2013 IACC Strategic Plan Update Provides Accounting of ASD Research Progress Over Last 5 Years

The Interagency Autism Coordinating Committee (IACC) has released its 2013 Strategic Plan Update, which provides an overview of funding and scientific advances made in autism research since 2009, when the IACC Strategic Plan for ASD Research was first published. Approximately $1.5 billion has been dedicated to ASD research over the past 5 years through the combined efforts of U.S. government agencies and private organizations. The 2013 Strategic Plan Update describes funding trends and research advances that capture the significant progress that has been made in all seven critical research areas of the Strategic Plan over the past 5 years, providing an accounting for which funding and research goals have been achieved and identifying key areas where intensified efforts are warranted. 

IACC Chair and NIMH Director Dr. Thomas Insel said, "The state of the science has dramatically changed in the ASD field over the last 5 years. The 2013 Strategic Plan Update provides an accounting of that change, through investments and the evolution of research since the 2009 publication of the original Strategic Plan. This investment has translated to progress in all seven research areas outlined by the Plan," which include risk factors, treatments and interventions, services, lifespan issues, and surveillance and infrastructure.

Since the release of the first IACC Strategic Plan in 2009, scientific advances have been made in the understanding of the key windows of fetal and infant development, when changes in gene expression, brain architecture and behavior can be linked to the later development of autism, along with potential environmental contributors to ASD risk such as parental age, maternal health conditions and prematurity. Advances have also been made in the development of new and improved screening tools, demonstration of the efficacy of various early intervention strategies, and increased information about critical services gaps, such as transition and housing, as well as data supporting effective services strategies. Research infrastructure has also greatly expanded in the past 5 years, with shared data repositories providing an unprecedented opportunity for collaboration and large-scale data analysis.

In most research areas, including those where funding fully met recommendations, the Committee suggested that additional investment would be needed to fully achieve the aspirational goals of making appropriate diagnosis, intervention and services available to all individuals with ASD, including people of all ages, cultural groups and levels of ability.

The 2013 Update identified several overarching themes that have emerged and that the Committee felt were critical for accelerating the progress of ASD research in the next 5 years. These include:

• Scaling up screening tools, interventions, and services approaches for transition from lab to community settings.
• Promoting inclusion of research subjects from the full range of ASD disability, from all periods of the lifespan, and from underserved populations.
• Translating "practice to research," by encouraging study of current real-world practices to inform research studies.
• Characterizing the heterogeneity of ASD, including genotypes, subtypes, and co-morbid health conditions, in order to develop a personalized medicine approach.
• Leveraging existing infrastructure to increase research speed and efficiency.
• Applying strategies from other fields to ASD research.
• Standardizing the ways in which outcomes are measured in clinical trials and services research to determine the effectiveness of interventions and services.

In the 2013 Strategic Plan Update, the IACC provides the most detailed accounting to date, using both quantitative and qualitative data. This included review of detailed portfolio analysis data and the literature, as well as consultation with over 25 external experts and review of comments received from the public, to assess progress across all objectives and aspirational goals described in the Strategic Plan since its initial conception.

Overall, the Committee hopes that this latest IACC Strategic Plan Update will provide Congress, federal agencies, advocates, and people with autism and their families with helpful information about important research progress that has been made to date, as well as areas that need further attention, in order to support a robust research effort that will lead to enhanced interventions, services and opportunities for people with autism across cultures, across the full spectrum of ability, and across the lifespan.

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The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.