Full Committee Meeting - April 8, 2014

Topic	Topic Description
Date:	Tuesday, April 8, 2014
Time:	9:00 a.m. to 5:00 p.m. Eastern
Place:	National Institutes of Health 31 Center Drive Building 31, C Wing, 6th Floor, Conference Room 10 Bethesda, Maryland 20892 Map and Directions
Webcast:	http://videocast.nih.gov
Cost:	The meeting is free and open to the public.
Agenda:	To discuss committee business, updates and issues related to ASD research and services activities.
Access:	Medical Center Metro Station (Red Line) On-site parking is available for a fee, but very limited. In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus.  All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit.
Registration:	On-site registration is from 8:30 a.m. to 9:00 a.m. Pre-registration is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis. Online pre-registration will close at 5:00 p.m. Eastern the day before the meeting. After that time, you will need to register onsite the day of the meeting.
Conference Call Access:	Dial: (888) 950-8042 Access code: 8689681
Materials:	Meeting materials
Deadlines:	Notification of intent to present oral comments: Tuesday, April 1, 2014 by 5:00 p.m. Eastern Submission of written/electronic statement for oral comments: Wednesday, April 2, 2014 by 5:00 p.m. Eastern Submission of written comments: Wednesday, April 2, 2014 by 5:00 p.m. Eastern Please note:  The NIMH Office of Autism Research Coordination (OARC) anticipates that written public comments received by 5:00 p.m. Eastern, Wednesday, April 2, 2014 will be presented to the Committee prior to the April 8th meeting for the Committee's consideration. Any written comments received after the 5:00 p.m. Eastern, April 2, 2014 deadline through April 7, 2014 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. Please read the IACC Public Comment guidelines.
Contact Person:	Ms. Lina Perez Office of Autism Research Coordination National Institute of Mental Health, NIH 6001 Executive Boulevard, NSC, Room 6182A Rockville, Maryland 20852 Phone: (301) 443-6040 E-mail: IACCPublicInquiries@mail.nih.gov
Public Comment:	Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. Eastern on Tuesday, April 1, 2014, 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 2, 2014. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on 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 2, 2014. The comments should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. Eastern, Wednesday, April 2, 2014 will be presented to the Committee prior to the meeting for the Committee's consideration. Any written comments received after the 5:00 p.m. Eastern, April 2, 2014 deadline through April 7, 2014 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. All written public comments and oral public comment statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record. Core Values: In the 2009 IACC Strategic Plan, the IACC listed the "Spirit of Collaboration" as one of its core values, stating that, "We will treat others with respect, listen to diverse views with open minds, discuss submitted public comments, and foster discussions where participants can comfortably offer opposing opinions."  In keeping with this core value, the IACC and the NIMH Office of Autism Research Coordination (OARC) ask that members of the public who provide public comments or participate in meetings of the IACC also seek to treat others with respect and consideration in their communications and actions, even when discussing issues of genuine concern or disagreement.
Please Note:	Remote Access: The meeting will be open to the public through a conference call phone number and webcast live on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the webcast or conference call, please send an e-mail to HelpDeskIACC@gmail.com or by phone at 415-652-8023. Special Accommodations: Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 5 days prior to the meeting. Security: In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus. All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver's license, or passport) and to state the purpose of their visit. Also 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. Meeting schedule subject to change.

Back to Top

On-site registration is from 8:30 a.m. to 9:00 a.m. Eastern for members of the public attending in person, and the meeting will also be available to the public by live webcast and conference call. The materials for the meeting can be found here.

Time	Event
9:00 a.m.	Welcome, Introductions, Roll Call and Approval of Minutes Thomas Insel, M.D. Director, National Institute of Mental Health (NIMH) Chair, IACC Susan Daniels, Ph.D. Director, Office of Autism Research Coordination (OARC), NIMH Executive Secretary, IACC
9:15 a.m.	Science Update Thomas Insel, M.D. Director, NIMH Chair, IACC
9:30 a.m.	CDC Prevalence Jon Baio, Ed.S. Epidemiologist U.S. Centers for Disease Control and Prevention (CDC)
10:00 a.m.	Birth to 5: Watch Me Thrive! Linda Smith Deputy Assistant Secretary and Inter-Departmental Liaison Early Childhood Development Administration for Children and Families (ACF)
10:15 a.m.	Break
10:30 a.m.	The BRAIN Initiative Story Landis, Ph.D. Director National Institute of Neurological Disorders and Stroke (NINDS)
10:50 a.m.	Congressionally Directed Medical Research Programs (CDMRP), Autism Research Program (ARP) Donna Kimbark, Ph.D. Program Manager, Autism Research Program, Congressionally Directed Medical Research Programs U.S. Department of Defense (DoD)
11:20 a.m.	National Database for Autism Research Gregory K. Farber, Ph.D. Director, Office of Technology Development and Coordination National Institute of Mental Health (NIMH)
11:40 a.m.	Teaching a Neurodiversity Course John Elder Robison Self Advocate, Parent, Author Neurodiversity Scholar in Residence College of William & Mary
12:00 p.m.	Lunch
1:00 p.m.	Public Comment
1:45 p.m.	Discussion of Public Comment
2:00 p.m.	Services Research for Autism Spectrum Disorder across the Lifespan (ServASD) Denise Juliano-Bult, M.S.W. Program Chief, National Institute of Mental Health (NIMH)
2:15 p.m.	Autism Policy Update Stuart Spielman, Esq. Senior Policy Advisor and Counsel Autism Speaks
2:30 p.m.	Committee Business Thomas Insel, M.D. Director, National Institute of Mental Health (NIMH) Chair, IACC Susan Daniels, Ph.D. Director, Office of Autism Research Coordination (OARC), NIMH Executive Secretary, IACC
3:30 p.m.	Break
3:45 p.m.	Committee Business - continued
4:00 p.m.	Round Robin
5:00 p.m.	Adjournment

Back to Top

The Interagency Autism Coordinating Committee (IACC) convened a meeting on April 8, 2014 from 9:00 a.m. to 5:04 p.m. at the National Institutes of Health in Bethesda, Maryland.

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

Participants:

Thomas Insel, M.D., Chair, IACC, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), NIMH; Idil Abdull, Somali American Autism Foundation; James Ball,^* Ed.D., BCBA-D, JB Autism Consulting; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Anshu Batra, M.D., Our Special Kids; Coleen Boyle, Ph.D., M.S. Hyg., Centers for Disease Control and Prevention (CDC); Josephine Briggs, M.D., National Center for Complementary and Alternative Medicine (NCCAM) (representing Francis Collins, M.D., Ph.D.); Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey,^* Ph.D., Left Brain Right Brain; Judith Cooper, Ph.D., NIDCD; Jose Cordero, M.D., M.P.H., University of Puerto Rico; Jan Crandy, Nevada State Autism Treatment Assistance Program; Geraldine Dawson,^* Ph.D., Duke University; Tiffany Farchione, M.D., U.S. Food and Drug Administration (FDA); Alan Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); 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) (representing Linda Birnbaum, Ph.D.); David Mandell, Sc.D., University of Pennsylvania; John O'Brien, M.A., Centers for Medicare and Medicaid Services (CMS); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; John Robison, Self Advocate, Parent and Author; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Linda Smith, Administration for Children and Families (ACF)

*Note: Attended by phone

Roll Call, Opening Remarks, and Approval of Minutes

The Interagency Autism Coordinating Committee (IACC) convened April 8, 2014. Dr. Thomas Insel called the meeting to order at 9:00 a.m. He mentioned that there were many activities planned for Autism Awareness Month (April). Dr. Susan Daniels called roll. The Committee then voted to approve the minutes from the January 14, 2014 meeting of the IACC as written.

Science Update

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

Dr. Insel gave a brief overview of select scientific advances in autism research that had taken place since the IACC had last met in January. He noted that the field was advancing so rapidly it would be impossible to review every recent finding.

Question 1 (Diagnosis): Dr. Insel summarized several notable findings related to diagnosis, including a study showing that as early as 12 months of age, a broad range of repetitive behaviors were highly elevated in children who went on to develop ASD,¹ and another study showing that genotypes were more similar within subgroups based on phenotypic severity compared with the data that was not categorized into subgroups.² Dr. Insel discussed a longitudinal study that found that 17 percent of younger siblings of children with ASD developed ASD, and another 28 percent showed delays or deficits in various areas of development or behavior. Importantly, differences in development were detectable using standardized assessment instruments by 12 months of age in many children.³

Question 2 (Biology): Dr. Insel spoke about a study showing that copy number variations (CNVs) that are known to confer risk of ASD or schizophrenia affected cognition in carriers of the CNVs.⁴ Based on carefully matched imaging studies, another group of researchers found evidence for reduced connectivity only in the right inferior longitudinal fasciculus of those with ASD, but found no general disruption of white matter tracts.⁵ Dr. Insel highlighted a study that showed areas of disruptions in the prefrontal cortex of children with ASD, providing additional evidence of changes during prenatal development associated with ASD.⁶ Specifically the findings – based on the use of molecular markers – supported probable dysregulation of layer formation and layer-specific neuronal differentiation during prenatal developmental stages (likely the second trimester). He noted that this study had gained much attention in the popular press.

Question 3 (Prevention): Dr. Insel highlighted a study that found that girls with ASD or other neurodevelopmental disorders had a greater number of aberrant CNVs and of another type of DNA mutation than boys.⁷ The findings add molecular-level evidence to the hypothesis that more extreme mutations are necessary to push girls over the ASD diagnostic threshold. Other prevention-related studies of note included one that found that ASD was three times more prevalent among preterm infants born earlier than 27 weeks,⁸ and the identification of a new autism syndrome caused by de novo mutations in a transcription factor.⁹

Question 4 (Treatment): Next Dr. Insel briefly described a study that showed improvement in socio-communication deficits in high-functioning men with autism with the use of intranasal oxytocin.¹⁰ Brain imaging showed increased activation in the medial prefrontal cortex with oxytocin treatment, suggesting a potential mechanism for this improvement. He also mentioned a longitudinal study of children, which found that both treatment (targeted social communication interventions) and symptomatology might influence growth in skills related to early core deficits.¹¹ Another study revealed that preschool-based treatment might produce changes in social communication in young children with autism.¹² He observed that the effect sizes were modest, but these were measureable changes.

Question 5 (Services): Dr. Insel noted that the services literature for the last few months was somewhat sparse, but he highlighted two studies. In the first, researchers looked at a large dataset and found that comorbidities were the greatest driver of family levels of dissatisfaction with health care and also had the greatest impact on the family's financial situation across all health care quality variables.¹³ Another set of researchers found that families with autistic children had significantly greater health care and aggregate nonhealth care costs.¹⁴

Question 6 (Adults): Next Dr. Insel discussed one study, which showed that childhood IQ proved to be a reliable predictor of cognitive function well into mid- to later adulthood for those with ASD.¹⁵ Notably, individuals who failed to progress in early language were at significant risk of more severe impairments in adulthood, and half of those in this group developed epilepsy. Dr. Insel also mentioned studies reporting poor employment outcomes for transition-aged individuals,¹⁶ and poor quality of life over the lifespan.¹⁷

Question 7 (Infrastructure): Dr. Insel spoke of two prevalence studies, one that found decreased ASD prevalence using the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) ^{18, 19} compared with the DSM-IV-TR,²⁰ and the newest ASD prevalence data from the Centers for Disease Control and Prevention (CDC).²¹ Lastly, he discussed a study in which researchers produced a transcriptional atlas of the prenatal human brain – a map of how RNA is expressed in the brain both in space and in time.²² This resource could provide substantial research opportunities related to fetal brain development at the molecular level, and was a key tool used in two papers featured in the 2013 IACC Summary of Advances.^{23, 24}

CDC Prevalence

Jon Baio, Ed.S., Epidemiologist, U.S. Centers for Disease Control and Prevention (CDC)

Mr. Jon Baio discussed the CDC's newly-released 2010 ASD prevalence data from the Autism and Developmental Disabilities Monitoring Network (ADDM). In 2010, the overall prevalence of ASD was 1 in 68 among children aged 8 years based on combined data from 11 sites across the United States (Alabama, Arkansas, Arizona, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Utah, and Wisconsin). This represented a 30 percent increase from the 2008 rate of 1 in 88 children. However, he cautioned that this rate represents a snapshot in time, is limited to 8-year-olds identified through these 11 sites. In addition, these children were identified through healthcare and educational records. Furthermore, the children had to have been identified as meeting the surveillance case definition for ASD. This methodology might not capture all children with ASD, he said. Mr. Baio also discussed prevalence differences within this population. The overall prevalence of ASD varied considerably by site - ranging from 5.7 per 1,000 in Alabama to 21.9 per 1,000 in New Jersey. However, he noted that no educational records were available in Alabama and three other states.

There were disparities between subpopulations, said Mr. Baio. Boys with ASD out-numbered girls 4.5 to 1, which translates to 1 in 42 boys compared with 1 in 189 girls. In addition, white children were 30 percent more likely than black children and 50 percent more likely than Hispanic children to be identified with ASD. Intellectual disability was another area of disparity. Overall, 46 percent of children had average or above average intellectual ability (IQ greater than 85). The prevalence of intellectual disability (IQ no greater than 70) was greater in girls than in boys. In terms of racial differences, the prevalence of average or above average intellectual ability was twice as great for white children than for black or Hispanic children. However, IQ data was limited to the seven sites with educational data, Mr. Baio noted. The overall earliest age of diagnosis was less than 60 months, which had not changed much over time. He noted that the study findings had a number of important implications:

• ASD continues to be an urgent public health issue. Prevalence estimates continue to increase in most ADDM Network communities, as well as in other large-scale studies.
• In this report, these increases were due in part to better identification, especially among certain subgroups. There is still concern about disparities in prevalence.
• While more children were recognized with ASD in 2010 than previously, it was concerning that 20 percent of children with ASD identified through study record review had not been classified with autism by community providers. In addition, ASD was not recognized as early as possible.

Mr. Baio also described a number of challenges inherent in performing this type of study. Prevalence estimates vary widely across time and location. CDC was conducting an intensive trends analysis (2000-2010). In addition, CDC would be comparing Diagnostic and Statistical Manual of Mental Disorders (DSM)-IV-TR²⁵ and DSM-5²⁶ diagnoses in the future. The 2014 data would be based on a new DSM-5-based case definition. Mr. Baio concluded by noting that CDC continuously published a number of interim reports and papers with additional analyses of study data, including the Community Report on Autism. (PDF – 12 MB)

Questions and Comments from the Committee

Dr. Jose Cordero asked for more detailed information about changes in prevalence over time in minority subpopulations. Mr. Baio said in the previous prevalence report²⁷ the greatest increases over time were in black and Hispanic s children. They attributed these increases to better identification, outreach efforts, and improved access to services in these groups. The researchers were working in these communities to understand these disparities and how to overcome identified barriers. Mr. John Robison asked if it might be possible that girls with autism were diagnosed at a later age, and were not picked up by this prevalence estimate because of the age cutoff of 8 years. Mr. Baio said that it would be very informative to study prevalence at an older age, and also to follow these children to age 12 in order to determine if the peak age of prevalence was 8 years. Mr. Robison also asked about health disparities. Mr. Baio said that children from minority racial/ethnicity groups were more likely to be identified only through the educational system, rather than by healthcare. Dr. Larry Wexler said that the U.S. Department of Education had released its Civil Rights Data Collection (CRDC) from the 2011-12 school years in March 2014. This collection included every school district nationwide. He noted that black and Hispanic children were consistently disproportionately identified with intellectual disability. Ms. Redwood asked about the 20 percent of children, who were not identified in the community. Mr. Baio said that most of the children who had not been identified in the community but rather by study reviewers had at least a concern about possible  ASD noted. Ms. Redwood also asked about the retention of an autism diagnosis over time. Dr. Baio noted that he and several co-investigators had authored a paper on this subject.²⁸ They compared data on children with an autism diagnosis in 2006, but without one in 2008 (as assessed by another clinician). The researchers still considered these children to have autism for surveillance purposes because they met the behavioral profile, and survey clinicians concurred. There was a brief discussion of an ongoing screening study in South Carolina, funded by Autism Speaks.

Birth to 5: Watch Me Thrive!

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

Ms. Linda Smith described the newly-launched Birth to 5: Watch Me Thrive! Program. The program's goal is to make screening tools available in the community, in order to provide universal screening as early as possible. The campaign's key messages are to celebrate developmental milestones; to implement universal developmental and behavioral screening and support; to improve early detection of autism; and to enhance developmental supports. Ms. Smith said that the initiative consists of three components: a compendium of reliable and valid screening instruments, user guides for the many different types of professionals who care for children (e.g., pediatricians, teachers, daycare providers, etc.), and a toolkit of awareness resources for parents and providers. The compendium provides a list of first-line screening instruments that could be used for children from birth to 5 years. The compendium also includes a series of tables and individual profiles for each tool, which provided basic information about the instruments. Ms. Smith emphasized that there were no valid and reliable screening tools in any languages other than English. The user guides are targeted for specific audiences to provide information on developmental milestones, how and where to refer parents when concerns were detected, and how to choose the appropriate tool. The toolkit includes a collection of federal resources to bring awareness to multiple audiences to provide information and encourage awareness of child development. The also toolkit includes: information on and checklists for developmental milestones, fact sheets on specific developmental disabilities or delays, and earning modules for different types of providers. Ms. Smith said that the Birth to Five: Watch Me Thrive effort includes an evaluation component as well. CDC planned to measure the impact of the program. Partner agencies would be measuring dissemination. The Help Me Grow Network would track changes in referral numbers.

Questions and Comments from the Committee

Dr. Cordero asked if/how this program was connected with Headstart and Early Headstart, especially with regard to low-income and minority children. Ms. Smith said that children were already screened through Headstart. She noted that a partnership between Early Headstart and early childcare providers would be launched in a few months. The goal was to screen more young children through this partnership. Ms. Idil Abdull pointed out the urgent need for screening and diagnostic tools that were culturally appropriate for minorities. She added that the older age, greater severity, and greater rate of intellectual disability at the time of autism diagnosis for black and Hispanic children pointed to need for greater awareness, and greater access to treatments and services. She asked how this program would ensure that early childcare providers were properly trained. Ms. Smith said that one issue was the need to put pressure on the private owners of existing screening tools to develop and validate these tools in other languages. She also said that ACF would be adding an initiative to train early childcare staff in the next year. Also, she mentioned that a federal childcare regulation was being re-written, and the new version would require more training of the childcare workforce. Dr. Anshu Batra asked if there was an abridged version for pediatricians to help them identify tools by summarizing information on cost and time to administer. She also suggested partnering with the American Academy of Pediatrics (AAP) to improve dissemination, and perhaps develop training for clinicians and staff. Ms. Smith said that they already had worked with AAP and other professional groups during the development of this program.

The BRAIN Initiative

Story Landis, Ph.D., Director, National Institute of Neurological Disorders and Stroke (NINDS)

The President's Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative – announced in 2013 – was aimed at "learning the language of the brain." The goal was to provide new tools to "get a dynamic picture of the brain in action." Dr. Story Landis described the aims of this project, with special emphasis on the NIH's research strategies. The aim of the BRAIN initiative in the first 5 years was to accelerate the development and application of innovative technologies, which could be used to construct dynamic pictures of brain function - integrating neuronal and circuit activity over time and space. The NIH was a major part of this initiative, and had created a Working Group to articulate the scientific goals for NIH research under BRAIN and to develop a research plan. In September of 2013, this panel of experts identified high-priority research areas for FY14 funding. Since then, the NIH issued six Requests for Applications (RFAs), which would be reviewed and funded by September 2014. In addition, the Working Group would complete a final research plan by June 2014, complete with timetables, milestones, and costs. The Interim Report (available online) outlined the nine recommended high priority research areas: a cell type census; structural maps of the brain; new large-scale network recording capabilities; a suite of tools for circuit manipulation; linkages of neuronal activity to behavior; integration of theory, modeling, statistics, and computation with experimentation; delineation of mechanisms underlying human imaging technologies; mechanisms to enable collection of human data; and dissemination of knowledge and training. Dr. Landis also provided examples of RFAs and plans from other federal agencies. She summarized by saying that the BRAIN Initiative's emphasis was on tools to enhance many areas of brain research and methods for deeper understanding of all brain disorders. However, technology was not an end in itself. Rather it provided the means of acquiring fundamental insight about nervous system function in health and disease. Dr. Landis said that the NIH's approach was to ask key questions, but not to dictate solutions.

Questions and Comments from the Committee

Dr. Batra asked how the initiative would help patients, whether clinicians were involved in the Working Group. Dr. Landis said that the initial aim was to develop tools; no clinicians were part of the Working Group. She noted that there was interest in mapping a connectome for the developing brain, as part of the Human Connectome Project. This project uses cutting-edge brain imaging technologies to map the circuitry of the healthy adult human brain. Dr. Landis said that such a map of the typically-developing brain could be used for comparison to better understand brain disorders like autism. This could ultimately help clinicians.

Congressionally Directed Medical Research Programs (CDMRP), Autism Research Program (ARP)

Donna Kimbark, Ph.D., Program Manager, Autism Research Program, Congressionally Directed Medical Research Programs, U.S. Department of Defense (DoD)

Dr. Donna Kimbark presented an overview of organization, mission, function, and funding of the Congressionally Directed Medical Research Programs (CDMRP) and its Autism Research Program (ARP). She said that CDMRP was not funded through the Department of Defense's (DoD's) multi-year budget. Instead, research funds were added yearly to the DOD budget by Congress to fund the CDMRP. Dr. Kimbark noted that the vision was adapted yearly with award mechanisms changing as needed. In addition, advocates participated throughout program execution. The program's vision was to improve the lives of individuals with autism spectrum disorders now. Their mission was to promote innovative research that advanced the understanding of autism spectrum disorders and led to improved outcomes. Each year, the program set its award areas of interest, focusing on highly innovative and high-impact research. These areas of interest were based on areas of need determined by the panel. In addition, they considered research at other federal agencies, to avoid duplication of efforts.

The FY2014 areas of interest included:

• (Clinical Trial Award) Behavioral and other non-pharmacological therapies
• (Clinical Trial Award) Pharmacological treatments in autism or well-defined subgroups of autism (e.g., genetic, phenotypic, co-occurring conditions)
• (Clinical Trial Award) Dissemination/implementation of established, efficacious behavioral interventions
• (Clinical Trial Award) Therapies to alleviate conditions co-occurring with ASD (e.g., sleep disturbances, gastro-intestinal issues, aggression, depression, anxiety)
• (Ideas Development Award) Environmental risk factors
• (Idea Development Award) Mechanisms of heterogeneous clinical expression or response to treatment of ASD, excluding new gene discovery
• (Idea Development Award) Mechanisms underlying conditions co-occurring with ASD (e.g., sleep disturbances, gastro-intestinal issues, aggression, depression, anxiety)
• (Idea Development Award) Novel therapeutics using valid preclinical models
• (Idea Development Award) Psychosocial factors promoting success in key transitions to independence for individuals living with ASD

Dr. Kimbark also briefly discussed how ARP funding mapped to IACC Strategic Plan questions between FY07 and FY12. She then provided brief descriptions of examples of studies funded through ARP, including two related to advancing access through technology, two related to advancing independence of individuals with ASD, and one related to understanding relationships between the immune system and ASD. She also listed examples of studies funded in FY13 through Idea Development Awards, and those funded as Pilot Awards.

Questions and Comments from the Committee

Mr. Robison asked whether there was a way to ensure that CDRMP-funded studies did not duplicate research funded by other agencies. Dr. Kimbark said that those involved in setting the yearly research vision and those involved in programmatic review were provided with information from other agencies regarding previous and ongoing funded research. Panel members discussed this information, and subject matter experts reviewed these studies to ensure there was no overlap. They also reviewed current or pending funding associated with applications. If there was overlap with funding from other agencies, CDMRP often asked that the application be withdrawn or altered in order to avoid duplication. Ms. Redwood commented that that this program was unique in that advocates, parents, and others participate in funding decisions. They also noted that DoD uses a two-tiered review process. Dr. Insel added that the NIH also used a two-tiered review process. The first tier of review was a peer review of scientific merit. The second review tier included many stakeholders (e.g. providers, patients, family members). Dr. Insel added that the NIH also used a two-tiered review process, with scientific review followed by Council review, prior to funding decisions.

National Database for Autism Research

Gregory Farber, Ph.D., Director, Office of Technology Development and Coordination, National Institute of Mental Health (NIMH)

Dr. Gregory Farber provided an overview and an update of recent and upcoming enhancements to the National Database for Autism Research (NDAR). This NIH-supported data repository contained data from almost 70,000 human subjects related to autism (and control subjects), approximately 400 terabytes of brain imaging, and genomic data. This data was securely stored in the "computational cloud" (a network of computer servers), but is freely accessible, he said. NDAR included data from federal and private autism repositories. Two key features allowed data standardization and aggregation, making this collection possible: data dictionaries and the Global Unique Identifier (GUID). Data dictionaries provided a common language for researchers to define the complex language of autism research (clinical, genomic, imaging, etc.). Dr. Farber said that this standardization of data submitted to NDAR makes data queries across all data sources (e.g. IAN, AGRE) possible. More than 50,000 unique data elements have been included by the research community. The other key feature is the GUID, which is a universal subject ID that allowed researchers to share data related to a study participant. The GUID protects a participant's personally identifiable information. Dr. Farber said that researchers could query by any data element, (e.g. query by researcher). They were also working on developing concept queries (e.g. repetitive behaviors) to provide users with another search tool. Dr. Farber briefly described some of the ways, in which NDAR data was being used (published papers and grant applications).

Teaching a Neurodiversity Course

John Elder Robison, Self Advocate, Parent, Author, Neurodiversity Scholar in Residence, College of William & Mary

Mr. Robison said that the new Neurodiversity Program at the College of William & Mary had two aspects. The first was how to make students more aware of neurodiversity, and how to support neurodiverse individuals, such as those with ASD. The other aspect was the need for courses to help neurodiverse people succeed in a college environment, such as social relations, organization, and executive function challenges. However, he noted that these were courses that also could benefit everyone. This is the direction that higher education would need to move in the future, as children with autism became college-aged.

Questions and Comments from the Committee

Dr. Batra asked about the course curriculum. Mr. Robison said that for the program's first course, it was unclear whom the course would attract. So they planned for a mixture of individuals interested in neurodiversity (such as psychology students) or neurodiverse individuals. Speakers addressed neurodiversity and the law, education, dating and relationships, organization, and job skills, among other topics. Mr. Robison said that ultimately he would like to see this course become expanded to a group of courses. Then students so could major in psychology or education, for example, with a concentration in neurodiversity. Mr. Robison also noted that one challenge of this program was that neurodiverse individuals must meet the rigorous qualifications to attend William & Mary. This could be very difficult for individuals with ASD, who struggle at the high school level. Pathways were needed to help neurodiverse individuals make it to college.

Public Comments

Carolyn Gammicchia expressed disappointment in the results of federal autism research She said that programs, such as Supplemental Security Income (SSI) and Medicaid funds should continue to be funded.

Dawn Loughborough expressed her opinion that there had been no meaningful advances in the prevention of regressive autism or treatments for co-occurring conditions.

Holly Bortfeld expressed her concern about the duplication of effort highlighted in the GAO report. She said that improved medical treatment of co-occurring conditions of those with autism was needed. In addition, plans were needed to care for children, who would be soon aging out of child services and support programs.

Cassandra Oldham shared her family's story of the search for treatments for two of her sons, who were diagnosed with autism. She told how treatment of their comorbid conditions improved their sleep and decreased their self-injurious behaviors. She urged the Committee to address environmental toxins.

Deanna Mulvihill, R.N., Ph.D., shared the story of two of her grandchildren diagnosed with regressive autism and mitochondrial disease. She said that many healthcare providers do not recognize symptoms of mitochondrial disorders, or do not treat them, and that treatments that help often are not covered by insurance.

James Williams discussed major chronic biomedical issues that he developed along with his autism. Based on his experience, he asked the IACC to foster research on these biomedical issues – immune system complications, symptoms of schizophrenia, and others. He said that more research was needed on a holistic approach to diagnosis and treatments.

Desireé Kameka said that affordable housing and services demands far exceeded need in the autism community, and the nation was facing an autism services crisis. She said that research on autism-specific supports for adults was greatly needed.

JaLynn Prince spoke about the increasing number of adults with autism – whether diagnosed or not. Many of these individuals don't qualify for or have limited services, live with aging parents, are on the streets, or in jail. She described three different cases, each affected in different ways by lacking or poor services. She said that this problem area would continue grow, and that action was needed to address these issues.

Eileen Nicole Simon, Ph.D., R.N. expressed her view that injury of auditory centers in the brain, due to cord clamping/asphyxia immediately after birth, may play a role in the development of autism – in particular language and hearing problems. She shared her son's story and his difficulties with language and hearing. She asked the IACC to discuss the role of clamping/asphyxia in damage to the brainstem auditory pathway.

Linda Varsou, Ph.D. discussed the impact of chronic parental denial of autism diagnoses. She also noted that autism-friendly education (such as the program at the College of William and Mary) and an autism-friendly society would allow individuals with autism to succeed.

Bobby Enayati shared the story of his brother with regressive autism, who lost speech and cognitive abilities after receiving childhood vaccinations. He questioned the balance of benefits against the harms related to vaccination.

Albert Enayati expressed his frustration regarding the amount of money spent on autism research, which had not yielded results that would have a direct benefit to his son. He asked that the subject of regressive autism be included as part of the agenda of the July IACC meeting and representatives from FDA and the National Vaccine Advisory Council be present. He briefly discussed his theory that vaccines contaminated with human cells could contribute to cases of autism.

Questions and Comments from the Committee

Mr. Robison commented that regressive autism was repeatedly a topic of public comments, and might represent a separate phenotype that should be studied. He added that the Committee should address legal system issues. Dr. Tiffany Farchione responded to a comment about DNA fragments in vaccines. She shared a statement from from the FDA's Center for Biologics Evaluation and Research, saying  that there are no scientific studies to support the proposed mechanism for development of autism based on injection of DNA fragments, and that there is no plausible epidemiological evidence associating vaccination with autism. In addition, the statement continued that there is considerable data supporting the safety of tumor-related cell lines in vaccine production.

Next, the subject of housing and residential needs of autistic individuals was brought up, and the suggestion was made to include this issue and at a future IACC meeting. In particular, there was interest in the state plans and Medicaid/Medicare role. Next Dr. Insel noted that a large healthcare system-based study of vaccinated versus unvaccinated high-risk siblings had been completed. This study would afford the opportunity to assess the risks of the development of autism and the risks of medical conditions in these populations. Dr. Insel mentioned that the study was being peer reviewed, and that if ready, the results possibly could be presented at the July IACC meeting. Ms. Redwood asked if there was any update regarding studies of regression. Dr. Insel said that they could invite an expert to speak to the Committee about this at a future meeting. There also was a brief discussion of the need to identify ASD subgroups, in order to conduct better clinical trials, and find better and more targeted therapies.

Autism Policy Update

Stuart Spielman, Esq., Senior Policy Advisor and Counsel, Autism Speaks

Mr. Stuart Spielman provided an overview of the Achieving a Better Life Experience (ABLE) Act of 2013 draft legislation under consideration by Congress. This legislation would change Internal Revenue code to encourage families/individuals to save for the needs of an individual with a disability, including post-secondary education, housing, transportation, health/wellness needs, and miscellaneous needs. The ABLE Act would provide the opportunity to supplement benefits provided through private insurance, employment, the supplemental security income (SSI) program, the Medicaid program, or other sources. ABLE accounts would fill a large need by allowing families and individuals to save for future expenses, which currently was not possible. It was comparable to a 529 account, which was used to save for college expenses. ABLE accounts would be available for individuals who received SSI or disability benefits, and others who met certain criteria. Mr. Spielman said that importantly a key feature of ABLE accounts was that families would not be forced to choose between these accounts or SSI and Medicaid. The bill provided that if assets in an ABLE account reached $100,000, any monthly SSI benefits would be suspended but not terminated, and suspension of SSI benefits would have no impact on an individual's Medicaid eligibility. Finally, he noted that these accounts would not be taxed.

Questions and Comments from the Committee

Mr. Spielman was asked to comment on special needs trusts. He said that ABLE accounts were not intended to supplant special needs trusts. The accounts simply offered another choice. Dr. David Mandell commented that ABLE accounts could be a more accessible savings option for families with fewer means. He added that this could be a means of paying for housing for individuals who didn't qualify for housing under other means. However, the $100, 000 cap was low.

Service Research for Autism Spectrum Disorder across the Lifespan (ServASD)

Denise Juliano-Bult, M.S.W., Program Chief, National Institute of Mental Health (NIMH)

Ms. Denise Juliano-Bult presented an overview of recent NIMH Requests for Applications (RFAs) related to autism research. In particular, RFAs sought studies on interventions to engage individuals and on services, with the goal of improving functional and health outcomes, with ASD services that targeted services. The RFAs each focused on a different age group. These included research on early identification and linkage to services, a pilot study on services for transition-age youth, and a pilot study on services for adults with ASD. Ms. Juliano-Bult noted that these areas of focus were based in part on the 2012 IACC Strategic Plan, and reflected three of the Strategic Plan Questions. Research on early identification and linkage to services, related to Question 1 (When should I be concerned?). The intention of this RFA is to develop a single intervention to coordinate screening, evaluation, and the linkage of families with services by age 2. The intervention would be tested for feasibility, effectiveness, ease of implementation and generalizability, and work to reduce disparities in underserved groups. The pilot study on services for transition-age youth related to Question 5 (Where can I turn for services?). This study was intended to develop service strategies for helping young people with ASD and their families to transition from youth-based services to adult services without lapses. Another goal was to enhance functioning in post-secondary education, training/employment, social, familial, and other settings, while maintaining health and quality of life. Lastly, the pilot study on services for adults mapped to Question 6 (What does the future hold, particularly for adults?) The aim of this study was to develop strategies to optimize independence – particularly in employment or training; community housing and safety; social relationships; and physical and mental health. Ms. Juliano-Bult said that NIMH had accepted 36 applications, and these were currently under review. The projects could start as early as July 2014.

Questions and Comments from the Committee

Ms. Abdull asked about reducing disparities in underserved communities in these RFAs/studies. Ms. Juliano-Bult said that applicants were requested to address this issue in their proposals. However, the specific strategy was proposed by the researchers. She added that the issue of disparities is a consideration that reviewers weigh in the decision process. Dr. Mandell commented that it was time to move beyond documenting existing disparities, and to begin investigating ways to reduce disparities.

Dr. Insel added that the reduction of disparities was an area of increasing need and interest. He also pointed out that these RFAs wouldn't have received this financial commitment without the IACC's Strategic Plan and public comments.

Committee Business

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

Dr. Daniels updated the Committee on several IACC publications and upcoming events. She reported that the Combating Autism Act Report to Congress²⁹ was released in February 2014. This report, which was available on the IACC Website, encompassed information on autism-related activities and programs of agencies and offices within HHS, and other federal agencies. The IACC had also released a Statement on the research and policy and practice implications of the changes of diagnostic criteria in the DSM-5.³⁰ Dr. Daniels also provided previews of the 2013 Summary of Advances and the 2013 Strategic Plan Update. She noted that the ASD State of the States of Services and Supports ³¹ report by CMS had been released in January 2014. Several events were planned for Autism Awareness Month in April, including a NIMH Special Lecture, featuring author Ron Suskind on April 24, 2014.

Ms. Alison Singer provided a brief update regarding a letter that several IACC public members had sent to the U.S. Government Accountability Office (GAO) in response to the agency's 2013 report on autism activities. She summarized the response letter (PDF – 116 KB; Secure Document. 508 Compliance not Available) from the agency. The Committee discussed possible actions, but agreed to take no further action.

Co-Occurring Conditions Planning Group Update

The Committee next discussed the formation of a Co-occurring Conditions Planning Group. Dr. Daniels suggested that based on earlier IACC discussions the Group's goal be to develop and complete a project to address conditions that co-occur with ASD. Several members had volunteered to participate in this group, including: Dr. Insel, Ms. Redwood, Dr. Batra, Dr. Sally Burton-Hoyle, Dr. Judith Cooper (representing Dr. James Battey), Ms. Jan Crandy, Dr. Alice Kau (representing Dr. Alan Guttmacher), Dr. Kimbark, Dr. Koroshetz, and Ms. Singer. Ms. Redwood said that the charge of the Group should be to advance the understanding of the scope and causes of co-occurring conditions, along with the development of assessments and treatment guidelines in order to improve quality of life. She outlined several objectives, including identification of conditions, existing treatment guidelines, and novel/untested treatments. She also suggested several possible Workgroup deliverables. Dr. Judith Cooper said that each of these topics was worthy of an IOM workshop. She suggested identifying short and longterm goals, priorities, and experts. Dr. Koroshetz said that they should not lose focus. In order to improve care, they should identify gaps. Dr. Insel noted that federal advisory committees do not develop treatment guidelines and best practices. This was done primarily by professional medical societies. He suggested that one strategy might be to work as collaborative effort with AAP, the American Academy of Neurology, the American Academy of Child and Adolescent Psychiatry, and/or others. Ms. Redwood commented that such an effort was particularly needed for metabolic and immune issues. Dr. Insel suggested that the IACC could hold a workshop focused more on these areas, and could invite representatives from professional societies. Dr. Koroshetz suggested holding a public phone call with representatives from relevant societies to discuss possible next steps. Dr. Daniels said that OARC would need guidance on the topic and suggestions for external experts to include. Dr. Batra and Ms. Redwood suggested including clinicians and parents in the process. Ms. Abdull said that research in this area was an urgent need. Parents needed evidence and guidance about the efficacy of treatments for co-occurring conditions. She added that it would also be necessary to make pediatricians and other clinicians aware of these co-occurring conditions and any treatment guidelines. Dr. Mandell suggested several possible deliverables for the Working Group guidance on screening children with autism for co-occurring conditions or recommendations for a standard of care for physical comorbidities when kids present with ASD. Another option would be a call for the identification of knowledge gaps and to encourage research in this area. The Working Group could also issue a call for professional societies and other organizations to develop guidelines on the care of children with autism and specific comorbid conditions. Lastly, he suggested looking into how to use guidelines to change practice in the community. Ms. Redwood commented that the Working Group should focus on co-occurring conditions without existing guidelines. Dr. Daniels summarized the next steps. OARC would set up a conference call and workshop. Dr. Insel suggested working with the AAP to see if they could hold the workshop. Dr. Daniels said that this could be part of the discussion of the conference call. Dr. Insel said that members of the Working Group could contact the AAP or other experts about this topic, and share any information with the Committee. Dr. Daniels said that OARC would plan a date for a conference call in May, and might contact the professional organizations about interest in this process.

Round Robin

The Round Robin discussion focused on the CDC prevalence study, as IACC members had additional questions. Dr. Mandell asked whether the data constituted a true prevalence. Dr. Boyle replied that it was a snapshot in time, which the CDC refers to as identified prevalence. Several members commented about the need for longitudinal studies to see whether early screening and diagnosis could change prevalence rates over time, and also to determine whether prevalence changes as children reach adolescence and adulthood. Dr. Boyle said that CDC hoped that followup with the cohort of 4-year-old children at 8 years would provide some information. Dr. Guttmacher noted that National Children's Study (NCS) would follow children prenatally through 21 years of age, and would provide this type of data for children with autism. He said that enrollment would begin in the next 2-2.5 years. Dr. Insel asked what steps were needed to accurately define ASD prevalence. Dr. Boyle said that the ongoing South Carolina Children's Educational Surveillance Study (SUCCESS) was performing community screening, and perhaps the Committee should get an update on this study. Dr. Lawler pointed out that the changes in prevalence over time and what factors were involved were the important questions. However, this was very difficult to measure. Dr. Boyle noted that the CDC had a group working on how to answer these questions. She pointed out, though, the prevalence numbers from the ADDM sites were important to the community in order to understand needs and services. Dr. Wexler pointed out the socioeconomic prevalence data would be needed to understand and reduce disparities. He added that analysis of nationwide education records for children with ASD bears this out a relationship between prevalence and socioeconomic status. However, this data and analysis is not as precise and rigorous as CDC's. Ms. Abdull asked why there were disparities in in early identification in the education system that should not be related to socioeconomic status. Dr. Wexler said that children may be labeled with a condition other than ASD, but they did receive services.

Closing Remarks

Dr. Daniels noted that the next full IACC meeting would be held on July 8, 2014. Dr. Insel thanked the members for their participation.

Adjournment

The meeting was adjourned at 5:04 p.m.

Certification

These minutes of the Interagency Autism Coordinating Committee (IACC) were approved by the Committee on July 8, 2014.

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

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

References

¹ Wolff JJ, Botteron KN, Dager SR, et. al. Longitudinal patterns of repetitive behavior in toddlers with autism. J. Child Psychol. Psychiatry. 2014 Feb. [Epub ahead of print] [PMID: 24552513]

² Veatch OJ, Veenstra-VanderWeele J, Potter M, Pericak-Vance MA and Haines JL. Genetically meaningful phenotypic subgroups in autism spectrum disorders. Genes Brain Behav. 2014 Mar; 13(3):276–85. [PMID: 24373520]

³ Ozonoff, S. et al. The Broader Autism Phenotype in Infancy: When Does It Emerge? J. Am. Acad. Child Adolesc. Psychiatry. 2014 Apr;53(4):398-407.e2. [PMID: 24655649]

⁴Stefansson H, Meyer-Lindenberg A, Steinberg S, Magnusdottir B, et. al. CNVs conferring risk of autism or schizophrenia affect cognition in controls. Nature. 2014 Jan; 505(7483):361–6. [PMID: 24352232]

⁵ Koldewyn K, Yendiki A, Weigelt S, et. al. Differences in the right inferior longitudinal fasciculus but no general disruption of white matter tracts in children with autism spectrum disorder. Proc. Natl. Acad. Sci. 2014 Feb; 111(5):1981-6. [PMID: 24449864]

⁶ Stoner R, Chow ML, Boyle MP, et. al. Patches of Disorganization in the Neocortex of Children with Autism. N. Engl. J. Med. 2014 Mar; 370(13):1209–19. [PMID: 24670167]

⁷ Jacquemont S, Coe BP, Hersch M, et. al. A Higher Mutational Burden in Females Supports a 'Female Protective Model' in Neurodevelopmental Disorders. Am. J. Hum. Genet. 2014 Mar; 94(3):415–25. [PMID: 24581740]

⁸ Kuzniewicz MW, Wi S, Qian Y, Walsh EM, Armstrong MA, Croen LA. Prevalence and Neonatal Factors Associated with Autism Spectrum Disorders in Preterm Infants. J. Pediatr. 2014 Jan; 164(1):20–5. [PMID: 24161222]

⁹ Helsmoortel C, Vulto-van Silfhout AT, Coe BP, et. al. A SWI/SNF-related autism syndrome caused by de novo mutations in ADNP. Nat. Genet. 2014 Feb; 46(4):380–4. [PMID: 24531329]

¹⁰ Watanabe T, Abe O, Kuwabara H, et. al. Mitigation of Sociocommunicational Deficits of Autism Through Oxytocin-Induced Recovery of Medial Prefrontal Activity: A Randomized Trial. JAMA Psychiatry. 2014 Feb; 71(2):166. [PMID: 24352377]

¹¹ Gulsrud AC, Hellemann GS, Freeman SFN, Kasari C. Two to Ten Years: Developmental Trajectories of Joint Attention in Children With ASD Who Received Targeted Social Communication Interventions. Autism Res. 2014 Mar; n/a–n/a. doi:10.1002/aur.1360 [PMID: 24550145]

¹² Kaale A, Fagerland MW, Martinsen EW, Smith L. Preschool-Based Social Communication Treatment for Children With Autism: 12-Month Follow-Up of a Randomized Trial. J. Am. Acad. Child Adolesc. Psychiatry. 2014 Feb; 53(2):188–198. [PMID: 24472253]

¹³ Zablotsky B, Kalb LG, Freedman B, Vasa R and Stuart EA. Health Care Experiences and Perceived Financial Impact Among Families of Children With an Autism Spectrum Disorder. Psychiatr. Serv. 2014 Mar; 65(3):395. [PMID: 24584528]

¹⁴ Lavelle TA, Weinstein MC, Newhouse JP, Munir K, Kuhlthau KA and Prosser LA. Economic Burden of Childhood Autism Spectrum Disorders. Pediatrics 2014 Mar; 133(3):e520–e529. [PMID: 24515505]

¹⁵ Howlin P, Savage S, Moss P, Tempier A and Rutter M. Cognitive and language skills in adults with autism: a 40-year follow-up. J. Child Psychol. Psychiatry. 2014 Jan; 55(1):49–58. [PMID: 23848399]

¹⁶ Burgess S and Cimera RE. Employment Outcomes of Transition-Aged Adults With Autism Spectrum Disorders: A State of the States Report. Am. J. Intellect. Dev. Disabil. 2014 Jan; 119(1):64–83. [PMID: 24450322]

¹⁷ Van Heijst BF and Geurts HM. Quality of life in autism across the lifespan: A meta-analysis. Autism Int. J. Res. Pract. 2014 Jan. [Epub ahead of print] [PMID: 24443331]

¹⁸American Psychiatric Association. 2013. Diagnostic and statistical manual of mental health disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.

¹⁹ Maenner MJ, Rice CE, Arneson CL, et. al. Potential Impact of DSM-5 Criteria on Autism Spectrum Disorder Prevalence Estimates. JAMA Psychiatry. 2014 Mar; 71(3):292. [PMID: 24452504]

²⁰ American Psychiatric Association. 2000. Diagnostic and statistical manual of mental disorders: DSM-IV-TR (4th ed., text rev.). Washington, DC: American Psychiatric Publishing.

²¹ Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. 2014 March 28;63 Suppl 2:1-21. [PMID: 24670961]

²² Miller JA, Ding SL, Sunkin SM, et. al. Transcriptional landscape of the prenatal human brain . Nature. 2014 Apr 10;508(7495):199-206. [PMID: 24695229]

²³ Parikshak NN, Luo R, Zhang A, et. al. Integrative functional genomic analyses implicate specific molecular pathways and circuits in autism. Cell. 2013 Nov 21;155(5):1008-21. [PMID: 24267887]

²⁴ Willsey AJ, Sanders SJ, Li M, Dong S, et. al. Coexpression networks implicate human midfetal deep cortical projection neurons in the pathogenesis of autism. Cell. 2013 Nov 21;155(5):997-1007. [PMID: 24267886]

²⁵ American Psychiatric Association. 2000. Diagnostic and statistical manual of mental disorders: DSM-IV-TR (4th ed., text rev.). Washington, DC: American Psychiatric Publishing.

²⁶ American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Health Disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.

²⁷ Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report. March 30, 2012. 61(SS03); 1-19. [PMID: 22456193]

²⁸ Wiggins LD, Baio J, Schieve L, Lee LC, Nicholas J, Rice CE. Retention of autism spectrum diagnoses by community professionals: Findings from the ADDM Network, 2000 and 2006. J Dev Behav Pediatr. June 2012. [PMID: 22580734]

²⁹ U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 - FY 2012). February 2014. Retrieved from the Department of Health and Human Services Interagency Autism Coordinating Committee website

³⁰ DSM-5

³¹ L&M Policy Research, LLC (On behalf of the Centers for Medicare & Medicaid Services). Autism Spectrum Disorders (ASD): State of the States of Services and Supports for People with ASD (PDF – 2 MB). January 24, 2014. Retrieved from the Centers for Medicare & Medicaid Services Medicaid website

Back to Top

Jon Baio, Ed.S.

Dr. Baio is an Epidemiologist with the Developmental Disabilities Branch in the National Center on Birth Defects and Developmental Disabilities of the U.S. Centers for Disease Control and Prevention, where he has worked since 1996. He serves as Team Lead for developmental disabilities surveillance and as Principal Investigator on the Autism and Developmental Disabilities Monitoring, Network, studying the prevalence of autism and other developmental disabilities in several communities throughout the United States.

Gregory K. Farber, Ph.D.

Dr. Farber has a B.S. from the Pennsylvania State University (Penn State) in chemistry (1984) and a Ph.D. from the Massachusetts Institute of Technology in physical chemistry (1988). His research in graduate school involved determining the three-dimensional structure and mechanism of the enzyme xylose isomerase in the laboratory of Dr. Gregory A. Petsko. After graduate school, Dr. Farber received a Life Sciences Research Fellowship to work on mechanistic enzymology with Dr. W. W. Cleland at the University of Wisconsin. Following his postdoctoral fellowship, he returned to Penn State as an Assistant Professor of Biochemistry and rose to the rank of Associate Professor with tenure in 1998. Dr. Farber's research included work on structural movies of enzyme action, molecular evolution, and mechanistic enzymology.

Following a sabbatical year in the Division of Biological Infrastructure at the National Science Foundation, he decided to stay in Government service. Dr. Farber moved to the National Center for Research Resources (NCRR), part of NIH, in 2000, where he managed a number centers and individual investigator awards in technology development and bioinformatics, as well as a cohort of interdisciplinary research centers. He concluded his service at NCRR as Director of the Office of Extramural Activities and Director of the Office of Construction Grants.

In June 2011 Dr. Farber became the Director of the Office of Technology Development and Coordination at the National Institute of Mental Health (NIMH). The Office is responsible for coordinating all technology development and bioinformatics activities at NIMH, overseeing the National Database for Autism Research, managing the Human Connectome Project on behalf of the NIH Neuroscience Blueprint, and overseeing the NIMH small-business program.

Denise Juliano-Bult, M.S.W.

Ms. Juliano-Bult is Chief of the Systems Research Program and the Disparities in Mental Health Services Research Program in the Division of Services and Intervention Research at the National Institute of Mental Health (NIMH). In this position she administers a research portfolio that supports studies on the organization and delivery of mental health and related services across a spectrum of settings, including the criminal justice system, housing and social services, college mental health, and studies on services for people with autism spectrum disorders. Ms. Juliano-Bult is also an Adjunct Instructor of Research Methods at the National Catholic School of Social Services' Master of Social Work program and in The George Washington University's Art Therapy Master of Arts Degree program.

Previously, she served as Director of Program and Community Development for the Depression Awareness, Recognition, and Treatment (D/ART) program, a research dissemination activity of the Extramural Research Program at NIMH. Previously, as Chief of Allied Health in the NIMH Division of Intramural Research, Ms. Juliano-Bult supervised the clinical services provided to persons with schizophrenia who were enrolled in inpatient studies, including recruiting and screening participants for the studies.

Ms. Juliano-Bult has a master's degree in social work from the Catholic University of America and a B.A. degree in psychology from the Honors College at the University of Michigan. Prior to joining the Federal Government, Ms. Juliano-Bult worked as a social worker and therapist in outpatient mental health clinics, a homeless shelter, and a home for delinquent teenage girls in the District of Columbia metropolitan area.

Donna M. Kimbark, Ph.D.

Dr. Kimbark joined the IACC as a Federal member in 2012. She is the Program Manager for the Congressionally Directed Medical Research Programs at the U.S. Department of Defense (DoD), a complex extramural biomedical research program that includes the Autism Research Program, the Bone Marrow Failure Research Program, the Multiple Sclerosis Research Program, and the Peer-Reviewed Cancer Research Program. Dr. Kimbark oversees the management of 214 research awards representing $136.25 million in appropriated funds. She holds a Ph.D. in molecular pharmacology and cancer therapeutics from the State University of New York, Albany.

Story C. Landis, Ph.D.

Dr. Landis has been the Director of the National Institute of Neurological Disorders and Stroke (NINDS) since 2003. A native of New England, she received her undergraduate degree from Wellesley College (1967) and her Ph.D. from Harvard University (1973). After postdoctoral work at Harvard University, Dr. Landis served on the faculty of the Department of Neurobiology there. In 1985 she joined the faculty of Case Western Reserve University School of Medicine, where she created the Department of Neurosciences, which, under her leadership, achieved an international reputation for excellence. Throughout her research career, Dr. Landis has made fundamental contributions to the understanding of nervous system development. She has garnered many honors; is an elected fellow of the Institute of Medicine, the Academy of Arts and Sciences, and the American Association for the Advancement of Science; and in 2002 was elected President of the Society for Neuroscience.

Dr. Landis joined NINDS in 1995 as Scientific Director and worked to reengineer the Institute's intramural research programs. Between 1999 and 2000 she led the movement, together with the National Institute of Mental Health (NIMH) Scientific Director, to bring a sense of unity and common purpose to 200 neuroscience laboratories from 11 different NIH Institutes. As NINDS Director, Dr. Landis oversees an annual budget of $1.5 billion, which supports research by investigators in public and private institutions across the country and by scientists working in the Institute's intramural program. Together with the directors of NIMH and the National Institute on Aging, she cochairs the NIH Blueprint for Neuroscience Research, a roadmap-like effort to support trans-NIH activities in the brain sciences.

John Elder Robison

Mr. Robison joined the IACC as a public member in 2012. He is an adult on the autism spectrum who is best known for working to increase public understanding of autism and helping schools, businesses, and government accommodate and accept people with autism. Mr. Robison is committed to diversity and is a strong advocate for autism science and research. He believes people with autism deserve an equal opportunity at success in work and social life and is dedicated to that goal. Mr. Robison is active on numerous autism spectrum disorder-related boards and committees in the United States, Canada, Europe, and Australia. He is also the Neurodiversity Scholar in Residence at the College of William and Mary.

In addition to his service on the IACC, Mr. Robison has served on the steering committee of the International Classification of Functioning, Disability and Health Autism Core Set project and on organizing committees for the International Society for Autism Research, the Institute for Autism Research at Canelius College, panels and committees for the National Institutes of Health, and boards for the U.S. Centers for Disease Control and Prevention. His books Look Me in the Eye and Be Different are some of the most widely read accounts of life with autism/Asperger's in the world. Mr. Robison's newest book Raising Cubby is now available in paperback. His writing has been translated into more than 15 languages and sold in more than 70 countries. Mr. Robison is published by Random House in the United States; Scribe, Random House, and Harper Collins in Australia; and other presses around the world. In addition to his work as an autism advocate and author, he has had a lifelong interest in cars and is the founder of JE Robison Service Company, Inc., of Springfield, Massachusetts, a business that restores Rolls Royce, Land Rover, Jaguar, Mercedes, and BMW automobiles. Earlier Mr. Robison worked as an engineer in music and electronics and was the U.S. engineer for Britannia Row Audio, the sound company formed by the musical group Pink Floyd. He is the creator of the signature illuminated, fire-breathing, and rocket-launching special effects guitars played by the rock group KISS.

Linda K. Smith

Ms. Smith joined the IACC as a Federal member in 2013. As Deputy Assistant Secretary and Inter-Departmental Liaison for the Administration for Children and Families, she provides overall policy coordination for the Head Start and Early Head Start Program and the Child Care and Development Fund and serves as the liaison with the U.S. Department of Education and other Federal agencies. Ms. Smith's office serves as a focal point for early childhood policy at the Federal level. She previously served as Executive Director of 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 and was the driving force behind NACCRRA's national policy agenda and strategic plan to improve the quality of childcare nationwide. Key components of NACCRRA advocacy efforts included strengthening childcare licensing and oversight, requiring comprehensive background checks, and establishing minimum training requirements for all childcare 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. Previously, she was Director of the Office of Family Policy for the Secretary of Defense, where she was one of the primary architects of the military's childcare program. Additionally, Ms. Smith 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.

Stuart Spielman, J.D., LL.M.

Mr. Spielman is responsible for managing Federal Government affairs for Autism Speaks.  He advocates on Capitol Hill and before Federal agencies for research and services that can improve the lives of children and adults on the autism spectrum.

As a volunteer in the late 1990s, Mr. Spielman championed several State-based initiatives, including the Nation's first Medicaid home- and community-based services waiver for children with autism. His most recent efforts have focused in the Federal arena.  Mr. Spielman has worked on the Children's Health Act of 2000, the Combating Autism Act of 2006, the Combating Autism Reauthorization Act, and other significant legislation.

He began working for Autism Speaks in January 2008. Mr. Spielman holds a J.D. degree from the University of Wisconsin School of Law and a master's degree in laws in taxation from the New York University School of Law. He and his wife Mona are the parents of two teenage boys, one of whom is on the autism spectrum.

Back to Top

• Oral Public Comments (PDF – 679 KB)
• Written Public Comments (PDF – 341 KB)

Back to Top

Below you will find links to the materials for the meeting.

• 2013 Strategic Plan Update
• 2013 IACC Summary of Advances
• State of the States Report (PDF – 2 MB)
• Dr. Insel's Blog: "BrainSpan: Mapping the Developing Brain," April 4, 2014
• IACC Chair Blogs About Autism Awareness
• Centers for Disease Control and Prevention (CDC) Prevalence Publication, March 28, 2014, MMWR
• Birth to 5: Watch Me Thrive! Initiative
• White House BRAIN Initiative Website
• White House BRAIN Initiative Fact Sheet
• White House Announcement of Doubling of BRAIN Initiative Funding (PDF – 82 KB)
• Congressionally Mandated Medical Research Programs, Autism Research Program
• Concept Clearance for National Institute of Mental Health (NIMH) Services Request for Applications (RFAs)
• NIMH RFA on Early Identification and Intervention Services
• NIMH RFA on Transition Services
• NIMH RFA on Adult Services

Recent Publications

• Press Release Regarding IACC Statement on Changes in Diagnostic Criteria for ASD, April 2, 2014
• IACC Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder, April 2, 2014
• IACC Public Member Response Letter to Government Accountability Office (GAO) Report, March 6, 2014 (PDF – 161 KB)
• GAO Response Letter to IACC Response Letter to GAO Report, April 3, 2014 (PDF – 116 KB; Secure Document. 508 Compliance not Available.)
• Combating Autism Act Report to Congress (FY2010-2012)
• CMS State of the States Report (PDF – 2 MB)

Upcoming Autism Awareness Month Events

• National Institute of Child Health and Human Development (NICHD) Conference on Military and Children with Special Health Care Needs, April 14-15, 2014
• CDC Autism Awareness Event – Panel featuring Alexis Wineman, Miss Montana 2012, on teen and young adult challenges and autism, April 17, 2014 (PDF – 253 KB)
• National Institute of Environmental Health Sciences (NIEHS) Virtual Forum on Autism and the Environment, April 22, 2014
• CDC Grand Rounds - Autism Spectrum Disorder: From Numbers to Know-How, April 22, 2014
• NIMH Special Lecture for Autism Awareness Month: Ron Suskind, April 24, 2014
• NIMH Twitter Chat on Autism with Dr. Sue Swedo on April 29, 2014
• Health Resources and Services Administration (HRSA)/Association of University Centers on Disabilities (AUCD) Virtual Forum on ASD and Transition, April 30, 2014
• HRSA/AUCD Virtual Forum on Reducing Disparities for People with ASD, May, To Be Determined

Back to Top

• Meeting Transcript (PDF – 668 KB)

Back to Top

• IACC Meeting Full Slide Set (PDF – 6 MB)

Presentation	Presenter(s)
Science Update (PDF – 633 KB)	Thomas Insel, M.D., Director, National Institute of Mental Health (NIMH), Chair, IACC
Centers for Disease Control and Prevention Prevalence (PDF – 972 KB)	Jon Baio, Ed.S., Epidemiologist, U.S. Centers for Disease Control and Prevention (CDC)
Birth to 5: Watch Me Thrive! (PDF – 388 KB)	Linda Smith, Deputy Assistant Secretary and Inter-Departmental Liaison, Early Childhood Development, Administration for Children and Families (ACF)
The BRAIN Initiative (PDF – 1 MB)	Story Landis, Ph.D., Director, National Institute of Neurological Disorders and Stroke (NINDS)
Congressionally Directed Medical Research Programs (CDMRP), Autism Research Program (ARP) (PDF – 1 MB)	Donna Kimbark, Ph.D., Program Manager, Autism Research Program, Congressionally Directed, Medical Research Programs, U.S. Department of Defense (DoD)
National Database for Autism Research (PDF – 1 MB)	Gregory K. Farber, Ph.D., Director, Office of Technology Development and Coordination, National Institute of Mental Health (NIMH)
Teaching a Neurodiversity Course (PDF – 1 MB)	John Elder Robison, Self Advocate, Parent, Author, Neurodiversity Scholar in Residence, College of William & Mary
Services Research for Autism Spectrum Disorder across the Lifespan (ServASD) (PDF – 172 KB)	Denise Juliano-Bult, M.S.W., Program Chief, National Institute of Mental Health (NIMH)
Autism Policy Update (PDF – 205 KB)	Stuart Spielman, Esq., Senior Policy Advisor and Counsel, Autism Speaks
OARC Update (PDF – 382 KB)	Susan Daniels, Ph.D., Director, Office of Autism Research Coordination, NIMH, Executive Secretary, IACC
Committee Business (PDF – 45 KB)	Thomas Insel, M.D., Director, National Institute of Mental Health (NIMH), Chair, IACC Susan Daniels, Ph.D., Director, Office of Autism Research Coordination (OARC), NIMH, Executive Secretary, IACC

Back to Top