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Preface

Autism spectrum disorder (ASD) affects an estimated 1% of children in the United States and yet many fundamental questions about the biology of ASD, potential risk factors, effective treatments and interventions, and impacts throughout life remain unanswered. Important advances have been made in understanding the complexity of ASD, but additional work is needed to fully understand how biological and external environmental factors contribute to ASD, identify the most effective interventions and services, and improve the quality of life for people with ASD and their families. The IACC Strategic Plan for ASD Research was created with the intent to accelerate and inspire research that will profoundly improve the health and well-being of every person on the autism spectrum across the lifespan.

The Plan provides a blueprint for autism research that is advisory to the Department of Health and Human Services and serves as a basis for partnerships with other agencies and private organizations involved in autism research and services. Under the Combating Autism Act of 2006 (PDF – 49 KB), it must be updated on an annual basis. To this end, the 2011 Plan has been updated by the IACC to reflect important new scientific advances in the field over the past year, emerging areas of opportunity, and areas where more research is necessary. Input from the ASD community, advocacy groups, research funding organizations, and the scientific community has continued to be a critical aspect of the updating process.

"Federal and private investment in autism research has increased markedly in the past two years," said Dr. Thomas Insel, M.D., IACC Chair and Director of the National Institute of Mental Health (NIMH). "At the same time, the IACC has heard from the community about the growing need for research and the importance of new areas for rigorous scientific study. This updated research Strategic Plan builds on recent discoveries and emerging opportunities to identify new areas where science can make a difference for individuals and families with ASD."

The 2011 Plan includes an additional 16 objectives and newly developed addendum sections for each chapter describing what has recently been learned, what gap areas have emerged, and what progress is being made in fulfilling the objectives. The Committee has identified several important new areas of focus, including the need for additional research on the use of alternative and augmentative communication (AAC) to facilitate communication for nonverbal individuals with ASD. The Committee recognized the need for more research to determine which types of AAC are most effective for particular subpopulations and how best to improve access. In addition, the 2011 Plan now calls for studies focusing on health promotion and the prevention of secondary conditions in people with ASD such as injury, obesity, and other co-occurring medical and psychiatric conditions. Also included is a new focus on understanding potential biological causes of wandering/elopement behavior, an issue that was brought to the Committee's attention through compelling public testimony at an IACC meeting in 2010. Throughout the year, the Committee heard and discussed reports of people with ASD being at increased risk for injury or premature death, and recognizing the urgent need to fully understand the reasons for this and how it can be prevented, added a new objective to the Plan exploring a range of issues related to safety and mortality for people on the spectrum.

Notably, over the past year, agencies and organizations represented on the IACC have participated in many successful collaborative efforts that were highlighted by the Committee in this year's edition of the Plan. These public-private partnerships embody the spirit of collaboration described in the Plan's mission statement and are critical to making progress toward understanding ASD and improving the lives of people on the spectrum, as well as the lives of their families.