not active at any point across this eight-year window. This indicates that the vast majority of priority areas identified by the IACC were deemed by Federal and private research funders to be worthy of investment and were implemented either partially or fully. However, many areas of partial funding in autism research initiatives left significant gaps over this period.
In 2015, ASD research funding supported projects relevant to all seven questions in the IACC Strategic Plan for ASD Research. However, some questions 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 (32%) in 2015, encompassing projects supported by nine funders. Research in this field focuses on identifying the biological differences and mechanisms in early development and throughout life that contribute to ASD, as well as the characterization of the behavioral and cognitive aspects of ASD. Projects ranged from basic neuroscience using cellular and animal models to clinical studies. Question 3, research which aimed at identifying potential causes and risk factors for the disorder, had the second largest portion of funding (18%). Question 3 research projects addressed topics such as identifying genetic mutations that increase the risk of autism, developing improved approaches to studying environmental exposures and gene-environment interactions, and exploring the potential roles of the microbiome and epigenetics on etiology. Treatments and interventions (Question 4) followed closely with 17% of total funding, which included research on behavioral therapies, pharmacological treatments, and technology-based interventions. Research projects in Question 4 encompass the development of new treatments using model systems and small-scale experiments as well as full-scale clinical trials. Investment in research infrastructure and surveillance (Question 7) had a significant proportion of funding at 16%. Projects in Question 7 covered data sharing, workforce development, ASD surveillance, and communication/dissemination of research findings and evidence-based practices. Research to improve screening and diagnosis (Question 1) of ASD was 9% of funding in 2015. Question 1 objectives focused on research to develop biomarkers, screening tools, and diagnostic instruments to aid in early identification. Research focused on services (Question 5) and lifespan issues (Question 6) remained the smallest areas of funding (6% and 2%, respectively). Question 5 objectives addressed issues surrounding access to services, coordination of community-based supports, assessment of health and safety, and improving efficacy, cost-effectiveness, and dissemination of evidence-based practices. 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.
While each question’s funding amount varied throughout the eight-year span, the overall ASD funding proportions remained relatively the same from 2008-2015. The underlying biology (Question 2) of ASD, the detection of risk factors (Question 3), and the development of treatments and interventions (Question 4) consistently received the greatest investments in research. Research focused on services (Question 5) and lifespan issues (Question 6) remained relatively low in funding throughout the years. Question 2 (Biology) is the only research area that received significant increases in funding over most of the time period from 2008-2015.
Figure 1. ASD research funding from 2008-2015 by Strategic Plan question area.
In 2008, the reported autism research funding for Federal agencies and private organizations was $222.2 million and 745 projects. In 2015, funding for ASD research among both Federal and private funders totaled $342.6 million and spanned 1,410 research projects. Over the eight years, autism research showed a general upward trend in funding, increasing by 35% since 2008. Looking over the last eight years, significant advances have been made in autism research in each of the question areas prioritized by the Committee. But, there are still some areas of research that lack the support needed to foster significant progress. Since the development of the last IACC Strategic Plan, autism researchers have made several important discoveries and reached many milestones, but have also uncovered emerging areas in need of investments. While additional investment is particularly needed in these emerging areas of ASD research, an overall increase in funding to support the entire autism portfolio will be critical to move the field forward and capitalize on scientific opportunity, as is described in the IACC Strategic Plan’s budget recommendation. This new edition of the IACC Strategic Plan builds on the priorities established in the previous editions of the Strategic Plan, identifies the gaps in research, and provides recommendations for future research and services endeavors so that we continue to make a difference in the lives of people with ASD and their families.
2016-2017 Strategic Plan Objectives
- Strengthen the evidence base for the benefits of early detection of ASD.
- Reduce disparities in early detection and access to services.
- Improve/validate existing, or develop new tools, methods, and service delivery models for detecting ASD in order to facilitate timely linkage of individuals with ASD to early, targeted interventions and supports.
- Support research to understand the underlying biology of sex differences in ASD, possible factors that may be contributing to underdiagnosis, unique challenges that may be faced by girls/women on the autism spectrum, and develop strategies for meeting the needs of this population.
- Foster research to better understand the processes of early development, molecular and neurodevelopmental mechanisms, and brain circuitry that contribute to the structural and functional basis of ASD.
- Support research to understand the underlying biology of co-occurring conditions in ASD and to understand the relationship of these conditions to ASD.
- Support large-scale longitudinal studies that can answer questions about the development of ASD from pregnancy through adulthood and the natural history of ASD across the lifespan.
- Strengthen understanding of genetic risk and resilience factors for ASD across the full diversity and heterogeneity of those with ASD, enabling development of strategies for reducing disability and co-occurring conditions in ASD.
- Understand the effects on ASD risk and resilience of individual and multiple exposures in early development, enabling development of strategies for reducing disability and co-occurring conditions in ASD.
- Expand knowledge about how multiple environmental and genetic risk and resilience factors interact through specific biological mechanisms to manifest in ASD phenotypes.
- Develop and improve pharmacological and medical interventions to address both core symptoms and co-occurring conditions in ASD.
- Create and improve psychosocial, developmental, and naturalistic interventions for the core symptoms and co-occurring conditions in ASD.
- Maximize the potential for technologies and development of technology-based interventions to improve the lives of people on the autism spectrum.
- Scale up and implement evidence-based interventions in community settings.
- Reduce disparities in access and in outcomes for underserved populations.
- Improve service models to ensure consistency of care across many domains with the goal of maximizing outcomes and improving the value that individuals get from services.
- Support development and coordination of integrated services to help youth make a successful transition to adulthood and provide supports throughout the lifespan.
- Support research and implement approaches to reduce disabling co-occurring physical and mental health conditions in adults with ASD, with the goal of improving safety, reducing premature mortality, and enhancing quality of life.
- Support research, services activities, and outreach efforts that facilitate and incorporate acceptance, accommodation, inclusion, independence, and integration of people on the autism spectrum into society.
- Promote growth, integration, and coordination of biorepository infrastructure.
- Develop, enhance, and link data repositories.
- Expand and enhance the research and services workforce, and accelerate the pipeline from research to practice.
- Strengthen ASD surveillance systems to further understanding of the population of individuals with ASD, while allowing comparisons and linkages across systems as much as possible.