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April 11, 2011 IACC Meeting Summary

April 14, 2011

The Interagency Autism Coordinating Committee (IACC) met on Monday, April 11, at the Ronald Reagan Building and International Trade Center in Washington, D.C.

The meeting opened with remarks from Michael Strautmanis, Deputy Assistant to the President and Counselor for Strategic Engagement to the Senior Advisor, Executive Office of the President, on the work of the IACC and Autism Awareness Month. Mr. Strautmanis emphasized that President Obama is committed to and understands the importance of the reauthorization of the Combating Autism Act this year. He also highlighted the Presidential Proclamation on World Autism Awareness Day and commitment to people with disabilities. He urged the IACC to push the administration for better results for autism.

Anand Parekh, M.D., Deputy Assistant Secretary for Health, Department of Health and Human Services, also spoke to the IACC about HHS's efforts on autism. This includes a recent Comparative Effectiveness Research paper on autism interventions; the Centers for Medicare and Medicaid Services (CMS) Report on State Services for Individuals with ASD; and the HHS report to Congress, which was required by the Combating Autism Act. Dr. Parekh also emphasized how the Affordable Care Act would benefit people with ASD because coverage for autism screening is included. Commenting on a recent letter sent to the IACC by Secretary Sebelius, Dr. Parekh emphasized the urgent need to address the safety issues related to wandering by persons with autism.

IACC Chair and NIMH Director Thomas Insel, M.D. reiterated the statements of the administration officials that the Combating Autism Act needs to be authorized to continue the work of the IACC. Dr. Insel opened the IACC's business by highlighting several studies of interest to the autism community, including the following: Vitamin D deficiency in pregnant women of Somali origin; the use of induced pluiripotent stem cells to study synapse function; papers published in Pediatrics that reviewed the empirical basis of early intervention and medication use for persons with autism; unmet dental needs in ASD population, particularly African-Americans; and new database tools that will facilitate the study the role of genes in early brain development.

Susan A. Daniels, Ph.D., Acting Director, Office of Autism Research and Coordination, provided the committee with an update on new IACC publications and the Combating Autism Act Report to Congress. These reports include: 1) 2011 Strategic Plan for Autism Spectrum Disorder Research; 2) 2010 Summary of Advances in Autism Spectrum Disorder Research; and 3) 2009 Portfolio Analysis: Autism Research Projects and Funding in draft form including both private and public funding sources. The latter report provides a detailed analysis of U.S. spending on autism research including spending from both private and public sources.

The IACC next heard a report from Laura Kavanagh, M.P.P., Director, Division of Research, Training and Education, Maternal and Child Health Bureau, Health Services and Resources Administration (HRSA), on HRSA's investments in autism as a result of the Combating Autism Act. The agency's three areas of focus are the Autism Intervention Physical and Behavioral Research Networks; HRSA's professional training initiatives including the Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) program; and the state implementation grants for improving state service programs. The research networks (AIR-P and AIR-B) are developing evidenced-based interventions for individuals with ASD. Dissemination of these research findings is a critical focus of this program. Ms. Kavanagh stated that HRSA expects to continue these programs as long as the Combating Autism Act is renewed.

Ellen Blackwell, M.S.W., Centers for Medicare & Medicaid Services and IACC Member, led the discussion on the State of the States for People with ASD and Report on State Services to Individuals with Autism Spectrum Disorders. The latter report chronicles the response of nine states (AZ, CA, CT, IN, ME, MO, NM, PA and WI) in providing autism services. Danna Mauch from Abt Associates, Inc. reported on key findings from the report including: states are struggling financially to address services; states have different policy and financing approaches; and there is a shortage of ASD program staff. The study also found that, of 15 interventions identified for transition-age youth, only 7% met the evidence-based standard, while 73% had little or no supporting evidence.

Jamie Kendall, Deputy Commissioner, Administration on Developmental Disabilities (ADD), Administration for Children and Families, briefed the IACC on the launch of the new AutismNow web portal. In October 2010, the Administration on Developmental Disabilities (ADD)/Administration for Children and Families (ACF) awarded The Arc of the United States $1.87 million for fiscal year 2010 to establish a National Resource and Information Center on ASD and other developmental disabilities. The Autism NOW Project is collaborating with several partners, including the Autistic Self Advocacy Network, the Autism Society, and several ADD Network entities to engage and leverage a national network of disability, aging, and family organizations. The center will provide high-quality resources and information related to community-based services that support independent living and self-determination, treatment protocols that promote community-based experiences (e.g., education, employment, recreation, transportation, early intervention, and child care) and evidence-based interventions.

The committee also learned about the launch of the new JobTIPS Website supported NIH Recovery Act funding. Dorothy Strickland, Ph.D., President of Virtual Reality Aids, Inc., do2learn, and Louise Southern, M.Ed., BCBA, Director of the JobTIPS program and oversees general web content, presented the site which aims to help transitioning youth with ASD or other disabilities develop and maintain skills needed for successful employment. JobTIPS presents text, audio, and video related to seeking and applying for jobs, managing work responsibilities, and interacting with co-workers. The site also provides detailed explanations of how to behave in specific employment situations, such as what to say and not say to a potential employer, and when and how to disclose their diagnosis. The researchers are also developing modules that will allow users to practice job skills, such as interviewing, accepting feedback from supervisors and engaging in appropriate small talk.

The Public Comments portion of the meeting included an update from Lori McIlwain, National Autism Association, on the urgent need to address the wandering incidents in the autism community. The collaborative is a community effort to address this need. The committee also heard from Montgomery County, Md. Police Officer Laurie Reyes on the department's Project Lifesaver program to address the community need to assist those with autism and Alzheimer's. Mr. Mark Blaxill, Director of SafeMinds and editor-at-large of Age of Autism, gave a statement in which he highlighted autism as the greatest childhood epidemic of our time. He urged the IACC members to lead the change against the orthodox approach to science that has failed in the response to autism. Autism self-advocate Lindsey Nebeker spoke eloquently about the need to give all autistic individuals the opportunity to live a life of dignity and choice. (Read Lindsey Nebeker's remarks here).

The IACC received an update on the trans-NIH funded Autism Centers of Excellence (ACE) from Lisa Gilotty, Ph.D., Chief of Research Program on ASD at NIMH. The six ACE centers focus on multi-disciplinary and interdependent autism research areas. The five networks are one-topic, multiple-site autism research programs. Dr. Gilotty said that a Notice of Intent to publish Requests for Applications has been posted for this program. Applications must be strongly related to gap areas identified in the 2011 Strategic Plan for Autism Spectrum Disorder Research.

Joseph Piven, M.D., Director, Neurodevelopmental Disorders Research Center, University of North Carolina at Chapel Hill, provided the committee with an overview of the Infant Brain Imaging Study (IBIS) Network. Dr. Piven emphasized the profound change that occurs in the six- to 12-month window for infants with autism and the relationships between brain size and behavior. IBIS is undertaking a longitudinal study of 500 infants who have siblings with autism who are at higher risk for developing autism, as well as 150 low risk infants. Dr. Piven and his colleagues are using state-of-the-art brain imaging methods to study early biological risk markers for autism.

Sally Rogers, Ph.D., Professor, Department of Psychiatry and Behavioral Sciences, The M.I.N.D. Institute, UC Davis Medical Center, followed with a presentation on developing effective interventions for infants and toddlers with ASD. Dr. Rogers is leading a multi-site randomized controlled trial of the Early Start Denver Model (ESDM). The program has received funding from the NIMH, NICHD, US Department of Education, and Autism Speaks. This model includes parent training for delivery of interventions at home and is curriculum- and relationship-based. The study compares the effects of the ESDM intervention with the commonly used intervention approaches available in the community in which the participants live. Previously published research on ESDM has showed significant improvements inIQ, adaptive behavior and autism diagnosis.

Cathy Rice, Ph.D., Behavioral Scientist, National Center on Birth Defects and Developmental Disabilities, CDC, reported on the CDC's recent Autism Prevalence Workshop. The meeting sought to answer three questions: What are the immediate priorities for using existing prevalence data? What are the next priorities for leveraging data systems? And what else is needed to understand ASD treatment? The CDC-funded Autism and Developmental Disabilities Monitoring (ADDM) Network is building trend data in prevalence based on parental age and age of diagnosis. One of the challenges in prevalence data is that some factors can be impossible to retroactively measure.

Rebecca B. Wolf, M.A., Public Affairs Specialist, CDC gave an update on the "Learn the Signs. Act Early." Program. The purpose of the program is to improve the early identification of autism so that parents can seek earlier access to evidenced-based interventions. CDC has been able to measure that pediatricians who are familiar with the campaign are more likely to discuss cognitive development with parents and less likely to take a “wait and see” approach. The program has been integrated into federal programs such as WIC Clinics, Head Start, and the National Just in Time-USDA Cooperative. The Act Early initiative has also included collaborative regional meetings with HRSA and AUCD to evaluate implementation strategies in states.

Autism Speaks' Chief Science Officer and IACC member Geraldine Dawson, Ph.D. reported on Autism Speaks' translational medicine workshop. The meeting was intended to promote collaboration and cross-fertilization between the academic community and industry. Participants discussed ways to facilitate research that will focus on outcome measures and provide an entry point for industry. The meeting included a cross-section of leaders from research funding agencies and the pharmaceutical industry, as well as experts in the fields of molecular biology, neuroscience, animal models, metabolism and clinical research. Topics ranged from single gene disorders to medical conditions such as GI problems, epilepsy, and mitochondrial disorder, to assays for screening medications, such as induced pluripotent stem cells.

The Committee discussed its work for 2011 during the remainder of the afternoon session. The Office of Autism Research Coordination (OARC) reported that the 2009 portfolio analysis will be released in April 2011. Additionally, OARC will be commencing the data request for the 2010 portfolio analysis. The IACC will also begin planning the update of the Strategic Plan at its next meeting.

During the Services Subcommittee report, the Committee discussed the potential for a services workshop during September. It will also consider a letter highlighting the crisis in services funding that was discussed at the last services meeting. The Services Subcommittee is to reconvene and try to reach an agreement on recommendations to the IACC for such a letter. It is also planning another town hall meeting which is likely to coincide with the Autism Society annual conference in Orlando in July.

Alison Singer, M.B.A. President, Autism Science Foundation, said the Safety Subcommittee will meet with the Department of Justice to discuss ASD-related wandering.

The IACC Services and Safety Subcommittees will convene a joint meeting on May 19.

The IACC is next scheduled to meet on Monday July 19.