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Strategic Plan Cover

IACC Strategic Plan

For Autism Spectrum Disorder Research

2012 Update

Introduction

The Combating Autism Reauthorization Act (CARA) (PDF – 121 KB) was signed into law on September 30, 2011. CARA led to the establishment of a new Interagency Autism Coordinating Committee (IACC) by the Secretary of Health and Human Services, Kathleen Sebelius. At their first meeting in July 2012, the new Committee developed a plan and timeline to develop an update on the IACC Strategic Plan for ASD Research by the end of 2012. The IACC Strategic Plan, first issued in 2009, was also updated in 2010 and in early 2011.

The IACC voted to update the Strategic Plan by working with content experts for each of the chapters of the Plan to identify recent advances that have added to "What do we know?" as well as new opportunities or gaps that have emerged, which have altered "What do we need?" The Committee decided to postpone consideration of any changes in the specific objectives or other parts of the Strategic Plan until 2013. This 2012 IACC Strategic Plan Update covers advances and new opportunities in the field that have emerged between January 2011 and December 2012, recognizing that the Plan could not be updated earlier in 2012 while the IACC was being re-established.

With major findings emerging nearly every week, the speed of progress over the past two years has made composing the current update challenging. For instance, this year substantial changes, from updated prevalence numbers to new diagnostic criteria, were reported. The sheer volume of work that is now being produced in this field is overwhelming. According to the PubMed database of biomedical research literature, more than 1,000 autism papers on genetics or imaging have been published since January 2011, whereas a decade ago there were less than a third of this number of papers published. This intense activity reflects a marked increase in autism research in the scientific community, and the sense of progress was evident in almost every chapter of this update. Autism research has become one of the hottest fields in biomedical science, as demonstrated by Time magazine's recognition of early treatment of autism as one of its "Top 10 Medical Breakthroughs of 2012."

Though the 2012 IACC Strategic Plan Update will inevitably be unable to capture every important advance and new opportunity that is emerging in the field, the IACC has endeavored to capture in this document the key trends and most groundbreaking new insights from the past two years. This update should be paired with two other publications from the IACC in order to gain a more complete picture of the autism research landscape over the past two years. The IACC Autism Spectrum Disorder Research Portfolio Analysis Report describes Federal and non-Federal investments in autism research, including an accounting of how current research aligns with each of the objectives of the IACC Strategic Plan. The annual IACC Summary of Advances in ASD Research reports in detail specific scientific findings that members of the IACC identify as having significantly advanced the field. Together, with this 2012 IACC Strategic Plan Update, we hope these documents provide a useful overview of the state of autism research at the end of 2012.

Please note: The terms "person with autism," "person with ASD," "autistic person," "person affected by autism," 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.

References

Park A. Top 10 Medical Breakthroughs: Hope for Reversing Autism. Time magazine. 2012 Dec 4.


 
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