Minutes of the Interagency Autism Coordinating Committee (IACC) Full Committee Meeting on December 13, 2013
The Interagency Autism Coordinating Committee (IACC) convened a conference call on Friday, December 13, 2013, from 12:00 p.m. to 1:42 p.m.
In accordance with Public Law 92-463, the meeting was open to the public. Thomas Insel, M.D., Director, National Institute of Mental Health chaired the meeting.
Thomas Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., IACC Executive Secretary, NIMH; Idil Abdull, Somali American Autism Foundation; James Ball, Ed.D., BCBA-D, JB Autism Consulting, and Autism Society; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); 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) (for Francis Collins, M.D., Ph.D.); Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey, Ph.D., Left Brain Right Brain; 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; Denise Dougherty, Ph.D., Agency for Healthcare Research and Quality (AHRQ); Tiffany Farchione, M.D., Food and Drug Administration (FDA); Alan Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., NIEHS; David Mandell, Sc.D., University of Pennsylvania; Stan Niu, Ph.D., U.S. Department of Defense (DoD) (for Donna Kimbark, Ph.D.); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Scott Michael Robertson, Ph.D., M.H.C.I., The Autistic Self Advocacy Network (ASAN); John Robison, Self Advocate, Parent and Author; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Larry Wexler, Ed.D., U.S. Department of Education (ED) (for Michael Yudin)
Roll Call and Opening Remarks
The Interagency Autism Coordinating Committee (IACC) conference call convened December 13, 2013. Dr. Susan Daniels called the meeting to order at 12:00 p.m. She welcomed IACC members and members of the public to the call. She noted that meeting materials were available on the IACC website. Dr. Daniels called roll.
Dr. Thomas Insel reminded the group that the purpose of this update was to provide an accounting of autism research funding and progress as outlined by the Strategic Plan. He suggested reviewing the chapters (based on Strategic Plan Questions) in order, after addressing any general questions.
Several committee members raised the issue that they had limited opportunity to review the draft chapters prior to the call – particularly for chapters where they had not served on the chapter Planning Group. Several members asked if it would be possible to delay a decision on the chapters to allow more time for review and schedule another meeting. Dr. Insel and Dr. Daniels said that due to the lead time required to plan a committee meeting in compliance with Federal Advisory Committee Act (FACA) rules, the next best option would be to delay decisions about the draft chapters until the next full Committee meeting on January 14, 2014. This would mean, however, that the Strategic Plan would not be completed within calendar year 2013. Ms. Lyn Redwood asked if the Federal Government shutdown in October could provide grounds for extending the deadline for the final version of the Strategic Plan Update. Dr. Daniels said that the statute wording says that the IACC must provide an Update of the Strategic Plan each year and that though the update would be completed in 2014, it would still meet the requirement of the statute for a 2013 update as it would cover information through 2013 and be issued within a reasonable time following the end of the calendar year. Dr. Insel agreed, saying that the language calls for an "annual update". This could be interpreted to mean that for the purpose of yearly updates, the year starts on the day that the first Strategic Plan was released, which was January 26, 2009. The Committee decided to postpone a decision on the Strategic Plan Update until the January 14, 2014 full IACC meeting, giving members additional time to review the chapters and submit comments.
Question 1: When Should I Be Concerned?
Dr. Daniels led the discussion of the draft Question 1 Update, as OARC had assisted with the drafting the update. Dr. Geraldine Dawson said that the Question 1 Planning Group agreed that the need for screening and diagnostic tools for adults was an important issue, but that it was better addressed elsewhere in the document. Dr. Daniels noted that this need was reflected in an objective in Question 6, so that would be an appropriate place to mention that issue. Ms. Crandy asked whether the Group had considered whether or how to address co-occurring conditions at the time of diagnosis. Dr. Daniels said that the science of co-occurring conditions was discussed as part of Question 2. Dr. Insel noted that there was language in the text to the effect that the search for biomarkers should be broadened to include physiologic markers, such as sleep, EEG, autonomic measures, and GI function. Ms. Redwood suggested adding metabolic and immune function as well. She also suggested replacing EEG with neurologic disorders.
Dr. Insel suggested including recent work by Dr. Ami Klin of Emory University on eye tracking, which suggests that children who go on to develop autism looked less at people's eyes as infants compared with children who did not develop autism.1 Dr. Dawson said that they had included a sentence about Dr. Klin's work. In fact, Dr. Klin was an outside expert for this Planning Group. She added that the Group wanted to include caveats regarding the need for validation of such tools in both high-risk and general populations. Dr. Insel also suggested including work by Dr. Karen Pierce, of the University of California at San Diego, also on eye tracking, which showed that infants as young as 14 months who later received a diagnosis of autism looked at movies of geometric shapes more often than movies of moving children.2 Dr. Dawson agreed that they could add a sentence or two about this work. Dr. Insel said that eye tracking work was important because it could be scaled up to pediatrician offices, and could provide an easy screening tool eventually. Dr. Dawson said that the Planning group felt that while many new technologies are promising, that validation is necessary before one can fully evaluate the potential.
Question 2: How Can I Understand What Is Happening?
Dr. Koroshetz, who had chaired the Question 2 Planning group, provided a brief overview of the research subgroups within Question 2. These included: fever and immune system interactions with the central nervous system, biological pathways of genetic conditions related to autism, biological mechanisms of co-occurring conditions, specific genotypes that underlie autism spectrum disorder (ASD) phenotypes, studies on females with ASD, raising awareness of brain and tissue donation, characterization of regression, application of biosignatures to diagnosis, and large scale longitudinal studies of diverse populations with ASD.
Dr. Insel said that there had been several important breakthroughs, which did not address autism specifically, but which would have important implications for autism research. He asked whether the Planning Group had considered these in its discussions. The CLARITY (Clear, Lipid-exchanged, Anatomically Rigid, Imaging/immunostaining compatible, Tissue hYdrogel)3 imaging technique is one such breakthrough. This technique makes the brain appear transparent and allows researchers to view neuronal connections. He also mentioned work using induced pluripotent stem (IPS) cells, and work showing genomic rearrangement found in the brain but not in blood. Dr. Koroshetz said that the Group did include some of these breakthroughs in the text, including IPS cells, the Connectome (a map of the neural connections in the brain), and genetic rearrangements seen in the brain but not in the blood. They also discussed the President's Brain Research through Advancing Innovative Neurotechnologies (BRAIN ) Initiative in general terms. This initiative is intended to accelerate the development and use of innovative imaging technologies, which will allow researchers to produce a new dynamic picture of the brain that will show how individual cells and complex neural circuits interact in time and space.
Ms. Redwood asked about whether the discussion of co-occurring conditions could be elaborated with regard to topics such as immune and metabolic issues. Dr. Daniels said that she had not received specific points to add to the Question 2 draft on these topics but suggestions could be submitted. Dr. Daniels noted that some comments about mitochondrial dysfunction and oxidative stress based on the Planning Group discussion were included in the Question 2 Conclusion table that would also be part of the final document.
Question 3: What Caused This to Happen and Can It Be Prevented?
Dr. Cindy Lawler, who had chaired the Question 3 Planning Group, provided an overview of the Question 3 draft. In general the Planning Group felt that good progress had been made, but there were some gap areas. They included a summary of the genetic risk – the diversity of risk variation that adds to autism risk, and the increasing number of implicated loci. In addition, they noted that whole exome sequencing is adding to the number of genes associated with autism. The Planning Group observed that there had been significant advancement in understanding that the interaction between genes and environment plays a role in autism (previously very little was known). Dr. Lawler said that a number of potential environmental factors had been identified over the last 5 years, including a protective effect for prenatal vitamins, and risk associated with prenatal maternal infection, preterm birth, older parental age, shorter times between pregnancies, maternal use of certain medications, and exposures to chemicals and toxins.
Dr. Insel pointed out that this chapter was considerably longer than the other chapters and would need to be cut. Dr. Daniels and Dr. Lawler agreed to work together to shorten the chapter. Dr. Boyle suggested that the Planning Group include a sentence about the need to investigate ASD subclassifications as well. Ms. Idil Abdull suggested that issues of immigration and ethnicity should also be addressed.
Question 4: Which Treatments and Interventions Will Help?
Dr. Insel, who had chaired the Question 4 Planning Group, said that much work in the area of interventions had been started, but not completed because of the nature of clinical trials, which usually take more than five years to complete and publish. He noted that there are a number of projects currently underway, however. The Planning Group agreed that financial investment in this area had been good. However, the funded projects were relatively small. They also agreed that there were two large gap areas. The first was the need for novel interventions for core symptoms that are safe and effective for a range of ages and populations. The second was the need to provide more rigorous data about the efficacy of existing widely used treatments, including complementary medicine approaches. Dr. Insel said that the Planning Group felt that the latter was a more immediate need, and was not being addressed adequately. The Planning Group also discussed the promise of biomarkers. In addition to behavioral and pharmacologic interventions, the Planning Group was encouraged by the development of new technologies, including assistive tools for communication. Dr. Insel said that the Planning Group agreed that progress on interventions could come from targeted research, but also from serendipitous findings (e.g. improvement in ASD symptoms seen with a treatment for Crohn's disease). The Planning Group also agreed that there was a need for interventions for associated symptoms, such as sleep disorders and seizures.
Ms. Abdull asked to include language about the need for interventions for older children and adolescents. Dr. Insel said that for many NIH-supported intervention trials the inclusion age range is usually 8-18 years. Dr. Dawson said that it depended on the type of trial. Pharmacologic trials generally focus on older children, adolescents, and adults. Early interventions are intended for toddlers and preschool age children. However, trials of cognitive behavioral therapy and social skills therapies are conducted with school-age children and adolescents. Ms. Redwood suggested including immune and metabolic issues in the discussion of treatments for associated conditions.
Questions 5 and 6: Where Can I Turn for Services? What Does the Future Hold, Particularly for Adults?
Question 5: Where Can I Turn for Services?
Dr. David Mandell had chaired the Question 5 Planning Group, but was not able to participate in the call due to a schedule conflict, so Dr. Daniels led the discussion on his behalf. Dr. Daniels said that the draft of this chapter had not mentioned of Medicare coverage of ASD interventions and therapies, but that this has been an issue of interest for the IACC. She suggested that they might consider adding language to that effect. Also, there was no mention of military benefits, but OARC could add this information if the Committee agreed that it merited mention.
Ms. Crandy asked if they could address continued barriers to private and public insurance coverage. Dr. Daniels said that this information could be added to the text to cover this issue in more depth. Ms. Alison Singer commented that this chapter did not include as much economic data as other chapters. She suggested adding information about the updated economic costs of autism. Dr. Daniels noted this to share with Dr. Mandell. Mr. John Robison suggested adding language expressing concern about the range of coverage for autism therapies and interventions in states where coverage is available. Ms. Crandy mentioned that it also would be helpful to mention the intensity level of therapy that is recommended versus that covered by insurance. Insurance often pays for a set number of hours of intervention per year, but due to the intensity of some therapies, paid visits often end mid-way through the year. Ms. Abdull suggested the need for evidenced-based therapies for older children, in order to get coverage for this age group. Dr. Insel reminded the Committee that the Strategic Plan Update is a document about research priorities, so that discussion of policy issues should be framed as contextual material and not be overly extensive.
Question 6: What Does the Future Hold, Particularly for Adults?
Dr. Mandell had also led the Question 6 Planning Group (same as the Question 5 Planning Group), but was not present, so the Committee proceeded with discussion. Ms. Crandy suggested that they include a sentence or two about community living, and also about lower-functioning adults. She said that the chapter somewhat favors high-functioning adults with ASD and suggested expanding the chapter to discuss the needs of more severely affected adults with ASD. Mr. Robison suggested replacing the phrase "growing number of adults with autism" with "increased awareness of adults with autism." Dr. Insel agreed, saying that data supports this.
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
Ms. Singer, who had chaired the Question 7 Planning Group, said that the Planning Group agreed that good progress had been made in the areas of data sharing, workforce expansion, and model systems resources. Gaps included the documentation of services available in each state, expansion of biobanks and the number of donations, and expansion of the surveillance infrastructure. In terms of databases, they noted OARC's IACC Portfolio Analysis Web Tool (which consolidates data regarding research-related projects in one location), the Interactive Autism Network (IAN) (which matches researchers with research subjects), and NIH's National Database for Autism Research (NDAR) (which now includes data from 81% of NIH-funded clinical studies). Ms. Singer said that the number of brain tissue samples has been a problem due to a freezer malfunction in 2012 that resulted in a great loss of samples. However, a new private initiative, the Autism BrainNet, is underway and includes a campaign to increase donations. NIH also has launched a new brain bank initiative with the hopes of collecting additional samples for autism research. With regard to surveillance, the Autism and Developmental Disabilities Monitoring (ADDM) Network – funded by CDC to estimate the number of children with ASD – has expanded to include younger children at selected sites. The network has also undertaken studies to better characterize children with ASD. One important gap they noted is that very little progress has been made in reducing the age of diagnosis. Also, there are now a greater number of children identified with autism with less intellectual disability.
Dr. Insel said that the section on surveillance was focused on the CDC, and that other agencies and international efforts should be included. Ms. Singer noted that two projects that were led by groups other than the CDC had been included: one funded by Autism Speaks at the Medical University of South Carolina, and the National Survey of Children's Health (PDF – 162 KB). Dr. Insel suggested citing a recent prevalence study from the United Kingdom. In general, they should highlight private research and the private-public partnerships, he said. Mr. Robison suggested including studies about the prevalence in adults as well.
Introduction and Conclusion
Mr. Robison said that with respect to future directions, they should include language in the introduction and/or conclusion about the desire to see a more effective system of translation from the laboratory to community therapies. Despite advances in the science, the lives of individuals with autism and their families have not changed significantly. He also suggested altering the language – 'the autism community is not of one mind … passionately opposed to the goals of prevention and cure' to be more diplomatic. Ms. Crandy asked about addressing the issue of barriers to insurance coverage.
Dr. Daniels provided a schedule for finalizing the Strategic Plan over the next few weeks. This would include a deadline for comments on the current drafts, OARC addition of comments, consultation as needed with Planning Group chairs and members, review by Subcommittee Chairs and submission of drafts to the committee for consideration and finalization at the January 14, 2014 IACC meeting.
The meeting was adjourned at 1:42 p.m.
These minutes of the IACC were approved by the Committee on January 14, 2014.
I hereby certify that these minutes are accurate and complete.
Thomas Insel /s/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
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2 Pierce K, Conant D, Hazin R, Stoner R, Desmond J. Preference for geometric patterns early in life as a risk factor for autism. Arch Gen Psychiatry. 2011 Jan;68(1):101-9. doi: 10.1001/archgenpsychiatry.2010.113. Epub 2010 Sep 6. [PMID: 20819977]
3 Chung K, Deisseroth K. CLARITY for mapping the nervous system. Nat Methods. 2013 Jun;10(6):508-13. doi: 10.1038/nmeth.2481. [PMID: 23722210]