Minutes of the Interagency Autism Coordinating Committee (IACC) Full Committee Conference Call on February 28, 2012
Thomas Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Ellen Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Josephine Briggs, M.D., National Center for Complementary and Alternative Medicine (NCCAM) (representing Francis Collins, M.D., Ph.D.); Judith Cooper, Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD) (representing James Battey, M.D., Ph.D.); Lee Grossman, Advance Enterprises, LLC; Yvette Janvier, M.D., Children's Specialized Hospital ; Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Alan Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke; Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (representing Linda Birnbaum, Ph.D.); Sharon Lewis, Administration on Developmental Disabilities (ADD), Administration for Children and Families (ACF); Christine McKee, J.D.; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Denise Resnik, Southwest Autism Research & Resource Center (SARRC); Stephen Shore,* Ed.D., Autism Spectrum Consulting and Adelphi University; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Marjorie Solomon, Ph.D., M.B.A., University of California, Davis and M.I.N.D. Institute; Larry Wexler, Ed.D., U.S. Department of Education (ED) (representing Gail Houle, Ph.D.)
*Note: Attended by phone.
Introduction and Roll Call
The Interagency Autism Coordinating Committee convened on February 28, 2012 to hear updates from the members since they had last met in September and to provide information on HHS' progress forming the new committee. Congress had passed the Combating Autism Reauthorization Act in September 2011, effectively extending the existing legislation into 2014 without significant changes except to authorized dollar amounts and committee membership. As part of the process to select new public members, the committee had issued a call for nominations and received 107 responses. Dr. Thomas Insel explained that the nominees' applications had been forwarded to the Office of HHS Secretary Sebelius where applicants were being vetted before the Secretary announced final appointments. Once the appointees had been named, they would receive packets of paperwork to finalize their appointment. Dr. Insel noted that October had been a significant month for autism research with a cover story in Nature and the satellite symposium on autism held at the Society for Neuroscience conference.
National Institute of Environmental Health Sciences – Dr. Cindy Lawler reported that NIEHS had held a meeting on bioinformatics and computational approaches to advance research on environmental contributors to autism. A report from the meeting, held November 29-30 in Durham, North Carolina, is being written and a webcast of the event is available online.1 NIEHS also co-sponsored an International Neurotoxicology Conference on environmentally triggered neurodevelopmental disorders, which explored sex differences in autism and the potential role of endocrine disruptors. The meeting proceedings are published in the journal NeuroToxicology and a meeting report is forthcoming.
Centers for Medicare & Medicaid Services – Ms. Ellen Blackwell reported that in December 2011, CMS had published a preliminary bulletin providing guidance on the Essential Health Benefits package, the set of services that must be covered by certain health care plans as part of the Affordable Care Act.2 Ms. Blackwell explained that rather than establishing essential health benefits at a federal level for the state health insurance exchanges, the Secretary had decided to give states flexibility in determining the scope of their own benefits package. This benchmark approach is similar to that of Medicaid and the Children's Health Insurance Program (CHIP), she said. The bulletin identifies the ten categories that the states' essential health benefits package must include and describes HHS' process developing the guidance. Ms. Blackwell noted that benefits for autism had yet to be finalized.
NIH Office of the Director – No update was given.
National Institute on Deafness and Communication Disorders – Dr. Judith Cooper noted that NIH was preparing to review applications for the Autism Centers of Excellence (ACEs), a collection of centers and networks focused on specific research questions about autism that have been supported by NIH for the past five years.
Autism Speaks – Dr. Geri Dawson noted that Autism Speaks had sponsored a conference on the environmental epigenetics of autism on December 8, 2011 in Washington D.C. In addition, the organization recently funded an epigenetics initiative based on the CDC Study to Explore Early Development (SEED) study. Dr. Dawson reported that Autism Speaks is partnering with the Beijing Genome Institute to create the world's largest autism genome library by sequencing the 10,000 individuals participating in the Autism Speaks Autism Genetic Resource Exchange (AGRE). Other recent efforts include work with the Simons Foundation and other partners to develop gold standard outcome measures for clinical trials. Autism Speaks also held a summit on adults with autism in January, which addressed developmental trajectories in adolescents and adults, novel approaches to treatments and interventions, service use and outcomes, and factors related to optimal outcomes in adulthood.3
Dr. Dawson then spoke briefly about a collaborative project between members of the Biomarkers Consortium -- Autism Speaks, Simons Foundation, NIH, the NIH Foundation and several industry partners -- to accelerate the discovery and validation of biomarkers for ASD.4
Mr. Lee Grossman reported that he had recently been involved in the business development of a number of organizations and was currently in the process of setting up a 2-day conference in D.C. addressing autism services across the lifespan.
National Institute of Child Health and Human Development – Dr. Alan Guttmacher highlighted an NIH Common Fund funding opportunity for health care systems research (RFA RM 12-002) – the Health Care Systems Research Collaboratory. The announcement specifically cites studies of best strategies for ASD screening and early diagnosis as an example of a potential research question.5
National Institutes of Health: Dr. Insel reported that Congress had approved the FY2012 budget for NIH, appropriating $30.7 million in funds, a 1 percent increase from FY2011. The budget also included $576 million to fund the new National Center for Advancing Translational Science (NCATS), which will focus on speeding the translation of scientific discoveries into treatments. NCATS will manage the 60 clinical projects on scientific translation across the country and has a heavy focus on rare diseases associated with autism, such as fragile X and Timothy syndrome, and tuberous sclerosis. Such work may eventually benefit the autism community. Dr. Insel reported that NDAR had grown to include more than 75,000 records and had received the HHS Innovates Award. It recently federated with the Interactive Autism Network (IAN) and the Autism Genetic Resource Exchange (AGRE). A video about NDAR and the importance of data sharing is available online.6
Dr. Insel noted that NIMH has recently put out a solicitation for new studies to identify potential targets for novel interventions as part of the Fast-Fail Trials in Autism Spectrum Disorders (FAST-AS).7 He noted that NIMH had recently gave a briefing for Ohio Senator Sherrod Brown and that New Jersey Representative Chris Smith was expected to visit in the coming week.
Dr. Yvette Janvier reported that she was working on a research project to identify ASD among children in underserved communities and thus far had encountered a 3 percent prevalence rate among the approximately 900 black and Hispanic children screened. These findings will be presented at the 2012 International Meeting for Autism Research (IMFAR).
Heath Research and Services Administration – Ms. Laura Kavanaugh reported that HRSA had recently awarded funding to eight projects totaling $1.8 million through the agency's Autism Intervention Research (AIR) program. The agency is now funding 17 projects through the Maternal and Child Health Research Program, eight secondary data analysis grants, and three research networks. They are also funding 43 Leadership Education in Neurodevelopmental Disabilities (LEND) interdisciplinary training programs and 13 state demonstration grants.8 HRSA is also sponsoring two autism awareness activities in April – a webinar on autism cluster analysis and another on the impact of HRSA's autism research investments. 9, 10
National Institute of Neurological Disorders and Stroke – Dr. Walter Koroshetz reported that the NINDS budget was approximately $21.3 million for autism in FY2011. Much of the research focused on brain imaging, connectivity as it relates to language processing, and identifying biomarkers. NINDS is also funding a Norwegian cohort of mothers and children to study risk factors for autism, including predictor biomarkers in cord blood or the mother's blood. Dr. Koroshetz noted that NINDS also studied rare genetic disorders related to ASD including fragile X, Rett syndrome, and tuberous sclerosis. The agency is planning a workshop on epilepsy and autism for late May 2012.
Administration on Developmental Disabilities – Ms. Sharon Lewis talked about ADD's recent research awards including six state demonstration grants examining partnerships in employment targeting youth and young adults with ASD. ADD also funded two secondary data projects to expand the National Core Indicators to include greater quality of life measures and service coordination issues. Currently, National Core Indicators are taken in about half of all U.S. states but the goal is to expand to all 50 states in the next five years. Newly funded research projects also focus on evaluating services and supports designed for families with a member who has an intellectual or developmental disability. Ms. Lewis noted that ADD would be involved in the National Transition Conference, held annually to discuss improving the transition from school to adult life for individuals with disabilities. 11ADD also continues to be involved in post-secondary opportunities for students with disabilities such as the THINK College effort.12
Ms. Christine McKee noted a recent Connecticut investigation into the use of small, cinder-block "time-out" rooms used in elementary schools to discipline students with disruptive behavior. The suit was being brought on the basis of differential treatment because students with disabilities were overwhelmingly being subjected to the room. She was unsure if the investigation would touch on larger issues of seclusion and restraint in schools but noted that it had garnered much interest among parents. Ms. McKee noted that inability to make progress on the legislative front may be resolved through the judiciary. Ms. Singer inquired whether the Secretary had sent a response to the committee's letter on seclusion and restraint and was told that no response had been received.
Autistic Self Advocacy Network – Mr. Ari Ne'eman noted that ASAN had hosted a symposium on December 10, 2011 addressing ethical, legal, and social implications of autism research.13 The symposium followed up on themes raised at the NIH ELSI workshop in September such as safety and self-determination, service provision, appropriate intervention goals, prenatal testing, and community-based participatory action models of research.14 ASAN will work with symposium participants to develop a series of policy briefs to inform researchers, policymakers, and members of the community. Mr. Ne'eman noted that ASAN was hosting a week-long advocacy training program for self advocates and the organization had recently released a handbook with practical advice for students with ASD navigating college.
SafeMinds – Ms. Lyn Redwood reported that SafeMinds had been a Gold level sponsor of the NeuroToxicology conference mentioned earlier in the meeting and had helped plan the plenary session. She reported that SafeMinds was also currently conducting an education campaign targeted at obstetrician/gynecologists to reduce women's prenatal exposure to mercury. She mentioned that SafeMinds was following up on a recent Australian study that found that people with a family history of pink disease, resulting from exposure to teething powder containing mercury, were at greater risk for autism.15
Southwest Autism Research & Resource Center – Ms. Denise Resnik reported that SARRC recently opened the Sanders Center for Autism Studies to facilitate studies on adolescents and adults with ASD and that the organization continues to expand its pharmaceutical trials. Currently, four trials are underway. They continue to focus on adult service needs – the SARRC vocational academy is currently serving 200 adults, 85 of whom are gainfully employed. SARRC recently hosted the national council meeting for Advancing Futures for Adults with Autism (AFAA) and SARRC continues to make progress on their residential model, with plans to break ground next year. Ms. Resnik reported that in 2011 they provided services to 1,200 children, youth, and adults with ASD; 5,000 family members; and 3,700 education and medical professionals. They continue to consult with schools across the country and in Canada and will be hosting their annual community breakfast on April 19, 2012.
Centers for Disease Control & Prevention – Dr. Cathy Rice reported that the CDC would be releasing new ASD prevalence statistics in the spring and would be working with partners to provide outreach about the findings. CDC has followed up on recommendations from their February 2011 conference on evaluating changes in ASD prevalence, publishing a paper that models the impact of certain pregnancy and birth factors on ASD prevalence and partnering with Autism Speaks to implement a direct screening and assessment component at the South Carolina ADDM site. CDC is also working with partners in the Association of University Centers on Disabilities to begin collecting data on the prevalence of autism in the Minnesotan Somali community. Dr. Rice reported that the CDC had recently published a paper outlining the methods used in the Study to Explore Early Development (SEED) that Journal of Autism and Developmental Disorders.16 Researchers are in the beginning stages of data analysis and plan to explore factors related to maternal medication use, infections, lifestyle factors, and gene-environment interactions in future analyses. CDC has initiated phase 2 of the SEED project, which will focus on gene-environment interaction and double enrollment to 2,300 children. Working on increased outreach, the CDC has appointed 15 new ambassadors to the "Learn the Signs. Act Early." program, who will work as a liaison to educate parents, healthcare professionals, and early educators to the early signs of autism and other developmental disabilities. New campaign materials are available, including an interactive book called "Amazing Me – It's Busy Being Three" that educates parents about important developmental milestones. Many of the materials are also available in Spanish.
Ms. Redwood noted that the use of mercury-containing skin bleaching creams might be of interest in the Somali prevalence study.
Autism Science Foundation – Ms. Alison Singer noted that the Autism Science Foundation was currently reviewing the 86 applications submitted for pre- and postdoctoral fellowships, more than double the number from the previous year. Many of the applicants were from investigators who had never before studied autism, which supports the IACC Strategic Plan objective to recruit early career scientists to the field. Awards are expected to be announced in March and the foundation is accepting applications for IMFAR travel grants until February 29. Ms. Singer emphasized the importance of stakeholder involvement in the annual meeting.
Mr. Stephen Shore reported that since the committee had last met, he had been traveling internationally to speak and provide consulting services. He said that the community was concerned about how the changes proposed in the draft DSM-5 would impact diagnosis and service provision for people on the spectrum. Dr. Dawson said that Autism Speaks was conducting multiple studies to explore initial findings that the DSM-5 may not as sensitive in diagnosing women and "high-functioning" individuals. Two studies will apply the DSM-5 criteria to subjects in the AGRE sample and the subjects studied in the South Korean prevalence study. A prospective study will include population based screening with both versions of the DSM at an ADDM site and another will use the Autism Treatment Network (ATN) to investigate consecutive referrals, oversampling groups that may be missed using a less sensitive diagnostic tool. The two records-based studies are hoped to be completed by fall, before the new criteria go into effect in December 2012. Because some of the Autism Speaks studies will not be completed until after the DSM-5 is published, Dr. Dawson advised the committee to view the DSM as a living document that could be modified as new data emerge. Mr. Ne'eman said that ASAN shared concerns about changes to the DSM and noted the need to evaluate its impact on adult diagnosis.
Dr. Insel noted that NIMH had hosted a series of workshops to launch the Research Domain Criteria (RDoC) project, a different framework for diagnosis that classifies mental disorders using multiple dimensions: behavior, thought patterns, neurobiological measures, and genetics. A report on the classification of disorders with social deficits is forthcoming.17
U.C. Davis M.I.N.D. Institute – Dr. Marjorie Solomon reported that a new director had recently been appointed to the M.I.N.D. Institute. Dr. Leonard Abbeduto is an expert in fragile X and language and developmental delay who previously worked at the University of Wisconsin Waisman Center. Dr. Abbeduto is working to build a more efficient research administration structure at the M.I.N.D. Institute and increase clinical trial presence. Researchers recently submitted applications to the Autism Centers of Excellence (ACE) to fund collaborative projects that build on previous successes. The M.I.N.D. Institute recently received a large grant from the Institute of Education Sciences, which will allow more school-based research. Dr. Solomon also reported that the M.I.N.D. Institute was looking to potentially develop a national advisory board, as well as a friends program, to bolster national donations. She noted that they were also interested in increasing scientific partnerships with similar institutions, both domestically and internationally.
Department of Education – Dr. Larry Wexler reported that the Department of Education had been working on a restraint and seclusion resource document and that the Office on Civil Rights would soon be releasing national data on the use of restraint and seclusion.18
Dr. Susan Daniels reminded the members to send information about upcoming meetings open to the public so that they could be posted to the IACC website under non-IACC events. Progress was being made on the 2011 IACC Summary of Advances in Autism Spectrum Disorder Research and the Office of Autism Research would prepare a final document once the committee's article selections were made. She reported that data collection for the 2010 Portfolio Analysis was close to complete and collection for the 2011 analysis would begin soon. Dr. Daniels noted that a date for the committee's next meeting could not be scheduled until the new committee appointments were made. Addressing Ms. Singer's earlier question, Dr. Daniels reported that OARC had not received a response from HHS to the committee's letter on wandering but that the letter had been received. She reported that IACC would have a booth at IMFAR but that it was uncertain whether they would have the funds to sponsor committee members' travel.
The committee discussed activities for National Autism Awareness Month in April. While the committee had been expected to meet, those plans were on hold because the appointments for the new committee were not yet made. Ms. Blackwell suggested a committee activity focused on issues associated with older adults and members of the committee suggested highlighting work in this area by Dr. Joseph Piven and Dr. Hilda Geurts.19, 20 Ms. Blackwell recommended inviting Assistant Secretary on Aging, Kathy Greenlee, to speak at a future IACC meeting.
Dr. Insel closed by noting that while the committee had not convened since September, it was very helpful to hear about all the activities that individual members had continued to be involved in during the interim. The meeting was then adjourned.
These minutes of the IACC Full Committee were approved by the Committee.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D. /s/
Chair, Interagency Autism Coordinating Committee
5 Request for Applications: NIH Health Care Systems Research Collaboratory -- Practical Clinical Trials Demonstration Projects: http://grants.nih.gov/grants/guide/rfa-files/RFA-RM-12-002.html and program description: http://commonfund.nih.gov/hcscollaboratory/