Full Committee Meeting - January 12, 2016

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Topic	Topic Description
Date:	Tuesday, January 12, 2016
Time:	9:00 a.m. to 5:00 p.m. Eastern
Place:	National Institutes of Health 31 Center Drive Building 31, C Wing, 6th Floor, Conference Room 6 Bethesda, MD 20892 Map and Directions
Webcast:	http://videocast.nih.gov
Cost:	The meeting is free and open to the public.
Agenda:	To discuss business, updates and issues related to ASD research and services activities. The committee will discuss the next update of the IACC Strategic Plan.
Access:	Medical Center Metro Station (Red Line)
Registration:	Pre-registration is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis. Online pre-registration will close at 5:00 p.m. Eastern the day before the meeting. After that time, you will need to register onsite the day of the meeting.
Conference Call Access:	Dial: 800-988-9744 Access code: 3700810
Deadlines:	Notification of intent to present oral comments: Monday, January 4, 2016 by 5:00 p.m. Eastern Submission of written/electronic statement for oral comments: Tuesday, January 5, 2016 by 5:00 p.m. Eastern Submission of written comments: Tuesday, January 5, 2016 by 5:00 p.m. Eastern Please note: Written public comments and statements accompanying oral public comments should be sent to IACCPublicInquiries@mail.nih.gov. The NIMH Office of Autism Research Coordination (OARC) anticipates that written public comments received by 5:00 p.m. ET, Tuesday, January 5, 2016 will be presented to the Committee prior to the January 12th meeting for the Committee's consideration. Any written comments received after the 5:00 p.m. EST, January 5, 2016 deadline through January 11, 2016 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. Please read the IACC Public Comment guidelines.
Contact Person:	Ms. Lina Perez Office of Autism Research Coordination National Institute of Mental Health, NIH 6001 Executive Boulevard, NSC, Room 6182A Rockville, Maryland 20852 Phone: (301) 443-6040 E-mail: IACCPublicInquiries@mail.nih.gov
Public Comment:	Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. ET on Monday, January 4, 2016, with their request to present oral comments at the meeting. Interested individuals and representatives of organizations must submit a written/electronic copy of the oral presentation/statement including a brief description of the organization represented by 5:00 p.m. ET on Tuesday, January 5, 2016. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on the number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline. In addition, any interested person may submit written public comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 5:00 p.m. ET on Tuesday, January 5, 2016. The comments should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. ET, Tuesday, January 5, 2016 will be presented to the Committee prior to the meeting for the Committee’s consideration. Any written comments received after the 5:00 p.m. EST, January 5, 2016 deadline through January 11, 2016 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. All written public comments and oral public comment statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record. Core Values: In the 2009 IACC Strategic Plan, the IACC listed the "Spirit of Collaboration" as one of its core values, stating that, "We will treat others with respect, listen to diverse views with open minds, discuss submitted public comments, and foster discussions where participants can comfortably offer opposing opinions." In keeping with this core value, the IACC and the NIMH Office of Autism Research Coordination (OARC) ask that members of the public who provide public comments or participate in meetings of the IACC also seek to treat others with respect and consideration in their communications and actions, even when discussing issues of genuine concern or disagreement.
Please Note:	Remote Access: The meeting will be open to the public through a conference call phone number and webcast live on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the webcast or conference call, please send an e-mail to HelpDeskIACC@gmail.com or by phone at 415-652-8023. Special Accommodations: Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 5 days prior to the meeting. Security: As part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Meeting schedule subject to change.

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Time	Event
9:00 a.m.	Welcome, Introductions, Roll Call and Approval of Minutes Bruce Cuthbert, Ph.D. Acting Director, NIMH and Chair, IACC Susan Daniels, Ph.D. Director, Office of Autism Research Coordination, National Institute of Mental Health (NIMH) and Executive Secretary, IACC
9:15 a.m.	Science Update Bruce Cuthbert, Ph.D. Acting Director, NIMH and Chair, IACC
9:30 a.m.	The Autism Biomarkers Consortium for Clinical Trials James C. McPartland, Ph.D. Associate Professor of Child Psychiatry and Psychology, Yale Child Study Center Director, Yale Developmental Disabilities Clinic
10:15 a.m.	National-Level Outcomes of Transition-Age Youth on the Autism Spectrum Anne Roux, M.P.H., M.A. Research Scientist, Life Course Outcomes Research Program A.J. Drexel Autism Institute, Drexel University
11:00 a.m.	Morning Break
11:15 a.m.	Committee Business Susan Daniels, Ph.D. Director, Office of Autism Research Coordination, National Institute of Mental Health (NIMH) and Executive Secretary, IACC Bruce Cuthbert, Ph.D. Acting Director, NIMH and Chair, IACC IACC Strategic Plan Update IACC Summary of Advances
12:15 p.m.	Lunch
1:15 p.m.	Oral Public Comment Session
1:45 p.m.	IACC Committee Member Discussion of Public Comments
2:15 p.m.	Research Domain Criteria (RDoC) Bruce Cuthbert, Ph.D. Acting Director, NIMH and Chair, IACC IACC Strategic Plan Update IACC Summary of Advances
2:45 p.m.	Afternoon Break
3:00 p.m.	Autism Screening Panel Daniel L. Coury, M.D. Chief, Section of Developmental and Behavioral Pediatrics Nationwide Children’s Hospital Professor of Clinical Pediatrics and Psychiatry The Ohio State University College of Medicine Karen Pierce, Ph.D. Associate Professor, Department of Neurosciences University of California, San Diego (UCSD) Co-Director, Autism Center, UCSD Diana L. Robins, Ph.D. Research Program Area Leader, Early Detection and Intervention for Autism Spectrum Disorder (ASD) Associate Professor, A.J. Drexel Autism Institute Amy M. Wetherby, Ph.D. Distinguished Research Professor, Department of Clinical Sciences, College of Medicine L.L. Schendel Professor of Communication Science & Disorders Director, Autism Institute in the College of Medicine Florida State University
4:15 p.m.	Round Robin David Amaral, Ph.D. Distinguished Professor, Department of Psychiatry & Behavioral Sciences University of California, Davis (UC) Research Director, UC Davis MIND Institute Ruth A. Etzel, M.D., Ph.D. Director, Office of Children’s Health Protection (OCHP) Environmental Protection Agency (EPA) Melissa L. Harris Acting Deputy Director Disabled and Elderly Health Programs Group Center for Medicare and CHIP Services Centers for Medicare and Medicaid Services David Mandell, Sc.D. Director, Center for Mental Health Policy and Services Research Associate Professor, Psychiatry and Pediatrics Perelman School of Medicine, University of Pennsylvania
4:45 p.m.	Closing Comments
5:00 p.m.	Adjournment

Schedule is subject to change. Meeting may end prior to or later than 5:00 PM depending on the needs of the committee. For more information on upcoming events, please see http://iacc.hhs.gov/meetings/iacc-meetings/

Next IACC Full Committee Meeting:

• Tuesday, April 19, 2016 – Building 31, NIH Campus, Bethesda, MD

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• Oral Public Comments (PDF – 183 KB)
• Written Public Comments (PDF – 366 KB)

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The Interagency Autism Coordinating Committee (IACC, also referred to as “the Committee”) convened a meeting on Tuesday, January 12, 2016, from 9:00 a.m. to 4:55 p.m. in Building 31 on the main NIH campus in Bethesda, Maryland.

In accordance with Public Law 92-463, the meeting was open to the public. Bruce Cuthbert, Ph.D., Acting Director, National Institute of Mental Health chaired the meeting.

Participants:

Bruce Cuthbert, Ph.D., Chair, IACC, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), (NIMH); David Amaral, Ph.D., University of California (UC) Davis MIND Institute; James F. Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Linda Birnbaum, Ph.D., D.A.B.T., A.T.S., National Institute of Environmental Health Sciences (NIEHS); Aaron Bishop, M.S.S.W., Administration for Community Living (ACL): Deborah Christensen, Ph.D., Centers for Disease Control and Prevention (CDC) (representing Cynthia Moore, M.D., Ph.D.); Samantha Crane, J.D., Autistic Self Advocacy Network (ASAN); Geraldine Dawson, Ph.D., Duke University; Ruth Etzel, M.D., Ph.D., Environmental Protection Agency (EPA); Tiffany Farchione, M.D., U.S. Food and Drug Administration (FDA); Amy Goodman, M.A., Autism NOW Center; Melissa Harris, Centers for Medicare & Medicaid Services (CMS); Shannon Haworth, M.A., Association of University Centers on Disabilities (AUCD); Elisabeth Kato, M.D., M.R.P., Agency for Healthcare Research and Quality (AHRQ); Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); David Mandell, Sc.D., University of Pennsylvania; Brian Parnell, M.S.W., C.S.W., Utah Department of Human Services (attended by phone); Kevin Pelphrey, Ph.D., Yale University; Edlyn Peña, Ph.D., California Lutheran University; Louis Reichardt, Ph.D., Simons Foundation Autism Research Initiative; Robert H. Ring, Ph.D., Autism Speaks; John Elder Robison, College of William and Mary; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Catherine Spong, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Julie Lounds Taylor, Ph.D., Vanderbilt University; Larry Wexler, Ed.D., U.S. Department of Education (ED); Nicole Williams, Ph.D., U.S. Department of Defense (DoD) (attended by phone)

Call to Order and Roll Call

The Interagency Autism Coordinating Committee (IACC) convened on January 12, 2016. Dr. Susan Daniels called the meeting to order at 9:00 a.m. and took roll call.

Welcome and Opening Remarks

Dr. Cuthbert, Acting Director, NIMH, and Chair, welcomed everyone present and said that he was looking forward to today’s discussion and debate. He noted that this would be the first IACC meeting for Dr. Etzel and Dr. Christensen. The draft minutes from the November 2015 meeting were approved with no comments or corrections and will be posted to the IACC website as soon as possible after the meeting.

Research Domain Criteria (RDoC)

Dr. Bruce Cuthbert provided an overview of NIMH’s Research Domain Criteria (RDoC) project, initiated in early 2009 to provide a new framework to guide mental health research. Dr. Cuthbert explained that current practices in clinical diagnostics using a symptom-based approach (such as Diagnostic and Statistical Manual of Mental Disorders [DSM]/International Classification of Diseases[ICD] categories) are in many cases not optimal for building a contemporary understanding of mental health disorders. RDoC is a focused research initiative that will help the field move toward a new classification system by using dimensional constructs related to behavior and brain systems that cut across current diagnoses. It represents a shift from approaches based purely on broad syndromes to those based upon other classifiers such as genetics, behavior, neural systems activity, and specific symptoms and the examination of the relationships among them.¹ The RDoC concept is that a deeper understanding of the psychological and biological systems related to mental illness will lead to the identification of new biomarkers and biosignatures and to the formation of more homogenous groupings for psychopathology/pathophysiology, which will spur the development of new interventions.

Dr. Cuthbert reviewed the RDoC framework and an integrative framework matrix and said that the project serves as a guideline for research and is intended to be dynamic and always under construction. He outlined some ongoing activities of RDoC, which include developing tasks and instruments, determining common data elements, and conducting data mining. The overall goal for autism, he said, especially now that we have recognized that the three traditional autism factors—alterations in social cognition and social behavior; communication impairment; and repetitive interests, behaviors, and activities—correlate weakly,² is to determine through RDoC and other tools how to best parse and understand the heterogeneity of ASD to develop better treatment and preventive interventions—in other words, to work toward the goal of precision medicine for ASD.

Dr. Dawson asked how those who work on RDoC are thinking about the ways in which the domains cluster together and what those clusters may mean. Dr. Cuthbert said that they have recognized the need to combine units of analysis when appropriate, and he also emphasized the importance of interaction and measurement. He mentioned a paper by the Joel Nigg-Damien Fair group at Oregon Health and Science University looking at ADHD using temperament dimensions that described finding three broad clusters of categories.³ One group had relatively mild ADHD and essentially normal temperament. The other two groups both had very high scores on ADHD measures but different extremes in temperament—suggesting that combining observations of classic ADHD symptoms with temperament could lead to a better understanding of each subgroup of children.

Mr. Robison asked Dr. Cuthbert how he sees RDoC in relation to the ICD classification system. Dr. Cuthbert responded that the World Health Organization (WHO) effort represents a practical clinical approach, while RDoC focuses on outlining and developing a system incorporating all the different ways mental illness can be measured and goes beyond the WHO’s functional focus. In the long-term, he said, RDoC is a way to get beyond the cultural formulations of definitions of disorders. Dr. Cuthbert also said there have been some discussions with WHO, which has expressed an interest in using RDoC to organize new research diagnostic criteria for ICD-11.

The Autism Biomarkers Consortium for Clinical Trials

James C. McPartland, Ph.D.

Dr. McPartland presented an overview of the Autism Biomarkers Consortium for Clinical Trials (ABC-CT).⁴ This multicenter research study based at Yale University is designed to hone in on areas of commonality involving social-communicative difficulties by conducting a rigorous multisite evaluation of the most promising previously studied early stage biomarkers to understand their variability and establish their validity. The study will add to the information gathered from clinical assessments and parent questionnaires by using a more objective set of tools to measure social-communicative function—EEG to measure brain function (neuroimaging-based, working with European Autism Interventions-A Multicentre Study for Developing New Medications [EU-AIMS]), eye-tracking technology to measure visual attention (working with [EU-AIMS), and a variety of lab-based measures, many of which involve video tracking or taking biospecimens. The feasibility study analysis is currently ongoing and will be followed by a five-site, naturalistic study of 4- to 11-year-old children with ASD (200) and typical development (75) (IQ 50-150) to be measured at baseline, 6 weeks, and 24 weeks. Blood draws for biospecimens will include participants and their parents, and DNA samples will be collected from children with ASD and their parents for use in future genetic studies.

The expected outcomes of this effort to validate early stage biomarkers include determining if they are sufficiently robust to be used for subject selection of school-age ASD subjects for clinical trials; for assessing the technical and biological variability of the measures in pre-school and school-age children; and for determining the utility of investigator-administered assessments of domains of social impairment as predictors of clinical outcomes. Dr. McPartland said that this public-private endeavor will include collaboration with multiple partners and stakeholders, will be administered by a steering committee, and will be run like a clinical trial—and one of the most important parts of the project involves building an infrastructure to support future clinical trials. All data and analyses, including an integrated dataset of EEG, eye-tracking, lab-based, and clinical measures from pre-school and school-age subjects and their parents, will be made publically available through NDAR for future genomic analysis.

Dr. Reichardt asked how stable the study’s measures are in children, what genetic studies may be planned, and whether auditory responses would be studied. Dr. McPartland said that one point of the study is to determine how stable the biomarkers used are in children, that genetic analysis is not part of the RFA and is not funded, and that the evidence for the inclusion of auditory paradigms is much weaker in biomarkers and it did not survive the cost-benefit analysis. In response to Dr. Birnbaum’s suggestion to take urine samples to look at environmental exposures, Dr. McPartland said that he will share this with the project’s steering committee. In response to a question from Ms. Crane about whether the epilepsy population will be included, Dr. McPartland said that people with sensory difficulties are not excluded unless those difficulties prevent them from completing the study measures—and at this time epilepsy creates a problem with EEGs, making the measures too “noisy.” Dr. Wexler asked if any of the subjects are siblings. Dr. McPartland explained that there could be siblings included if both siblings have an autism spectrum disorder or if both are typically developing, but for a typically developing subject, having a sibling with autism would be an exclusion criterion.

Dr. Birnbaum noted that the MIND Institute at UC-Davis is conducting two similar studies looking at biomarkers and asked if there has been communication between the institutions about these programs. Dr. McPartland responded that there has been no communication with those two specific studies but many of their investigators are involved in other trials. Dr. Cuthbert asked if there have been any issues with receptive language skills making it difficult for children in the study to understand the instructions. Dr. McPartland said that they designed the entire battery so that a child of four with an IQ of 50 would be able to get through all of the measures, and this is also why they conducted a feasibility study. Dr. Cuthbert said that this significant study emphasizes the movement toward the use of quantitative measures and will represent a big advance in clinical trials; once we have measures that are useful in clinical trials, he said, we can then look at their use as standard clinical measurements.

National-Level Outcomes of Transition-Age Youth on the Autism Spectrum

Anne Roux, M.P.H., M.A.

Presenting on behalf of Dr. Paul Shattuck, Director of the Life Course Outcomes Research Program at the A.J. Drexel Autism Institute, Ms. Roux began by sharing the results of the National Autism Indicators Report: Transition into Young Adulthood—2015,⁵ the inaugural publication of the National Autism Indicators Report series produced by the Life Course Outcomes Research Program. Ms. Roux said that this program focuses on the public health goal of minimizing disability and promoting quality of life through a “life course” perspective, which involves looking at the entire span of life and emphasizing the challenges related to quality of life. The Transition into Young Adulthood report, which focuses on the experiences and outcomes of young adults on the autism spectrum between high school and their 20s, is critical because 50,000 to 70,000 children with autism turn 18 and enter the adult service system every year, and even as their roles change at this point, their skills do not. Ms. Roux discussed life turning points and transitions and how they affect the relationships individuals with autism have with other people and with institutions, and she emphasized the critical importance of quality of life.

The National Longitudinal Transition Study 2 (NLTS-2) and the Survey of Pathways to Diagnosis and Services, both of which are focused on the transition years, served as data sources for the report. Insights from the analysis of the data from the NLTS-2 include the finding that young adults with autism fared worse relative to young adults with other disabilities. About four in 10 with autism were completely disconnected—that is, they had never worked or attended post-secondary education. Ms. Roux noted that one of the most important and concerning findings was that one in four of these disconnected young adults had no access to services since leaving high school. She said that the report will continue to be disseminated hand-in-hand with those who are affected by this research as well as through social media and a new website. Ms. Roux remarked that looking ahead, the most important needs are for population health research; funding for secondary data analysis; purposeful planning of data collection; and a longitudinal study. Ms. Roux concluded by providing some information about the 2016 National Autism Indicators report, which will focus on Vocational Rehabilitation (VR) services, and she reviewed preliminary numbers regarding VR and autism. She said that through the VR database, they are seeking to learn the size of the population that needs VR help and the reasons why families do not apply for it.

Ms. Singer said that she found some of the findings in these reports to be disturbing and wondered if the data had improved since the study began in 2000. Ms. Roux said that they do not know at this point but that changes in policy and insurance mandates, as two examples, should have had some impact on outcomes. She also said that the data that were collected with the NLTS 2012 have not yet been released publicly for analysis. She emphasized that having this type of information delivered in a timely manner will be critical to answering such questions. Dr. Amaral said that this study points to the value of having extensive databases, and he said that a more comprehensive strategy of linking databases, including private and government databases, is needed. Dr. Cuthbert commented that linking databases would be useful, but would only take us so far, and that going forward it would be important to use the right indicators and ask the right questions. Dr. Wexler said that Ms. Roux could coordinate this effort with his office at the Department of Education, and he offered some cautions on presenting this data because of changes since 2000/2001. Dr. Wexler also said that it is important to note the differences between services provided under the Individuals with Disability Education Act and those under VR, and he confirmed that the PROMISE grant study has a baseline almost identified, with a deadline in April, after which they will be able disaggregate by disability.

Dr. Taylor commented that changes in rates of employment and college attendance should be seen in the most recent data but probably not changes in instability. She noted that while many studies and interventions are aimed at getting people with autism into college or jobs, we still know little about enabling success and stability in those settings. Dr. Peña asked if they had looked into whether there were inequitable outcomes based on race/income/parental education. Ms. Roux said that the available data show that there is poor characterization of these variables in studies. Dr. Dawson said that this is a good time to look at how to create developmental models of ways to promote positive outcomes.

Dr. Cuthbert remarked that both of these presentations demonstrate that the need for measurement is paramount.

Committee Business

Dr. Daniels provided a brief review of IACC responsibilities under the Autism CARES Act of 2014 and said that the immediate “to do” list for the Committee includes developing two volumes of the Summary of Advances (one for 2014 and one for 2015) and creating the Strategic Plan for 2016 to cover progress made in 2014 and 2015. She said that material was sent to Committee members regarding the first part of the Summary of Advances process, and the goal will be to complete both publications before the full IACC July 2016 meeting.

The Strategic Plan

Noting that the Committee needs to finalize plans for the IACC Strategic Plan Update, Dr. Daniels provided an overview of the structure of the current Strategic Plan, which is framed around seven consumer-based questions. She then reviewed the options for the 2016 update. Option 1, which Dr. Daniels set forth for members to consider, would involve creating one document that encompasses both research and services. Each of the seven questions would address both research and services issues related to that question and would include aspirational goals, an introduction, a summary of progress made on previous Strategic Plan objectives, progress in the field, progress toward the aspirational goals, and future directions. New 2016 research and services objectives would be included, and the plan would be renamed the IACC Strategic Plan for ASD. Option 2 would be to separate the research and services plans into two documents, while retaining the current Strategic Plan structure with a new set of research objectives. The Committee would develop a separate services plan with a structure to be determined.

Mr. Robison commented that because many of the most influential people who read the Strategic Plan will read only the first several pages, those pages should contain an overarching and clear statement regarding the need for federal agencies and departments to focus on delivering tangible benefits for people with autism and their families today. This would not involve de-emphasizing the effort to address the foundational causes of ASD for the benefit of generations to come, but rather would entail rebalancing that goal with the goal of delivering the best research and services possible at this time. Dr. Daniels suggested that text on the translation of research to benefits could be included as part of either option and stated throughout the plan.

Dr. Reichardt said that he agrees with need for a focus on services but that the introduction should also emphasize the promise of future advances in the field. He commented that Congress needs assurance that past funds have been well spent and that there are advances on the horizon that continue to make this a field a worthy investment. Ms. Crane said that connecting research and tangible benefits is important to many people and that it makes more sense to discuss research and services at the same time by topic. She said she favors the format in which both are discussed together. Dr. Amaral suggested striking a balance by having research and services covered in one document that emphasizes the importance of both and that also acknowledges that finding the causes of autism will benefit generations to come.

Dr. Cuthbert summarized that the emerging consensus appears to be that the Strategic Plan should constitute one document that covers both research and services. He agreed with Mr. Robison’s suggestion that the Strategic Plan should include a statement about the need for federal agencies and departments to place a greater focus on the delivery of tangible benefits for people with autism and their families.

Strategic Plan Questions

Dr. Daniels asked members how they might want to approach the seven-question format, noting that adding more questions would not be recommended due to readability concerns and that it would be possible to collapse some questions into broader categories if needed. Dr. Dawson wondered how a restructuring of the questions might affect the ongoing portfolio analysis and other relevant analyses. Dr. Daniels said that this is an important question, because changing the number of questions would make it more difficult to compare new data with previous data collected under the seven-question framework. Dr. Pelphrey said that the current question format supports having separate documents but that to be forward looking and prescriptive, a different organization could be helpful. Dr. Daniels remarked that the question structure could still support a unified plan, because each question could include both research and services components. Mr. Robison suggested that keeping the format the same at this time would facilitate moving forward more quickly. Drs. Wexler and Dawson suggested emphasizing in Question 7 what can be done to improve collaboration and coordination across government and nongovernmental agencies/groups.

Strategic Plan Objectives

Dr. Daniels said that most of the 78 Strategic Plan objectives date to 2011 and have been accomplished or are well under way. She asked the committee whether they feel it is time for new set of Strategic Plan objectives for research and services; how many objectives should be included in the overall Strategic Plan; whether the Committee should retain the approach of having long-term and short-term objectives; whether the Committee should target a certain number of objections per question; whether the format should be similar to the current format or less specific; and whether there should be deadlines for different objectives or a common deadline. Mr. Robison said that the fact that the Committee has made substantial progress on all 78 objectives but the public does not perceive success speaks not only to the need to communicate the critical importance of what the Committee has accomplished through the 78 objectives but also to the need to create a new set of objectives to make clear what the Committee means about delivering tangible benefits to the public. Dr. Daniels said the Committee could raise the level of questions so that they are sufficiently broad to avoid missing relevant studies. Following additional Committee discussion, Dr. Daniels said that it appeared that most of the Committee agreed that they should aim for fewer objectives in the Strategic Plan overall in order to keep the Strategic Plan concise and easy to understand for Congress, agencies, and the public.

Strategic Plan Timelines

Dr. Mandell said that it would be helpful to standardize timelines for all objectives, and members discussed whether the timeline should be three or five years. Mr. Robison suggested that three years would be the most relevant timeline, while Dr. Daniels said that most strategic plans use a five-year timeline with annual updates. Drs. Amaral and Koroshetz wondered how longer-term objectives would be handled, because it will take longer than five years to solve many of these problems. Dr. Daniels commented that many plans do not place dates on the goals, and Dr. Cuthbert noted that the new NIMH Strategic Plan has long-term goals and within those goals there are strategic priorities representing the current implementation of the long-term goals. Dr. Daniels remarked that the Committee could link key goals to the next plan in 2019 generally rather than by specific objectives. Dr. Dawson said that five years makes sense because the report is shaped around funding cycles that run for five years. Dr. Cuthbert commented that the the five-year strategic window seemed to make the most sense.

Planning the Update

Dr. Daniels said that the proposal for either option is to start with seven working groups, one per question, with flexible membership, and that she will poll members regarding who wants to serve on working groups and to designate chairs. She will also poll members regarding the participation of external experts and will set a meeting schedule and structure phone calls for each group, and the Committee can then determine if an in-person full-Committee workshop (to include external experts) would be needed to discuss the document after the draft recommendations are complete. She provided some historical background about a GAO report concerning the need to prevent unnecessary duplication in federally funded autism research and to identify potential coordination opportunities among agencies. Ms. Kavanagh asked if the Committee could be more explicit about areas for which it would recommend coordination, because some subject areas would benefit from having more than one agency involved in the research.

Oral Public Comment Session

Mr. Josh Mazer referenced an article in Pediatrics on undiagnosed gut issues in children with autism as an important starting point to facilitate the process of helping these children become healthier and thus more able to access the educational curriculum. Mr. Mazer said that a number of studies show there is an unusually high rate of GI disorders in children with ASD, and he presented information from a case study in of an 11-year-old child in which gut distress was visibly reduced through use of a standard regimen to treat IBD. The patient also lost weight and experienced other positive outcomes. Mr. Mazer emphasized that making the evaluation of gut disorders in children with ASD standard medical practice will help these children get treatment and focus better in school.

Dr. Lanny Edelsohn, a neurologist, father of a 43-year-old son with a significant intellectual disability, and president of Homes For Life Foundation, spoke on the issues of capacity, community, and choice. Dr. Edelsohn said that some people with autism/other intellectual and developmental disabilities (IDDs) who lack the capacity to self-advocate should be protected, but without having their civil rights violated. He said that rules and guidance that specify that people with autism or other IDDs who need federal and state support can only live in communities consistent with the ACL’s—and now CMS’s—definition of community are based on the assumption that all people with disabilities would prefer to live in a primarily neurotypical community. He emphasized that the civil rights of people with autism/other IDDs are being violated through restrictions on their choices.

Ms. Lisa Wiederlight, executive director of SafeMinds and mother of a 15-year-old son with autism, requested urgently that the IACC establish the following workgroups to inform the IACC Strategic Plan for 2016: Environmental Factors that May Underlie the Rise in Autism Prevalence; Co-occurring Conditions with Autism; Autism and Wandering (Avonte’s Law); and Caregiver Support. She said that public policymaking and best practices in research are needed now and that these workgroups must move forward immediately in making significant, measurable, and positive changes in the lives of people with autism.

Ms. Amy Lutz, mother of a 17-year-old son with severe autism, has been involved in the debate over the type of housing that will be available to these children when they become adults and wrote "Where Should Autistic Adults Live? (The Atlantic, May 2015). Ms. Lutz cited the confusion that has resulted from guidance CMS issued two months after the agency published its Final Rule: Medicaid HCBS (home and community-based services) in January 2014 that cited farmsteads, gated communities, and clustered group homes as potentially isolating for those in the autistic and I/DD population. She asked the IACC to investigate this trend of eliminating congregate settings as an option for disabled adults and to advise the Secretary to direct CMS to issue clearer guidance re-emphasizing the importance of choice and quality outcomes in housing (in keeping with the 1999 Olmstead decision).

Mr. Mark Olson, the father of a 20-year-old daughter who is nonverbal and autistic, is president and CEO of two nonprofit organizations working in housing and community development for adults with autism and other IDDs. He expressed deep concern that some recent legislation and regulations and some efforts on the part of state and federal agencies and private advocacy organizations are limiting or eliminating options and the right to choose for adults with autism. He said that these adults have the human and civil right to live, work, play, socialize, recreate, live, learn, and worship in the settings and manner of their choice and that enabling people with disabilities to make their own choices is a true measure of diversity.

Dr. Linda Papadimitriou-Varsou spoke of the devastating effects of chronic parental denial of autism—and of the extent of its severity—on their children, who become the ultimate victims. She said that parental denial also compromises the quality of published articles and data, helping to cause conflicting, misleading, and non-reproducible results. She also remarked that there is an urgent need for more studies on denial in autism and suggested including chronic parental denial of autism in the IACC’s Strategic Plan objectives and in RDoC.

Ms. Kathryn Walsh, mother of a child on the autism spectrum, spoke about the recent disappearance and death of Jayliel Vega Batista, an autistic child, and the dangers of and the need to address wandering. Toward that end, she called for the reinstatement of the IACC Safety Subcommittee and the provision of directives for reporting and data collection. She also called for vigorous advocacy for Avonte’s Law, which she said would go a long way toward addressing the safety and recovery of wandering and eloping children with autism.

Ms. Desiree Kameka of Madison House Autism Foundation expressed concern that policy and regulation changes that are not based on research will force many people with autism who currently have HCBS waivers to leave their homes in order to continue accessing essential life supports. She said that policy and related assessment tools should be based on current research and should honor choice of home and community. Ms. Kameka remarked that research is needed to determine if supportive housing communities, farmsteads, and other forms of intentional communities are creating barriers or enhancing community access and the quality of life for people with autism.

Mr. Albert Enayati, father of a son with autism, urged the Committee to establish a workgroup to investigate co-occurring conditions to help identify promising treatments, play a key role in pinpointing the biomarkers associated with various comorbidities, assess what treatments might work, and shepherd these treatments through clinical trials. He said that the Committee should create a roadmap of testing and validated treatments because people with autism and their families cannot continue to endure the glacially slow rate of progress that has characterized autism treatment research.

IACC Committee Member Discussion of Public Comments

Ms. Haworth provided a summary of the written comments submitted to the Committee. Dr. Cuthbert said that it is important for the Committee to react to the four main comment themes: the importance of choice for adults on the spectrum; the importance of choice specifically related to housing; wandering; and co-occurring conditions.

Ms. Singer said that a number of these commenters, as well as several from the previous IACC meeting, expressed similar concerns about the violation of the civil rights of those with the most severe disabilities and the greatest needs, particularly regarding the choice of where to live. She proposed the formation of a working group focused on the impact of service delivery reforms in Medicaid and in other programs that provide ongoing support to individuals with severe autism in home and community-based services (HCBS) settings. This would include individuals who are self-injurious, who are aggressive, who are prone to wandering, and who have significant behavioral and medical comorbidities and conditions. She said that DHHS must ensure its programs meet the needs of these individuals and that the working group’s scope would be similar to that of other working groups that have advised the Secretary.

Mr. Robison remarked that it is easy for even the best-intentioned people to negatively affect the civil rights of disabled people. He cited as an example Ms. Lutz’s comment in her article "Who Decides Where Autistic Adults Live?" in The Atlantic in which she described a number of pleasant living situations for autistic people that sound like stories of young people going away to college. But the language indicates that the individual was placed somewhere, not that the individual selected a place to live. Mr. Robison said that the disabled are not non-people, and it is important when talking about people with severe disabilities to talk about what they want. Dr. Cuthbert commented that this discussion points out the connection of science to issues such as housing.

Ms. Crane said that it is important to understand that the Final Rule: Medicaid HCBS applies only to settings funded by Medicaid and that the rules are designed to be flexible. For example, there are exceptions to the food access regulation if it would be unsafe or otherwise inappropriate for an individual; however, the exception cannot be applied to others in the setting. Regarding housing, she said that there is a need to pay attention to the research base that shows that larger settings are harder to customize to individual needs and that abuse is more likely to occur in more isolated settings. Ms. Crane also said that a housing working group should include people who are familiar with the policy and the background research. She added that she supports the formation of working groups on comorbid health conditions and safety because we need to know which interventions prevent bad outcomes.

Dr. Amaral said that he was moved by the comments indicating that many with autism do not get the medical treatment they need. He remarked that we know that a high percentage of people with autism have GI problems and sleep disturbances, and although there may not be a systematic approach to these co-occurring conditions, solving GI problems in young children would result in huge benefits for families and would help address core problems later. He suggested forming a working group to explore topics around co-occurring disorders. Dr. Dawson said that the IACC previously held a workshop on co-occurring conditions that provided a comprehensive view of the state of the science, and it could be built upon. This discussion continued following the screening panel presentations.

Autism Screening Panel

David Grossman, M.D., M.P.H.

Dr. Grossman, Vice-Chairperson, U.S. Preventive Services Task Force (USPSTF) (present by phone), offered information on how the task force conducts its work and about its August 2015 draft recommendation on autism screening in young children.⁶ He explained that the 16-member group is an independent panel of experts appointed by the government that does not conduct studies but rather, through Evidence-based Practice Centers, reviews and assesses the research involving preventive services for children and adults and makes recommendations intended to help primary care clinicians and patients decide together whether a preventive service is right for a patient’s needs. These recommendations are based on a rigorous review of existing peer-reviewed evidence and the evaluation of the benefits and harms of each service. Dr. Grossman reviewed the draft recommendation process through which the task force considers the best available science and research on a topic and then posts the draft documents on the web for public comment. All comments are reviewed and considered in developing the final recommendation statement. The task force methodology is provided on the USPSTF website.

The draft recommendation statement on screening for autism in asymptomatic children is an I Statement: “The USPSTF concludes that the current evidence is insufficient to assess the balance of benefits and harms of screening for autism spectrum disorder (ASD) in children for whom no concerns of ASD have been raised by their parents or clinical provider.” Dr. Grossman emphasized that an I Statement does not apply to case finding or to the type of targeted testing used to follow up on concerns raised by parents, caregivers, or a child’s healthcare provider. Also, an I Statement is not a recommendation against screening; rather, it is a call for additional research to close specific gaps. Gaps identified from I Statements are high-priority areas and are outlined in an annual report to Congress. In addition, he said that the I Statement will not influence insurance coverage for autism screening, because the ACA mandates coverage based on the Bright Futures recommendation for screening.

Dr. Grossman pointed out that the task force found that potential harms of screening and behavioral treatments are likely low and that clinicians are advised to use their clinical judgment in areas of uncertainty. He said that trial designs are available that would help close the research gaps in this area and that important research progress has been made in the areas of treatment trials of clinically identified, older children and in the identification of accurate and valid screening tools. Dr. Grossman also emphasized that the Task Force believes children and families deserve to know what works in autism screening and that high-quality studies are needed to help fill gaps. He concluded by saying that the Task Force applauds the work the IACC partners have done to identify potential causes of ASD, tools for diagnosis, and potential treatments—and the next step is to focus research on new trials.

ASD in Clinical Practice: Considerations for the USPSTF

Daniel L. Coury, M.D.

Dr. Coury, Nationwide Children’s Hospital and the Ohio State University College of Medicine, began by saying that the USPSTF concludes that the current evidence is insufficient to assess the balance of benefits and harms of screening for ASD in children for whom no concerns have been raised by their parents or clinical providers (elsewhere described as asymptomatic).⁷ However, a potential pitfall with the “no concerns” language in the I Statement, he said, is that parental concern or lack thereof is not infallible because many parents do not recognize signs of developmental disabilities. Physician concern also is not infallible; a clinical impression is not as accurate as formal screening, and children with ASD may not display ASD behaviors during a physician visit. He also commented on the task force statement that “in general, children identified through screening rather than through case finding are likely to be younger and possibly less severely affected…It is therefore unclear whether young children with ASD detected by screening and not because of parental or teacher concern will experience similar, or any, benefit.” Most evidence, he said, suggests that children who are more mildly affected with ASD respond even more positively to treatment, and there is no evidence that children with autism who are identified through systematic screening (rather than through parental concern) are less severely impaired.

Dr. Coury said that the task force concludes that there is insufficient evidence to assess the benefits of early screening for ASD and that the balance of benefits and harms cannot be determined, but the task force does cite evidence that effective screening and interventions are available—as is evidence of better outcomes with early treatment. Also, because the Task Force points out that evidence of effective interventions is lacking for those who screen fail only (“asymptomatic” children with autism) and says that screening may not be helpful for this particular group, that the Task Force actually did make a decision based on evidence. Dr. Coury discussed some of the unintended consequences that may emerge through the misinterpretation of the wording of the I Statement, which may be taken to mean that there is no need to conduct early screening. He said that the field has evidence that children with developmental and ASD concerns are already being missed with current screening processes, and we should not exacerbate this situation.

Review of Screening Studies

Diana L. Robins, Ph.D.

Dr. Robins of the A.J. Drexel Autism Institute remarked that studies have shown that following the American Academy of Pediatrics’ recommendation for universal autism screening, the number of pediatricians conducting regular screening during well child check-ups rose from about 8 percent in 2006 to between 40 percent and 60 percent in 2012. However, if doctors, who have so many things to do during a check-up, hear the language that there is insufficient evidence to recommend early ASD-specific screening for autism (such as is found in the USPSTF I Statement), the rate of early screening for ASD will likely drop. Dr. Robins reviewed a 2015 study that looked at the effectiveness of screening for ASD in low-risk toddler samples based on 27 peer-reviewed articles published from 2000 to 2013 that concluded that the evidence supports the usefulness of ASD-specific screening of toddlers at 18 and 24 months.⁸ The paper looked at the accuracy of screening instruments used to identify children at risk for ASD in four studies considered to be of good quality in the USPSTF evidence report and summarized the measurement properties that were used. Dr. Robins pointed out that the positive predictive value (PPV) of the revised M-CHAT screen jumped markedly when all other developmental disabilities were included and that the revised M-CHAT screen has a likelihood ratio of 114.05 (with 7 or more indicating probable autism). Thus, she said that there is also adequate evidence to show that currently available screening tools detect ASD in toddlers.⁹ In addition, 50 percent to 60 percent of these children are identified by screening before parents or physicians express concern.¹⁰ Dr. Robins added that screening also has been shown to reduce disparities¹¹ and concluded by saying that research must continue so that the task force will be able to recommend early ASD-specific screening for autism and the numbers screened will increase.

Importance of Standardized Early Screening from a Biological Perspective

Karen Pierce, Ph.D.

Dr. Pierce, UC San Diego School of Medicine, began by emphasizing that treatment for ASD in children usually begins after the human brain undergoes massive and rapid changes during the first few years of life, but that screening during this period when this circuitry is developing would enable treatment to begin at a time when it would have the greatest impact on brain development. She said that although much of what we know in this area has come from animal studies, a study of 136 infants abandoned at birth in Bucharest, Romania, indicated that the sooner children left institutionalized care, the better they did. Dr. Pierce said that, in fact, compelling evidence indicates that autism actually begins in the womb in many cases—yet another reason to begin screening early.¹²

Dr. Pierce also explained that early screening helps make the essential RCT treatment research of screen-positive toddlers recommended by the USPSTF possible. She noted that early screened cohorts reveal early biomarkers of prognosis and treatment responsiveness, and she described ongoing work at the UC San Diego Autism Center of Excellence in the early tracking of ASD biomarkers. In addition, Dr. Pierce remarked that early screening is ethically required, because the disorder is already in progress, can be detected, and effective treatment is available.

Overcoming Challenges of Early Screening in Primary Care

Amy M. Wetherby, Ph.D.

Dr. Wetherby of the Autism Institute at Florida State University began her presentation on the need to improve early identification of autism and developmental disabilities by reviewing some studies about early parental-implemented interventions with young children with ASD. ^{13, 14} She said that although studies show that early intervention by parents can be effective, for a number of reasons we are failing to identify significant numbers of children with ASD/DD at an early age, and we need to improve our ability to identify who is being missed so that we can improve our methods.¹⁵ Regarding the effectiveness of parental concern, she said that although parents fairly accurately report what their children can and cannot do, parental concern is less accurate for children at younger ages, and reported concerns are not usually specific to autism. Focus groups funded by NIMH revealed that addressing this issue would require ensuring that families receive more information on developmental disorders, reducing stigma, and assuring parents that they will have access to services.¹⁶ Focus groups with professionals showed that to increase their screening efforts, they need training on the early signs of ASD and available, validated screening tools for primary care. They also want to know that post-screening intervention services will be available.¹⁷

Dr. Wetherby said that to bridge the gap between science and community practice, in 2015 the Autism Institute launched the Autism Navigator website. This site provides a collection of web-based tools and courses using video footage to illustrate effective evidence-based practice and offers a two-hour course free to the public and a seven-hour primary care training course. Two paths are provided for families. The first path provides two steps for all families—the first includes 16 Gestures by 16 Months (because it has been shown that the development of gestures at 9 to 16 months predicts language 2 years later¹⁸ and that parents need to know that children should be using 16 gestures by 16 months) and Social Communication Growth Charts. Families with a positive autism screen are invited to continue on to three additional steps. Dr. Wetherby concluded by reviewing five NIMH-funded early childhood studies that together form a research network to pool data to expand the ability to conduct further research.¹⁹ The studies will test strategies for universal screening coupled with referral to and engagement in services to determine how to achieve earlier intervention for children with ASD from birth to 2 years of age. The data will be housed in the National Database for Autism Research (NDAR) and will be available to others in the ASD research community.

Panel Discussion

Dr. Cuthbert opened the discussion by remarking that it appears that most of this evidence just presented by the panelists was available to the USPSTF when it developed its draft recommendation. Dr. Grossman said that he would like to review all the slides shown at the meeting with the Task Force work group and cross check studies to make sure that nothing was missed. He also said that it was too early to make any specific comments, but that he understands the concerns expressed and agrees that there is room for improvement in some areas. He said that one concern involves the need to follow on with people post-screening in order to better understand the tools; however, high PPVs gave them confidence in the screening tests themselves. In the end, he said, some concerns may be related to the different approaches used to reach conclusions.

Dr. Cuthbert said that he was impressed with Dr. Robins’ slide showing how positive predictive value for ASD jumping markedly (revised M-CHAT) when all other developmental disabilities were included, and he asked the panelists to comment about this overlap. Dr. Grossman said that the evidence report states that those who screened positive who did not have ASD often did have other developmental disabilities—important information for clinicians. He also said that the task force looked at autism separately instead of with other disorders, but that as better understanding is gained this approach may change.

In response to a question by a panelist about the public comments, Dr. Grossman said that about 150 comments were received and were summarized by theme. He said that the task force always modifies draft statements after receiving this feedback and that the comments are not released publically because the comment website does not indicate that the content will be made public. Dr. Pierce mentioned that there are a few new studies available that should be entered into the final determination, and Dr. Grossman asked that this information be e-mailed to him or to Dr. Kato.

Dr. Dawson said that it would be helpful if the Task Force could reduce the possibility of misinterpreting what the recommendation means for clinical practice by providing a clear statement that the evidence does not indicate that universal screening should not be conducted. Dr. Grossman said that the task force will review the report’s text regarding implications for clinical practice. He also indicated that the task force has provided information for clinicians on how to interpret I Statements on its website, but he agreed that harms of screening were scored as low and said that the Task Force is framing its conclusions on screening for ASD as a call for research.

Dr. Robins suggested that two strong RCTs should be sufficiently persuasive to recommend universal, systematic screening. Dr. Grossman said that the two trials may not be enough to constitute an evidence base—but this would depend on the quality of the trials. He said that two high-quality, large studies might be adequate but that the Task Force also looks at a number of additional factors. Dr. Cuthbert thanked Dr. Grossman and all of the panelists and said that more research and findings in this area can be expected in the near future.

Public Comment Discussion (resumed)

Ms. Singer, referencing the earlier discussion about housing that occurred following the oral public comments, asked that the Committee accept a motion to form a working group focused on the housing problems that more severely affected people with autism are encountering as a result of Olmstead enforcement and CMS’s Final Rule: Medicaid HCBS (to include people who have intellectual disabilities, self-injurious and aggressive behaviors, and complex medical conditions and those who may be nonverbal and/or be at risk for wandering). The motion was seconded, and member discussion followed. Ms. Crane said that, regarding the proposed working group, she was concerned about the way the issue was being framed, saying that any discussion should include all people with autism and not just one subgroup. Ms. Singer remarked that the issues raised in public comments were focused on the people with autism with more severe disabilities who have been left behind and are unintentionally being harmed by some Olmstead and Medicaid policies.

Melissa L. Harris provided some context for the development of the federal standards by CMS for certain HCBS settings that receive federal dollars through Medicaid. She said that the process of developing the regulations spanned four years, involved people of all ages and of a disparate range of disabilities, and employed a rigorous public comment process through which it became clear that many settings receiving HCBS funding are not livable. She explained that the regulations impose no limitations on size or on licensure, so long as the requirements of HCBS settings are met, and she said that the bottom line is that individuals need to be able to experience the community to the extent that they want to and can make their own decisions. The regulations include a five-year transition period (to 2019), and each state was asked to submit a transition plan to CMS. Modifications for individuals can be documented in a plan that is tailored to the individual and that places a high value on personal choice. Ms. Harris said that some of the regulations are misunderstood, such as the 24-hour food requirement, which was meant to ensure that if a person misses lunch, for example, he or she could get that meal at a later time. She remarked that CMS understands the settings and was not cavalier to the impact on people and is providing outreach and help through technical assistance and webinars.

Ms. Singer said that reports from the field about the experiences of those who are being affected by the regulations indicate that difficulties are indeed being encountered that could be addressed through the IACC’s collaborative/coordination function. She indicated that she felt that the working group should focus on the issues faced by those who are getting left behind by the current regulation. Ms. Crane suggested that while some who would be interested in supporting a working group on best practices in housing or research on housing, they might be reluctant to do so if the group’s discussions might lead to raising issues about the implementation of the current regulation. During continued discussion, Ms. Crane and Dr. Birnbaum indicated that it may not be appropriate to form a working group to re-determine the CMS regulatory process and that might advise the Secretary to reverse policies that have emerged from that process. It also was suggested that a working group focused on the regulations could represent a duplication of effort that would be contrary to the IACC’s charter. Member discussion turned to whether a housing working group would focus on all people with autism or mainly on those who are the most severely affected. Ms. Singer said that how these regulations affect all people with autism, including those with more severe disabilities, should be on the table. Dr. Amaral said that forming a working group on this subject is a good idea but was concerned that the charge of the group is too ambiguous and should be explored further. Dr. Pelphrey said that this discussion is evidence of the need for a working group to look at these issues.

At this point, Dr. Daniels clarified a number of issues raised during the discussion. She said that a specific charge is not needed to form a working group and that a general topic—housing—is sufficient in order for the committee to move forward with forming a working group. Also, there is no prohibition against federal IACC members voting on an action that may at some time involve providing advice to the HHS Secretary because the IACC is an independent advisory body. A quorum of members would be needed to vote on the motion to form a working group, and for an action suggested by a working group to become action of the Committee, the working group must present the action to the Committee and it must receive at least 51 percent of member votes to be approved. Dr. Daniels clarified that the mandate to avoid duplication of effort does not pertain to the formation of working groups to facilitate committee deliberation of a topic and indicated that if members believe that housing is an important topic, it would be reasonable for the Committee to consider forming a working group focused on this subject. A working group would not be capable of changing federal rules or policies, but the Committee could provide feedback to the HHS Secretary regarding stakeholder input on the issue.

A vote was taken on the motion, which was modified to be a motion to form an IACC working group on the topic of housing for people with autism—with no specific mandate or charge. With 16 affirmative votes, the motion passed. It was agreed that this working group would not begin to meet until the Strategic Plan working groups complete their efforts.

Dr. Wexler asked for a discussion of the possibility of forming a safety working group to be placed on the agenda for the next full IACC meeting in April as part of Committee business. He said that the Department of Education has posted all of its special education data online.

Closing Comments

Dr. Cuthbert concluded the meeting by noting that Dr. Amaral, who did not have the opportunity to speak during the round robin today, will do so at the next full IACC meeting. Dr. Daniels summarized next steps for members and said that regarding the Summary of Advances, she will get in touch with members with a reminder to submit nominations. She also will send e-mail to members to determine who wants to serve on and/or chair specific IACC working groups.

Adjournment

The meeting was adjourned at 4:55 p.m.

Certification

These minutes of the Interagency Autism Coordinating Committee (IACC) were approved by the Committee on April 19, 2016.

I hereby certify that this meeting summary is accurate and complete.

/Bruce Cuthbert/
Bruce Cuthbert, Ph.D.
Chair, Interagency Autism Coordinating Committee

References

¹An example of grouping by genetics is described in Stressman HA, Bernier R, Eichler EE. A genotype-first approach to defining the subtypes of a complex disease. Cell. 2014 Feb 27;156(5):872-7.p>

²London EB. Categorical diagnosis: a fatal flaw for autism research? Cell: Aging and Metabolism. 2014;37(12):683-6.

³Karalunas SL, Fair D, Musser ED, et al. Subtyping attention-deficit/hyperactivity disorder using temperament dimensions: toward biologically based nosologic criteria. JAMA Psychiatry. 2014;71(9):1015–1024.

⁴ABC-CT is supported by NIH, FNIH, the Simons Foundation Autism Research Initiative (SFARI), and the FNIH Biomarkers Consortium.

⁵Roux AM, Shattuck PT, Rast JE, et al. National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015.

⁶USPSTF Draft Recommendation Statement—Autism Spectrum Disorder in Young Children: Screening..

⁷Coury, DL. Babies, bathwater, and screening for autism spectrum disorder: comments on the USPSTF recommendations for autism spectrum disorder screening. Journal of Developmental & Behavioral Pediatrics. 2015;36:661-3.

⁸Zwaigenbaum L, Bauman ML, Fein D, et al. Early screening of autism spectrum disorder: recommendations for practice and research. Pediatrics. 2015;136;S41-S59.

⁹USPSTF Evidence Report, 2015.

¹⁰USPSTF Evidence Report, 2015, page 47

¹¹Herlihy LE, Brooks B, Dumont-Mathieu T, et al. Standardized screening facilitates timely diagnosis of autism spectrum disorders in a diverse Sample of Low-Risk Toddlers. Journal of Developmental & Behavioral Pediatrics. 2014;35(2):85-92.

¹²Nelson CA, Zeanah CH, Fox NA, et al. Cognitive recovery in socially deprived young children: The Bucharest Early Intervention Project. Science. 2007;318:1937-40.

¹³Zwaigenbaum et al. 2015.

¹⁴Wetherby AM, Guthrie W, Woods J, et al. Parent-implemented social intervention for toddlers with autism: an RCT. Pediatrics. 2014;134(6):1084-93.

¹⁵31st Annual Report to Congress, US DOE OSER, 2012.

¹⁶Wetherby AM, et al. Oral presentation at DEC conference, Atlanta, GA, Mobilizing Community Systems to Tackle Challenges of Early Detection of ASD, 2015.

¹⁷Ibid.

¹⁸Caselli MC, Rinaldi P, Stefanini S, et al. Early action and gesture "vocabulary" and its relation with word comprehension and production. Child Development. 2012;83(2):526-42; Rowe ML, Goldin-Meadow S. Differences in early gesture explain SES disparities in child vocabulary size at school entry. Science. 2009;323:951-3; Watt N, Wetherby A, Shumway S. Prelinguistic predictors of language outcome at 3 years of age. J Speech Lang Hear Res. 2006;49(6):1224-37.

¹⁹Carter and Sheldrick, Addressing Systemic Health Disparities in Early ASD Identification and Treatment; Feinberg, Early Identification and Service Linkage for Urban Children with Autism; Pierce, Detection of ASD at the 1st Birthday as Standard of Care: The Get SET Early Model; Stone, A Screen-Refer-Treat (SRT) Model to Promote Earlier Access to ASD Intervention; Wetherby, Klim, Lord, and Newschaffer, Mobilizing Community Systems to Engage Families in Early ASD Detection and Services.

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Materials related to speaker presentations:

• Science Update, Bruce Cuthbert, Ph.D.
• NIMH Autism Biomarkers Consortium Press Release  
• Autism Biomarkers Consortium Website  
• Foundation for NIH Autism Biomarkers Consortium Web Page  
• National Autism Indicators Report: Transition Into Young Adulthood  
• United States Preventive Services Task Force Draft Recommendations Regarding Autism Screening  
• Coury, DL. Babies, Bathwater, and Screening for Autism Spectrum Disorder: Comments on the USPSTF Recommendations for Autism Spectrum Disorder Screening. Journal of Developmental & Behavioral Pediatrics 2015 Nov-Dec;36(9):661-3 2015 Nov-Dec;36(9):661-3  
• Robins, DL, Adamson LB, Barton M, Connell JE, Dumont-Mathieu T, Dworkin P, Fein D, Greenstein MA, Hsu HW, Kerns C, Newschaffer C, Plumb J, Shattuck P, Turchi R, Vivanti, G. Universal Autism Screening for Toddlers: Recommendations at Odds. Journal of Autism and Developmental Disorders, 2016 In Press (PDF – 114 KB)

Materials related to IACC Business:

• 2013 IACC Strategic Plan Update
• 2013 IACC Summary of Advances
• National Plan to Address Alzheimer’s Disease 2014 Update  
• 2015 Draft National Pain Strategy (PDF 2 MB)  
• 2012 National Strategy for Suicide Prevention  
• NIMH Strategic Plan (PDF 9 MB)  

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• IACC Meeting Full Slide Set (PDF 10 MB)
• Science Update Slides (PDF 338 KB)
  • The January 2016 IACC Science Updates were not presented at the IACC meeting due to schedule changes, but the slides are available via the link above.

Presentation	Presenter(s)
Research Domain Criteria (RDoC): An Overview (PDF – 952 KB)	Bruce Cuthbert, Ph.D., Acting Director, National Institute of Mental Health Chair, Interagency Autism Coordinating Committee
The Autism Biomarkers Consortium for Clinical Trials (PDF – 1 MB)	James C. McPartland, Ph.D., Associate Professor of Child Psychiatry and Psychology, Yale Child Study Center, Director, Yale Developmental Disabilities Clinic
National-Level Outcomes of Transition-Age Youth on the Autism Spectrum (PDF – 2 MB)	Anne Roux M.P.H., M.A., Research Scientist, Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University
IACC Committee Business (PDF – 176 KB)	Susan Daniels, Ph.D., Director, Office of Autism Research Coordination, National Institute of Mental Health (NIMH) and Executive Secretary, IACC
Devastating Effects of Chronic Parental Denial in Autism (PDF – 212 KB)	Linda Varsou-Papadimitriou, Ph.D, M.P.H., (Public Comment)
Screening for Autism Spectrum Disorder in Young Children (PDF – 323 KB)	David Grossman, M.D., M.P.H., Vice-Chairperson, U.S. Preventive Services Task Force, Senior Investigator, Group Health Research Institute. Medical Director, Population Health Strategy, Pediatrician, Group Health
ASD Screening in Clinical Practice: Considerations for the USPSTF (PDF – 580 KB)	Daniel L. Coury, M.D., Chief, Section of Developmental and Behavioral Pediatrics, Nationwide Children’s Hospital, Professor of Clinical Pediatrics and Psychiatry, The Ohio State University College of Medicine
Review of Screening Studies (PDF – 211 KB)	Diana L. Robins, Ph.D., Research Program Area Leader, Early Detection and Intervention for Autism Spectrum Disorder (ASD), Associate Professor, A.J. Drexel Autism Institute
The Importance of Standardized Early Screening from a Biological and Basic Science Perspective (PDF – 1 MB)	Karen Pierce, Ph.D., Associate Professor, Department of Neurosciences, University of California, San Diego (UCSD), Co-Director, Autism Center, UCSD
Overcoming Challenges of Early Screening for Autism in Primary Care (PDF – 3 MB	Amy M. Wetherby, Ph.D., Distinguished Research Professor, Department of Clinical Sciences, College of Medicine, L.L. Schendel Professor of Communication Science & Disorders, Director, Autism Institute in the College of Medicine, Florida State University

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Daniel L. Coury, M.D.

Daniel Coury, MD is Professor of Pediatrics and Psychiatry in the College of Medicine at The Ohio State University. He also serves as chief of the Section of Developmental and Behavioral Pediatrics for Nationwide Children’s Hospital in Columbus, Ohio. He currently serves on the autism guidelines committee of the American Academy of Neurology; and is a liaison to the Autism Sub-Committee of the American Academy of Pediatrics. He also serves as Medical Director for the Autism Speaks Autism Treatment Network (AS-ATN), a network of hospitals and physicians dedicated to developing a model of comprehensive medical care for children and adolescents with autism. He also serves as the Medical Director for the HRSA funded Autism Intervention Research Network on Physical Health (AIR-P).

David Grossman, M.D., M.P.H.

David C. Grossman, M.D., M.P.H., is senior investigator at the Group Health Research Institute and medical director for population health strategy and a practicing pediatrician at Group Health in Seattle, WA. He leads a group of scientists and practitioners who research the design, promotion, delivery, and evaluation of population care services. In addition, Dr. Grossman is a professor of health services and adjunct professor of pediatrics at the University of Washington Schools of Public Health and Medicine. Prior to joining Group Health in 2004, Dr. Grossman served as director of the Harborview Injury Prevention and Research Center at the University of Washington. Dr. Grossman earned his B.S. in chemistry from the University of California, Berkeley. He completed medical school at the University of California, Los Angeles and earned his M.P.H. from the University of Washington School of Public Health and Community Medicine. He completed an internship and residency in pediatrics at the University of North Carolina at Chapel Hill, and a postgraduate fellowship in the University of Washington's Robert Wood Johnson Clinical Scholars Program. Before his fellowship, Dr. Grossman served as a commissioned officer in the U.S. Public Health Service for 3 years with the Indian Health Service in Fort Defiance, Arizona. Dr. Grossman previously served as a member of the U.S. Preventive Services Task Force from January 2008 to December 2013, prior to his appointment as vice chair of the Task Force in March 2015.

James C. McPartland, Ph.D.

James C. McPartland, Ph.D., is an Associate Professor of Child Psychiatry and Psychology at the Yale Child Study Center. He is a licensed child psychologist and Director of the Yale Developmental Disabilities Clinic. He is Director of Undergraduate Studies at the Child Study Center and teaches an undergraduate seminar on autism spectrum disorder. Dr. McPartland’s program of research investigates the brain bases of neurodevelopmental disabilities to develop biologically-based tools for detection and treatment. He is the Principal Investigator of the Autism Biomarkers Consortium for Clinical Trials, a nationwide effort to identify biomarkers to support intervention research in ASD. His research has been supported by NIH (NIMH, NICHD, NINDS; U19, R01, R21, R03, K23), NARSAD, the Autism Science Foundation, the Waterloo Foundation, Autism Speaks, the Patterson Trust, and the Simons Foundation, and his contributions to the field have been recognized by the University of Washington’s Bolles and Gatzert Child Welfare Fellowships, a Clinical and Translational Sciences Scholar Award from the Yale Center for Clinical Investigation, a Behavioral Science Track Award for Rapid Transition and a Patient-Oriented Research Career Development Award from the National Institutes of Mental Health, the NARSAD Atherton Young Investigator Award, the International Society for Autism Research Young Investigator Award, the Patterson Trust Clinical Research Award, the Brain & Behavior Research Foundation Klerman Prize, and the American Psychological Association Division of Intellectual and Developmental Disabilities Sara S. Sparrow Early Career Research Award. Dr. McPartland has published 5 books and 80 scholarly works on autism and related topics. He is on the editorial board of the Journal of Mental Health Research in Intellectual Disability and is an Associate Editor for the Journal of Autism and Developmental Disorders. He has served on the Executive Committee of the American Psychological Association’s Division of Intellectual and Developmental Disabilities and currently serves on the board of the International Society for Autism Research.

Karen Pierce, Ph.D.

Dr. Pierce has been studying autism for the past 20 years and is a leading expert on the neural and clinical phenotype of ASD. Her research spans a range of topics from early screening and detection to eye tracking and functional magnetic resonance imaging (fMRI). Her early detection approach that focuses on mobilizing pediatricians, called the 1-Year Well-Baby Check-Up Approach, has identified several hundred ASD toddlers around the 1st birthday and has resulted in rapid treatment access. Using eye tracking and brain imaging technology within this early-detected population, Dr. Pierce’s work has revealed unusual patterns of eye gaze and brain activity that helps elucidate the behavioral and biological heterogeneity of ASD. Dr. Pierce has been invited as a keynote speaker on the topic of autism at both a national and international conferences. Her work is published in high-impact journals and has been highlighted in the public media including CNN, The Wall Street Journal, and Time Magazine. Her research is funded by both NIH as well as private organizations such as the Simons Foundation. She has been honored by several awards and recognitions including US Department of Health and Human Services IACC Top 20 Research Paper, Autism Speaks Top 10 Research Paper, and the San Diego Health Hero Award.

Diana L. Robins, Ph.D.

Diana L. Robins, Ph.D. is currently an associate professor at the AJ Drexel Autism Institute, where she also leads the Program Area in Early Detection and Intervention for ASD. Much of her work has centered around developing, validating, and refining a widely used screening tool for ASD, the Modified Checklist for Autism in Toddlers. The original M-CHAT paper has been cited more than 900 times, and the validation of the recent revision, M-CHAT-R with Follow-Up (M-CHAT-R/F), demonstrated that the 2-stage screening questionnaire detects many cases of autism, and children in the study were diagnosed about two years younger than the national median, which improves access to ASD-specific early intervention. Dr. Robins’ research has been funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Autism Speaks, and the National Institute of Mental Health, and she has collaborated on projects funded by the Department of Defense and the Templeton Foundation. Her work has been published in leading pediatric and autism journals. Dr. Robins received her doctorate in Clinical Psychology, with an emphasis in Clinical Neuropsychology from the University of Connecticut. Following her APA-approved internship at the University of Florida Health Sciences Center, Dr. Robins completed a 2-year postdoctoral fellowship at the Yale University School of Medicine Child Study Center. She then spent 10 years on the faculty at Georgia State University, with a joint appointment in the Department of Psychology and the Neuroscience Institute. Dr. Robins was among the faculty on Georgia’s first Leadership and Education in Neurodevelopmental Disorders (LEND) program, housed at Georgia State University.

Anne Roux, M.P.H., M.A.

Anne Roux is a Research Scientist at A.J. Drexel Autism Institute’s Life Course Outcomes Research Program in Philadelphia and leads the production of the National Autism Indicators Report series. Anne received a master’s degree in public health from Washington University in St. Louis with an emphasis in health communication and participated in a NIMH pre-doctoral fellowship in social work. Her research interests include postsecondary outcomes of adults on the autism spectrum and autism screening for underserved populations. She also holds a master’s degree in speech-language pathology from the University of Kansas and has 15 years of clinical experience in autism early intervention. During her tenure as executive director of Missouri Families for Effective Autism Treatment, Anne participated in state-level legislative advocacy, system transformation initiatives, and policymaking activities including an appointment to the Missouri Autism Commission. She currently serves on the Health Care Transitions Research Network for Autism Spectrum Disorders, the Autistic Global Initiative’s advisory committee, and the Autism Treatment Network’s AIR-P health disparities and family advisory committees.

Amy M. Wetherby, Ph.D.

Amy M. Wetherby, Ph.D., CCC-SLP, is a Distinguished Research Professor in the Department of Clinical Sciences and Director of the Autism Institute in the College of Medicine and the Laurel Schendel Professor of Communication Disorders at Florida State University. She has over 35 years of clinical experience and is a Fellow of the American Speech-Language-Hearing Association. Dr. Wetherby has published extensively and presents regularly at national conventions on early detection and early intervention for children with autism spectrum disorders (ASD). She is the Project Co-Director of Doctoral Training in Research, Autism, and Interdisciplinary Leadership (TRAIL) funded by the U.S. Department of Education and the Executive Director of the Florida State University Center for Autism and Related Disabilities. She served on the National Academy of Sciences Committee for Educational Interventions for Children with Autism and on the DSM-5 Neurodevelopmental Workgroup of the American Psychiatric Association. She is PI of a randomized controlled trial that is part of the Emory Autism Center of Excellence (PI: Ami Klin) to test the efficacy of the Early Social Interaction model for parents of infants with early signs of ASD at 12 months of age. She is Project Director of the FIRST WORDS® Project that conducts longitudinal research on screening tools for autism and communication disorders and developmental trajectories in large population-based samples of children 9-24 months of age funded by the US DOE/OSEP, NIDCD, NICHD, and CDC. She is directing a longitudinal study to validate a new automated screening tool, the "Smart" Early Screening for Autism and Communication Disorder (ESAC), funded by NICHD. She directed a foundational study of early social communication markers of ASD in 18-48 month old children from diverse cultures in two countries—Latino immigrants in Southeastern US and the KwaZulu-Natal province of South Africa funded by NIDCD. The overarching goal of the collective efforts of Dr. Wetherby’s research is to build the capacity of healthcare systems to improve early detection and provide access to cost-efficient early intervention that is feasible for far-reaching community implementation.

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