Minutes of the Interagency Autism Coordinating Committee (IACC) Full Committee Meeting on January 14, 2014
The Interagency Autism Coordinating Committee (IACC, also referred to as "the Committee") convened a meeting on, Tuesday, January 14, 2014 from 9:00 a.m. to 5:00 p.m. at the National Institutes of Health in Bethesda, Maryland.
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.
Thomas Insel, M.D., Chair, IACC, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), NIMH; Idil Abdull, Somali American Autism Foundation; James Ball,* Ed.D., BCBA-D, JB Autism Consulting ; Anshu Batra, M.D., Our Special Kids; Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Aaron Bishop, Administration for Intellectual and Developmental Disabilities (AIDD), Administration for Community Living (ACL) (representing Sharon Lewis); Coleen Boyle, Ph.D., M.S. Hyg., 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.); Noah Britton, M.A., Bunker Hill Community College; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey,* Ph.D., Left Brain Right Brain; Judith Cooper, Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Jose Cordero, M.D., M.P.H., University of Puerto Rico; Jan Crandy, Nevada State Autism Treatment Assistance Program; Geraldine Dawson, Ph.D., Duke University; Tiffany Farchione, M.D., U.S. Food and Drug Administration (FDA); Alan Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Alice Kau, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Donna Kimbark,* Ph.D., U.S. Department of Defense (DoD); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS);Sharon Lewis, Administration for Intellectual and Developmental Disabilities (AIDD); David Mandell,* Sc.D., University of Pennsylvania; Shantel Meek, Ph.D., Administration for Children and Families (ACF); John O'Brien, M.A., Centers for Medicare and Medicaid Services (CMS); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Cathy Rice, Ph.D., Centers for Disease Control and Prevention (CDC) (representing Coleen Boyle, Ph.D., M.S. hyg.); Scott Michael Robertson, Ph.D., M.H.C.I., The Autistic Self Advocacy Network (ASAN); John Robison, College of William and Mary; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Linda Smith, Administration for Children and Families (ACF); Larry Wexler, Ed.D., U.S. Department of Education (ED) (representing Acting Assistant Secretary Michael Yudin)
*Note: Attended by phone
Roll Call and Opening Remarks
Dr. Thomas Insel called the meeting to order, welcomed everyone and called roll.
Approval of Minutes
The Committee then voted to approve the minutes from the December 13, 2013 meeting of the IACC as written.
Thomas Insel, M.D., Director, National Institute of Mental Health, Chair, IACC
Dr. Thomas Insel briefly discussed a few advances in autism research since the July 2013 IACC meeting. He commented that there had been a great deal of important research that didn't specifically address autism, but which nonetheless would have far-reaching impact on autism. He highlighted several recently published journal articles. This review (PDF – 400 KB) can be found on the IACC Website. He first mentioned studies that fell under Question 1 (When should I be concerned?). In the first study, researchers found that parents of an older child with autism recognized autistic symptoms 6 months earlier than parents without an older child with autism.1 In another study, researchers found that changes in infant eye gaze seen by 6 months of age corresponded with children who would go on to develop ASD.2 Several studies addressed Question 2 (How can I understand what is happening?) In one study, researchers found differences in the pattern of methylation across the whole genome in the post mortem brains from individuals with autism.3 Researchers also found that a group of proteins that play a role in gene expression don't appear to work properly in individuals with ASD,4 said Dr. Insel. Another group of researchers were able to use insulin-like growth factor 1 (IGF1) in vitro to restore synaptic deficits in neurons created from cells from individuals with Phelan–McDermid syndrome (PMDS) and autism.5 In another study, researchers suggested that changes in gut microbiota during pregnancy could lead to gastrointestinal and behavioral abnormalities in offspring, such as those associated with neurodevelopmental disorders.6 With regard to Question 3 (What caused this to happen and can it be prevented?), researchers demonstrated that mothers of an ASD child were more likely to have anti-brain antibodies than women without a child with ASD in the largest such study to date.7 In another study, researchers found that when antibodies from mothers of children with ASD resulted in altered brain growth and social development behavior in Rhesus monkeys.8 Dr. Insel briefly touched on a study that suggested that the nine most common genetic findings in autism fit together as a picture in the fetal brain, not the adult brain.9 In terms of Question 4 (Which treatments and interventions will help?), a comparative effectiveness study found that two widely used comprehensive treatment models (LEAP and TEACCH), in addition to a non-model specific approach that combined aspects of several validated approaches, were equally effective, and that classroom quality was likely the most important factor when choosing from among validated approaches.10 An article in Pediatrics revealed that two-thirds of children with an ASD in diagnosis in one study were taking a medication, and one-third was taking more than one.11 The conclusion of a Cochrane report was that the evidence does not support the use of selective serotonin reuptake inhibitors (SSRIs) for ASD core symptoms.12 Dr. Insel commented on the increased number of studies related to Questions 5 and 6 (Where can I turn for services? and What does the future hold, particularly for adults?). He very briefly mentioned recent studies on dental care13 and mental health services for mothers of children with autism.14 In a novel study, when enabled to make choices, parents in Massachusetts chose providers they knew, and were more likely to use services.15 With regard to Question 6, compared with individuals with intellectual disabilities, emotional disturbance, or learning disabilities, individuals with ASD are much less likely to live independently after high school.16 Similarly, researchers found that in a 10-year period adults with ASD had greatly reduced levels of independence and engagement in vocational educational activities, particularly for women.17
Dr. Walter Koroshetz noted that the technology available to examine brain tissue has advanced dramatically. Hypotheses from work with animal models can now be tested. However, the availability of tissue is very important to this research. Dr. Scott Robertson said that research on why declines in some adult outcomes occur and how to mitigate it are needed now. Studies should also address the match between an individual and the services he or she receives and the quality of those services. Dr. Insel agreed that there was more information from these studies that could help provide a picture of the transition period. Ms. Lyn Redwood suggested that the Strategic Plan include greater focus on the immune system and metabolic abnormalities. Dr. Insel asked if there had been any controlled studies on probiotics. Ms. Redwood said there had not been any, and there was a need for these studies.
Update on CAA Reauthorization, IACC Activities and GAO Review
Dr. Insel briefly reviewed the history of the Combating Autism Act (CAA) of 2006 and the Combating Autism Reauthorization Act (CARA) (PDF – 115 KB) of 2011. Under CARA, the IACC will sunset in September 2014 unless reauthorized by Congress. Dr. Insel said that starting around 2013 a number of Congressional hearings and media reports suggested that much of federally-funded research could not be replicated by industry. As a result, there has been a general call for greater replication of federal research. At the same time, however, in 2013, there was a Congressional request that the Government Accountability Office (GAO) assess whether there is duplication of effort in federal ASD research. In November 2013, the GAO published a report (PDF –3 MB) with its findings18. Overall, the GAO concluded that 84% percent of the autism research portfolio had the potential to be duplicative because in many cases, multiple federal agencies were funding projects on the same broad objectives, that the IACC's and federal agencies' efforts to coordinate and monitor federal autism activities were "limited." Dr Insel pointed out the irony and challenge in simultaneously having government reports and bodies concerned about both replicability (implying potential lack of adequate duplication/corroboration) of research, and about the potential for too much duplication in federal research programs.
Dr. Robertson pointed out that some of the Strategic Plan objectives are intentionally broad. While there may be multiple projects included under one objective, these projects may be investigating different questions. Dr. Donna Kimbark noted that the GAO used the terms "potential" and "unnecessary" duplication but did not explain why those particular terms were used. She also pointed out that the GAO failed to appreciate the fundamental principles of science, one of which is the need for the replication of studies. Many members agreed that it appeared that GAO did not understand the necessity of replication in science, and that having multiple projects addressing a broad goal from different vantage points did not constitute unnecessary duplication.
Ms. Alison Singer said the GAO report showed a lack of understanding of the Strategic Plan. She expressed concern that this report would be used during the CAA reauthorization process to reduce federal funding for autism research. Ms. Singer proposed that the IACC draft a letter in response to the GAO report, explaining why the Committee chose such broad objectives, and why replication is a necessary part of the scientific process. She also pointed out that while the GAO said that 84% of federally-funded projects had the potential for duplication, only four specific instances were identified by title. Ms. Idil Abdull pointed out that the GAO assessment was requested by members of Congress, who had received numerous calls and emails asking them to cut funding for the IACC and federal autism programs. The GAO report was simply a response to this request. She said that any response from the IACC would need to carefully and clearly explain why there might appear to be a duplication of effort. Dr. Insel said that during the last reauthorization, some members of the IACC had expressed concern about the role/efficacy of the IACC. Dr. Koroshetz suggested clearly explaining the role of replication in scientific research in the proposed letter. Dr. Kimbark said that it was unfair of the GAO to conclude that the IACC failed to coordinate federal autism research in terms of the funding for individual grants because the Committee doesn't have the authority to make funding decisions or to dictate to federal agencies what they can and cannot fund. The IACC's authority is limited to making policy recommendations to the Secretary of the Department of Health and Human Services (HHS). Many members of the IACC agreed with this statement.
Dr. Insel noted that those working on other diseases (e.g. Alzheimer's disease) point to the IACC as a model for cross-agency and public-private coordination. He also said that the GAO report's conclusions about duplication were surprising given that each of the agencies involved have very different missions. The report suggests that there are very blurred roles between the various agencies involved in autism research. Dr. Geraldine Dawson pointed out that the aim of the Strategic Plan is to identify high priority areas. Ideally, agencies would focus funding on those gap areas by funding multiple projects. In this light, the GAO may be mistaking collaboration and cooperation among federal agencies as "duplication," and what they are pointing out as a shortcoming may actually reflect successful coordination. Ms. Redwood said that the Committee now has the information/data necessary to analyze the individual projects encompassed by the Strategic Plan to assess duplication. This could help to identify funding that could be removed from those projects and redirected to areas that are deemed to be underfunded. She pointed out that this type of activity was one of the recommendations of the GAO report. Ms. Singer said that using the GAO's metric of duplication— having multiple funders involved in one objective—the IACC necessarily would find duplication. However, this metric is not appropriate in this context. She added that duplication had different meanings for the IACC and the GAO, which equated duplication with waste. That interpretation may not be appropriate in light of the IACC's goals.
Dr. Daniels said that the Federal agencies included in the report were in the process of drafting their official responses to the report for submission to GAO. Dr. Insel reminded the Committee that the GAO currently believes that the IACC itself does not feel that its coordination efforts have been adequate, based on comments that some IACC members made to GAO. Dr. Dawson pointed out that the composition of IACC has changed since the GAO received comment from Committee members, and that since then, opinions may have shifted. Ms. Singer volunteered to write a draft of the letter to GAO to let the GAO know about the current Committee's concerns about the conclusions of the GAO report. Dr. Daniels noted that if the IACC was going to draft a response to GAO, that this response would be separate from the responses of the various Federal agencies, since the IACC is an independent federal advisory body. The public members of the Committee agreed that the letter should come from only the public members. Singer agreed draft the letter on behalf of IACC public members who wanted to participate and circulate it to the public members for review and comments.
Dr. Insel said that the current 2013 Strategic Plan Update draft represented changes sent by members and incorporated since the December 13, 2013 IACC Full Committee Conference Call. Members would have a chance to make comments and suggest minor changes during this session. However, the goal was to approve a final draft.
Dr. Daniels asked the IACC members for comments about the draft chapters. Dr. Anshu Batra suggested two minor changes. She asked to make the sentence "Among infant siblings, differences in both white-matter tracts and posture and have been observed in 6-month-olds who are later diagnosed with ASD" (chapter 1, page 3, paragraph 3, line 3) into two sentences. The second was to add "and posture" after "motor tone" (chapter 1, page 4, paragraph 3, line 7), and to add "visual attention" before "joint attention" (chapter 1, page 4, paragraph 3, line 8).
Ms. Redwood asked about including additional information on immune and metabolic conditions in Chapter 4, particularly with regard to the potential for identifying treatments. Dr. Daniels noted that there was at least one related study in Chapter 2. She suggested adding "immune and metabolic conditions" after "gastrointestinal (GI) disturbances" (chapter 4, page 3, paragraph 2, line 3), along with a few citations. Ms. Jan Crandy asked why there was not a list of environmental exposures. Dr. Daniels said that a list of references, which included lists of exposures, had been provided. Dr. Koroshetz suggested clarifying the term "DNA methylation" (chapter 2, page 4, paragraph 2). They agreed to change the first line of the paragraph to "the study of DNA modifications, such as methylation". Ms. Redwood asked why there was no mention of vaccines in the text. Dr. Daniels asked for proposed text. Ms. Redwood noted that in previous versions of the Strategic Plan, they had included text to the effect that the subject continued to be an area of concern for some parents. She also suggested including discussion of immune response research. Dr. Insel said that the Committee had previously discussed whether to include vaccines in the Strategic Plan, and voted not to do so. He reminded the Committee that the intent of this year's update was to provide an accounting of progress, not to rewrite the Strategic Plan. A proposal was made to include text in Chapter 2 about understanding immune response in infection and vaccination during pregnancy (maternal immune activation). However, Dr. Insel said that the existing language was broad enough to cover this area. The Committee voted whether to add language on maternal immune activation to the text. Fifteen members voted against, and six members voted in favor of adding the language. The motion was not passed.
Dr. Batra suggested adding a few words to the "Conclusion" (page 3, bullet 3): "including the need to educate community practitioners on the translation of science to practice." Dr. Daniels suggested that this language might be better suited to Question 5, regarding translation across settings. Dr. Batra said that the question of how to use science in community had been a common theme in the IACC. Dr. Daniels suggested adding text to Chapter 5 (end of paragraph 1). Ms. Singer suggested rephrasing text in the third bullet point of the Conclusion to read "providing an opportunity to study and encourage the use of evidence-based interventions and services in a real-world setting." Dr. Tiffany Farchione said that this wording suggested that evidence-based interventions and services already exist, which is not the case. Dr. Insel noted that the message of the bullet was about going from practice to research. In other words, studying what was being done in the community to determine if these tools and practices had value. He also said that while practitioners had a valuable role to play, the future might be about empowering families to make better choices. [It was noted that the heading of the third bullet should read "Practice to Research."] Ms. Abdull suggested that it might be helpful to explain what "community" encompasses. The Committee agreed to include an additional sentence about the importance of disseminating or implementing scientific findings by educating providers, empowering families, and ensuring high-quality care (Conclusion, page 3, bullet 1, last line).
Dr. Dawson had one change to Chapter 1 (chapter 1, page 4, paragraph 1, line 1). She asked to replace "this is not the case" with "this may not be the case." Dr. Robertson asked to add more detail about one of the studies mentioned in Chapter 6 on community-based participatory research (chapter 6, page 2, paragraph 2, last line). Ms. Abdull asked to add text to Chapter 4 (chapter 4, page 5, paragraph 4, last line). The Committee agreed to add "in a manner that is culturally responsive" following the text "diverse communities". The IACC unanimously accepted the draft of the Strategic Plan with the changes suggested during the session.
Ms. Marian Dar presented a video, which addressed the possibilities of alternative and whole body medicine in the treatment of individuals with autism.
Linda Varsou addressed several autism related issues needing immediate attention: chronic parent denial of diagnosis, the judicial system, enforcement, and services. She also discussed an Israeli study on denial.
Discussion of Public Comments
Dr. Robertson asked Dr. Varsou for greater detail on the study on denial. She said that the study that she cited is the first serious study on denial but is likely subject to bias due to the study enrollment. Dr. Insel commented that the issue of denial has been seen with other disorders. Mr. Robison asked whether denial rises to a level at which action should be taken (i.e. neglect). Dr. Varsou said that denial can affect all aspects of a child's improvement and life, and could be considered a type of neglect. Ms. Crandy agreed, noting that denial delays treatment and use of services.
Several members voiced a concern that many parent may perceive the IACC as not responding to their issues and concerns, including immune and GI problems. However, they wanted to assure parents that the IACC did receive, review, and as time permits, discuss public comments. Ms. Abdull noted that immune and GI issues were included in the Strategic Plan that the IACC had just approved. She also said that as a mother of a child with autism, she understood the impatience of members of the public for treatments and interventions. However, she encouraged other parents to try to understand the scientific perspective. Research takes time but is very necessary.
Ms. Crandy noted that some members of the public have expressed frustration that public comments are not posted on the IACC Website. Dr. Daniels said that the Office of Autism Research Coordination (OARC) is in the process of developing a searchable, publicly accessible database of public comments. However, there are a number of legal issues that need to be addressed before the database can be made public, particularly with regard to the Privacy Act of 1974, which requires that the privacy of individuals be protected. In the meantime, individuals can request public comments.
Ms. Redwood expressed concern that the Committee did not address public comments individually. She also noted that the Committee had received several comments about comorbidities, and asked what the status was of the Planning Group on comorbidities. The IACC had voted to create this Planning Group (of the Basic and Translational Research Committee) at the July 2013 full IACC meeting. Dr. Daniels noted that much of the IACC's time throughout the fall was devoted to the Strategic Plan. In terms of the membership of the group, Dr. Insel and Ms. Redwood were the only volunteers to date. Since the Strategic Plan Update work was nearly completed, the Committee may be able to turn its attention to working on plans for the comorbidities group. The subject of the Combating Autism Act reauthorization was raised, and Ms. Abdull encouraged IACC members—as private citizens—to contact their representatives and senators to support reauthorization and funding, and to ask for a longer term for the IACC.
Redefining Autism for the Biological Sciences: Implications and Translational Opportunities
Ami Klin, Ph.D., Director, Marcus Autism Center, Children's Healthcare of Atlanta, and Professor and Chief, Division of Autism and Related Disabilities, Department of Pediatrics, Emory University School of Medicine
Dr. Ami Klin started by discussing his research (PDF – 3 MB) into whether children with autism perceive individuals as social objects. To do this, he and his colleagues developed point-light display animations. One set of lights moved in ways that mimicked biological motion - the motion of living beings.19, 20 The other set was the same motion inverted. Using technology that allows eye tracking, they found that typically-developing toddlers had a strong preference for looking at upright biologic movement animations than inverted ones. However, toddlers with autism spent roughly equal amounts of time looking at each set of animations-random attention. Similarly, with an animation of "patty cake", toddlers with autism treated the animation as lights and sounds, or as a physical contingency. Overall, 90 percent of the variance of the visual behavior of those 2-year-olds could be predicted on the basis of audiovisual synchrony - a physical contingency. Dr. Klin explained, using a video example, that toddlers with autism focus on the lips when interacting with a caregiver.21 Children without autism focus on the eyes. He said that children with autism can develop relationships, they just do so differently.
Dr. Klin next discussed his recent work with Warren Jones, Ph.D. on eye attention in infants.22 Using a new technology, the researchers were able to measure the eye gaze position of infants as old as 24 months. They found that infants who were later diagnosed with autism did focus their gaze on the eyes of caretakers at a very young age, but this attention declined between 2-6 months. If replicated, this technique could be an early marker for autism that could be used in the community, and could lead to early intervention, he said. They next looked at eye gaze in high-risk siblings. These siblings all had a similar decline in eye gaze in the first 6 months, but around 18 months of age, their eye gaze began to improve. From a biologic standpoint, the system began to change around 9 months, said Dr. Klin.
They hypothesize that the first portion of the skill is reflexive and is experience-expectant. In this portion the emphasis is on genetics and is subcortically-controlled, said Dr. Klin. Then a transition occurs. In a way behavior is co-opted in the service of higher-level function. Eye fixation becomes interactional and reward-driven. Babies engage with the others. Behavior is experience-dependent, and cortically-controlled. Dr. Klin also briefly discussed one of the primary challenges to the development of psychopharmacologic treatments for core autism symptoms. Right now, it is not possible to quantify social ability/ability in substantive enough ways that make development, testing, and approval processes worth the investment to large pharmaceutical companies into new compounds to improve the symptoms and quality of life of those with ASD.
Mr. Britton asked Dr. Klin if it is the movement of the mouth that directs children's gaze away from the eyes, rather than an internal opposition to eye contact. Dr. Klin said that in very young infants, when the eyes don't appear to hold much value, it becomes an aversive sort of stimulus over time. So when someone tries to engage the child, it doesn't make any sense to them, he said. This eye gaze behavior may be acquired in that manner. There also is the issue of the audiovisual synchrony. It's really a distraction for the children that he sees. This is one of the research questions that they have been working on at the Marcus Autism Center- trying to engineer an environment with removed or at least alleviated distractions. Then they can try to improve the salience value of eyes for these children.
National Science Foundation Research Activities Related to Autism
Mark H. Leddy, Ph.D., Program Director, Division of Human Resource Development, Directorate for Education and Human Resources, National Science Foundation
Dr. Mark Leddy first provided an overview of the National Science Foundation's (NSF) background, mission, organization, budget, grant award process, and awardees. He noted that the NSF did not have an autism research program, or specific autism initiatives. The NSF funded only basic research, not clinical research. Dr. Leddy said that while the NSF was not a member agency of IACC, it was very interested in interacting with the IACC. Moreover, the NSF did fund a limited number of awards in which autism was a component of the research. These projects were included in the neuroscience, cognitive sciences, and research in disability education portfolios.
Autism-related components might also be included in NSF-funded computer simulation work, robotics technologies - where there is the potential for broader impact in the future for people with autism, said Dr. Leddy. He provided a few examples:
- Collaborative Research: Computational Behavioral Science: Modeling, Analysis, and Visualization of Social and Communicative Behavior: (James M. Rehg, Ph.D., Georgia Institute of Technology). These researchers are analyzing social and communicative behavior using newly developed technologies. While this is more basic research, they hope that their work eventually will support the study and treatment of developmental disorders like autism.
- CAREER: Typical and atypical development of brain regions for Theory of Mind: (Rebecca Saxe, Ph.D., Massachusetts Institute of Technology). Dr. Saxe is studying typical and atypical development of the brain regions for theory of mind. Specifically, she has identified the right temporal/parietal junction, a very specific region of the brain that is where people think about their own thoughts, and also where people think about the minds of others. Dr. Saxe is comparing the performance of typically developing children to children with autism, and other children who had delayed development of language, (such as deaf children of non-signing parents). In particular, she is looking at that area of the brain during certain cognitive social tasks. The potential here is very interesting for identifying brain activity that's specifically related to theory of mind and potentially leading to interventions.
- Predictors of Success in Postsecondary Science, Technology, Engineering, and Mathematics (STEM) Education and Employment for Students with Autism: (Jose Blackorby, Xin Wei, Jennifer Yu at SRI International; Paul Shattuck, Drexel University). Dr. Blackorby is investigating the base factors that are associated with postsecondary education and initial employment experiences for young adults with autism in STEM fields. They recently published findings that suggest that students with ASD had the greatest participation rates STEM studies in college than any other students with disabilities.
Dr. Robertson asked if there might be more active engagement in autism research by the NSF in the future Dr. Leddy said that the NSF funds the most meritorious basic science studies, so the number of funded projects could vary in the future depending on the number and quality of proposals on ASD received. Dr. Robertson also asked about the findings regarding individuals with ASD in STEM studies in college. He questioned the number of those students who graduated. Dr. Leddy said that it is known that those with autism are among the groups least likely to go to college. However, if they do enroll, they are more likely to study STEM.
Ms. Abdull asked about one of Dr. Leddy's earlier comments about proposals for clinical research that come to NSF that are sent on to NIH. Dr. Leddy clarified his comments, saying that typically researchers contact NSF in advance to discuss their idea for a study. NSF supports basic research. Sometimes basic research may have an indirect relationship to autism. Dr. Insel provided an example with Dr. Saxe's work. The NSF-funded project would likely be analyzing theory of mind in healthy undergraduates, while the NIMH-funded project might be theory of mind in adults with an ASD diagnosis. He said that often one researcher could be funded by both agencies but with differently focused projects.
Ms. Abdull also asked whether NSF has an office for diversity and about diversity within NSF. Dr. Leddy said that the Office of Diversity and Inclusion works with the public and also NSF employees of the Foundation. When asked about the number of people with disabilities employed by the National Science Foundation, Dr. Leddy reported the percentage to be about 25%. This information was based on data from previous survey collections. More recent survey data collected using new reporting practices indicates that the percentage of total NSF employees reporting a disability is 8%.
DSM-523 Planning Group Update
Geraldine Dawson, Ph.D., Professor of Psychiatry and Behavioral Sciences, Duke University School of Medicine; Director, Duke University Center on Autism Diagnosis and Treatment; Co-Director, Duke University Developmental Neuroscience Research Program; Member, IACC
Dr. Dawson provided an overview of the DSM-5 Planning Group's initiation, composition, conference calls, and the final product, a Statement on Research and Policy and Practices Issues related to the Diagnostic and Statistical Manual of Mental Health Disorders 5th edition (DSM-5) that need to be addressed. In the statement, the Planning Group described these issues and concerns more fully. Dr. Catherine Rice reviewed research needs related to the DSM-5; Dr. Dawson reviewed the policy and practice issues related to the DSM-5.
Dr. Insel expressed confusion regarding two seemingly conflicting statements regarding policy and practice. First the document stated that "use of severity ratings to prescribe services is not appropriate." However, later the document said "services should be based on need rather than diagnosis." Dr. Dawson explained that a severity rating should not be used to qualify for or deny access to a specific service for any individual. Severity ratings were not reliable enough yet to guide services. Dr. Wexler noted that under Individuals with Disabilities Education Act (IDEA) services are based on an individual's needs, not on the specific diagnosis they may have. Ms. Abdull asked if there would be training for practitioners on the use of the DSM-5. There seemed to be the potential for misdiagnosis, she added. Dr. Dawson noted that this was a topic of discussion for the Planning Group, and is included in the document. However, how to interpret and use the DSM-5 is a state decision. At least this document provides some guidance for those in the community who will be involved in implementation, she said. Dr. Wexler said that ED does have training resources, but the problem might be that there are no answers yet to some of these questions about DSM-5. The Committee requested more time to review the document prior to voting, so it was agreed that the Committee could take some additional time to review and comment on the document and then vote via e-mail. Following the vote, if approved, the statement could then be released online.
Office of Autism Research Coordination Update
Susan Daniels, Ph.D., Acting Director, Office of Autism Research Coordination, NIMH, Executive Secretary, IACC
Dr. Daniels provided a brief overview of OARC activities, including several publications that were expected in the next several months. These included the Combating Autism Act Report to Congress (FY 2010-FY 2012), the 2013 IACC Strategic Plan Update, the 2013 IACC Summary of Advances, and the 2011-2012 IACC Portfolio Analysis. The Report to Congress would encompass information on federal autism-related activities (research and services). The Portfolio Analysis would contain data from 2011 and 2012, as well as data collated from 2008-2012, which was previewed during 2013 IACC Strategic Plan Update process. The Summary of Advances provides lay-friendly summaries of the IACC's picks for the 20 most significant advances in ASD biomedical and services research. Dr. Daniels briefly reviewed the 2013 Summary of Advances process.
PROMISE (Promoting the Readiness of Minors in Supplemental Security Income)
Larry Wexler, Ed.D., Director, Research to Practice Division, Office of Special Education Programs (OSEP), U.S. Department of Education (ED)
PROMISE is a collaborative program between ED, the Social Security Administration, HHS, and the Department of Labor. The program is a model demonstration randomized controlled trial, for which states are the grantees. The states must have a minimum of 2,000 participants, who are randomly assigned to either a treatment group (work experience, dropout prevention, vocational counseling or some combination) or non-treatment group (whatever services they would normally receive), said Dr. Wexler. These individuals receive supplemental security income (SSI), and essentially live at poverty level. They are definitely finding individuals with ASD in these populations, he noted. Treatment is also directed to the family. The program targets children 14-16 years old on SSI at the time services are initiated. Arkansas, California, Maryland, New York, and Wisconsin agencies are grantees. In addition, there is a consortium led by Utah, and including South Dakota, North Dakota, Montana, Colorado, and Arizona.
Dr. Insel asked about whether there had been an economic analysis for PROMISE. Dr. Wexler noted that one of the questions, from a financial perspective is whether it is possible to reduce the number of children on SSI.
Update on the Minneapolis Somali ASD Prevalence Project
Coleen Boyle, Ph.D., M.S. Hyg., Center Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
Dr. Coleen Boyle provided background of the concerns of the Somali community about the prevalence of ASD among their children. In 2009, a Minnesota Department of Health report suggested that Somali children participated in ASD public pre-school programs much more than other children. In 2010 the IACC requested that federal agencies and private organizations collaborate to support additional ASD activities in Minneapolis. The Minneapolis Somali ASD Prevalence Project24 began in 2011. The project's key findings were based on children aged 7-9 years who lived in Minneapolis in 2010. The researchers found that Somali and White children were about equally likely to be identified with ASD. Somali and White children were more likely to be identified with ASD than Black and Hispanic children. Somali children were much more likely to have intellectual disability than children with ASD in other racial and ethnic groups. The average age of diagnosis among Somali children was about the same as for White, Black and Hispanic children – 5 years — which is later than the national average.
However, the findings are limited to Minneapolis. Also, it is not possible to compare the data with Autism and Developmental Disabilities Monitoring (ADDM) network data because of differences in person, place, and time, said Dr. Boyle. The findings can be used to make improvements in early identification efforts and services planning, however, and future research should focus on how and why ASD affects Somali and non-Somali children differently. The technical report is expected to be published this year.
Ms. Abdull, who was active in focusing attention on ASD prevalence in the Minneapolis Somali community early on, thanked federal officials and private funders for their support with this project. She said that the next step should be to ensure that children with autism get needed supports and services, and that these children are identified earlier and can receive early intervention. She also said that research is needed to understand why autism affects different races and ethnicities in different ways. Ms. Redwood said that these disparities could be related to environmental exposures. For example, skin bleaching creams are used among Somali women. These products can contain mercury and hydroxyquinone, which could play roles in developmental delays or intellectual disabilities in their children. Ms. Crandy asked when to expect the newest CDC prevalence rates. Dr. Boyle said to expect that information in April in two publications. There was a brief discussion of recent prevalence rates in several states. Ms. Redwood asked if there were plans to investigate in more depth those areas with the greatest prevalence rates. Dr. Boyle cautioned that community size is important because statistical confidence can make the estimate unstable. Dr. Insel mentioned research by Dr. Peter Bearman of Columbia University on social clusters25, 26, which found that clusters were driven by availability of services (medical migrants), rather than environmental factors as has been commonly assumed. Ms. Abdull said that prevalence is not the real issue, so much as severity, since the recent study had shown that 100% of the Somali children in the study who had IQ records were found to have intellectual disability.
Round Robin Discussion
Dr. Shantel Meek (Administration for Children and Families) provided a brief overview and update on the Developmental and Behavioral Screening Initiative (Birth to Five: Watch Me Thrive!), which will launch in late February. The initiative consists of three components. The first is a compendium of valid and reliable screening instruments on general development. The second piece of is a series of user guides tailored to a variety of different professionals who work with young children. The final part of is a resource toolkit - a website. It includes federally funded or federally produced resources on child development, on where to go and what to do if you have concerns, different tips for parents or providers, and where to go for local help. Learn the Signs. Act Early serves as the basis of that.
Dr. Birnbaum (NIEHS) said that NIH would be releasing a funding opportunity announcement for research that addresses contributions of the environment to autism. There are many specific areas of research interest, she said, including clinical, and population studies, animal studies, and cellular in vitro mechanistic studies. Dr. Alan Guttmacher said that the NICHD is putting together a large project to understand and monitor the human placenta in real time. This research could have relevance to autism. Dr. Robertson said that the Autistic Self Advocacy Network (ASAN) has a new book available for newly diagnosed individuals, Welcome to the Autistic Community in versions for adolescents and adults. Empowering Leadership: A Systems Change Guide for Autistic College Students and Those With Other Disabilities (available online) is a college student leadership book. Applications were available for the third Summer Leadership Academy held in June 2014. Ms. Crandy asked to add a review of CMS regulations on home- and community-based waivers to the April IACC meeting. Ms. Singer noted that the International Meeting for Autism Research (IMFAR) was scheduled for May 15 - 17 in Atlanta. She added that IMFAR has travel awards available to support graduate students and postdoctoral researchers. In addition, the Autism Science Foundation offers travel awards for stake-holders - parents, individuals with autism, teachers, therapists, and others. Mr. Robison announced that he was joining the new Neurodiversity Initiative at the College of William and Mary as scholar-in-residence. The initiative will offer courses for neurodiverse individuals to help them learn to navigate in the college setting, and also courses for those who want to work in neurodiversity fields. Dr. Koroshetz reported that all samples from the Norway Autism Birth Cohort (ABC) have been collected at Columbia University. In the study researchers followed mothers, collected cord blood, and maternal blood, and assessed a number of exposures, including infections and immunization. He said that it is likely that the cohort was successful in identifying most of the autism cases in Norway during that period of time. Dr. Insel reported that NIMH and NINDS had released six requests for application (RFAs) related to the President's BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative. Also, NIMH also released three RFAs related to all autism services, early identification and linkage to services, transition, age, youth and the challenges they face, and pilot studies of service strategies for adults on the spectrum. These were gap areas identified in the IACC Strategic Plan.
Dr. Daniels noted a few final items. Dr. Denise Dougherty from Agency for Healthcare Research and Quality had stepped down from the Committee. The agency has new leadership, and is doing new planning. For now, AHRQ has opted to withdraw from the IACC, she said. The next Committee meeting is scheduled for April 8, 2014.
Next IACC Full Committee Meeting
April 8, 2014 – National Institutes of Health, 31 Center Drive, Building 31, C Wing, 6th Floor, Conference Room 10, Bethesda, Maryland 20892
The meeting was adjourned at 4:51 p.m.
These minutes of the Interagency Autism Coordinating Committee (IACC) were approved by the Committee.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel /s/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
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