Report to Congress
on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities
FY 2006 - FY 2009
The Combating Autism Act (CAA) outlines the membership of the IACC, which includes both representatives of Federal agencies and public members representing a variety of stakeholder groups within the autism community. Currently, IACC membership includes two people with ASD, several parents of children with ASD, members of the ASD advocacy, research, and service provider communities, and officials from the following Federal agencies and offices that address ASD research or services: Centers for Disease Control and Prevention (CDC), Centers for Medicare & Medicaid Services (CMS), Department of Education (ED), HHS Office on Disability (OD), Substance Abuse and Mental Health Services Administration (SAMHSA), Administration for Children and Families (ACF)/Administration on Developmental Disabilities (ADD), Health Resources and Services Administration (HRSA), five Institutes of the National Institutes of Health (NIH), and the NIH Director. Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The Office of Autism Research Coordination (OARC) at the National Institute of Mental Health (NIMH), an institute of NIH, was established shortly after the formation of the current IACC to provide the committee with logistical coordination and policy and communications support.
Under the CAA, the IACC is responsible for developing and annually updating a strategic plan for ASD research and for developing an annual summary of research advances in the ASD field. In fulfilling these requirements, the committee has produced three strategic plans for ASD research in 2009, 2010, and 20115 and four reports summarizing research advances there were published in 2007, 2008, 2009, and 2010.6 In order to monitor Federal ASD research, as is also required by the CAA, the Office of Autism Research Coordination, on behalf of the committee, conducted a comprehensive analysis of the ASD funding landscape in 2008, with another analysis soon to be completed for 2009 funding. These reports include detailed information about research being conducted by both Federal agencies and private funders in the U.S. and analyze the correspondence of the research projects to the topics and specific objectives laid out in the IACC Strategic Plan. These portfolio analysis documents provide a valuable tool to the committee for tracking research progress in relation to the Strategic Plan.
In addition to the full committee, the IACC has three subcommittees:
- The IACC Services Subcommittee – which addresses issues related to services and supports for people with autism and their families.
- The IACC Subcommittee for Planning the Annual Strategic Plan Updating Process – which develops processes and plans activities related to the annual strategic plan update.
- The IACC Subcommittee on Safety – which addresses issues related to individual and community safety for people with ASD.
The IACC and its subcommittees meet frequently, having convened 20 meetings in 2008, 17 meetings in 2009, and 16 meetings in 2010, including full committee meetings, subcommittee meetings, town hall gatherings, scientific workshops and planning workgroups. More information about these meetings is available on the IACC Meetings page.
Strategic Plan for ASD Research
The IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research is an important part of the IACC's mandate to advise the Secretary of HHS on gaps, opportunities, and new knowledge in the autism research field. It also serves as the basis for partnerships with other Federal agencies and private organizations involved in autism research and services. The first version of the plan7 was finalized in January 2009 and is organized around six questions that are critical for families with ASD:
- When should I be concerned?
- How can I understand what is happening?
- What caused this to happen and can it be prevented?
- Which treatments and interventions will help?
- Where can I turn for services?
- What does the future hold?
During the 2010 update to the Strategic Plan, Question 6 was amended to read "What does the future hold, particularly for adults?" In addition, a seventh question was added, titled "What other infrastructure and surveillance needs must be met?"
Each question addresses what is currently known in each area of research, what is currently needed in each area, and what research opportunities and specific objectives the committee has identified for each area. Objectives are classified as long or short-term and include a recommended budget figure. In total, the 2009 IACC Strategic Plan for ASD Research included 40 research objectives spanning a wide array of research topics, including: the development of new diagnostic tools; completing longitudinal and comprehensive studies of the biological, clinical, and developmental profiles of children; identifying genetic and environmental risk factors; conducting clinical trials of interventions; and assessing the efficacy and cost-effectiveness of evidence-based services for people with ASD of all ages in community settings. The total recommended budget for the 2009 Strategic Plan was $791,150,000 over multiple years.
The 2010 IACC Strategic Plan for ASD Research added 32 "new" objectives (including some 2009 objectives that were significantly re-worded) to address areas such as the need for additional research focus on adults with ASD, non-verbal individuals, and those with cognitive impairments.8 The 2010 Strategic Plan also includes a new seventh chapter on building research infrastructure and improving surveillance. Other new objectives cover topics such as health disparities in early diagnosis, characterization of children with reported regression, and the biology and treatment of co-occurring conditions, such as epilepsy and sleep and gastrointestinal disorders. The additional chapter on infrastructure development includes objectives aimed at enhancing the ASD research workforce, data sharing, surveillance programs, biological specimen repositories, and the communication and implementation of research findings. The 2010 Strategic Plan includes a total of 62 research objectives and calls for a total recommended budget of $1,003,155,000 over multiple years.9
The 2011 IACC Strategic Plan added another 16 objectives, including studies on the use and accessibility of Alternative and Augmentative Communication (AAC) tools for nonverbal individuals on the spectrum and studies of health promotion and the prevention of related health concerns such as obesity and mental health issues. In addition, in response to public concerns about the health and safety of children and adults with autism, the committee added new objectives related to understanding safety issues that may contribute to the increased risk of injury and premature death that has been reported in literature. The 2011 Strategic Plan includes a total of 78 research objectives and calls for a total recommended budget of $1,172,010,000 over multiple years.10, 5
The IACC Summary of Advances in ASD Research
From 2007 to 2010, the Office of Autism Research Coordination, on behalf of the IACC, has produced an annual summary of the advances in biomedical and services research identified by the committee as having made the greatest impact on the field of autism. The IACC Summary of Advances in Autism Spectrum Disorder (ASD) Research is organized by the questions of the Strategic Plan, and the number of studies selected has varied from 54 in 2007 to 20 in the 2009 document. The 2009 Summary of Advances in ASD Research includes selections related to parent training to manage behavioral issues, the association between family history of autoimmune diseases and ASD, genetic risk factors, increasing prevalence rates, racial disparities in ASD identification, and the impact of parental age on ASD risk.11 The 2010 Summary of Advances in ASD Research, released in April 2011, highlights new ways to understand ASD using induced pluripotent stem cells (iPSC) and high-tech imaging techniques, new genetic risk factors, novel ways to diagnose ASD using speech patterns, and the first intervention proven to be effective for toddlers.12, 6
The IACC ASD Research Portfolio Analysis
In 2009, the Office of Autism Research Coordination, on behalf of the IACC, conducted a comprehensive analysis of the ASD research portfolios of major Federal agencies and private organizations covering fiscal year (FY) 2008.13 The analysis was conducted to better inform the committee and interested public about the funding landscape for ASD research and how currently funded research corresponds to the priorities laid out in the 2009 IACC Strategic Plan for ASD Research. The information provided by the portfolio analysis has served as a valuable guide to both Federal agencies and private research organizations, defining the current research funding landscape and guiding future funding priorities by highlighting current gaps and opportunities in ASD research.
To complete the analysis, the IACC requested data from 19 stakeholders (11 Federal and 8 private), 13 of whom reported funding ASD research in 2008. In total, these stakeholders contributed $222,322,460 across 745 projects. The National Institutes of Health (NIH) contributed the largest amount of research funding in 2008, spending $118,076,888 on 340 projects,14 followed by the Simons Foundation with 77 projects totaling $42,985,684. Autism Speaks ranked third with $30,828,116 spent across 200 projects. The 2009 IACC ASD Research Portfolio Analysis, covering data from fiscal year 2009, is currently underway and will be released to the public in 2011. A draft is available on the IACC website.15
Public Engagement and Transparency
The IACC has made substantial efforts to engage the public in their activities and enhance overall transparency of the committee's activities. Between 2007 and 2010, the committee, in conjunction with the Office of Autism Research Coordination, has released five Requests for Information (RFI) to solicit public input on establishing and updating the Strategic Plan and identifying priorities for ASD services. During the 2010 updating process, the committee received 290 responses to the RFI (NOT-MH-09-013) from people self-identified with ASD, parents or relatives of a person with ASD, professionals involved in the diagnosis, care, and/or education of people with ASD, and researchers in ASD and other fields. These responses from the public were reviewed and taken into consideration during the process for planning the annual Strategic Plan update. The most recent RFI (NOT-MH-10-025) asked for public comment on gaps in the 2010 Strategic Plan and new knowledge that has been gained since its release. The committee received 53 responses. The public input gathered is being used to inform committee activities, including the 2011 update of the IACC Strategic Plan. Full text responses and/or summary of responses to all IACC RFIs have been made available to the public on the IACC website.
The committee has also held two town hall meetings to provide an open forum to allow members of the public to share their experiences, concerns, and perspectives with IACC members. The first was held on May 3, 2008, at the University of California, Davis, to gather input into research priorities for the treatment of ASD. Another town hall meeting on the topic of ASD services (PDF – 80 KB), was held in St. Charles, Illinois, on July 24, 2009, in collaboration with the Autism Society, a major national autism advocacy organization.
The Office of Autism Research Coordination (OARC) also maintains an extensive website for the IACC in order to facilitate public access to information about the committee, committee activities, and publications. The IACC website currently posts the agenda, minutes, and transcripts from every meeting of the IACC and its subcommittees, as well as reports and publications produced by the committee. The website has also begun to post meeting materials and meeting slides and will continue to add new categories of IACC materials for public access in the future. In addition, in 2009 the OARC began conducting live webcasts of all full committee meetings and then archiving them on the site to enhance public access and increase participation in meetings.
To provide rapid notification of upcoming meetings and committee news, the IACC disseminates information through electronic mail listservs, the microblogging site Twitter, and a recently added RSS feed of events from the IACC website. As a Federal advisory committee, the IACC complies with the Federal Advisory Committee Act (FACA) to ensure that every in-person meeting of the committee or subcommittees is open to the public, and several remote access options are available at each meeting to enable the public to listen to or watch proceedings through conference calls, webcasts or webinars. Committee and subcommittee meetings conducted by conference call only are also made accessible to the public via a call-in number.
Through these various means of actively gathering public input, providing public access to meetings and calls of the IACC, providing public access to IACC documents, and disseminating information about IACC events and products, the IACC provides numerous opportunities for public involvement and continues to enhance the transparency of committee decision-making.