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Minutes of the Interagency Autism Coordinating Committee (IACC) Meeting on May 12, 2008

The Interagency Autism Coordinating Committee (IACC) convened at 9:00 a.m. on May 12, 2008, in the Rotunda Room of the Ronald Reagan Building and International Trade Center in Washington, D.C., and adjourned at approximately 3:30 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Thomas R. Insel, M.D., Director, National Institute of Mental Health, chaired the meeting.

Committee Members Present at the Meeting: Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Ann Wagner, Ph.D., Executive Secretary, NIMH; Duane F. Alexander, M.D., National Institute of Child Health and Human Development (NICHD); Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Judith Cooper, Ph.D. (representing James F. Battey), National Institute on Deafness and other Communication Disorders; Margaret Giannini, M.D., F.A.A.P., Office on Disability, U.S. Department of Health and Human Services (DHHS); Lee Grossman, Autism Society of America; Gail R. Houle, Ph.D., U.S. Department of Education (ED); Larke N. Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Yvette M. Janvier, M.D., Children’s Specialized Hospital; Story C. Landis, Ph.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Christine M. McKee, J.D.; Patricia A. Morrissey, Ph.D., Administration for Children and Families; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Stephen M. Shore, Ed.D., Autism Spectrum Consulting; Alison Tepper Singer, M.B.A., Autism Speaks; Edwin Trevathan, M.D., M.P.H., Centers for Disease Control and Prevention (CDC); Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration (HRSA)

Call to Order and Opening Remarks

Thomas Insel thanked all in attendance for participating in the meeting of the IACC. After the members of the committee introduced themselves, they approved the written summary from the March 14, 2008 IACC meeting. Dr. Insel then asked for a report from a newly established subcommittee of the IACC focused on services and supports for autism spectrum disorders (ASD).

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Report from Services Subcommittee

Ellen Blackwell, a co-chair of the subcommittee, outlined the discussions from an April 30th conference call of the Services Subcommittee. Ms. Blackwell listed the IACC members on the subcommittee, and encouraged the federal members of the IACC to join or appoint a designee. Among the topics discussed was the need to build upon the ASD services “Roadmap” prepared by the previous IACC, in part by expanding its focus across the lifespan and by identifying attainable goals from the Roadmap. Participants of the April 30th meeting talked about projects on ASD at the Department of Defense (DoD) stemming from the National Defense Authorization Act; the possibility of issuing a request for information (RFI) on ASD-related services and supports; holding at least two town hall meetings focused on services; expanding the subcommittee to include ad hoc consultants; convening policy forums to build on the ideas in the existing Roadmap; and scheduling regular meetings of the Services Subcommittee. Lee Grossman, co-chair of the subcommittee, then described discussions he and Ms. Blackwell had at a recent meeting of the National Association of State Directors of Developmental Disabilities Services, with those who oversee many of the services programs that reach people affected by ASD.

Dr. Insel asked if the town meetings on ASD services could be integrated with town meetings on the strategic plan being developed by the IACC, and Ms. Blackwell responded that such an arrangement would be fine. Dr. Insel also asked about the National Survey of Children with Special Health Care Needs. Peter van Dyck responded that the survey is conducted every four years and encompasses about 40,000 children with special health care needs, which allows for data gathering at the state as well as national levels. The 2005-06 survey had diagnostic categories for the first time that included autism, and the resulting data are available in a public database. The 2009-10 survey is now being planned, and Dr. Insel encouraged IACC members to contact Dr. van Dyck to suggest questions to include in the survey.

Dr. Insel noted that comparisons of state efforts related to ASD could reveal useful information. Mr. Grossman and Ms. Blackwell replied that several such efforts are under way, though more needs to be done.

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Report from Town Hall Meeting

Cindy Lawler described a May 3rd town hall meeting held on behalf of the IACC in Sacramento, California. The purpose of the meeting, which was attended by approximately 125-150 people, was to gather additional public input for the development of the strategic plan. The meeting focused in particular on autism treatment research, with brief presentations from researchers, clinicians, parents, advocates, and others combined with extensive audience participation. Topics discussed at the meeting included coexisting medical conditions for people with ASD, the heterogeneity of ASD, the possible role of vaccines or toxins in the development of ASD, outcomes of treatment modalities, and the research infrastructure.

Meeting attendees identified a number of areas where research is needed, most of which overlap with research recommendations being considered by the IACC. They observed that parents need better information about treatment choices, and clinicians need to be able to tailor treatments to the characteristics of individuals with ASD. A prominent theme was the urgent need of families for services and other supports, particularly for adults with ASD. According to Dr. Lawler, many attendees at the meeting saw the provision of services and supports as a higher priority than research.

Story Landis pointed out that providing services without conducting research to demonstrate the effectiveness of those services would be difficult to justify. Dr. Lawler responded that the panelists at the meeting explicitly sought to connect calls for services to the need for research on those services. Mr. Grossman also pointed out that the accessibility of services is the key factor for many people affected by ASD. Ms. Blackwell observed that evidence about the effectiveness of services is still scant, especially for adults with ASD, and that variations in services among states and localities are also largely undocumented. Dr. Insel reiterated that a state-by-state comparison of ASD-related services would be a valuable resource.

Yvette Janvier suggested that town hall meetings be held in association with existing meetings, and Dr. Insel solicited recommendations from the group of meetings where town hall events could be held. Committee members suggested meetings held by the American Academy of Pediatrics, the Autism Research Institute, the American Neurological Association, the Child Neurology Society, and other organizations.

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Report on Strategic Planning Workgroup Meeting

Ed Trevathan summarized the proceedings of the April 21st meeting of the Strategic Planning Workgroup (SPWG). The SPWG meeting was chaired by Steve Hyman, M.D. and was held as a teleconference so that over 120 public registrants could listen to the discussion and see slides over the Internet. The main tasks for the SPWG meeting were to review 2007 research funding portfolios, prioritize the research initiatives within the six question framework, and discuss the budgetary requirements for the strategic plan.

First, the SPWG reviewed 2007 funding portfolios for autism-related research both by federal agencies (NIH, CDC and DoD) and private organizations (Autism Speaks and The Simons Foundation). The NIH investment in ASD research was $127 million in FY2007 with an additional $3.9 million spent on the National Database for Autism Research (NDAR). Each agency/organization had coded their grants by a primary research category (Biology, Treatment, Diagnosis and Risk Factors) or “Other” category (mostly training grants). Dr. Trevathan acknowledged that there were inevitable overlaps between the categories. He reported that that during the SPWG discussion of budgetary requirements, the relatively small percentage of research funding in the area of Treatment was noted.

After developing criteria for prioritization, the SPWG was asked to score the research initiatives by assigning 100 points to a select number of initiatives under each question. Afterwards, the results were tallied. Dr. Trevathan conveyed that the workgroup felt their prioritization was a “work in progress” but they decided that the task would nevertheless provide useful information for the IACC. Also, the workgroup noted that it did not intend to eliminate research initiatives through prioritization and that initiatives should be rebalanced periodically to reflect new opportunities.

During IACC discussion, Alison Singer suggested that additional analysis be done to clarify the strengths and weaknesses of the 41 initiatives and to consolidate initiatives across the six questions. Dr. Trevathan added that additional attention needs to be devoted to maintaining the infrastructure to do research and the quality of research. The initiatives also should be examined within specific funding trajectories, since all would be worthwhile given unlimited resources. Lyn Redwood suggested that the SPWG be reconvened, with additional guidance from the IACC, to consider the initiatives in greater depth.

In response to a question from Ms. Blackwell about the timetable for the strategic plan, Dr. Insel stated that a completed draft should be available by July 1. At that point, the Combating Autism Act, which calls for a five-year effort, will have been in effect for 18 months. The draft will still need further input after that point, and it will undergo annual updates, but the plan needs to make progress to influence budgetary deliberations, Dr. Insel said.

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Next Steps for Strategic Plan

Joyce Chung, M.D., NIMH Autism Coordinator, presented a set of draft vision and mission statements for the strategic plan, as well as aspirational goals for each of the six questions in the framework approved at the previous IACC meeting. In addition, Dr. Chung asked the IACC for guidance as to how much work and what kinds of tasks related to the strategic plan should be delegated to the IACC, to the Autism Team, and to the SPWG. Christine McKee pointed out that the IACC has a balanced membership and thus is well-positioned to work with the prioritization developed by the workgroup, a point later repeated by several other IACC members. Dr. Chung suggested that the initiatives could be consolidated by the workshop chairs and that the program staff involved with ASD-related research at NIH and private organizations also could be convened to do further analysis of the initiatives.

Larke Huang pointed out that the six questions, as formulated, direct attention to children with ASD and could be interpreted as underplaying the needs of adolescents and adults. Mr. Grossman pointed out that the intent of the questions is to engage everyone involved in the lives of those with ASD, including professionals and public agencies. At the same time, Dr. Janvier and Duane Alexander emphasized the importance of not losing the focus on children, since that is the age when ASD develops and is detected. The committee agreed that the NIMH Autism Team would incorporate the comments from the committee into a new version of the values, mission statement, aspirational goals and questions.

Dr. Chung called the committee’s attention to a document that could serve as a template for the discussion of ASD-related research in the strategic plan. The template would include short- and long-term objectives along with specific timelines and targets for achieving those objectives. This structure for writing the draft strategic plan was accepted by the IACC.

Dr. Chung pointed out that the Combating Autism Act calls for the strategic plan to include proposed budgetary requirements, and asked the IACC to review graphs and tables of ASD research that is currently funded by federal and by private organizations. Ms. Singer brought up a review done by Autism Speaks of the $127 million counted by the NIH as allocated for ASD-related research. According to the science team at Autism Speaks, only $80 million of that amount was in their opinion, directed toward autism research and training. Dr. Insel proposed that the reviewers at Autism Speaks collaborate with the program staff at NIH to clarify the reasons for the discrepancies in their estimates. Dr. Landis observed that research on other topics sometimes can unexpectedly turn out to have a direct connection to ASD.

Ms. Redwood said that the strategic plan should outline research needs without being inhibited by budgetary considerations. Dr. Insel proposed that the issue of budgetary requirements be linked to questions of implementation and accountability. Dr. Landis pointed out that coordinating the planning and funding for ASD-related research among federal agencies and private organizations would be a groundbreaking effort that could act as a model for other disease-oriented agencies and organizations. Dr. Insel also observed that one of the most important functions of a strategic plan can be to balance funding among research needs, including research on treatments and on the delivery of services

Dr. Insel stated that his sense of the committee’s thinking was that the plan should not be constrained by costs. Once a research agenda has been formulated, an effort should be made to attach costs to the research that is needed, with the funding distributed among multiple federal agencies and private organizations.

Finally, Dr. Chung asked the IACC for guidance on the charge to be given to the SPWG and on obtaining public input for the draft plan. Dr. Insel suggested that the SPWG be used to review and comment on a draft of the strategic plan. He thought that such a group could more easily focus on the wording of the strategic plan than can the whole IACC. Ms. Redwood asked if the IACC should establish a Subcommittee focused specifically on the strategic plan and its future updates. Dr. Landis pointed out that a standing subcommittee on the strategic plan within the IACC would need a carefully defined set of responsibilities if it is to be useful.

Dr. Insel concluded the discussion by saying that the Autism Team would begin developing draft sections of the strategic plan using the proposed template, which would then be reviewed by SPWG before the IACC’s next meeting. The workshop chairs will help to draft objectives for the plan. Budgetary requirements will be added once the plan is further developed, and further discussion is needed of implementation plans.

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Summary of Advances in ASD Research Update

Following a break for lunch, Dr. Insel noted that Joyce Chung and Steve Foote would soon be leaving the Autism Team at NIMH to return to their previous jobs, and he thanked them for their work on behalf of the IACC. Diane Buckley, of the NIMH Autism Team, then described a summary of research advances that is being prepared for the IACC to review in accordance with the Combating Autism Act. The summary was based on requests for research accomplishments that were issued to 19 federal agencies and private organizations that support ASD-related research and on a thorough search of the scientific literature. The resulting information was sorted into ten topics, each of which was summarized in about one page. The ten research advances were also organized under the six-question framework.

In response to a question about how the topics were developed, Ms. Buckley stated that they were suggested directly from the research advances that occurred in 2007. Committee members discussed how the research advances might be used in the future to inform the strategic plan. Dr. Insel also mentioned the possibility of having scientific briefings at future IACC meetings to delve more deeply into the subjects described in the summaries. Mr. Grossman also observed that a lack of research advances in a particular area could be useful input for areas that need more emphasis in the strategic plan.

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Updates of ASD Activities by Federal IACC Members

The members of the IACC from federal agencies reviewed the ASD-related activities of their agencies. Ms. Blackwell described the home- and community-based programs funded by CMS that serve people with ASD, along with several other initiatives that affect the lives of people with ASD and their families. Dr. Huang mentioned several programs at SAMSHA that impact people with ASD, including the Children’s Mental Health Initiative, which is a program to serve children with mental health needs. Margaret Giannini summarized some of the collaborative activities undertaken by the Office of Disabilities at the Department of Health and Human Services under the President’s New Freedom Initiative. Deborah Hirtz, representing Story Landis, described the strategic planning process now under way at NINDS, which includes consideration of ongoing and future ASD-related research supported by the Institute. Dr. Insel mentioned several activities under way at NIMH, including four new awards for Autism Centers of Excellence, a multi-site collaboration to look at intensive parent-implemented early interventions for children with autism, and exciting new genetic research supported by the Institute.

Dr. Lawler spoke about new collaborations being developed by NIEHS to explore how interactions between genetic factors and environmental factors may contribute to autism risk. Dr. Cooper described a joint effort between NIDCD and Autism Speaks to develop a common terminology for describing levels of language ability, which could then be used to assess interventions in children with ASD. Dr. van Dyck discussed HRSA’s plans to use money received from legislation to establish new service, training, and evaluation programs for diagnoses and treatment of children with ASD. Dr. Alexander mentioned several research and intervention programs being funded by NICHD, including the Baby Siblings Research Consortium, tissue banks focused on autism and other neurologic disorders, and the National Children’s Study that will prospectively assess environmental influences on the health and development of 100,000 children. Gail Houle summarized the services offered through the Department of Education for children with disabilities, including ASD, and their parents and teachers. Dr. Trevathan mentioned the Learn the Signs, Act Early campaign being conducted in collaboration with other governmental and private organizations and several related efforts to estimate prevalence rates and identify risk factors for ASD in the United States and other countries. And Patricia Morrissey described a program established by the Administration for Children and Families to provide services for military families, including those who have children with ASD, and to establish a national clearinghouse and technical assistance center on family support.

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Public Comment

In the final session of the meeting, Dr. Insel invited members of the public to provide input to the committee.

Vicky Debold, representing SafeMinds, offered the IACC eight recommendations. Acknowledge autism as a national emergency. Allocate sufficient resources to fund autism research. Shift the focus of research from an exclusively genetic model to one that reflects the role of environmental factors combined with genetic vulnerability. Develop a leveraged research agenda focused on prevention and treatment. Regard autism as a dynamic disease process amenable to treatment. Reclassify autism as a multi-organ disease. Establish a research agenda that is not driven by researchers. And create a formal mechanism for public-private collaboration.

Paula Durbin-Westby, representing the Autistic Self Advocacy Network, spoke about the need for research models that include autistic people at every level of the research project. In particular, community-based participatory research, as exemplified by the Academic Autistic Spectrum Partnership in Research and Education, is a promising avenue for exploration, she said.

Michael Frandsen contended that the Department of Health and Human Services, the National Institutes of Health, and the National Institute of Mental Health discriminate against people with disabilities in the hiring process. For the past five years he has unsuccessfully advocated on behalf of a qualified individual with a psychiatric disability to get a job interview at NIH through the Schedule A hiring authority. The NIH has virtually ignored this program, he said, despite NIH’s focus on issues affecting people with disabilities.

Carol Hoernlein, a former food process engineer who has investigated food additive sensitivity for the past 16 years, stated that she has been studying the similarities between MSG sensitivity and autism and has found a strong link. The association with autism of genes affecting glutamate synapse formation, the correspondence between parts of the body affected by autism and by glutamic acid sensitivity, and the use of treatments for autism that block glutamate all point to a need for genetic testing of children to identify glutamate sensitivity so that sensitive children can be provided with dietary modifications.

John Erb reported on his efforts to have monosodium glutamate removed from the food supply. He has petitioned the Food and Drug Administration to do so and has compiled further evidence of a connection between autism and MSG, including the rapid increase in autism after MSG became a major food additive in 1950.

Judith Ursetti, the mother of a son with autism, pointed out that the needs of the autism community are immense and diverse. Parents are desperate for information, especially as their children face an adulthood in which their parents may not be present. She urged the committee to work on hard on setting research priorities that will finally provide the answers so many people need.

Rachel Wrangham gave a slide presentation and said that she is 17 years old and has autism. “Having autism can be very hard and frustrating,” she said, but she talked about treatments that have made her life easier. Inositol has helped her sleep, and a vitamin and herbal supplement helped control the pain and nervousness associated with her menstrual cycle. Hyperbaric oxygen treatments have improved her reading level. She asked for research to help explain why these treatments worked for her and to find new treatments.

Theresa Wrangham, Rachel’s mother, said that the improvement in health and autistic symptoms that her daughter has experienced in the past three years while pursuing biomedical interventions has been greater than during the previous nine years of speech and social skills therapy. Ms. Wrangham said that her daughter’s autism was a result of exposure to vaccines and environmental toxins and that many other children are being affected similarly. A variety of treatments have markedly improved her health and symptoms, and much more research into biomedical interventions is needed to extend those improvements and make them available for more people. Clinicians treating recovering children, scientists focused on environmental triggers and toxicology, and family members of those afflicted should all be involved in the development of the strategic plan.

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Closing Remarks and Adjournment

Dr. Insel thanked everyone for participating in the meeting of the IACC and invited anyone who wants to provide input to the committee to submit written comments.

The meeting was adjourned at approximately 3:30 p.m. on May 12.

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Certification

I hereby certify that the foregoing minutes are accurate and complete.

Thomas Insel /s/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee

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