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IACC Full Committee Meeting - April 9, 2013

meeting videocast Webcast

meeting announcement Announcement
Topic Topic Description
Date: Tuesday, April 9, 2013
Time: 9:00 a.m. to 5:30 p.m. Eastern
Agenda: The committee will discuss autism related issues and will host activities in recognition of Autism Awareness Month and World Autism Awareness Day.
Place: National Institute of Mental Health
The Neuroscience Center
6001 Executive Boulevard, Conference Rooms C and D
Rockville, Maryland 20852
Cost: The meeting is free and open to the public.
Webcast Live:
Conference Call: Dial: (888) 843-7184
Access code: 5279679
Materials: Meeting materials
Registration: Pre-registration Site is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first serve basis.
Access: Metro accessible: White Flint Metro Station - Red Line
Deadlines: Notification of intent to present oral comments: Monday, April 1st by 5:00p.m. Eastern - Deadline extended
Submission of written/electronic statement for oral comments: Wednesday, April 3rd by 5:00p.m. Eastern - Deadline extended
Submission of written comments: Wednesday, April 3rd by 5:00p.m. Eastern - Deadline extended
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

Please Note:
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. Eastern on Monday, April 1, 2013 (Deadline extended), 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. Eastern on Wednesday, April 3, 2013 (Deadline extended). Statements submitted will become a part of the public record. Please do not include confidential or personal information, including photos, that you do not wish to make public. 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 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 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. Eastern on Wednesday, April 3, 2013 (Deadline extended). The comments should include the name, and when applicable, the business or professional affiliation of the interested person. All written 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. Please do not include confidential or personal information, including photos, that you do not wish to make public.

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 or by phone at (301) 339-3840.

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.

As a 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.

Schedule is subject to change.

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meeting agenda Agenda

The registration desk opens at 8:00 a.m. Eastern for members of the public attending in person, and the meeting will also be available to the public by live videocast and conference call. The materials for the meeting can be found here.

Time Event
9:00 a.m. Welcome, Roll Call and Approval of Minutes

Thomas Insel, M.D.
Director, National Institute of Mental Health (NIMH)
Chair, IACC

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC
9:05 a.m. Update from Administration for Children and Families

Linda K. Smith
Deputy Assistant Secretary and Inter-Departmental Liaison for Early Childhood Development
Administration for Children and Families
9:15 a.m. Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011-2012

Stephen Blumberg, Ph.D.
Acting Associate Director for Science
Division of Health Interview Statistics
National Center for Health Statistics
Centers for Disease Control and Prevention

Michael D. Kogan, Ph.D.
Director, Office of Epidemiology and Research
Health Resources and Services Administration
9:45 a.m. Project SEARCH at the National Institutes of Health

Maureen E. Gormley, M.P.H., M.A., R.N.
Chief Operating Officer, NIH Clinical Center
10:15 a.m. Break
10:30 a.m. Panel on Minimally Verbal Children with Autism

10:30 a.m. - NIH Autism Centers of Excellence Update

Alice Kau, Ph.D.
Program Director, Autism Spectrum Disorders
Eunice Kennedy Shriver National Institute of Child Health and Human Development

10:40 a.m. - NIH Workshop on Nonverbal School-Aged Children with Autism

Connie Kasari, Ph.D.
Professor of Psychological Studies in Education and Psychiatry
University of California, Los Angeles

Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program
Boston University

10:55 a.m. - NIH Workshop on Nonverbal School-Aged Children with Autism

Connie Kasari, Ph.D.
Professor of Psychological Studies in Education and Psychiatry
University of California, Los Angeles

11:20 a.m. - Minimally Verbal ASD: From Basic Mechanisms to Innovative Interventions

Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program
Boston University

11:45 a.m. - Q & A With Committee
12:00 p.m. Autism NOW Website

Katherine Cargill-Willis
Program Specialist, Administration on Intellectual and Developmental Disabilities
Administration for Community Living

Amy Goodman, Kevin Wenzel, and Karen Wolf-Branigin
The Arc
12:20 p.m. Lunch
1:00 p.m. Oral Public Comment Session
1:30 p.m. IACC Member Discussion of Public Comments
2:00 p.m. IACC Business

2:00 p.m. - Science Update

Thomas Insel, M.D.
Director, NIMH
Chair, IACC

2:10 p.m. - Introductory Comments and OARC/IACC Update

Thomas Insel, M.D.
Director, NIMH
Chair, IACC

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC

2:25 p.m. - Update from Subcommittee for Basic and Translational Research
  • Question 1 Planning Group
  • DSM-5 Planning Group
2:45 p.m. - Update from Subcommittee for Services Research and Policy
3:00 p.m. Break
3:15 p.m. Committee Discussion
5:20 p.m. Wrap-Up
5:30 p.m. Adjournment

Next IACC Full Committee Meeting:

  • July 9, 2013 – National Institutes of Health, 31 Center Drive/Building 31, C Wing, 6th Floor, Room 10, Bethesda, Maryland 20892

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meeting minutes Minutes

The Interagency Autism Coordinating Committee (IACC, also referred to as "the Committee") convened a meeting on Tuesday, April 9, 2013, from 9:00 a.m. to 5:30 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Thomas R. Insel, M.D., Director, National Institute of Mental Health, chaired the meeting.


Thomas Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Idil Abdull, Somali American Autism Foundation; James Ball, Ed.D., BCBA-D, JB Autism Consulting, and Autism Society; Anshu Batra, M.D., Our Special Kids; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); 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.); Noah Britton, M.A., Bunker Hill Community College; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey, Ph.D., Left Brain Right Brain; Dennis Choi, M.D., Ph.D., Stony Brook University; Jose Cordero, M.D., M.P.H., University of Puerto Rico; Jan M. Crandy, Nevada State Autism Treatment Assistance Program; Geraldine Dawson, Ph.D., Autism Speaks; 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); Donna Kimbark, Ph.D., U.S. Department of Defense (DoD); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (for Linda Birnbaum, Ph.D.); David Mandell, Sc.D., University of Pennsylvania; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Scott Michael Robertson, 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); Linda Smith, Deputy Assistant Secretary and Inter-Departmental Liaison for Early Childhood Development Administration for Children and Families (ACF); Larry Wexler, Ed.D., U.S. Department of Education (ED)

Roll Call and Opening Remarks

The Interagency Autism Coordinating Committee (IACC) convened April 9, 2013. Dr. Thomas Insel called the meeting to order at 9:03 a.m. and Dr. Susan Daniels took attendance.

Autism Awareness Month

Dr. Insel started the meeting with an overview of several events occurring in April, which is National Autism Awareness Month. He announced the release of the 2012 IACC Summary of Advances in Autism Spectrum Disorder Research on April 9th.1 This document summarizes each of the articles included in the Committee's list of the 20 most significant research advances of 2012. Dr. Insel also alerted committee members to the presidential proclamation2 issued in recognition of World Autism Awareness Day on April 2nd, as well as statements from the U.S. Department of Health and Human Services (HHS) Secretary Kathleen Sebelius,3 and the United Nations Secretary General.4

Dr. Insel informed the Committee about a National Institute of Mental Health (NIMH) Autism Awareness Event on April 17, 2013 on the National Institutes of Health (NIH) campus in Bethesda, Maryland. Committee member John Robison was invited to give a public lecture5 on the need to develop tools and therapies to reduce disability and suffering associated with ASD, while also respecting the unique contribution that individuals with ASD make to society. The committee and listening public were invited to view the lecture via a public webcast.6

Introduction of New Committee Member

Linda K. SmithDeputy Assistant Secretary and Inter-Departmental Liaison for Early Childhood Development, Administration for Children and Families (ACF), Department of Health and Human Services

Dr. Insel introduced new committee member Linda K. Smith, who is the Deputy Assistant Secretary and Inter-Departmental Liaison for Early Childhood Development for the Administration for Children and Families (ACF). Deputy Assistant Secretary. Smith thanked the Committee for allowing the ACF to participate. She said that she is responsible for the Head Start and Early Head Start programs. The Head Start program is a federal program that promotes the school readiness of children ages birth to age 5 from low-income families by enhancing their cognitive, social and emotional development. The Early Head Start program is a federally-funded community-based program for low-income families with infants and toddlers and pregnant women. Its aim is to promote healthy prenatal outcomes for pregnant women, enhance the development of very young children, and promote healthy family functioning. Ms. Smith said that she is also responsible for the Child Care and Development Fund, the Race to the Top Early Learning Challenge, and the Tribal Home Visit program. The Race to the Top Early Learning Challenge is a grant competition focusing on improving early learning and development programs for young children The Tribal Home Visit Program provides grants to Tribes, Tribal Organizations, and Urban Indian Organizations to develop home visiting programs in native communities. Deputy Assistant Secretary Smith noted that her background is in childcare. She said that she knows firsthand that childcare providers are the frontline for identifying children with special needs, but have few tools.

Deputy Assistant Secretary Smith said that ACF is interested in representing the childcare workforce on the IACC. She said that on a daily basis there are close to 12 million children younger than 5 years in non-parental childcare in the United States. Another million children are in the Head Start program. She said that these childcare workers have very little support and few services are provided to them. Deputy Assistant Secretary Smith's interest is in providing these workers with better tools for caring for children with ASD. She then introduced her two assistants, Ms. Shantel Meek and Ms. Katie Beckmann.

Deputy Assistant Secretary Smith noted that ACF is working on a toolkit in conjunction with the Centers for Disease Control and Prevention (CDC) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD. She said that this toolkit will be sent to childcare providers, Head Start providers, and the child care community in general. This toolkit includes a list of tips for working with children with autism spectrum disorders (ASD). Deputy Assistant Secretary Smith said that the ACF is working to help early childcare providers understand developmental screening and how to select the appropriate screening instruments, an effort that involves the launch of an early screening campaign. In addition, Deputy Assistant Secretary Smith said that ACF will be developing a screening guide for early childcare providers, which will include a list of recommended screening tools. She said that ACF also is working to provide early childcare workers with these instruments. Lastly, ACF is working with a small pilot group to validate an appropriate screening tool for use on Tribal Reservations, Deputy Assistant Secretary Smith said.

Questions from the Committee

Dr. Insel noted that committee members also had an interest in screening tools. He welcomed Deputy Assistant Secretary Smith's expertise. Dr. Jose Cordero asked Deputy Assistant Secretary Smith to discuss whether there are any screening tools in other languages. Deputy Assistant Secretary Smith explained that ACF is in the process of developing such instruments but that none are available yet. She said that ACF is very aware of the need for these instruments. Dr. Anshu Batra emphasized the need for early screening tools. She asked Deputy Assistant Secretary Smith to identify the screening instruments that ACF was evaluating. Deputy Assistant Secretary Smith said that ACF is currently evaluating a number of screening tools.

Ms. Idil Abdull asked how ACF ensures that childcare and Head Start professionals are trained to recognize the signs of autism and to help parents get early intervention for their children. Deputy Assistant Secretary Smith said that one of the items included in the toolkit will help childcare professionals to learn and recognize the signs of ASD. She said that ACF is interested in partnering with other agencies in order to avoid duplication of effort. She noted that the training of Head Start professionals is ongoing. However, she said that childcare is very diverse and funding is limited to the form of block grants, which makes it difficult for ACF to directly influence childcare training. She said that ACF works with individual state agencies to disseminate this information to childcare providers. Dr. Batra suggested offering information about the recognition of the early signs of ASD through continuing medical education (CME). Dr. Insel observed that one of the Committee's strengths is coordinating efforts across agencies.

Changes in Prevalence Estimates of Parent-Reported ASD in School-Age Children

Stephen BlumbergPh.D., Associate Director, Science in the Division of Health Interview Statistics, National Center for Health Studies (NCHS),Centers for Disease Control and Prevention (CDC)Michael KoganPh.D., Director, Office of Epidemiology and Research, Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA)

Dr. Stephen Blumberg and Dr. Michael Kogan presented a new report7 on the prevalence estimates of parent-reported ASD in school-age children. Dr. Kogan started with a presentation on the background on the National Survey of Children's Health. HRSA's Maternal and Child Health Bureau began to collect data on children's health with the 2001 National Survey of Children with Special Health Care Needs (NS-CSHCN), he said. This was a collaborative effort with the CDC's National Center for Health Statistics. He said that the National Survey of Children's Health (NSCH) followed in 2003. Since then, each of survey has been conducted every 4 years—the NS-CSHCN in 2001, 2005-2006, 2009-2010 and the NSCH in 2003, 2007, and 2011-2012.

Dr. Kogan said that the surveys were initiated to provide national- and state-based estimates on the health of children, their families, and their communities. Computer-assisted telephone interviews were used for these surveys, involving random digit-dial samples for all 50 states and the District of Columbia. In addition to landlines, he noted that cell phone-only households were included in the 2011-2012 data collection. Households were screened for children younger than 18 years. He pointed out that the NSCH sample size has varied between 91,000 and 102,000 (about 1,800-2,000 per state).

Dr. Blumberg described how autism prevalence was assessed by the survey. Researchers included two questions to assess autism prevalence: (1) has a doctor or other health professional told you that your child had autism, Asperger disorder, pervasive developmental delay, or other autism spectrum disorder and (2) if yes, does your child currently have autism or autism spectrum disorder. Children were considered to have ASD if parents answered "yes" to both questions. The same questions were asked in 2007 and 2011-2012. Dr. Blumberg then presented the results of the study for children 6-17 years. He noted that new data from 2011-2012 were compared with data from the 2007 survey.

Dr. Blumberg said that it was estimated that nationally 1 in 50 school-aged children have ASD, or 2% of children aged 6-17. This percentage rose from 1.16% in 2007. Based on current census estimates, he said that this translates to 1 million school-aged children in the United States, who would be reported by their parents to have ASD. In comparison, Dr. Blumberg noted that 1 in 88 (1.13%) children has ASD, based on data from the CDC's Autism and Developmental Disabilities Monitoring (ADDM) network. This network, supported by CDC, estimates the prevalence of ASD and other developmental disabilities among children in different areas of the United States. Dr. Blumberg noted that while many people have asked which set of numbers is correct, data from the NSCH are not directly comparable to the ADDM network data for many reasons. He pointed out that different methodologies were used to collect data for each dataset: telephone survey for the NSCH study vs. medical and educational record review for the ADDM data. In addition, while data from the NSCH are from 2011-2012, data from ADDM are from 2008. Also, the NSCH included children aged 6-17 years, while the ADDM network monitors 8-year-olds. In addition, he said that the NSCH was conducted nationally, while the ADDM network includes 14 discrete data collection sites. Therefore, the two datasets are quite different and it is not possible to meaningfully compare the estimates, Dr. Blumberg said. However, he said that if pressed to compare the two, the 1.16% estimate from the 2011-2012 NSCH was almost identical to the ADDM network estimate of 1.13% in 2008.

Dr. Blumberg said that given these reasons, the authors of the NSCH estimate preferred to focus on the increase in prevalence within the same data systems—the 2007 and 2011-2012 NSCH surveys He said that it remains true that the prevalence of ASD is greater for boys than for girls. Dr. Blumberg observed that the increase in prevalence between the two studies was seen almost exclusively for boys. In 2011-2012, 3.23% of boys aged 6-17 had parent-reported ASD (1 in 31 boys), which is up from 1.80% in 2007. In addition, boys were four times more likely to have ASD than girls in 2011-2012. Dr. Blumberg said that in 2007, adolescents were half as likely as younger children to have ASD. However, he noted that the differences between age groups were much smaller in 2011-2012 and were not statistically significant. In addition, prevalence increased in every age group, compared with estimates from 2007. However, these differences also were not statistically significant.

Dr. Blumberg offered two potential explanations for the observed increase in prevalence: a sudden rise in ASD symptoms among school-aged children or recent diagnoses of ASD were of children with previously unrecognized ASD. However, given findings that symptoms of ASD may be picked up early in children, the authors discounted that there had been an increase in symptoms between 2007 and 2011-2012. Dr. Blumberg said that the authors concluded that most of the increased prevalence was the result of recent diagnoses of children with previously unrecognized ASD. He stated that this conclusion is bolstered by the fact that more than half of the children with recent diagnoses were classified by their parents as having mild ASD and very few were classified as having severe ASD. There was strong consistency of the severity of ASD for children diagnosed in or before 2007 (children who could have been reported in both time periods) for both the 2007 and the 2011-2012 surveys. The NSCH report is available online. (PDF – 162 KB)

Questions from the Committee

Mr. John Robison asked if the survey captured prevalence for educational autism, based on parent report and based on school services. He pointed out that in contrast, the ADDM survey is based on medical records, and therefore determines the prevalence of medical autism. He noted that the two surveys had very different prevalence rates. Dr. Blumberg responded that it may not be fair to make this conclusion, given that the ADDM survey is based on expert review of medical and educational records. He said that the ADDM survey should detect both types of diagnoses. Mr. Robison rephrased his question to inquire whether the difference between educational and medical rates of autism is known. If so, he said, it might be possible to compare the two surveys intelligently in order to draw a conclusion. Dr. Blumberg said that the data from the NSCH survey does not lend itself to that type of comparison because the source of the ASD diagnosis (reported by parents) is unknown. Dr. Blumberg pointed out that a broad survey like the NSCH makes it difficult to drill down for more detailed information about autism. He added that one of the advantages of the ADDM network is that it's more focused sample—8-year-olds at 14 data collection sites—allows for the analysis of the data in greater detail.

Dr. Coleen Boyle noted that, the NSCH survey information represents what families are experiencing, while the ADDM network data represents what is happening in the community from an administrative perspective. This means that the two are not directly comparable, she said. Mr. Scott Michael Robertson asked whether it would be feasible to determine autism prevalence among adults through another community survey, in order to have lifespan data on autism. Dr. Blumberg responded that the National Center for Health Statistics does conduct a number of surveys on the health of adults, though to his knowledge, none have looked at the prevalence of autism among adults.

Ms. Alison Singer pointed out that there are known limitations to studies based on parent report and also studies based on telephone surveys. She asked how those limitations were accounted for in the analysis of the data. Dr. Blumberg acknowledged these limitations and the potential effect on the response rate. Dr. Insel asked Dr. Blumberg what the response rate was for the NSCH survey. Dr. Blumberg said that this is a complex question. However, if pressed to give one number, he would estimate the overall response rate to be 23%. He cautioned that this was a conservative estimate because it took into account all of the telephone numbers with no answer. In addition, the researchers believed that and increasing number of phone numbers are not assigned to households, but to devices such as the on-board navigation system in a car. In cases when they reached a parent, the interview completion rate was 54% for landlines and approximately 42% for cell phones, he said. While Dr. Blumberg acknowledged the limits of telephone surveys, he pointed out that telephone surveys generally get more honest responses than face-to-face surveys. For that reason, the researchers believed that there was little error in the reporting of ASD diagnosis.

Dr. Insel asked whether the validity of ASD diagnoses reported in this survey could be ascertained via clinical follow-up or evaluation of a selected survey sample. Dr. Blumberg replied that this has not been done. Dr. Matthew Carey asked when the follow-up report would be available. He observed that there continues to be a great deal of interest in capturing the number of individuals with an ASD diagnosis at the time of the survey but who no longer had that diagnosis. Dr. Blumberg said that this information will be in the follow-up report, along with information on the type of provider making ASD diagnoses. Ms. Jan Crandy asked how parents were asked to rate the severity of their child's condition. Dr. Blumberg responded that parents were asked to classify their child's ASD as mild, moderate, or severe. He agreed that there is likely to be some bias toward less severe ratings by parents.

Dr. David Mandell noted that in 2011-2012 children from the ADDM network were about 12 years old, which was the median age of children in the NSCH survey. He asked how the methods of the NSCH survey and the ADDM network could be reconciled and how the surveys should inform each other. He also asked about how the validity of both could be determined. Dr. Blumberg responded that it was worthwhile to understand the methodological difference between the two datasets to the extent possible. However, he re-emphasized that these were two very different systems and the prevalence numbers from each was less relevant than the observed changes over time.

Ms. Lyn Redwood asked about children with an ASD diagnosis in the 2007 NSCH survey but who no longer had this diagnosis in the 2011-2012 survey. She asked whether these children were wrongly diagnosed or did they recover? If children had recovered, she asked, what had parents reported as the most useful tool for recovery? She noted that currently there are milder cases of ASD and more cases of recovery than previously. Dr. Blumberg answered that parents were not asked about the effectiveness of services. He noted that about 15%-20% of children, who had ever been diagnosed with ASD, did not have an ASD diagnosis at the time of the most recent survey. However, this was based on preliminary analysis.

Dr. Larry Wexler noted that the percentage of the population with ASD doubled between 2005 and 2011, based on estimates from the Department of Education. He asked if this increase was consistent with the NSCH survey. Dr. Blumberg said that it appeared to be. In addition, he noted that this increase was consistent with the increase seen with the ADDM network. Ms. Abdull asked whether there was any information about state rankings in terms of ASD diagnoses. Dr. Blumberg replied that estimates at the state level were not very precise. However, the researchers were working to improve the precision of those data.

Dr. Blumberg noted that the NSCH dataset was available to the public on the NSCH website.8 Dr. Boyle noted that NIMH is conducting a study that will examine the differences between ever-diagnosed and current diagnoses in greater detail.

Maureen GormleyR.N., Chief Operating Officer, NIH Clinical Center

Ms. Maureen Gormley presented an update on Project SEARCH, which is a program aimed at providing school-to-work education and training, as well as hiring opportunities, for young adults with intellectual and developmental disabilities. The program was established at NIH in 2010. Ms. Gormley noted that more than half of the student interns in the program, who are subsequently hired by NIH, are on the autism spectrum. Ms. Gormley told the Committee that the project's model includes a local school for special-needs students, a vocational rehabilitation system, and the NIH Clinical Center. She said that the vocational rehabilitation system works with the SEEC (Seeking Equality, Empowerment, and Community for People with Developmental Disabilities), which is a non-profit agency that provides individualized supports to individuals in the community with developmental disabilities. Ms. Gormley said that the agency offers job coaches to these individuals. SEEC also works to reengineer jobs, so that the skills required by the job meet the needs of prospective employees with developmental disabilities. The NIH Clinical Center provides employment opportunities for these individuals. She said that program leaders work with hiring managers at NIH to find jobs that do not require professionals and that could be done better by someone in the Project SEARCH program.

Ms. Gormley said that the program involves 30-week unpaid internships for up to 12 individuals per year. Each intern completes three 10-week rotations, which help them experience what it is like to integrate into the workplace. Interns are matched to work sites based on their skills and abilities, she said. Weekly meetings include job coaches, school representatives, and the NIH onsite project manager. The interns are at the Clinical Center during the work week and receive 1 hour of classroom training in various work and social skills. They also spend 5 hours daily at NIH job sites, fully immersed with other employees. Ms. Gormley said that the ultimate goal is for these individuals to be hired by NIH.

Project SEARCH was started in 1996 at the Cincinnati Children's Hospital Medical Center. Currently, there are 200 sites in 20 states and 4 countries that participate in Project SEARCH. She said that other sites include hospitals, banks, federal agencies, businesses, and universities. Ms. Gormley provided examples of assignments at the Clinical Center, such as bar coding patients as they enter the clinic, ensuring hand hygiene, and providing hospitality. One program graduate automated the linen inventory at the center, she noted. Ten Institutes and administrative organizations within NIH are involved with Project SEARCH. In the first 2 years of the program at the Clinical Center (2010-2012), 22 interns graduated from the program; 13 were hired at NIH; and 3 were hired in the community. Of these, 14 are still employed. Overall, the Clinical Center has hired 73% of interns; 88% are still employed, she said. It is projected for 2013 that 9 of the 13 interns will be hired.

Ms. Gormley offered several lessons learned from Project SEARCH. While the data on employment of individuals with intellectual disability is hard to capture, Ms. Gormley said that the literature suggests that the national employment rates for individuals with disabilities is 30% less than for Project SEARCH at the Clinical Center.9 Notably, employment gaps are most problematic for transition-aged youth (18-21 years) with intellectual disabilities. The literature shows that individuals with intellectual disabilities desire social interactions at work, meaningful work, and the chance to contribute and make a difference. Ms. Gormley said that total immersion is a key element, which increases expectations for these individuals to function despite their limitations.

She pointed out that one challenge facing individuals with developmental disabilities seeking employment is that many employers are unaware that these individuals can hold mainstream jobs. In addition, she said, there is an assumption that hiring young people with intellectual disabilities it is too burdensome and costly. She said that it is important to identify factors that affect workplace assimilation. These include perceptions of fairness and the expense of accommodations for disabled employees. Ms. Gormley said that it is crucial to understand the stigma that these individuals face and to know how to overcome it. Part of this involves educating hiring staff about reasonable accommodation, which for individuals with intellectual disabilities involves skill level and independence in intellectual functioning and social adaptation. She said that in Project SEARCH, this is done by identifying each intern's unique talents. Ms. Gormley said that Project SEARCH works to partner with business and local rehabilitation agencies. Ms. Gormley highlighted the ingredients for the success of this model: collaboration across organizational boundaries, strong internal project managers, leadership support, employee accountability, co-worker acceptance, continual learning, and communication planning.

Mr. Robertson asked if Ms. Gormley included individuals with developmental disabilities in the group of "individuals with intellectual disabilities" that she described. She said yes. He also asked if there were plans to conduct interview surveys or use other methods to obtain qualitative and quantitative data. He also commented that Dr. Paul Wehman (Professor of Physical Medicine at the Virginia Commonwealth University in Richmond, Virginia) has similar data, in terms of the benefit of this model as a gateway to competitive integrated employment. Ms. Gormley responded that there is more outcome data than qualitative data. She said that she is currently working on a small study of co-worker perceptions of individuals with intellectual disabilities. Mr. Noah Britton asked if individuals were given an aptitude test. Ms. Gormley deferred that question to Ms. Lu Merrick, who is the Director of the Post High School Program at the Ivymount School. She said that interns come from their last year of school (school reports and educational records are available) or from the SEEC program, which uses an assessment tool for these individuals. Mr. Britton mentioned Aspira Tech, which is a business technology consulting company. Mr. Britton noted that at this company, the superior processing of autistic people in certain areas is matched with employment that allows them to use these assets. He expressed concern that Project SEARCH could end up as another "day-hab" program, where these individuals end up doing work that is beneath them. He stressed the importance of recognizing the superior processing aptitude of these individuals that many of these individuals have and matching them to appropriate jobs.

Mr. Robison asked whether the increased employability of Project SEARCH interns could be the basis for a letter to the Department of Labor, suggesting that meaningful incentives are necessary to encourage employers to hire those with disabilities. In his opinion, tax credits given for employers to hire those with disabilities are too complex and long-term, as to be worthless to small businesses. He said that in this letter, the IACC should advocate for replication of Project SEARCH at more sites around the country and that the model could be expanded to all employers in the United States. Dr. Insel said that the Committee could address this later—perhaps inviting experts from the Department of Labor.

Dr. Sally Burton-Hoyle noted that this work shows that person-based approaches are successful in employing people with intellectual disabilities. However, she said that in her experience the problem is that the goal of with vocational rehabilitation often is to close cases. In this setting, even high-functioning individuals with autism are seen as unemployable. Ms. Crandy asked if the sustainable employment rates for Project SEARCH sites in other states are known. Ms. Gormley responded that the rates for other states are thought to be comparable to the rates at the Clinical Center.

NIH Autism Centers of Excellence

Alice KauPh.D., Program Director, Research on Autism Spectrum Disorders (NICHD)

Dr. Alice Kau provided the Committee with an overview of the NIH Autism Centers for Excellence (ACEs), starting with a brief history,10 describing how the NICHD and NIDCD Collaborative Programs of Excellence in Autism (CPEA) and the NIH Studies to Advance Autism Research and Treatment (STAART) programs were consolidated into the ACE program, which is supported by five NIH institutes: NICHD, NIDCD, NIEHS, NIMH, and NINDS. The ACE program initially was funded for 5 years and was renewed in 2012.

Dr. Kau said that the ACE program is composed of ACE Centers and ACE Networks. The ACE Centers involve a multidisciplinary coordinated research program at a single institution and include 3-6 research projects, typically focusing on in-depth research on one aspect of autism. ACE Networks are networks of multiple research sites that collaboratively focus on one specific autism topic. The requirements for the newly renewed ACE program include research training, active dissemination of findings, support of the IACC Strategic Plan goals, and data sharing via the National Database for Autism Research. Based on FY12 awards, she noted that there are currently 11 ACE Centers and 8 ACE Networks around the country.

The ACE Centers include:

  1. Susan Bookheimer, Ph.D., University of California, Los Angeles, Biomarkers of Developmental Trajectories and Treatments in ASD;
  2. Ami Klin, Ph.D., Emory University in Atlanta, Mechanisms of Risks and Resilience in ASD: Ontogeny, Phylogeny, and Gene Disruption; and
  3. Helen Tager–Flusberg, Ph.D., Boston University, Minimally Verbal ASD: From Basic Mechanisms to Innovative Interventions.

The ACE Network topics include:

  1. Daniel Geschwind, M.D., Ph.D., University of California, Los Angeles, Autism Genetics Phase II: Increasing Representation of Human;
  2. Connie Kasari, Ph.D., University of California, Los Angeles, Adaptive Interventions for Minimally Verbal Children with ASD in the Community;
  3. Keven Pelphrey, Ph.D., Yale University, Multimodal Developmental Neurogenetics of Females with ASD;
  4. Joseph Piven, M.D., University of North Carolina at Chapel Hill, A Longitudinal MRI Study of Infants at Risk for Autism ;
  5. Abraham Reichenberg, Ph.D., Mount Sinai School of Medicine, Multigenerational Families and Environmental Risk for Autism [MINERvA];
  6. Sally J. Rogers, Ph.D., University of California, Davis, Intervention Effects of Intensity and Delivery Style for Toddlers with ASD;
  7. Mustafa Sahin, M.D., Ph.D., Harvard Medical School, Early Biomarkers of ASD in Infants with Tuberous Sclerosis; and
  8. Linmarie Sikich, M.D., University of North Carolina at Chapel Hill, Study of Oxytocin in Autism to Improve Reciprocal Social Behaviors [SOARS-B].

NIH Workshop on Nonverbal School-Aged Children with Autism

Helen Tager-FlusbergPh.D., Developmental Science Program Director, and Director, Lab of Developmental Cognitive Neuroscience, Boston University; Connie KasariPh.D., Professor of Psychological Studies in Education and Psychiatry, University of California at Los Angeles (UCLA)

Dr. Helen Tager-Flusberg presented a summary of an NIH workshop11 on minimally-verbal children (April 2010). The aim of the workshop was to establish the current knowledge about minimally-verbal school-aged children with ASD, to identify the gaps in knowledge based on current research, and to determine critical opportunities for advancing knowledge in the area. In particular, participants were told tofocus on the topics of how to identify minimally-verbal children with ASD, how to assess their skills and knowledge across different domains, and what interventions are potentially effective in improving spoken language and communication. She noted that a summary of the workshop is in press in Autism Research.

In the workshop, participants workshop addressed novel measures of cognitive abilities and brain function: eye tracking measures of language comprehension and processing, the use of magnetoencephalography (MEG) to assess auditory processing impairments, and the use of EEG/ERP to assess brain processing of language (words, grammar, and discourse). Dr. Tager-Flusberg said that in terms of effective interventions, participants looked at non-augmentative/behavioral approaches and augmentative approaches (approaches that use devices to facilitate communication). They concluded that future directions in interventions research include: more complete description of intervention participants; more flexible study designs; development of predictors of response to specific interventions; development of ways to measure meaningful change; and the urgent need for novel interventions for this population.

Dr. Connie Kasari discussed a paper on assessment that resulted from the workshop. The authors noted that assessment is the first area of research that should be addressed because interventions depend on good assessments, and good assessments can lead to meaningful outcomes. To that end, the workshop participants established a year-long workgroup to address the assessment of these children, said Dr. Kasari. She said that core areas of development (language, social, and repetitive behaviors) were examined, along with associated concerns (oral motor, medical history, nonverbal cognition, and prelinguistic skills [imitation, intentional communication, and play]). The workgroup developed tables with recommendations on the usefulness of each assessment measure for minimally verbal children with ASD. The workgroup identified a need for assessments to determine a child's verbal ability at a specific point in time. They also identified the need for validity data that can be used with minimally-verbal school-aged populations. Lastly, they recommended the use of a combination of standardized and experimental assessments.

Communication Growth in Minimally Verbal Children with ASD

Connie Kasari, Ph.D., Professor of Psychological Studies in Education and Psychiatry, University of California at Los Angeles (UCLA)

Dr. Kasari also discussed research being conducted at the ACE center at UCLA, which is investigating communications growth in minimally-verbal children with ASD. She said that language teaching should be the focus of early interventions. She noted that most early intervention studies have focused on preverbal children (children who have not yet begun to talk). However, based on research, it is not currently possible to predict with great confidence which children will remain minimally verbal or nonverbal at school age and which will begin to talk.12,13,14 It is clear that using spoken language by 5 years is critically-important to later optimal outcomes, she said.15,16 The paradox is that children who are not speaking by school age often receive decreased language services. Dr. Kasari said that it is estimated that as many as 25 percent to 30 percent (and possibly up to 50 percent) of children with ASD are minimally verbal at school age. She pointed out that the majority of children are not nonverbal, meaning that they cannot make any sounds or words at all.

Dr. Kasari said that the workgroup was motivated by a review paper17 that suggests that children with ASD can learn to speak after age 5 and that most have IQs greater than 50. Intervention using applied behavior analysis (ABA) has led to later speech development. She said that researchers in the Autism Speaks-funded "Characterizing Cognition in Nonverbal Individuals with Autism" (CCNIA) study found that IQ was not associated with socially communicative language changes.18 The best intervention sequence started with augmentative and alternative communication (AAC)—such as augmentative speech-generating devices—plus the communication intervention known as JASP-EMT (Joint Attention, Symbolic Play and Enhanced Milieu Teaching), she said. JASP-EMT focuses on creating a context for joint engagement within naturally-occurring child-led play routines. The results of this pilot study suggest that access to communication is critical. An AAC device can be instrumental, she said, but only in the context of an intervention, in which children learn to communicate with others using the device.

Dr. Kasari noted that few children have access to AAC devices in school settings. The ACE's goal is to construct an adaptive intervention—an individualized treatment protocol that is adjusted based on a child's response to initial treatment. The study design includes 192 children (48 at each site) aged 5-8 years with fewer than 20 words and an 18-month nonverbal cognitive age. The researchers are comparing the current evidenced-based standard of care Discrete Trial Training for Core Features of ASD (CORE-DTT)—an ABA intervention, which emphasizes didactic adult-led instruction with JASP-EMT. The study involves 4 months of treatment and 4 months of follow-up. Expected outcomes include the superior sequence of treatment and the identification of characteristics of children who are slow responders. Dr. Kasari said that the ultimate goal is to predict an effective sequence of interventions that personalizes interventions based on child response.

Minimally Verbal ASD: From Basic Mechanisms to Innovative Interventions

Helen Tager-FlusbergPh.D., Director, Developmental Science Program, Director, Lab of Developmental Cognitive Neuroscience, Boston University

Dr. Tager-Flusberg discussed research on minimally verbal ASD that is underway at the Boston University ACE, which focuses on the question: Why do these children fail to acquire spoken language? She said that the goals of this ACE are to:

  1. Advance knowledge of the heterogeneous phenotypes associated with minimally-verbal ASD;
  2. Develop and disseminate novel methods for assessing cognition, language, and behavior;
  3. Propose and evaluate several mechanisms related to neural circuitry to explain why spoken language is not acquired;
  4. Complete randomized controlled trials of a novel intervention specifically designed for this population; and
  5. Develop neural markers that predict response to intervention and that serve as measures of outcome success.

The first study that Dr. Tager-Flusberg described was exploring auditory-motor mapping training (AMMT) (Gottfried Schlaug, M.D., P.I.). The study is based on interventions developed for non-fluent aphasic patients (patients who cannot easily comprehend or formulate language). The technique is used to train the association between sounds and articulatory actions to facilitate speech output. Dr. Tager-Flusberg said that it uses combined intonation (song) and a pair of tuned drums to facilitate auditory-motor mapping. She called the technique engaging because it utilizes relative strengths of children with ASD while involving them in enjoyable activities. This intervention is delivered in a structured (ABA), socially-engaging context. The aim of the study is to determine the critical components of the technique. She said that these could include intonation, imitation through repetitive training, or hand-motor activities.19

In addition, Dr. Tager-Flusberg said that they will be conducting two randomized controlled trials of AMMT, each with 40 children aged 5-10 years. In the first study, 20 children will receive AMMT and 20 will receive control therapy, she said. Children will attend 25 sessions (5 days a week), followed by outcomes assessments. In the second study they will assess dosage effects of AMMT. For this study, 20 children will receive high-frequency sessions (5 per week) and 20 will receive low-frequency sessions (3 per week). The researchers will assess outcomes after 25 sessions. The trials will involve 15 picture symbols for words or phrases. Study outcome measures will include the production of trained and untrained items in the home for 24 hours and screening with the Language and Autism Screen (LLAS). The LLAS is a three-part assessment for children ages 24-48 months, which was developed by the LENA (Language ENvironment Analysis) Research Foundation. The researchers will assess several predictors of response to treatment, including behavioral and cognitive measures, drawn from the core assessment, as well as structural and functional neural connectivity measures.

Dr. Tager-Flusberg said that Project II focuses on brain imaging. Frank Guenther, Ph.D., and Dara Manoach, Ph.D., are the primary investigators. They are looking at the DIVA/GODIVA model, which is the most comprehensive neurocomputational model of speech production, according to Dr. Tager-Flusberg. The model requires integration of auditory, somatosensory, and motor information in the brain. The project's primary hypothesis is that deficits in speech production are related to abnormalities in white matter integrity and reduced coordination of activity in the speech network. There are two study components. The first study will involve children from the AMMT intervention study. Brain scans will be performed before and after the intervention. Scans will include brain anatomy functional connectivity using magnetic resonance imaging (fcMRI) at the resting state, diffusion-tensor imaging (DTI) scan. DTI allows mapping of fiber tracts within the brain. The second study will involve similar methods but in an older group of adolescent and young adult participants, ranging from range from intact language ability to minimally verbal.

Dr. Tager-Flusberg said that the final study (Barbara Shinn-Cunningham, Ph.D., P.I.) will look at organization of the auditory environment. She noted that auditory processing involves segregation of input into meaningful units (or 'objects'). Deficits in auditory scene analysis result from abnormalities in the structural and functional connectivity that underlies speech and language impairments. In this study, the researchers will include the same children from the AMMT intervention study, along with adolescents and young adults from Project II. They will use event-related potential (ERP) to detect perceptual organization, frequency, and intensity with tones and speech. ERPs represent transient changes in the brain's electrical activity in response to the presentation of a stimulus or event. ERPs are embedded in electroencephalograms (EEG). EEG will also be used to measure neural oscillations, which are linked to scene analysis and selective attention, Dr. Tager-Flusberg said.

Questions from the Committee

With regard to the dosage study, Dr. Donna Kimbark questioned whether the researchers had considered the dropout rate. She noted that five sessions per week is a very big commitment for families. Dr. Tager-Flusberg responded that the researchers currently are holding focus groups with parents to address some of these concerns. While the researchers would like to conduct the studies in the laboratory, they are open to using other locations to improve participation, she said. Ms. Abdull asked for comment on the rapid prompting method (RPM) and other therapies. RPM, developed by the mother of a child with autism is a technique that elicits responses through intensive verbal, auditory, visual and/or tactile prompt. She also pointed out that one concern with AAC machines is that children may point to objects but may not communicate verbally. Dr. Kasari noted that research shows that the AAC devices actually improve spoken communication for these children. She said that children without spoken language but with the ability to read were able to communicate with the AAC devices. Dr. Kasari said that providing minimally-verbal children with access to these devices is critically important. Regarding RPM, Dr. Kasari commented that these methods may work for individual children but have not been studied using scientific methods. As a result, it is unclear which children will respond and which children need a different intervention. She said that until these approaches are studied in this way, it is hard to recommend them with any confidence.

Dr. Insel noted that Ms. Portia Iversen (author of Strange Son20) was initially planning to attend the meeting, but was not able to attend due to a conflict. He noted that she has been an advocate for this area of research and has a video to share with the Committee about her son, who was minimally verbal but who acquired spoken language over time. He said that the video illustrates approaches to therapy for nonverbal children. Dr. Dennis Choi said that these projects have intrinsic importance to children who are affected but also as a potentially valuable model to help understand autism mechanisms. He said that speech circuitry and localization is better understood than most other higher cortical functions. Even a small number of very well-characterized individuals could help assess the efficacy of therapies that are designed to repair long distance connectivity, he said. This might tell researchers if they are moving in the right direction.

Dr. Insel noted that the Human Connectome Project Go to website disclaimer – a research effort to map the neural connections within the human brain—has focused on language circuitry at a very high resolution using diffusion spectrum imaging. This imaging technique allows researchers to map the fibrous structure of white matter. While the data is not yet available, the images are available, said Dr. Insel. However, it is unclear whether this technique could be used in children.

Mr. Robison noted that there is research that shows that "excessive" brain plasticity is present in individuals with autism. He asked if this excessive plasticity might be involved in the inability to acquire language and, if so, how. Dr. Tager-Flusberg said that she does not have a hypothesis about this in relation to older children. However, early plasticity plays a role in the acquisition of language possible in typically-developing children, she said. In terms of language circuitry, all of the connections that interest researchers continue to show developmental change. It is unknown whether there is an excess of plasticity in autism. While it is possible that this research might be able to address that question to some extent, the research at this ACE is not designed to answer that question.

Dr. Carey asked about the next steps for this research. Dr. Kasari said that the population in these studies includes a very small age range. However, older individuals can also learn to communicate via other means, such as typing). She agreed that more research is needed to address the needs of this population as they age. In addition, she said that minimally-verbal individuals should be included in other studies. Dr. Tager-Flusberg said that the push to find novel interventions for minimally-verbal individuals has shown promise. She added that by making these tools available, the group of completely non-verbal individuals will continue to shrink. She agreed that is necessary to develop interventions and supports for these children at older ages.

Mr. Robertson said that individuals on the autism spectrum with serious communication problems tend to be marginalized and don't always have access to augmentative communication devices. They also do not have access to communication supports that enable them to communicate their needs and get supports that improve their quality of life, he added. Dr. Walter Koroshetz asked how the researchers decide the timing for these interventions. Dr. Kasari said that after 24 sessions, they saw a huge jump in the use of socially-communicative language. They are using these data to drive decisions about timeframes. Dr. Tager-Flusberg said that there were 40 AMMT sessions but most of the gains were seen in the first 15 sessions. While these gains may be small, the interventions provide a jumpstart of the very first stage of communication for these children.

Dr. Batra asked if the researchers have looked at motor planning issues—planning and execution of a series of movements—in children who are slow responders Dr. Kasari said that they have identified a few moderating factors, such as repetitive behaviors. She added that motor planning does affect these children. The number of words that they can use functionally affects how quickly they progress, she said. Children with fewer words progress more slowly.

AutismNOW Website

Katherine Cargill-WillisProgram Specialist, Administration on Intellectual and Developmental Disabilities (AIDD), Administration for Community Living (ACL); Amy GoodmanCo-Director, AutismNOW, The Arc

Ms. Katherine Cargill-Willis discussed updates to the AutismNOW website.Go to website disclaimer She said that in October of 2010, the Administration on Intellectual and Developmental Disabilities (AIDD) awarded a $1.87 million grant for 4 years to The Arc of the United States to develop a web-based National Resource and Information Center on ASD and other developmental disabilities. The Arc is a national community-based organization that advocates for and serves people with intellectual and developmental disabilities. During the first year, The Arc's AutismNOW project held regional summits to listen to questions, challenges, and solutions from people with ASD and their families. The final report, Light at the End of the Tunnel, (PDF – 528 KB) highlights key findings from these summits. The main objective of the grant is to develop a resource center on a fully-accessible website with free resources, said Ms. Cargill-Willis. Sections of this website include: At Home, On the Job, In the Classroom, In the Community, and Funding & Public Policy. Site features include: the ability to browse by topic, access to the latest news and the latest resources, the ability to find local help, upcoming events, a blog, discussion boards, and an email registration form.

Ms. Amy Goodman, who is the co-director of AutismNOW, provided the Committee with a short tour of the AutismNOW website, showing them areas of the website addressing topics such as education, employment, nutrition and safety.

Questions from the Committee

Mr. Britton commented that a resource like this website has been needed for years, as it gathers needed, practical information into a single location. He asked if there were plans to disseminate the website more broadly. Ms. Goodman noted that the website is exhibited at all Arc conferences. She said that they would like to help the community become more aware of the site. Dr. Kimbark asked if the site has an iPad app available or planned. Ms. Goodman said that there is no iPad app and that there currently are no plans to develop one. Mr. Robertson noted that a lot of similar work was going on at the state level and asked if there was a possibility for collaboration. Ms. Goodman said the program would be open to collaboration with states.

Oral Public Comments

Dr. Insel noted that there were nine public comments on the agenda. He asked commenters to touch on the highlights of their presentations and to keep their comments to 3 minutes. He added that all committee members received copies of oral and written public comments. Dr. Insel briefly talked about IACC's core values in relation to the language of public comments. He reminded the attendees that one of the core values—with regard to the spirit of collaboration—is to treat others with respect, to listen to diverse views with open minds, discuss public comments, and foster discussion in an atmosphere where those with opposing views can be comfortable. He expressed the hope that public commenters would abide by that same set of values. He added that, hopefully, personal attacks would not be a part of this forum and that the public comment period is not the appropriate time to discuss topics that are outside the scope of the IACC.

Jennifer Repella, vice president for programs at the Autism Society of America, stressed the importance of measurable outcomes, particularly those related to quality of life. She noted that the Committee's interest in involving the Department of Labor is welcome.

Eileen Nicole Simon thanked the Committee for their focus on language at this meeting. She discussed the potential importance of the injury of auditory centers at birth. She said that these injuries play a role in auditory scene analysis and injury to the brainstem prohibits normal development in certain parts of the cerebral cortex related to language. She said that one possible cause of brain stem injury is the clamping of the umbilical cord seconds after birth, before full transition of respiration from the placenta to the lungs has occurred. She thanked Dr. Koroshetz for voicing support for auditory and language research.

Dena Gassner is a social worker in private practice, who works with transition-age teens and adults with autism. She is also an advisory board member for the Global and Regional Asperger Syndrome Partnership (GRASP). She discussed a need for the Committee to address the lack of accessibility to services related to employment and Social Security, which are needed by the autism community. She also said the automatic first denial protocol of Social Security must end. The current medical model should incorporate inconsistency with work history, relational issues, prior misdiagnoses, and the implications that these have, she said.

Dawn Loughborough, who has a child with autism, discussed gastrointestinal issues that may be associated with autism. She said that the current care paradigm for autism care doesn't address medical needs of children with autism. Currently autism diagnosis directs children to behavioral therapy, occupational therapy, and psychiatric models, but often overlooks medical needs. She asked the IACC to look at environmental causation and the medical needs of regressive autistic children.

Linda Varsu is the mother of a young man with autism. She discussed the impact of denial of autism diagnoses by family. This can mean that children diagnosed with autism don't get the benefit of early intervention, she said.

Allison Hoffman has a son who was diagnosed with regressive autism. She discussed the need for medical care for children with autism, who experience co-occurring conditions, such as gastrointestinal issues. She said that often these conditions are not investigated once a child has an autism diagnosis. She asked the IACC to address this issue.

Jake Crosby, who is a graduate student of public health at George Washington University and is diagnosed with Asperger syndrome, addressed problems with the findings of a study from the CDC that was published online in the journal Pediatrics. The study focused on exposure to antibody-stimulating proteins and polysaccharides in vaccines rather than the quantity of exposure to vaccines.21

Lori McIlwain, who is the executive director of the National Autism Association, presented a video on children who are most profoundly affected by autism. She said that these children and their parents needed a visual presence at IACC meetings and that they need supports and services. She said that they need literacy-friendly information, easy access, and centralized information for parents.

Karen Heffler, who is a physician and the parent of an autistic son, said that the research community has overlooked a contributing cause of autism and that there is a need to investigate the potentially adverse role that television, video, and electronic screen times may have on the developing infant's brain.

Public Comments Discussion

Dr. Dawson commented on the need to address the medical issues that individuals with autism face. She noted that this is an area that the IACC Subcommittee on Basic and Translational Research has identified as a very high priority. She noted that both HRSA and Autism Speaks have been working together to address this issue, helping physicians to recognize these medical conditions and encouraging them to develop guidelines that can be used more broadly. Dr. Dawson said the next phase of the Autism Treatment Network (ATN), funded by Autism Speaks, will include a strong emphasis on creating centers of excellence and a stronger emphasis on disseminating information to communities, so that more physicians will recognize these conditions and provide the treatment that both kids and adults need.

Ms. Abdull described her experience with her son and wandering. She explained that after much effort, she was able to work with Project Lifesaver, which uses technology (an ankle bracelet) that allows parents and caregivers to find children with autism when they wander. Project Lifesaver International is a non-profit organization that provides first responders with a program that includes equipment and training to quickly locate and rescue "at risk" individuals with cognitive disorders. Ms. Abdull said that she was only one of eight parents in her county with this device for her son. She asked how it might be possible to let more parents know about it and if Medicaid and private insurance could cover it. She also said that wandering could be traumatic for parents, especially those whose children are minimally verbal.

Dr. Insel noted that this is an issue that IACC has discussed in the past. He asked Ms. Singer to update the Committee on work that is related to wandering. Ms. Singer commended Dr. Boyle for her work to get an ICD-9 sub-classification for this behavior, which allowed data to be collected on this population and for parents and practitioners to have more awareness. She said that roughly half of autistic children will wander and of these, roughly half will be gone long enough to cause great concern for parents and first responders.22 She said that previously the Committee had discussed sending a few members to speak with the Department of Justice about creating an 'autism alert' that would be similar to an Amber Alert. Ms. Singer said that prevention is key with wandering. She said that one step towards prevention was getting the medical classification code for wandering, so that parents can be made aware of the issue and can take precautionary measures. Other steps for prevention include technologies that can be used in the home, such as placing alarms on doors and windows. After prevention, she said, the next focus should be on opportunities for finding wandering individuals, including use of ankle bracelets, wrists bracelets, or GPS tracking systems—as well as training first responders.

Dr. Dawson said that this is one part of a multi-pronged strategy. She added that, as the IACC considers revising the Strategic Plan for 2013, they may want to consider developing wandering prevention and intervention tools/programs for parents. Ms. Singer said that the National Autism Society might have those materials. She suggested that the IACC could endorse these tools to help get them into the hands of physicians, who can implement them. Dr. Dawson said that there is more work to be done in terms of developing systematic approaches and even more effective programs.

Ms. Redwood reminded the group that in 2012, the Committee wrote a letter to Secretary Sebelius about wandering behavior. She pointed out that the IACC asked for several specific items in the letter, but they were not addressed in the response from the Secretary. She suggested that the Committee consider writing to the American Academy of Pediatrics (AAP) about this issue. She noted that the AAP might not be aware that this diagnostic code exists. She also suggested including this information in AAP guidelines, so that physicians can ask the question about safety and wandering during office visits. She requested that she and Ms. Singer be appointed by the IACC to meet with members from the Department of Justice (DoJ), along with representatives of the National Autism Association, to discuss the feasibility of getting a nationwide alert system for children with autism. Dr. Batra noted that as a physician, she was unaware of the ICD code. She agreed that information should be disseminated to the AAP. She said that she helps families in her practice get I.D. tags for their children who wander. Dr. Carey said that they were talking about a population that is often not very verbal or otherwise communicative. He related that his son has a cell phone with a GPS that allows him to have some control right away if his son wanders. That same ability should be available to everyone with an autistic child, not just those parents who are most persistent or have the most resources, he said.

Dr. Insel brought the discussion back to the proposal to have Ms. Redwood and Ms. Singer talk with the DoJ. Dr. Daniels suggested that an alternative would be to have representatives from the DoJ attend the next Committee meeting. Ms. Redwood suggested that the National Autism Association do a presentation at the meeting along with the DoJ. Dr. Burton-Hoyle asked that the Department of Education be part of this panel as well, to include individualized education program (IEP) coverage and special education policies. Dr. Dawson suggested that the committee invite AAP President Jim Perrin in order to start that process as well. Dr. Insel added that inviting Dr. Perrin was an especially good idea because he is focused on autism and behavioral pediatrics. The committee should reach out to Dr. Perrin to work collaboratively, he said.

Dr. Cordero noted the importance of having standards of care over the lifetime for children with autism. He said that the AAP has already developed guidelines for Down's syndrome that address medical and behavioral issues.23 Dr. Insel noted that in the fall of 2012, the AAP announced a revised and updated second edition of its autism toolkit, "Autism: Caring for Children With Autism Spectrum Disorders: A Resource Toolkit for Clinicians.Go to website disclaimer 24 "Dr. Insel pointed out that the question of medical care and healthcare for people with an autism diagnosis is an urgent question that arises at every meeting.

Mr. Robertson said he would like more discussion on access to healthcare, specifically state laws that govern access to healthcare. He noted that when such laws are adopted in states, they are not always implemented. There is concern that there is a law but it is not being enforced. Mr. Robertson said that mechanisms are needed for achieving national, State, and local level consistency and buy-in with regard to the difficulties and needs of those with autism. He added that it is important to focus on healthcare access and standards that address some of the medical challenges that adults and children on the autism spectrum face.

Dr. Jim Ball said that one criticism of the IACC has been the lack of impact on services and that engaging in the wandering issue was an ideal way to bring the IACC's efforts to fruition.

Ms. Redwood said that one topic that the Committee hears repeatedly is the issue of undiagnosed medical problems. She reminded the Committee of Ms. Hoffman's public comment that once the diagnosis of autism was made, all the other medical comorbidities were overlooked. Ms. Redwood said that she had the same experience with her son and that it took years to piece together the medical comorbidities. She said that each time they found the right physician, they saw improvement in her son's cognition and behavior. She said that she considers it a violation of human rights that these children are not receiving appropriate medical care. Ms. Redwood said that the IACC needs to assist with the development of multidisciplinary health assessments and effective treatment guidelines. She stressed that this is important because of the quantity of research that documents immune system abnormalities, gastrointestinal abnormalities, and seizures. She said that she believes that many self-injurious behaviors in these children may be due to pain. However, these types of behaviors and complaints are often ignored. She suggested devoting an entire workshop to this issue and to work to get guidelines published, which will help clinicians recognize these conditions in children with autism.

Ms. Redwood also mentioned that the issue of vaccines is one that the IACC has not addressed. She said that more than 80 cases have been compensated through the Vaccine Injury Compensation Program (VICP). She added that in these cases, children regressed after receiving vaccines and were subsequently diagnosed with autism. She suggested that there is a subset of children, who are more vulnerable to vaccines and that it is necessary to determine why. She requested that the Committee look into this question in the 2013 Strategic Plan.

Dr. Alan Guttmacher told the Committee that he and Dr. Insel recently met with Tim Shriver, who is the Chairman and CEO of the Special Olympics, to discuss the issue of co-occurring conditions in individuals with developmental disabilities in general. However, they did not specifically address autism. He said that the Special Olympics organization is in the early stage of planning an event for this fall to address the issue of co-occurring conditions. Dr. Insel said that one option for the Committee would be to develop a session specifically on comorbidities associated with ASD. He pointed out that a key question is how to change practice and how to get physicians to recognize these conditions in children with ASD. Dr. Guttmacher asked whether this discussion should be part of the bigger meeting that is being planned for the fall. Dr. Insel said that leveraging this event could be useful. He noted that the Special Olympics has an enormous impact globally.

Dr. Batra said that one way to capture the attention of pediatricians is to tie this issue to a meeting for pediatricians. Dr. Denise Dougherty noted that the AAP national convention and exhibition is in October in Orlando. Dr. Insel suggested that the IACC reach out to Dr. Perrin soon to ask his advice about how to disseminate this information to pediatricians. Dr. Insel said that Dr. Perrin is very interested in changing practice and would likely be very engaged with the IACC. Ms. Laura Kavanagh said the Committee should try to change practice across disciplines because it might not always be the pediatrician who sees the child first.

Dr. Insel summarized possible actions. One was to focus a session at the next IACC meeting on the issue of wandering and safety. The second issue was to focus a session on co-occurring conditions. Dr. Insel said that AAP President Dr. Perrin would be very helpful in determining the best method for disseminating this information to pediatricians and other health professionals.

Mr. Robison recalled that in previous discussions one objection to a wandering proposal was that it could prevent people in abusive situations from seeking help. Dr. Insel suggested that the Committee discuss this issue in more depth at the next meeting, when DoJ representatives would be present.

Ms. Singer said that the Committee previously discussed hosting a panel on the challenges of self-injurious behaviors and other co-occurring conditions for the July IACC meeting. She said that the Committee would then use information from the panel session to develop a workshop on these topics. She asked for an update on this. Dr. Susan Daniels said that no invitations had been made to subject matter experts yet. However, she said that OARC had received several speaker suggestions for this panel. Dr. Insel suggested that panels on both wandering and co-occurring conditions be developed for July 9thmeeting so that Dr. Perrin could be present for both discussions.

Science Update

Dr. Insel mentioned President Obama's announcement of a new BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative, which is an attempt to map the human brain and its dynamic activity, as well as to understand how humans think and how they remember. A number of federal agencies will be involved, including the NIH, the Defense Advanced Research Projects Agency (DARPA), and the National Science Foundation (NSF). Private foundations will also be involved in the initiative. Dr. Insel said that President Obama has proposed more than $100 million of funding for the project in his 2014 budget.

Due to time constraints, Dr. Insel decided not to go through the rest of the science update in detail, but indicated that the slides (PDF – 111 KB) would be available on the IACC website. He did mention the Shared Health Research Information Network (SHRINE) (PDF – 602 KB) national pilot investigation, which is a population-scale investigation across eight nationwide medical centers that focuses on discovering co-occurring conditions related to the primary diagnoses of diabetes and autism based on medical records. He said that the advantages of this approach were that it is longitudinal, family-based, and allows deeper analysis.

IACC Business

Dr. Daniels asked for clarification on what the Committee wished to do with regard to the panel on co-occurring conditions. Dr. Batra said that the two issues that she encounters most frequently in practice are gastrointestinal problems and sleep problems. She said that these often are the most problematic and disruptive comorbidities for families, but noted that other concerns include neurologic issues, allergies, and autoimmune disorders. Ms. Redwood added that metrabolic system issues are also important and mentioned literature on mitochondrial injury, methylation defects, and low levels of glutathione. She said that there were also studies on metabolic treatment using n-acetylcysteine, which is believed to help with metabolic pathways and with behaviors. She said that she believes that there are links between all of these issues and autism. She suggested that it might be helpful to use a systems biology approach to find common pathways or links between these different abnormalities. It is possible that these may not be comorbidities but rather drivers of the disorder. She speculated that self-injurious behaviors may be related to the fact that nonverbal children cannot talk about their pain from comorbid conditions.

Dr. Dawson said that the Autism Speaks' Autism Treatment Network (ATN) has data on roughly 6,000 children, who have been screened for a number of these co-occurring conditions. She also suggested inviting a speaker to present on pathophysiology—perhaps for gastrointestinal or autoimmune conditions—and the possible biologic or etiologic significance.

Ms. Singer said that at the last meeting, a mother had spoken during the public comment period and showed photographs of injuries that her nonverbal son had inflicted on himself. She suggested bringing in a representative from an inpatient psychiatric facility to discuss the experience of these children and their families, along with treatments—such as electroconvulsive therapy (ECT)—that may be used. She suggested bringing in Lee Wachtel, M.D., who is the medical director of the Neurobehavioral inpatient unit at the Kennedy Krieger Institute, to discuss this population.

Mr. Robertson noted that there is a tendency to focus only on these problems in the childhood population but not in adults with autism. He suggested inviting an expert, who could speak to medical problems that adults with autism face. Mr. Robertson noted that he knew of many adults with autism, who were not able to get their medical needs met; often the social and sensory elements of autism provide a barrier for adults to communicate with clinicians. Dr. Dougherty said that there was an initiative, involving several HHS agencies, for adults with multiple chronic conditions. She suggested that to the Committee should contact this group to learn how they are addressing the medical needs of adults with autism and co-occurring disorders.

Ms. Abdull said that the Committee ultimately should take action in a way that is meaningful to patients and families. She noted that many pediatricians don not know about autism and co-occurring conditions. She also said that prevalence data was needed It would also be useful to provide parents with information regarding co-occurring conditions.

Ms. Redwood said that there were too many topics to address and that narrowing the topics down to fit into an IACC meeting was not feasible. She said that a workshop would be needed in order to reach a level of detail necessary to establish guidelines. She suggested that they try to partner with the AAP and others to develop a product to address these comorbidities at the next meeting.

Dr. Choi suggested limiting the discussion to unexpected symptoms of disease outside of the nervous system, such as disturbances in sleep, self-injurious behavior, and gastrointestinal problems. He said that these conditions could potentially be very significant clues of some underlying biology.

Dr. Daniels asked if the Committee wanted to invite a panel on self-injurious behavior to the next meeting, but to address the issue of comorbid conditions in a bigger event later in the year. Dr. Dawson said that she was concerned about addressing the comorbidities in a larger and more general meeting in the fall, where the issue may get lost and where the timeline is too distant. She added that there was a short window of time in which to work with Dr. Perrin as the AAP president. She said that if Dr. Perrin was present at the next IACC meeting, then they should take that opportunity to discuss the state of practice guidelines and whether to partner with AAP to disseminate information to clinicians. Dr. Insel suggested talking with Dr. Perrin at the July meeting about many of these issues and to get his opinion about the best way for the Committee to proceed. Dr. Dawson asked if it would be possible to have two panels at the next meeting and to focus on action items. Dr. Insel noted that one of the panels would be on wandering and safety and asked the Committee what the other panel topic should be. Ms. Singer said that if Dr. Perrin is going to be at the next meeting, then they should address practice and comorbidities and to have the panel on self-injurious behavior until a later meeting. Dr. Farchione suggested inviting a panel member to discuss graduate medical education, as this pertains to the modification of future medical practice and the education of future physicians.

Dr. Dawson suggested asking Dr. Perrin about the possibility of having a session co-occurring conditions at the annual AAP meeting. She asked whether the AAP autism guidelines included wandering. Dr. Boyle said that the AAP does have fact sheets on wandering and a toolkit on autism. Dr. Insel suggested that they ask Dr. Perrin about how best to disseminate information regarding the wandering billing code. Dr. Boyle noted that the wandering code was also intended for data collection on the prevalence of wandering behavior among of children with ASD. She said that the Committee should ask Dr. Perrin about how the wandering code could be used in practice for reimbursement, in terms of counseling or services.

OARC Update

Dr. Daniels presented a brief update of OARC activities. She told the committee that the 2012 IACC Summary of Advances in ASD Research was released on April 9th, 2013. It is available on the IACC website. This document is published annually as a requirement of the Combating Autism Act. She said that the included research reflects progress in the seven questions areas of the IACC Strategic Plan. Dr. Daniels also noted that the Committee recently sent a letter to the Secretary of Health and Human Services regarding health coverage for early behavioral interventions. The letter includes the Committee's recommendation supporting coverage of and broad access to these treatments based on the growing evidence base. In the letter, the IACC also recommended that this coverage be available to both children who are insured with Medicaid and to those with private insurance. The letter is available on the IACC website under IACC publications.

Dr. Daniels also provided an update on several ongoing OARC projects. She said that currently OARC staff was working on the IACC Autism Spectrum Disorder Research Portfolio Analysis Report for 2011 and 2012. Data still were being collected from agencies and organizations, and staff was in the process of verifying the data received to date far. She said that the final report would be released in the fall and the data would be made available in the IACC/OARC Portfolio Analysis Web Tool In addition, she said that data from 2008 were being formatted for inclusion in the web tool.

Dr. Daniels said that another upcoming project was the Combating Autism Act Report to Congress, due at the end of September 2013. She said that this report will describe the autism-related programs of all federal agencies with regard to autism. The report also would include budget information and a brief description of program highlights and outcomes. The report would be publicly available after it has been submitted to Congress. Dr. Daniels said that OARC is also working on an ongoing project to create a searchable online database for IACC public comments.

Dr. Insel then asked the Committee for their thoughts about how to handle public comments that are personal attacks of either IACC members or other individuals or that could be interpreted as hate speech (denigrating comments about gender, race, religion, sexual orientation, disability, etc.) After considerable discussion, the Committee arrived at the consensus that public comments should not be censored unless they contained vulgar or threatening language. The IACC members felt that it was important to preserve the opportunity for the public to freely express their opinions. Dr. Daniels suggested that OARC could issue a guideline about the expected conduct for public participation in meetings, including public comment, when they announce the IACC meetings in the Federal Register. While this would not be binding, it would establish a guideline that states the Committee's values regarding respect for all opinions and being considerate even when there is disagreement. Dr. Insel agreed that this might be the best way forward. He also told the Committee to alert him or Dr. Daniels if any members ever felt intimidated or threatened in any way, as it is his responsibility as the Chair and Dr. Daniels' responsibility as Designated Federal Official to create a safe environment for everyone participating in meetings of the IACC.

IACC Update

Strategic Plan Update

Dr. Daniels reminded the Committee that they must update the Strategic Plan by the end of December 2013. Dr. Insel noted that for this year's update, they had discussed examining the objectives in the Strategic Plan and determining what has been accomplished over the time period since the passage of the Combating Autism Act (CAA), (PDF – 142 KB) identifying any barriers, and assessing what research still needs to be done. This would differ from the previous year's update effort, which had only looked back over the previous two years, and mostly focused on research highlights rather than a systematic review of accomplishments in relation to the IACC Strategic Plan. A planning group for Question 1 was established to create a pilot process for this progress review. This group determined that the IACC Portfolio Analyses (from 2008 through 2012) would be a useful quantitative analysis to assess what has been done and what remains to be accomplished. They also thought that an expert panel would be helpful for a more qualitative analysis, in addition to bringing in some consumers and members of the IACC, to review what has been accomplished since 2008 for a particular question of the plan. The hope is that by putting together the panel with a qualitative assessment and the portfolio analysis with the quantitative data that this might provide a useful update to the plan and a reflection on the accountability question.

Dr. Boyle, leader of the planning group, added that they had discussed the best way to get the qualitative data as well as how to request information from both scientists and consumers to get a sense of what the impact of the Strategic Plan has been for the autism community. Ms. Singer added that they also talked about using the panelists to help prioritize the objectives. Ms. Redwood voiced concern about the time crunch and suggested that the planning group start the process of assessing what objectives have already been accomplished. Dr. Insel noted that there is a lot of expertise on the Committee itself and that part of that qualitative assessment could happen within the Committee. Dr. Dawson said that the key will be thinking about how to put together the panels that do the qualitative assessment. She stated that it should be a combination of IACC members and experts—both in the field and maybe even outside the autism field—that have the expertise to have a distant look without having a personal investment. She added that perhaps there should also be a practitioner—a representative from a professional society. Dr. Batra said that good science is being done, but wondered how this research has been translated to the real world and how it affects her as a parent and as a pediatrician.

Dr. Mandell suggested conducting an analysis of objectives from the Strategic Plan that are representative of each section and then describing the status of the objective. This could serve as a scorecard that describes where the process stands and what is left to accomplish. However, he cautioned that it would be difficult to do this in a meaningful way for every objective in the Strategic Plan, given the resource constraints.

In response, Ms. Redwood said that the committee needs to address all 78 objectives in the update of the plan. Some objectives have been accomplished and some are on track, she noted. However, with regard to other objectives, the Committee may realize that they have been asking the wrong questions. Dr. Mandell and Dr. Insel stressed the need to prioritize the activities of the Committee, given the ambitious agenda that they want to accomplish. Ms. Redwood suggested that breaking the Strategic Plan update process into seven groups, one for each question, would divide the work and make the task more achievable.

Mr. Robertson expressed concern that the approach that the Basic and Translational Research (BTR) Subcommittee adopts to update the Strategic Plan may not work well for the Services Research and Policy (SRP) Subcommittee. He asked if it was necessary to adopt a uniform approach for both. Dr. Insel said that it would be more expedient to use a uniform approach for each subcommittee. Dr. Dougherty asked how much time the Committee has to complete the update. Dr. Insel said that they are required by law to update the Strategic Plan by December. He said that the Services Research and Policy Planning Group has identified additional projects, which they will need to discuss further. He added that it was likely that the Committee would engage a smaller group of experts than last year.

Dr. Dawson noted that this update, in comparison to last years, is reviewing progress over a longer time frame (since the passage of the CAA), using the same kind of process as in the past. She suggested rather than thinking about 78 objectives, it may be better to list objectives that have been accomplished, list objectives on which very little progress has been made, and list objectives that should be very high priority moving forward. Dr. Ball said that he would like to see this update go further with regard to the objectives that have been completed. He suggested that the Committee also look at how the results affected the quality of life of individuals and their families. Dr. Daniels noted that most of the objectives were written to say that the committee recommends support of specific projects by a given date, rather than that the committee recommends the accomplishment of specific scientific goals or outcomes by a given date. The IACC Portfolio Analysis tracks how many projects have been funded in each area specified by the IACC Strategic Plan objectives, but if the Committee wanted a detailed analysis of scientific or community outcomes of research, that would be an additional project that would require much more time and resources.

Dr. Insel said that his understanding was that the Committee wants to use the portfolio analysis to answer the first level of analysis—did the science get funded? He added that they could use the green/yellow/red light scorecard that is provided in the Portfolio Analysis. Dr. Insel pointed out that they cannot start work on the 2013 update without the 2012 portfolio analysis. Dr. Daniels said that OARC was still waiting for the release of NIH's 2012 autism grant data, which had been delayed by sequestration, but was expected sometime in April. She added that this dataset is a huge part of the portfolio analysis, and without it, the analysis would not be meaningful. She said that OARC had received data from many private funders, though some were still working on their submissions. Dr. Daniels pointed out that data from 3 other years are available and that the Committee could start to look at those data. Dr. Insel suggested launching the effort to update the Strategic Plan over the summer. Dr. Daniels added that the Combating Autism Act Report to Congress will also be available sometime in the fall. Dr. Insel said that they should begin putting the planning groups together in the coming months.

Coverage Letter to the HHS Secretary

Dr. Dawson asked if they had received any response from anything had been heard back from the Secretary Sebelius regarding the coverage letter that the Committee sent. Dr. Daniels said that she had not received anything so far. Ms. Dougherty said that she did not think that Secretary Sebelius really could take any actions with regard to the letter on the essential health benefits package. This is a matter for the states. However, several committee members agreed that having that letter would be useful to bring to their individual states. Ms. Crandy noted that she has entered that letter into testimony in Nevada to increase coverage for autism. She added that she hoped that the Secretary would issue a directive that advises states to expand the coverage in a level of intensity that is research-based for dosage. Ms. Abdull told the committee that the letter had been used in Minnesota.

DSM-5 Planning Group

Dr. Dawson updated the committee on the work of the DSM-5 planning group. She said that the overarching issue is how the new DSM will affect both access to services and prevalence estimates. More detailed questions include: how the Social Communication Disorder (SCD) diagnosis will be used in practice—both in terms of how clinicians should use this classification in making treatment recommendations and what interventions will be reimbursable by insurance companies for individuals with the SCD diagnosis. She said that the changes will have both practical and research implications. In her opinion, the planning group should monitor the rollout of DSM-5 perhaps should consider research and/or policy recommendations, if necessary. Mr. Robertson noted that a few pieces on DSM-5 had been written for the Autistic Self Advocacy Network (ASAN) and that he could provide those items to help inform the discussion. He also said that he felt that the Committee had not been able to address some of the big-picture issues because there was limited time for preparing the 2012 plan. He said that these issues are important to adults with autism. Dr. Insel said that in his opinion the development of a services roadmap or other efforts aimed specifically at adults with ASD could have a much greater effect than adding another objective to the Strategic Plan. Mr. Robertson asked if this product could be available to Congress. Dr. Insel said it would be more effective to help practitioners to change policies, to the extent that is possible. He said that the recent letter from the Committee to Secretary Sebelius would have a much greater impact.

Services Research and Policy Subcommittee Projects

Mr. Robison also said that he is concerned that the IACC continues to be child-focused with regard to research and services. He said that he believed that one of the duties of the committee is to spread awareness, particularly with regard to the fact that there are two or three undiagnosed adults for every one child diagnosed with ASD. Dr. Mandell expressed concern that the Committee had not put enough thought into what a roadmap would look like. He said that he believed that there are at least three parts to a roadmap. First, there is the fiscal issue—how do various agencies make funds available for the care of adults with autism. Then there is a service component—how are these services organized and delivered. He said that the most important part is identifying the right tools to provide and how best to deliver these services. Mr. Robison said that he believed that there should be a group within NIHs representatives of the government—which could give an imprimatur of legitimacy or conformance to standards, when new therapies are developed and validated. It is important to be able to demonstrate that medical therapies or behavioral treatments were developed and validated in a scientifically acceptable manner. He suggested moving towards a more collaborative approach between government agencies and private organizations to evaluating new research with respect to its efficacy for both children and adults. Beyond that, he added that the Committee should provide clinicians with "prescription guidelines" for new therapies—medical or behavioral. Ms. Singer said that the there is a need for a central repository for best delivery practices. The planning group had talked about creating a parallel document to the Strategic Plan, which would be focused on service delivery. Mr. Robertson pointed out that for many adults with ASD, employment, housing, and access to services and healthcare are more important than therapy. He said that it is necessary to employment, healthcare services, education, physical well-being, and mental well-being, when assessing quality of life for adults with ASD. Dr. Insel noted that most children with autism are going to become adults with autism. Therefore, it is even more important to push for research and policy for adults with ASD.

Dr. Dawson asked if this roadmap would be a toolkit that parents or people with autism can use. Is it intended to be a best practices document or an assessment the care for and support of adults with autism in the United States? Dr. Insel asked if there already was a document that addresses the state of services for adults. Dr. Mandell said that the closest thing that he was aware of is the research of Paul Shattuck, Ph.D., (Assistant Professor of Social Work at Washington University in St. Louis, Missouri), who is using data from the Pre-Elementary Education Longitudinal Study (PEELS). Ms. Crandy pointed out that some states have started to collect this information and make it available. She said that the Committee should not spend a lot of time redoing something that has already been done by others. She suggested either pulling this information into a committee document or have the Committee give an endorsement to good-quality existing documents.Mr. Britton said that the proposed document sounds something that is already on the AutismNOW website. Mr. Robertson said that he does not think that the Committee could completely address the question of the state of care and support for adults with autism in the United States. He said that until there are assessments/interviews with a large sample of autistic adults in the United States, it will not be possible to have a complete picture. Dr. Boyle suggested that perhaps the Committee could ask that questions about adults with autism be included in the National Health Interview Survey.Dr. Dawson mentioned that there are also a few projects that may be in the second or third year, which should coming to fruition. She said that all of these involve a combination of services to get a landscape analysis of services and employment but also include qualitative interviews around quality of life for adults with autism. She suggested that when thinking about the toolkit, they should keep a developmental perspective because what happens in early life affects later life outcomes.

Dr. Batra asked how the proposed roadmap would be different from existing toolkits/roadmaps for adults with autism. Dr. Dawson said that Autism Speaks currently is developing an employment toolkit. Dr. Batra suggested that existing tools could be one IACC document. Dr. Insel reminded the Committee that they should approach existing tools with some skepticism to ensure the recommendations have a sound scientific basis.

Dr. Insel briefly informed the Committee about an Institute of Medicine project, which is aimed at developing criteria for determining the validity of mental health research. He said that this IOM work could help the Committee, in terms of at least developing language and some basic standards for behavioral interventions or for anything in the psychosocial domain.

Given the amount of work involved with the Strategic Plan and a possible roadmap for adults with autism, Dr. Insel asked if the Committee wanted to set a health disparities project at a lower priority, despite its obvious importance to the Committee.

Dr. Cordero said that perhaps the Committee does not need to prepare a specific health disparities document. Instead, he suggested that as they work on the Strategic Plan and an adult toolkit, they also could address major disparities in terms of access to care, the amount of money devoted to research for autism compared with other conditions, and disparities among groups within the autism community. Dr. Insel asked the committee members if they thought that the issue of disparities could be integrated into upcoming projects or if Ms. Dougherty pointed out that the existing evidence base for adult services is not likely to be large. Therefore, there might not be enough data to look at disparities in a meaningful way. Dr. Cordero said that there is very little research on the subject of health disparities. Ms. Abdull said that it is already known that disparities exist. The better question is how to eradicate these disparities. She also said that the Committee also should address the issue of payment. The committee needs to ensure that CMS covers best practices for all people across the spectrum, including underserved groups and across the life span.

Dr. Mandell suggested that perhaps the SRP Subcommittee should revisit whether a toolkit is the right strategy for addressing the needs of adults with autism. If it is the right strategy, perhaps the Committee should write it in such a way that it will be particularly meaningful to groups that often face discrimination. Dr. Kimbark said the Committee first needs to define health disparities. With regard underserved populations, they should discuss access to care, demographics, and consistency of care. Dr. Insel said that it would probably be best if the services subcommittee revisits prioritizing these issues and how to develop a product.

Round Robin

Dr. Ball pointed out that the 47th annual conference of the Autism Society will be in Pittsburgh on the 11th, 12th and 13th of July. The society is providing free attendance for anyone with ASD. Mr. Robertson mentioned that in April, ASAN launched four autism acceptance websites. He added that ASAN has published a booklet—And Straight On til Morning: Essays on Autism Acceptance Go to website disclaimer—which is a collection of essays and other articles by autistic adults that addresses moving toward acceptance and understanding the resilience that autistic adults need to have in order to face challenges. Dr. Batra acknowledged OARC staff for their work in facilitating the committee's work. Mr. Britton asked if the IACC has been extended beyond October. Dr. Insel said that the IACC is authorized until the end of September 2014. He added that so far, there is no reauthorization or extension beyond next October. The IACC will end when the authorization ends, unless it is reauthorized by Congress. Dr. Dawson mentioned that there were a series of events at the United Nations for World Autism Day (April 2nd). She added that the United Nations passed a resolution Go to website disclaimer that requires every country to report annually on the progress that they are making in terms of autism research and services.

Closing Remarks

Dr. Daniels said that she would be in contact with regard to future meetings. Dr. Insel thanked everyone for their participation.


The committee adjourned at 5:08 p.m.


These minutes of the IACC Full Committee were approved by the Committee on July 9, 2013.

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

/Thomas Insel/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee

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1 2012 Summary of Advances in ASD Research

2 Presidential Proclamation—World Autism Awareness Day, 2013

3 HHS Secretary Kathleen Sebelius Statement on National Autism Awareness Month

4 U.N, Secretary-General's Message for 2013 World Autism Awareness Day, 2 April

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6 John Elder Robison: Autism Awareness, Being Different: Remediating Disability While Embracing Uniqueness

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20 Portia Iverson. 2007. Strange Son: Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism. New York: Riverhead Books.

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meeting speakers Speakers

Linda K. Smith

Deputy Assistant Secretary and Inter-Departmental Liaison for Early Childhood Development
Administration for Children and Families (ACF)

Ms. Smith joined the IACC as a Federal member in 2013. As Deputy Assistant Secretary and Inter-Developmental Liaison for ACF, she provides overall policy coordination for the Head Start and Early Head Start Program and the Child Care and Development Fund, as well as serving as the liaison with the U.S. Department of Education and other federal agencies. Her office serves as a focal point for early childhood policy at the federal level. She previously served as the executive director for the National Association of Child Care Resource and Referral Agencies (NACCRRA), where she represented more than 650 community-based agencies concerned with the care of children in their earliest years. Ms. Smith led the organization through significant growth and transformation- she was the driving force behind NACCRRA's national policy agenda and strategic plan to improve the quality of child care nationwide. Key components of NACCRRA's advocacy efforts included strengthening child care licensing and oversight, requiring comprehensive background checks, and establishing minimum training requirements for all child care workers. Prior to joining NACCRRA, Ms. Smith served as a legislative fellow and professional staffer on the Senate Health, Education, Labor and Pensions Committee under the Chairmanship of the late Senator Edward M. Kennedy. Prior to this work, she was the director of the Office of Family Policy for the Secretary of Defense, where she was one of the primary architects of the military's child care program. Additionally, she has held positions with both the United States Army and United States Air Force. She began her career in early childhood education on the Northern Cheyenne Reservation in her native state of Montana. She is a graduate of the University of Montana.

Stephen Blumberg

Acting Associate Director for Science
Division of Health Interview Statistics
National Center for Health Statistics
Centers for Disease Control and Prevention (CDC)

Dr. Stephen Blumberg was recently named the Acting Associate Director for Science for the Division of Health Interview Statistics at the National Center for Health Statistics, Centers for Disease Control and Prevention. Prior to this new role, he was the lead statistician for the State and Local Area Integrated Telephone Survey. This random-digit-dial survey mechanism regularly fields some of the world's largest telephone surveys on children's health, health care, and well-being, including the National Survey of Children with Special Health Care Needs and the National Survey of Children's Health. His published research often focuses on survey strategies to identify vulnerable populations, such as children with special health care needs and children with autism spectrum disorder. Since 2003, Dr. Blumberg has also written and spoken extensively about the prevalence of wireless-only households and the impact of cell phones on coverage bias for telephone surveys. His honors include the 2008 Young Professional Achievement award from the Coalition for Excellence in Maternal and Child Health Epidemiology, the 2009 Warren J. Mitofsky Innovators Award from the American Association for Public Opinion Research (AAPOR), and election as the 2012 President of DC-AAPOR, AAPOR's Washington-Baltimore chapter. Dr. Blumberg has a PhD in Social Psychology from the University of Texas at Austin.

Michael D. Kogan

Director, Office of Epidemiology and Research
Health Resources and Services Administration (HRSA)

Dr. Michael D. Kogan is Director of the Office of Epidemiology and Research for the Maternal and Child Health Bureau at HRSA. In this position he is responsible for directing activities of the office with an emphasis on 1) building the data capacity of federal, state and local areas in maternal and child health; 2) strengthening the present and future workforce skill levels in maternal and child health epidemiology; 3) disseminating information and strengthening the evidence base in maternal and child health; and 4) overseeing the extramural research program. He also serves as the Project Director for the National Surveys of Children's Health and the National Surveys of Children with Special Health Care Needs. Prior to this position, he was a senior epidemiologist with the Centers for Disease Control and Prevention, National Center for Health Statistics.

He serves on the editorial board of the Maternal and Child Health Journal and has served in that capacity for the American Journal of Public Health. He has served as a special editor for Pediatrics and the Maternal and Child Health Journal. He has also held adjunct academic appointments at the University of Alabama at Birmingham and Harvard University, and is a regular lecturer at Georgetown University. He has published over 100 articles and book chapters on numerous topics in pediatric and perinatal epidemiology. He received the 2003 Advancing Knowledge award from the Coalition for Excellence in Maternal and Child Health Epidemiology. He also received the 2011 HRSA Administrator's Award for Excellence for his leadership and research. He received his doctorate in epidemiology from Yale University.

Maureen E. Gormley, M.P.H., M.A., R.N.

Chief Operating Officer, NIH Clinical Center

Over her 25-year career at the National Institutes of Health (NIH), Ms. Gormley has enjoyed working in an environment rich with scientific leaders and clinical experts whose mission is to further discovery in the field of medicine. Her current responsibilities include oversight of administration and operations including patient nutrition, facilities management, housekeeping, materials management, social work, spiritual ministry, communications, patient recruitment, training/organizational development, acquisitions, and the Edmond J. Safra Family Lodge. Additionally, Ms. Gormley is responsible for the development of the Clinical Center's annual operating plan and serves as executive secretary to the NIH Advisory Board for Clinical Research.

Ms. Gormley was hired in 1987 as an administrative fellow in the Clinical Center Office of the Director. In the early 1990s, she became involved in the burgeoning field of organizational quality improvement, especially its application in the healthcare industry. In 1995, Ms. Gormley became Special Assistant to the Director of the Clinical Center serving as principal advisor on operational and governance issues, coordinating key staff projects, writing senior briefing materials, and making recommendations relating to continuous improvement of administrative and operational programs. After three years as Special Assistant, she advanced to the position of Chief, Administrative Management and Planning and was appointed to her current position in 1999.

Ms. Gormley led the multi-year activation effort for the 240-bed Mark O. Hatfield Clinical Research Center, which culminated in the patient move into the new hospital in April 2005. More recently her efforts have focused on improving the management of employee performance. Having trained all of the hospital's supervisors in the unique technical and interpersonal aspects of holding employees accountable in the federal sector, the Clinical Center has made strides in improving workforce accountability, a major factor in achieving ongoing cost reductions.

Connie Kasari, Ph.D.

Professor of Psychological Studies in Education and Psychiatry
University of California, Los Angeles

Connie Kasari, Ph.D. is Professor of Human Development and Psychology with a joint appointment in Psychiatry at UCLA, where she is the Principal Investigator for several multi-site research programs, including the Autism Intervention Research Network for Behavioral Health funded by HRSA, Characterizing Cognition in Nonverbal Individuals with Autism Intervention network by Autism Speaks, and Autism Intervention for Minimally Verbal Children with ASD in the Community by NIH. She received her Ph.D. from the University of North Carolina at Chapel Hill and was a NIMH postdoctoral fellow at the Neuropsychiatric Institute at UCLA. Since 1990 she has been on the faculty at UCLA where she teaches both graduate and undergraduate courses, and has been the primary advisor to more than 40 PhD students. She is a founding member of the Center for Autism Research and Treatment at UCLA and has been actively involved in autism research for the past 25 years, leading projects under the CPEA, STAART, and Autism Centers of Excellence programs from NIH. Her current research focuses on developing targeted interventions for early social communication development in at risk infants, toddlers and preschoolers with autism, and peer relationships for school aged children with autism. She is involved in several randomized controlled trials, with her most recent work involving multi-site studies for interventions aimed at underserved and under-represented populations of children with autism. She has published widely on topics related to social, emotional, and communication development and intervention in autism. She is on the treatment advisory board of the Autism Speaks Foundation, and regularly presents to both academic and practitioner audiences locally, nationally and internationally.

Helen Tager-Flusberg, Ph.D.

Director, Developmental Science Program
Boston University

Helen Tager-Flusberg received her Bachelors in Science in Psychology from University College London, and her doctorate from Harvard University. From 1978 through 2001 she was a Professor in the Department of Psychology at the University of Massachusetts – Boston and from 1996 – 2001 she also held the position of Senior Scientist at the Eunice Kennedy Shriver Center/UMass Medical Center. Since 2001 Dr. Tager-Flusberg has been at Boston University, initially with primary appointments in the Department of Anatomy and Neurobiology and Pediatrics in the School of Medicine and now as Professor of Psychology at Boston University, where she was the Director of the Developmental Science Program from 2009 to 2012. Dr. Tager-Flusberg has conducted research on autism and other neurodevelopmental disorders (including Williams syndrome, Down syndrome, Prader-Willi syndrome, 16p, and Specific Language Impairment) for over 35 years, investigating developmental changes in language and social cognition in these populations using behavioral and brain imaging methodologies. Her research has been funded by the National Institutes of Health and private foundations, including Autism Speaks, The Simons Foundation, the Autism Consortium, the Nancy Lurie Marks Family Foundation and the March of Dimes. Dr. Tager-Flusberg took NIH-funded research leadership roles as the Principal Investigator for the Boston University CPEA (Collaborative Programs of Excellence in Autism; 1997-2009), STAART (Studies to Advance Autism Research and Treatment; 2003-2009) and current ACE (Autism Center of Excellence; 2012-2017). She has edited four books and written over 170 journal articles and book chapters. Dr. Tager-Flusberg is currently the President of the International Society for Autism Research, serves on the editorial board of several professional journals and is Associate Editor of the Journal of Neurodevelopmental Disorders. She has presented her research at many professional conferences, parent advocacy group meetings, and training institutes.

Katherine Cargill-Willis

Program Specialist
Administration on Intellectual and Developmental Disabilities (AIDD)
Administration for Community Living (ACL)

Katherine Cargill-Willis has been a Program Specialist at the Administration for Intellectual and Developmental Disabilities (AIDD), formerly Administration for Developmental Disabilities for seven years. During her tenure at ADD she has been a project officer for University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) and the Developmental Disabilities Councils. Kathy is currently the project officer for the National Autism Resource and Information project and the data collection projects.

Before coming to ADD Kathy has been under contract with both the Ohio and Oregon Development Disabilities Councils. The Ohio Council tasked her with analyzing major federal legislation. For the Oregon Council she collected satisfaction data on personal assistance services in the state and she also was a co-author for a handbook explaining the Oregon Health Plan in layman's terms. Oregon was the place where Kathy received the foundation of her legislative and disability experience. She worked as a research assistant during two sessions of the Oregon Legislature. Her disability direct service experience includes serving as a Living Skills Instructor, a Skills trainer and a mobility trainer. She received her Bachelor of Arts in Political Science from Portland State University and her graduate work has focused on data analysis.

Kathy was born into a military family. Her father's job resulted in the family relocating frequently giving Kathy first-hand experience in a variety of segregated and inclusive educational settings. Currently Kathy and her husband, Henry, reside in Alexandria, Virginia.

Amy Goodman

Co-Director of Autism NOW Center
The Arc

Ms. Amy Goodman lives in Harpers Ferry, West Virginia. She is an individual on the autism spectrum, discovering she had Asperger's syndrome when in her 30s.

She earned her undergraduate degree from Regents College in New York and her Master's degree from Marshall University in Huntington, West Virginia in Special Education with a focus in autism. During that two year period, she participated in the College Program for students with Asperger's syndrome at the Autism Training Center (ATC) at Marshall University.

She is a member of the West Virginia Autism Society of America as a member at large. She was also a partner of Partners and Policy Making class of 2009-2010 sponsored by the West Virginia Developmental Disability Council.

She has worked as a Service Coordinator in the West Virginia Birth to Three Program and has also worked as a teacher's aide and presenter at a summer camp, Camp Gizmo, for individuals with developmental disabilities and their families for the past eight summers.

Lastly, she has participated in panels for individuals on the autism spectrum for the West Virginia's Autism Society's conferences in 2007, 2009, and 2011. She was also a panelist/speaker at an Asperger's conference in Kearney Nebraska. in 2007.

Now she works as Co-Director of Autism Now at The Arc of the U.S. in Washington D.C. She has been at this position since November of 2011 to the present. She has written a feature article for The Autism Advocate magazine sponsored by the Autism Society of America on Bullying in December 2012.

Karen Wolf-Branigin

Senior Program Officer
The Arc

Karen Wolf-Branigin is a Senior Program Officer with The Arc of the United States. Her responsibilities include leadership on several national programs including Autism Now, the National Autism Resource and Information project, funded by the Administration for Intellectual and Developmental Disabilities.

Before joining The Arc in March 2013, Karen served as Co-director of the National Center on Senior Transportation and as the Director of Training and Technical Assistance at Easter Seals Project ACTION, both located at Easter Seals. Her interest in accessible transportation includes research and support of the travel training profession. Karen came to Washington, DC in 2001 as a Joseph P. Kennedy Jr. Foundation Public Policy Fellow and she served in the Office of Senator John D. Rockefeller, IV.

Karen worked at the Developmental Disabilities Institute at Wayne State University Michigan's University Center on Disabilities for 12 years where she focused on employment and person-centered research, model demonstration programs and direct services. She authored and edited training curriculum for people working in direct services and was instrumental in establishing the Michigan Alliance of Direct Support Professionals.

Karen began her career working in direct service where she had the privilege of supporting people with intellectual and developmental disabilities and their families reach their dreams of living full lives in their communities. She learned her greatest lessons about oppression while working at a state institution which was finally closed in 1984.

Karen received her bachelor's degree in Music Therapy from Western Michigan University and an MSW in Social Welfare Policy and Planning from The University of Michigan.

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Presentation Presenter(s)


Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-Aged U.S. Children: 2007 to 2011-2012
(PDF – 488 KB)


Stephen Blumberg, Ph.D., Acting Associate Director for Science, Division of Health Interview Statistics, National Center for Health Statistics, Centers for Disease Control and Prevention; Michael D. Kogan, Ph.D., Director, Office of Epidemiology and Research, Health Resources and Services Administration


The National Survey of Children's Health : Background (PDF – 540 KB)


Michael D. Kogan, Ph.D., Director, Office of Epidemiology and Research, Health Resources and Services Administration


Project SEARCH at the National Institutes of Health (PDF – 1.4 MB)


Maureen E. Gormley, M.P.H., M.A., R.N., Chief Operating Officer, NIH Clinical Center


Autism Centers of Excellence
(PDF – 2.4 MB)


Alice Kau, Ph.D., Program Director, Autism Spectrum Disorders, Eunice Kennedy Shriver National Institute of Child Health and Human Development


NIH Workshop on Nonverbal School Aged Children (PDF – 158 KB)


Connie Kasari, Ph.D., Professor of Psychological Studies in Education and Psychiatry, University of California, Los Angeles


Minimally Verbal Children with Autism - Summary of NIH Workshop (PDF – 117 KB)


Helen Tager-Flusberg, Ph.D., Director, Developmental Science Program, Boston University


Communication growth in minimally verbal children with ASD (PDF – 703 KB)


Connie Kasari, Ph.D., Professor of Psychological Studies in Education and Psychiatry, University of California, Los Angeles


Minimally Verbal ASD: From Basic Mechanisms to Innovative Interventions
(PDF – 4 MB)


Helen Tager-Flusberg, Ph.D., Director, Developmental Science Program, Boston University


Autism NOW Website (PDF – 2.5 MB)


Katherine Cargill-Willis, Program Specialist, Administration on Intellectual and Developmental Disabilities, Administration for Community Living; Amy Goodman; Kevin Wenzel; Karen Wolf-Branigin, The Arc


Science Update (PDF – 604 KB)


Thomas Insel, M.D., Director, National Institute of Mental Health, Chair, IACC


IACC/OARC Update (PDF – 111 KB)


Thomas Insel, M.D., Director, National Institute of Mental Health, Chair, IACC; Susan A. Daniels, Ph.D., Acting Director, Office of Autism Research Coordination, Executive Secretary, IACC

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