The Interagency Autism Coordinating Committee (IACC), a federal government advisory panel, has released its first blueprint for autism research. The IACC Strategic Plan for Autism Spectrum Disorder Research will advise federal agencies and Congress on needs and opportunities for research investigating autism, a complex developmental disorder that affects 1 in 150 children.
“This plan will help fill the gaps between what we know about autism and what we need to do to help affected families and communities,” said Thomas Insel, M.D., chair of the IACC and director of the National Institute of Mental Health, part of the National Institutes of Health. “This document marks a significant achievement in that it is the product of a truly collaborative effort involving the IACC, scientists, advocacy groups and the public.”
In establishing the IACC, the Combating Autism Act of 2006 mandated that the body develop and annually update a strategic plan for autism research. The IACC, composed of both federal and public members, developed the plan through an extensive process engaging a wide range of federal agencies and public stakeholders. The IACC convened four scientific workshops to identify research opportunities as well as expert workgroups to recommend research objectives. The committee also sought extensive public input on ASD research priorities through means such as town hall meetings and Requests for Information. The resulting plan reflects a diversity of views and the breadth of research that will be required to address the needs of people with ASD and their families.
Autism is a complex developmental disorder characterized by repetitive behavior and pervasive impairments in language and the ability to relate to others. It is often grouped with related disorders, such as Asperger’s syndrome and pervasive developmental disorder, all of which may be referred to collectively as autism spectrum disorders (ASD). The underlying causes of ASD are unclear and currently, there is no cure for the disorders. Prevalence of ASD has increased more than ten-fold over the past two decades, according to estimates from the Centers for Disease Control and Prevention (CDC) in 2007.
The IACC strategic plan is organized around six critically important questions for people with ASD and their families regarding diagnosis, the biology of autism, risk factors, treatments and interventions, services and supports and questions about issues faced by adolescents, adults and seniors with autism and their families. Each question is followed by a brief discussion of what is currently known and what more is needed through research. The plan then states an aspirational goal and describes research opportunities and objectives in each area. Each objective includes a professional judgment budget estimate, provided by programmatic and agency experts.
Recommendations in the strategic plan include objectives to: develop new diagnostic tools; complete longitudinal and comprehensive studies of the biological, clinical and developmental profiles of children; identify genetic and environmental risk factors; conduct clinical trials of interventions; and assess the efficacy and cost-effectiveness of evidence-based services for people with ASD of all ages in community settings. Over the next year, the IACC will monitor the implementation of the strategic plan and update the document for its annual release.
The Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research is available on the IACC Web site at http://iacc.hhs.gov/reports/2009/iacc-strategic-plan-for-autism-spectrum-disorder-research-jan26.shtml.
