Minutes of the Interagency Autism Coordinating Committee (IACC) Meeting on January 19, 2010
The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a meeting on January 19, 2010, from 9:00 a.m. to 4:00 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); Della Hann, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; James Battey, M.D., Ph.D., National Institute on Deafness and Communication Disorders (NIDCD); Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Josephine Briggs, M.D., (representing Francis Collins, M.D.), National Center for Complementary and Alternative Medicine (NCCAM); Henry Claypool, Office on Disability; Lee Grossman, Autism Society; Alan Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Gail R. Houle, Ph.D., U.S. Department of Education (ED); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Cathy Rice, Ph.D., (representing Edwin Trevathan, M.D., M.P.H.), Centers for Disease Control and Prevention (CDC); Stephen M. Shore, Ed.D., Autism Spectrum Consulting (via teleconference); Alison Tepper Singer, M.B.A., Autism Science Foundation; Edwin Trevathan, M.D., M.P.H., CDC; Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration (HRSA).
Call to Order and Opening Remarks
Dr. Insel welcomed the IACC members and noted that the committee (and its subcommittees) had met frequently in 2009, holding 17 meetings during the year. Dr. Insel then announced that Dr. Josephine Briggs, Director of the National Center for Complementary and Alternative Medicine (NCCAM), had been appointed to serve as Dr. Francis Collins' representative on the IACC. The members then introduced themselves and Dr. Insel reviewed several noteworthy research findings that had been recently published.
Dr. Insel began his scientific update by discussing the results of a recent CDC surveillance study. In December 2009, the CDC reported that the prevalence of autism spectrum disorders had increased from 1 in 150 children in 2002 to 1 in 110 children in 2006, representing a 57 percent increase.1 This new prevalence statistic, reported in CDC's Morbidity and Mortality Weekly Report (MMWR), was calculated using the diagnosis rates of 8-year-olds at 11 sites across the U.S. participating in the Autism and Development Disabilities Monitoring (ADDM) network. Overall, rates ranged from about 1 in 80 to 1 in 240 children and boys were four times more likely to be affected than girls. It is unclear what amount of the total prevalence increase is due to greater awareness and improved diagnosis. The study data also reveal that while children are being diagnosed slightly earlier than in 2002, the majority of children are not being diagnosed until 41 to 60 months of age – a significant delay considering that most had parents or professionals express concerns about the child's development before 36 months of age. Dr. Insel noted that the study provided a rich data set and that Dr. Cathy Rice would speak about the MMWR report at greater length later in the meeting.
Dr. Insel then spoke about reports of geographic clusters of autism in California published in Autism Research and Health & Place.2, 3 Using data from the California Department of Developmental Services (DDS), researchers identified geographic locations with significantly higher rates of ASD. The data shows an approximately four-fold increase in ASD, although it is unclear how much of the increase is due to demographic factors and/or environmental influences. Peter Bearman, a professor of sociology at Columbia University and one of the authors of the Health & Place article, cautioned in the report that research on clusters should be used to disprove rather than confirm causality.
Dr. Insel also noted two papers that appeared in the December issue of Pediatrics,4, 5 both which addressed questions about gastrointestinal (GI) issues in people with ASD. The reports concluded that gastrointestinal distress did not appear to be a unique syndrome in ASD, but that there was a need for more research and better diagnosis. GI issues may manifest as behavior issues in people with ASD. Dr. Insel said that this need for more research should be kept in mind during the subsequent Strategic Plan update.
Dr. Insel highlighted a recent Pediatrics study lead by Dr. Geraldine Dawson that was the first to evaluate the use of an Applied Behavioral Analysis (ABA)-like therapy for toddlers with ASD in a randomized controlled trial.6 The researchers compared a group of children with ASD receiving an intervention called the Early Stage Denver Model to a control group who did not receive any early intervention. The children who received the Early Stage Denver Model intervention showed marked improvement – The 24 children in the experimental group showed 17 point increase in IQ over the two-year study and a significant improvement in adaptive behavior. Thirty percent of the children lost their autism diagnosis. In contrast, the control group showed deterioration in their behavior over the course of the study.
Questions from the Committee
Dr. Battey asked if both groups of children had received comparable amounts of time with the clinicians, because a previous study had shown this to be directly related to language improvement. Dr. Insel said that while the reasons behind the children's improvement were unknown, the study provides compelling evidence for the importance of early detection and intervention.
Dr. Insel recommended that the committee review the studies he had just overviewed, as well those that appeared in the December Pediatrics supplement devoted to services development.7
Autistic Self-Advocacy Network (ASAN)
Paula Durbin-Westby, representing the Autistic Self-Advocacy Network (ASAN), applauded the addition of quality of life considerations to the Strategic Plan, but felt that the aspirational goal in Question 1 did not adequately address the need for adult diagnosis. She asked that the sections related to communicating genetic risk be amended to "genetic and other risk" to reflect recent discoveries about the role of maternal autoantibodies. She also asked that the term "nonverbal" be clarified to indicate that some people with ASD communicate through other means. In the objective calling to investigate the use of medications to control "challenging behaviors" in people with ASD, she asked that the term be defined and warned against medicating to control harmless but socially stigmatizing behaviors. She spoke about the need to ensure that autism registries are anonymous and participation is voluntary and closed by asking the committee to include additional adults with ASD as IACC members.
Caroline Rodgers spoke about her concerns that prenatal ultrasound may contribute to autism risk. She cited that cuts to state-funded prenatal care (resulting in fewer ultrasounds) corresponded with a 67 percent decrease in ASD diagnosis for Hispanic children in Alabama. Based on her analysis, lack of prenatal care correlated with lower autism rates across the U.S. and she advised close scrutiny of prenatal ultrasound because of the rapid rise in the number of scans in the last decade. She suggested that the recent finding that more highly educated white parents are more likely to have children with ASD could be explained by their higher ultrasound rates. She then provided specific language revisions for Question 3 related to prenatal ultrasound risk.
Dr. Insel reminded the committee members that written copies of the public comment presented at the meeting were always provided in their packet of materials.
Approval of December 11, 2009 IACC Full Committee Meeting Minutes
The committee reviewed the minutes of the December 11, 2009 meeting and Ms. Redwood noted that the date of the International Meeting for Autism Research (IMFAR) should be corrected to May 20 – 22, 2010. The minutes were then approved.
Global Autism Presentation
Andy Shih, Ph.D.
Vice President of Scientific Affairs, Autism Speaks
Dr. Shih, vice president of scientific affairs at Autism Speaks, delivered a presentation on international autism efforts. He explained that studying ASD internationally allows researchers to compare prevalence and incidence rates around the world and provides the opportunity to study environmental and genetic risk factors that may be unique to certain populations. Researchers are also able to study how culture and social norms impact diagnosis and treatment.
Based on the World Health Organization's definition of disease burden, which considers factors such as prevalence, functional impairment, age of onset, and cost, autism spectrum disorders are a greater health challenge than type II diabetes, childhood leukemia, and cystic fibrosis. The cost to society of ASD in the U.S. is calculated at more than $35 billion per year.
Global challenges to addressing ASD internationally include the lack of public health statistics, a lack of public and professional awareness, lack of training and expertise, and the social stigma around the disorder. Addressing these challenges will require improving awareness, collaborative research efforts, and service provision, Dr. Shih said. Autism Speaks is working with local governments and professionals in Qatar, Mexico, Albania, Ireland, the Philippines, and Chile to meet these goals. Dr. Shih reported on Autism Speaks' efforts to conduct epidemiological studies across sites in South Korea, India, Taiwan, Ireland, and South Africa (where ASD studies were added to an ongoing NIH HIV/AIDS project). He said that studies were in development in Mexico, Albania, and the Philippines.
Dr. Shih spoke about the Autism Genome Project, which is a large collaborative study being conducted to find genes associated with the inherited risk of ASD. The project's consortium represents 19 countries and includes NIH, Autism Speaks, and Genome Canada. To improve diagnosis and treatment, studies of infant siblings are being conducted in the U.S. and the United Kingdom. An autism awareness and training initiative has been adopted across North America, and Autism Speaks has partnered with WHO to disseminate evidence-based treatment information internationally. Diagnosis training programs have been established in Qatar, Saudi Arabia, and Albania and intervention/services training has begun in Albania and Mexico. Dr. Shih concluded by reiterating the opportunities presented by international research. This work will benefit both international and domestic autism communities and the investment in awareness efforts, training, and service development will help to build relationships with partner communities and enhance the overall quality of research. He added that additional investments in international ASD research are needed from NIH and CDC to accelerate progress.
Questions from the Committee
Dr. Yvette Janvier asked how participating countries were chosen and Dr. Shih responded that most of the locations were established through existing partnerships. Dr. Battey asked whether studies of neonatal ultrasound and ASD had been conducted in Albania. Dr. Shih said that they were not currently looking at ultrasound rates in the country but that the rapidly industrialization could provide an opportunity to study such environmental factors. Committee members asked whether Autism Speaks was going to conduct research in Norway, noting that the lower level of genetic heterogeneity made it a good population in which to study environmental factors. Dr. Birnbaum discussed the ongoing mother and child study in Norway, an NIH-funded study looking at prenatal risk factors for ASD. Dr. Insel asked whether Autism Speaks could study prenatal factors (folic acid, prenatal ultrasound, etc.) because they represent an area of great public interest. Dr. Shih noted that the South African study incorporating HIV/AIDS work was investigating immune activation as a possible risk factor. Other studies will also investigate the impact of malarial infection on ASD risk.
Ms. Singer asked if Autism Speaks had reached out to Haiti and Dr. Shih replied that they had not but that their needs would be overwhelming in the aftermath of the earthquake. Dr. Ed Trevathan stated that comparative studies are not limited to developing nations – for example, pregnant women in the Netherlands do not take folic acid supplements. He said that the CDC will often address the needs of the population (for diagnosis, interventions, etc.), while simultaneously conducting their research, and asked whether Autism Speaks took a similar approach. Dr. Shih talked about the services and prevention measures being offered at several research sites. Ms. Blackwell asked whether Autism Speaks was working to address service needs for adults at the international level. Dr. Shih responded that no formal efforts were underway but that he had been profoundly affected by his interactions with families outside the U.S. trying to help their adult children. He described the palpable desperation of elderly parents in Taiwan who have no idea what will happen to their middle-age son with ASD once they are gone. Dr. Insel then asked if Autism Speaks had detected clusters of ASD; Dr. Shih said that nothing could be verified but there were anecdotal accounts of an increased prevalence in the mountains of Saudi Arabia. Ms. Lyn Redwood said that there were research opportunities present in the U.S., as well, such as studies of the Amish in which ASD is reportedly low and in Somali populations where it is reportedly high. Mr. Grossman commented that Scotland and Wales have good ASD adult services relative to the U.S. Dr. Stephen Shore stated that he had traveled extensively and had met many people who would be eager to contribute to international ASD research efforts.
Epigenetics and Autism Presentation
Andrew Feinberg, M.D., M.P.H.
Johns Hopkins University School of Medicine – Institute of Genetic Medicine
Dr. Insel introduced Dr. Andrew Feinberg, head of the Center for Epigenetics at Johns Hopkins School of Medicine. Dr. Feinberg spoke about the field of epigenetics and its applicability to neurodevelopmental disorders like autism. Epigenetic changes are the result of proteins or other factors (epigenetic "tags") binding to different places on the DNA helix. This results in changes to the gene's expression (its "silencing" or "activation") without changing the fundamental makeup of the gene (its DNA base pair sequence). The pattern of epigenetic silencing or activation of genes can differ between genders, between species or between generations, and can change during specific time windows in development or in response to environmental cues. It is thought that the addition or removal of epigenetic tags from DNA is one mechanism by which developmental experience (i.e., exposure to physical or emotional stimuli) can cause long-term biological and behavioral effects. As a result, epigenetics may provide an important tool for understanding how genes and environment act together to affect autism risk.
Dr. Feinberg illustrated epigenetics using a Gedanken experiment (or "thought experiment" in the same category as Schrödinger's Cat) involving the members of Congress. He explained that although each of the 535 members differs physically and sometimes ideologically, their DNA sequence of 3 billion base pairs is virtually identical. Epigenetic changes are one mechanism by which the same DNA sequence can result in different genetic expression. (In other words, how people with identical DNA can be so different.) He explained that epigenetic information is copied during cell division and therefore has its own life cycle. It is thought that epigenetic tags distinguish stem cells, different types of tissue, and are involved in the aging process and cancer.
Dr. Feinberg described the structure of a chromosome zooming down to the level of the double helix, where epigenetic changes result from methyl groups (CH3) attaching to the DNA. Dr. Feinberg described how methyl groups are copied during DNA replication, resulting in "epigenetic memory." He explained that epigenetic changes are most likely involved in developmental disorders, drawing on Rett syndrome as an example. Rett syndrome is caused by a variant of MeCP2 (methyl CpG binding protein 2), a gene coding for a protein that recognizes methylated DNA and silences the gene. Dr. Feinberg suggested that Rett syndrome may be a result of MeCP2 failing to recognize epigenetic changes (methylation) to genes that should be silenced in early development. As a result, the gene remains active and its abnormal expression results in Rett syndrome.
Dr. Feinberg explained the importance of studying CG (or CpG) islands, the regions of DNA with a high frequency of the cytosine-guanine sequence where methylation occurs. Dr. Feinberg was able to show that DNA methylation is very important to neural development by using a DNA microarray (or "gene chip") to compare methylation throughout the genome. DNA methylation in the CG islands occurred frequently in genes expressed in the brain when compared to genes expressed in other regions of the body. He described a new method developed in his lab for comprehensively analyzing DNA methylation across the genome, which he called CHARM (Comprehensive High‐Throughput Arrays for Relative Methylation). Using CHARM, his lab looked at the greatest areas of methylation and surprisingly found that most epigenetic changes across the genome were occurring outside the CG islands (where they had been expected to occur).
Dr. Feinberg explained that in cancer, genes that should be silenced may remain active due to lack of methylation and genes that should be active, like tumor suppressor genes, are silenced because of hypermethylation. He demonstrated this pattern using the CHARM method to examine samples of colon cancer tissue. Comparing cancer tissue to normal tissue showed increased levels of methylation in the cancer tissue occurred just outside the CG islands (in a region dubbed "the shore"). Epigenetic changes can differentiate the various types of tissue throughout the body and distinguish cancerous tissue from non-cancerous tissue.
Currently, Dr. Feinberg is tracking a group of children with autistic siblings enrolled in the Early Autism Risk Longitudinal Investigation (EARLI) study to investigate how environmental exposures lead to the epigenetic changes that may be involved in ASD. In a study of identical twins, where one child has classic autism while the other has less severe features of ASD, Dr. Feinberg found that methylation patterns across a specific gene were similar until they diverged at a specific point – around the boundary of the second exon (the coding region of the gene). He said that more twins needed to be studied to confirm that epigenetic changes to this region related to ASD. Dr. Battey noted that it was important to discover whether these changes were causal or simply biomarkers of the disorder.
Dr. Feinberg said that he believed that more common disorders resulted from both genetic and epigenetic factors. He noted that epigenetic studies were dependent upon knowledge gained from human genome analysis. It will be important to conduct genome-wide methylation scans like CHARM and to investigate how epigenetic factors change over time, he said.
Questions from the Committee and Audience
Dr. Battey clarified that Rett only occurred in girls because it was an X-linked trait. Girls are able to survive with one copy of the defective MeCP2 gene because they have another healthy X chromosome. However, the condition is fatal in boys, who only have one X chromosome. Dr. Walter Koroshetz asked how Dr. Feinberg was confident that conclusions about methylation abnormalities in the lymphocytes reflected development in the brain. Dr. Feinberg said that studies had demonstrated that differences in gene expression related to disease observed in brain tissue were also observed in lymphocytes. A member of the audience asked if a deficiency of methionine, a necessary amino acid only delivered through foods like sesame seeds, fish, and meats, could hinder the methylation process and asked whether this had been observed in children with ASD. Dr. Feinberg said that the study of epigenetics was still in its infancy and that they had only started to understand the epigenetic components of disease. Dr. Insel said that identifying biomarkers is a strong theme in the Strategic Plan and that new research showed that hypomethylation can be used as a predictive diagnostic with about 70 percent reliability. He asked about the potential of therapeutics based on epigenetic discoveries. Dr. Feinberg said that he was very hopeful that drugs could be developed to modify epigenetic components of disease. Although DNA demethylation drugs to treat cancer have not yet been effective, he said that conventional drug therapies may be successful if epigenetic targets can be identified.
Update from the Centers for Disease Control and Prevention
Cathy Rice, Ph.D.
CDC – National Center on Birth Defects and Developmental Disabilities
Dr. Rice spoke to the committee about the recent prevalence study conducted through their surveillance network that had yielded the new "1 in 110 children" statistic discussed at the outset of the meeting. Using a record-based screening method, the CDC found that between 1 in 80 and 1 in 240 children were diagnosed with ASD across the 11 national sites in the Autism and Developmental Disabilities Monitoring network. Dr. Rice explained that each child's records were reviewed by an independent clinician to confirm the diagnosis. Children in the study were 8 years old in 2006 and represented about 8 percent of children their age in the U.S. This age group was chosen because the majority of children with ASD receive their diagnosis by 8 years of age. In the future, the CDC hopes to use younger children in their studies as the age of identification improves. The sites monitored in the recent study were the same as those used in the 2002 surveillance study that showed a prevalence rate of 1 in 150 children. The most recent study found that boys were 4.5 times more likely to be affected than girls, with a 1 in 70 prevalence rate. White children were more likely to be diagnosed than their black or Hispanic peers, although Dr. Rice said that more studies need to be done to determine how much of this results from differences in ascertainment. The average age of diagnosis is 4 years 6 months; however, the majority of children had documented developmental concerns from their doctor or parent before three years of age. The study showed that 76 to 96 percent of the children with ASD were receiving public education services.
Dr. Rice said that the 57 percent prevalence rate increase from 2002 to 2006 was a consistent and concerning trend. She noted that diagnosis had increased 91 percent in Hispanic children, although this could be due to better identification in the group. The majority of people with ASD do not have a cognitive impairment and are considered to be part of a higher-functioning group (which includes Asperger's syndrome). However, the greater overall prevalence rate does not seem to be caused by an increase in the number of higher-functioning individuals; cases of "classic" autism have been steadily increasing as well. Dr. Rice finished by saying that the prevalence data reinforces the importance of the IACC's role and that infrastructure development will be necessary to increase the scope of the CDC's surveillance efforts.
Questions from the Committee
Dr. Briggs asked for hypotheses about why prevalence was significantly lower in some states and Dr. Rice said that the lack of educational data in states like Alabama and Florida may play a role, but that there is no definitive explanation. Ms. Singer asked if it would be possible to use services information to analyze subsets of ASD based on level of functioning. Dr. Rice discussed the difficulty of subtyping based solely on records and suggested that such research could be a future objective for the Strategic Plan. Ms. Redwood asked if there was a way to make access to education records mandatory and expressed her frustration that the data had been available but had only recently been released. Dr. Rice explained that education records are governed by a specific set of regulations that are not controlled by the CDC and stated that the CDC had worked diligently to have the study findings available as early as possible.
Update from the National Institute of Environmental Health Sciences
Linda Birnbaum, Ph.D.
Director, National Institute of Environmental Health Sciences
Dr. Linda Birnbaum gave a presentation on the autism research supported by the National Institute of Environmental Health Sciences (NIEHS). Understanding gene-environment interaction in ASD is a research priority at NIEHS and the Institute's autism work figures into their larger program supporting children's environmental health research. She noted that more research using cellular and rodent models was needed and spoke about the NIEHS/EPA partnership in establishing the Children's Environmental Health and Disease Prevention Centers. She highlighted the UC Davis Children's Center which focuses on the study of autism etiology. She then described the CHARGE (Childhood Autism Risks from Genetics and Environment) epidemiology study, designed to identify the causes and contributing risk/protective factors for ASD. The study is collecting extensive environmental, medical, lifestyle, sociodemographic, and phenotypic information from about 2,000 children with ASD and has resulted in numerous recent findings. One finding resulting from the CHARGE study indicates that mercury levels are no higher in children with ASD than in typically developing children after correcting for the level of fish consumption. Another study using CHARGE data found numerous immune markers present in children with ASD that are not present in their typically developing peers. In another study, regression was found to have taken place in 44 percent of children with ASD when both language and social skills were taken into account.
Dr. Birnbaum then discussed the EARLI study being conducted through the NIH Autism Centers of Excellence. The study is enrolling mothers who have had at least one child with ASD and who are planning to become pregnant again or are already in the early stages of pregnancy. Researchers will follow these mothers, who have increased risk of giving birth to another child with ASD, to study autism risk and the interplay between genetics and environment. The women and their children will be followed for ten years and researchers will collect an array of biological specimens from the entire family. The study began in 2009 and 1,200 mothers in total are expected to participate. The first results should be available in five years.
Dr. Birnbaum described the NIEHS Environmental Epigenetics Program which examines the impact of gene-environment interactions on diseases by studying the alterations in gene expression caused by environmental exposures. The Institute has also put together an Epigenetics Roadmap to guide their research efforts in the area. Dr. Birnbaum briefly reviewed NIEHS' current intramural work – scientists are studying the role of brain connectivity and synaptic development and plasticity in autism. To better understand the effects of environmental chemicals on childhood growth and development, NIEHS is conducting the Norwegian Mother and Child study, an ongoing, long-term investigation of 100,000 pregnant women and their babies. Dr. Birnbaum finished by describing the National Toxicology Program which is currently developing a protocol for studying the effects of toxin exposures on neurodevelopmental outcomes.
Discussion of Edits and New Budget Recommendations for the Strategic Plan for ASD Research
Dr. Insel asked the committee to make a final review of the Strategic Plan and noted that the budgetary requirements for the objectives had been added with input from NIMH, CDC and HRSA program staff, as requested by the committee. In addition, Ms. Redwood and Ms. Singer had reviewed the document as a whole and made minor editorial changes to unify the document. Ms. Blackwell requested that a Question 5 objective on improving dissemination, implementation, and sustainability be conducted over five years rather than three, as had been stated in the 2009 Plan. She also requested that a Question 6 research objective on medication for challenging behaviors be moved to Question 4, as a corresponding objective had been. She asked that development of the State of the States report be restored as a short-term objective in Question 7 and removed from the list of resources, explaining that the report has yet to be written. She noted that the Centers for Medicare & Medicaid Services (CMS) would hold a technical advisory panel meeting in the near future to guide the development of the State of the States report and estimated that the finished report would be available in 1½ to 2 years. The time frame and budget estimates for the State of the States objective remained the same as in the 2009 Plan.
Ms. Blackwell noted that an objective related to developing promising practice papers on successful ASD services in communities had not been added to Question 7, the new infrastructure chapter. Dr. Insel noted that a Question 6 objective classified as "short-term" was to be completed in 2018 and suggested it be reclassified as "long-term." Dr. Hann explained that program staff had adjusted the target dates of objectives where wording changes had altered the item's meaning. Ms. Redwood stated that some of the revised dates did not meet the community's sense of urgency. For example, many of the short-term objectives were to be initiated by 2015. After discussion, the committee agreed that projects could be feasibly launched in 2 years, so the initiation date was revised to 2012 for several objectives. Dr. Ann Wagner, Chief of the Neurobehavioral Mechanisms of Mental Disorders Branch, NIMH, who had been involved in developing the budget estimates, explained that the 2015 date generated by program staff represented the completion date rather than the launch. Ms. Blackwell noted the need for a question mark in the title of Question 3 and asked that Question 6's new title be updated in the Introduction. Reviewing the Question 3 objectives, Dr. Rice asked that the number of studies on populations that are potentially vulnerable to environmental factors be increased from "at least one." The committee agreed and asked that this be changed to "at least two." Ms. Singer asked that the date for a workshop on subtypes and personalized interventions be moved from 2012 to 2011 and to allot a lump sum of $50,000, rather than dividing it over two years. Discussing Question 7, Dr. Insel recommended stating that NIH, not NIMH, launched the National Database for Autism Research (NDAR). Mr. Grossman asked if the chapter could include greater focus on applied research and Dr. Insel said that in order to publish the 2010 Plan in a timely manner this might be an issue to address in the 2011 version. Ms. Blackwell stated that the section on developing the workforce was primarily directed toward the research workforce and not the service workforce. Dr. Insel noted that the committee understood the importance of increasing the number of service providers but that this aim might not belong in a research strategic plan. The committee reviewed the list of research resources in Question 7 and decided to remove NIAID resources that were not directly relevant to ASD research, as well as a proprietary software application that had been listed. Dr. Hann reviewed the suggested revisions to the Strategic Plan and the committee unanimously voted to accept the document.
Discussion of Plan Updating Procedures
The committee then discussed procedures for the next Plan update. Ms. Redwood noted that an analysis of current research spending (the 2008 IACC ASD Research Portfolio Analysis8) had not been used to identify gaps in the Plan. Dr. Insel emphasized the importance of mapping research spending to the Plan as part of the updating process. Dr. Janvier stated that the time and effort put into the Scientific Workshop had not directly translated into the outcome. She added that the process may have been more beneficial had the panels been informed that their final goal would be to produce line edits for the chapter. Ms. Blackwell said that her experience had been different and she felt that her panel's efforts had greatly contributed to the Plan update. Dr. Koroshetz noted that most strategic plans remain relatively static for a period of time and the only changes made are based on the progress fulfilling the plan's objectives. Dr. Insel said that he interpreted the Combating Autism Act to call for Plan updates to be based in part on the new scientific discoveries outlined in their Summary of Advances document. He noted that one of the pitfalls of rewriting the Plan every year was that progress could not be monitored. Mr. Grossman said that he felt the Plan did not address the sense of urgency for the autism community and did not provide help that would meaningfully impact families' lives in the near future. The committee agreed that the portfolio analysis of 2009 ASD research funding should be started as soon as possible to jumpstart the next update and authorized the Office of Autism Research Coordination (OARC) to request information from funders.
Discussion of Procedures for the 2010 IACC Summary of Advances
The committee then discussed the different options for creating the annual Summary of Advances and Dr. Hann reviewed the procedures used in the past. Last year, the committee was asked to choose from a pool of about 300 articles found through searches of PubMed and mainstream news outlets. Similar procedures could be used for the 2009 Summary of Advances or the committee could adopt an alternate process such as individually nominating a set number of articles. Dr. Hann asked the committee to decide on the rough number of articles that should be included in the final document. Ms. Redwood asked if the Summary of Advances should only include published research and suggested instead that it identify barriers and gaps to research, like the lack of access to educational records. The committee discussed this and concluded that it constituted a separate activity apart from the Summary of Advances. Ms. Singer stated that the Summary of Advances should be put out as soon as possible and recommended changing the format from a long narrative to short summaries of each article. The committee noted that the Summary of Advances had been helpful while updating the Plan. Ms. McKee said that the larger pool of articles provided last year had been a valuable resource for the community and asked that the list be made available again this year. Ms. Singer said that the suggested three articles provided by each member may be too small and recommended expanding the number to 5 to 10. The committee discussed the options and agreed to provide up to 10 articles via email. All articles must have been physically published (not e-published) in a peer-reviewed journal in 2009. This pool of articles nominated by the committee would then be sent back for electronic voting to select the 15 - 25 articles to include in the 2009 Summary of Advances. Committee members can opt to submit their own summaries of their submitted articles. The final product will be a collection of short article summaries. OARC will also collect a list of ASD research funded through NIH grants and/or noted in recent news articles. This list will be posted online as a community resource.
Discussion of Procedures for Addressing Public Comments to the IACC
The committee then discussed procedures for responding to public comment because it had been raised at a previous meeting. Dr. Hann stated that OARC received 132 written comments in 2009, separate from responses to RFIs and town hall meetings. The office fulfills any requests for transcripts or meeting materials and responds to factual questions. All comments receive a thank you message from the office with the promise that the comment will be distributed to the committee for the members' review. All written and oral public comments are given to the committee in their packet of meeting materials. However, the office does not prepare substantive responses for individual comments. Dr. Hann asked the committee if they would like to continue with the current practices or provide an addition or alternative, such as dedicating a period of time during meetings to discuss public comments.
No official policy exists to direct federal advisory committees on public comment response procedures. Dr. Guttmacher said that all the federal advisory committees he had been involved with followed a similar set of procedures to the IACC. Dr. Insel also asked if the committee wished to respond to oral public comment. (Currently, the committee allows members of the public to speak but does not directly address their comments). Ms. Redwood said that this practice made the committee look unresponsive to the public. Dr. Janvier stated that she liked hearing public comment early in the meeting because it often affected her thought processes on some issues. Dr. van Dyck endorsed holding a period to respond to public comment at the end of the day and relating it to potential agenda items for the next meeting. Ms. Redwood asked whether a 1-page response describing the IACC's activities could be developed to send to people submitting written comments. The committee asked about the 7-day advanced notice required for members of the public to speak during the meeting. Dr. Hann explained that this allowed OARC to collect and copy the comments for the committee in a timely manner. The committee voted in favor of holding a public comment session in the morning and discussing the comments during a designated period in the afternoon at each meeting of the full IACC.
Closing Comments and Adjournment
Mr. Henry Claypool spoke about HHS initiatives related to the "Year of Community Living," established to support the fullest inclusion of people with disabilities in their community. The "Year of Community Living" is a celebration of the ten-year anniversary of the Supreme Court ruling in Olmstead v. L.C, 527 U.S. 581, which established that unjustified institutionalization of people with disabilities represents discrimination under the Americans with Disabilities Act (ADA). The Office of Disabilities is leading the efforts of a coordinating council convened by HHS Secretary Kathleen Sebelius, to address obstacles that prevent full community inclusion for people with disabilities. Mr. Claypool said that the council's work would affect people with ASD and that they would refer to the Strategic Plan to identify potential research opportunities.
After thanking Mr. Claypool for his remarks, Dr. Insel noted that the Office of the Secretary of Health and Human Services had expressed interest in expanding the IACC and that he would keep the committee informed as events progressed. With that final comment, the meeting was adjourned.
These minutes of the IACC Full Committee were approved by the Committee on April 30, 2010.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
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4 Buie T, Campbell DB, Fuchs GJ 3rd, Furuta GT, Levy J, Vandewater J, Whitaker AH, Atkins D, Bauman ML, Beaudet AL, Carr EG, Gershon MD, Hyman SL, Jirapinyo P, Jyonouchi H, Kooros K, Kushak R, Levitt P, Levy SE, Lewis JD, Murray KF, Natowicz MR, Sabra A, Wershil BK, Weston SC, Zeltzer L, Winter H. Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: a consensus report. Pediatrics. 2010 Jan;125 Suppl 1:S1-18.
5 Recommendations for evaluation and treatment of common gastrointestinal problems in children with ASDs. Buie T, Fuchs GJ 3rd, Furuta GT, Kooros K, Levy J, Lewis JD, Wershil BK, Winter H. Pediatrics. 2010 Jan;125 Suppl 1:S19-29.
6 Randomized, controlled trial of an intervention for toddlers with autism: the Early Stage Denver Model. Dawson G, Rogers S, Munson J, Smith M, Winter J, Greenson J, Donaldson A, Varley J. Pediatrics. 2010 Jan;125(1):e17-23. Epub 2009 Nov 30.
7 Building Systems of Care for Children with Special Health Care Needs : Pediatrics Supplement – December 2009
8 2008 IACC Autism Spectrum Disorder Research Portfolio Analysis (PDF – 147 KB)