Autism Spectrum Disorders: An Update of Agency Initiatives and Revoluntionary New Treatment of Neurodevelopmental Diseases

The Department of Health and Human Services (HHS) is pleased to submit a statement for the record with respect to the Autism Summit Conference of November 2003 and progress made by the National Institutes of Health (NIH) and other member organizations of the Interagency Autism Coordinating Committee (IACC) since that meeting. Section 104 of the Children’s Health Act of 2000, Public Law 106-310, authorized the establishment of an interagency autism coordinating committee to coordinate research and other efforts with regard to autism within the HHS. Secretary Tommy Thompson delegated the authority to establish the IACC to the NIH in April 2001. The National Institute of Mental Health (NIMH) at the NIH was designated the lead for this activity.

HHS agencies represented include the following: the NIH Autism Coordinating Committee (ACC) members [NIMH, the National Institute of Child Health and Human Development (NICHD), the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Environmental Health Sciences (NIEHS), and the National Institute of Neurological Disorders and Stroke (NINDS)], the Health Resources and Services Administration (HRSA), the Centers for Disease Control and Prevention (CDC), the Agency for Toxic Substances and Disease Registry (ATSDR), the Substance Abuse and Mental Health Services Administration (SAMHSA), the Administration for Children and Families (ACF), the Food and Drug Administration (FDA), the Centers for Medicare and Medicaid Services (CMS), and the Agency for Healthcare Research and Quality (AHRQ), as well as the Department of Education (ED) (specifically, the Office of Special Education and Rehabilitative Services).
This statement includes information about the Autism Research Matrix, which was presented and discussed at the Autism Summit Conference. Additional information about the Autism Research Matrix can be obtained from two reports recently submitted to Congress: Congressional Appropriations Committee Report on the State of Autism Research (found at: http://www.nimh.nih.gov/autismiacc/CongApprCommRep.pdf); and the December 2003 submission of the Annual Report to Congress on Autism, required by the Children’s Health Act of 2000 (found at: http://www.nimh.nih.gov/autismiacc/autismreport2004.pdf).

IACC Autism Research Matrix
The Conference Report on the Consolidated Appropriations Bill for FY 2003, which included the appropriations for the Departments of Labor, Health and Human Services and Education and related agencies, (Conference Report No.108-10), requested that the IACC “convene a panel of outstanding scientists to assess the field of autism research, and identify roadblocks that may be hindering progress in understanding its causes and best treatment options.” The final product was to be the development of a research matrix focusing on the causes and best treatment options for autism that includes opportunities for voluntary and private funding organizations. In response to this request, the IACC convened a panel of science experts in July 2003 to document both roadblocks to understanding causes and best treatment options for autism, as well as goals and activities to overcome these roadblocks. A list of roadblocks was created, and the autism research matrix was designed to include goals and activities for the next 10 years. The goals and activities generally fall within the following categories: characterization of autism (i.e., phenotype), screening, early intervention, school and community interventions, specific treatments, neuroscience, and epidemiology. As requested by the conferees, the matrix will be a living document, subject to ongoing revision. It will be periodically revisited and revised based on achievement of some of the goals, as well as on new knowledge and insights.

Autism Summit Conference
In order to expand on the work of the IACC, HHS and ED co-sponsored the Autism Summit Conference on November 19 and 20, 2003, in Washington, DC. This national conference focused on the Federal government’s role in biomedical autism research, early screening and diagnosis, and improving access to autism services. The summit provided a public forum to disseminate, evaluate and integrate the latest practice and science-based autism information among Federal, academic, and community participants.

A major goal of the summit was to develop an information exchange among the autism community, experts in specific areas, and Federal agencies that advance autism research and services. Another goal was to foster partnerships among these groups. As part of the summit’s emphasis on increasing communication and collaboration between government and the private sector, several public/private partnerships created to enhance research in needed areas were presented. These new partnerships included initiatives for data and software sharing, public and private collaboration for an awareness campaign, and joint ventures to encourage research with populations at high-risk for autism, as well as genetic research.

The summit was segmented into three themes that represent areas most urgently needing attention. The first theme, the integration of autism services throughout the lifespan, included issues for those living with autism, such as fragmented services provided by educational and other systems. The second major theme, implementing autism screening and diagnosis, included presentations on existing screening instruments and implementation of screening practices in the community. Relevant research and current clinical practices were discussed. The third theme was biomedical research. In this component, programs were discussed that built on the work of the expert panel of scientists created by congressional request to develop the Autism Research Matrix to identify and advance high-priority research goals. Federal officials, researchers, and community members discussed such topics as genetics, epidemiology, and early intervention. In addition, the Director of NIMH presented on the overall Autism Research Matrix, to receive public input before final approval by the IACC.

Interagency Autism Coordinating Committee Meetings
At the November 21, 2003, IACC meeting, the IACC approved the current version of the Autism Research Matrix. The IACC intends to evaluate progress on a yearly basis and will begin discussion of implementation at its upcoming meeting on May 11, 2004, for which further information is found at: http://www.nimh.nih.gov/autismiacc/events.cfm. The NIH-ACC members (NIMH, NICHD, NIDCD, NIEHS, and NINDS) are assuming primary responsibility for implementation, such as documenting in-progress activities and developing initiatives, including the types of private and partnership activities referred to in the conference language requesting the matrix and discussed at the Autism Summit. Over the past few years, NIH has considerably expanded its autism research portfolio and enhanced its coordination of autism research. NIH support of autism research grew from $22 million in FY 1997 to $93 million in FY 2003, with estimated increases to $96 million in FY 2004 and $99 million in the FY 2005 President's Budget request. NIH supports autism research in the areas of genetics, neurobiology, early diagnosis, services, and treatment, while the CDC has expanded its efforts in supporting research on the epidemiology of autism.

Specifically, CDC’s autism budget has grown significantly in the past few years. During FYs 1995-1999, the annual appropriated amount for CDC autism activities was less than $1 million. In FY 2000, that figure increased to just over $1 million and for FY 2004 is estimated at about $16 million. Special studies on the causes of autism are ongoing at six sites through the five CDC-funded Centers for Autism and Developmental Disabilities Research and Epidemiology, and the sites have joined forces to design a collaborative case-control study to identify risk factors and causes of autism. CDC’s autism surveillance efforts are also proceeding, which will provide data needed to characterize autism spectrum disorders, determine rates of autism, and identify trends. In addition, CDC’s Autism Awareness Campaign has moved forward. Since November, the Campaign has received feedback reinforcing the importance of engaging physicians and other health care professionals early on. Recently, through and agreement with CDC, the American Academy of Pediatrics distributed an “Autism A.L.A.R.M.” to the Nation’s pediatricians, encouraging them to screen children early and refer those who may have autism for further evaluation or services. To further engage pediatricians and other health care professionals as critical players in an effort to help children with autism develop and reach their full potential, CDC will be disseminating additional materials to this audience in the coming days. These activities provide a framework for allowing investigators to study important questions about autism.

The state of autism research has advanced substantially in the past year with the increased infrastructure that has permitted expansion of research into the causes and best treatment options for autism. For instance, NIH has now funded a total of eight centers under the Studies to Advance Autism Research and Treatment (STAART) Centers Program http://www.nimh.nih.gov/autismiacc/staartcenters.cfm. These centers complement the 10 Collaborative Programs of Excellence in Autism (CPEA) Centers Network, and two Children’s Environmental Health Research Centers that focus on autism. These network activities are in addtion to the increased numbers of individual grants being funded to support autism research.

The NIH-ACC also is developing new initiatives and priorities intended to implement Matrix activities and achieve Matrix goals. For example, on April 2, 2004, the NIH-ACC reissued a program announcement to potential grant applicants entitled, “Research on Autism and Autism Spectrum Disorders,” which may be found at: http://grants.nih.gov/grants/guide/pa-files/PA-04-085.html. Other major initiatives that advance Matrix goals include: expansion of a repository at the NIMH Center for Genetic Studies, which establishes resources for genetic studies and enhances data sharing; two NIH sponsored workshops on confronting methodological challenges in research on interventions; and the establishment of the National Autism Brain Bank, which creates infrastructure for enhanced brain acquisition for neuropathological investigations to characterize the morphological aspects of the pathophysiology of autism.

In addition to these NIH activities, other HHS agencies such as the CDC and FDA are contributing substantially to progress on the IACC Research Matrix. For instance, the CDC is partnering with several private organizations to launch an Autism Awareness Campaign, entitled: “Learn the Signs/Act Early.” CDC efforts are also allowing for substantial progress on collecting rigorous epidemiological data, with activities such as the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) and the Autism and Developmental Disabilities Monitoring Network (ADDM Net).

As FDA stated in its December 2002 testimony before the Committee on Government Reform, the FDA’s Center for Biologics Evaluation and Research (CBER) is conducting a follow-up study of reports of autism following vaccination to the Vaccine Adverse Event Reporting System (VAERS). As part of the study, CBER is reviewing available medical records and surveying parents and others who have reported autism after vaccinations. The results of this portion of the study might be used to help improve the government’s ability to communicate the risks and benefits of vaccination to the public. Although this study will not be able to determine whether vaccination causes autism, it might result in the generation of hypotheses that could be evaluated in subsequent controlled epidemiological studies.

Implementation of the Matrix is also occurring through the IACC’s established subcommittees on autism screening and the organization of autism treatment services. Both subcommittees are now working to coordinate activities among IACC members and with the relevant stakeholders in the medical and services communities. Additional discussion regarding the implementation of the Matrix will take place at the May 11 meeting of the IACC.

Summary
In sum, the Department of Health and Human Services, through the IACC as well as public-private partnerships, is expanding its efforts as a result of the Autism Summit Conference and IACC Autism Research Matrix. These activities will continue to be monitored and evaluated on a yearly basis by the IACC, and reflected in changes made to the Matrix as progress occurs.

Last Revised: May 19, 2004

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