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Full Committee Meeting - April 26, 2017

The April meeting highlighted a presentation from the Honorable Mike Lake, Member of Parliament in Canada, who is the father of a young adult son on the autism spectrum and is an autism advocate. The meeting also included a presentation from the Social Security Administration on Disability Programs, a report from the Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities, a presentation on developing services to help adults with ASD with social functioning, a panel on biomarker research, and an update from the CDC's "Learn the Signs, Act Early" initiative.
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meeting announcement Announcement
Topic Topic Description
Date: Wednesday, April 26, 2017
Time: 9:00 a.m. to 5:00 p.m. Eastern
Place: National Institutes of Health
31 Center Drive
Building 31, C Wing, 6th Floor, Conference Room 6
Bethesda, MD 20892

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.
Metro Stop: Medical Center Metro Station (Red Line)
Conference Call Access: Dial: 800-857-9708
Access code: 4617338

Individuals who participate using this service 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 below at least five days prior to the meeting. If you experience any technical problems with the conference call or webcast, please e-mail IACCPublicInquiries@mail.nih.gov.

Please visit the IACC Meetings page for the latest information about the meeting, including remote access information, the agenda, materials, and information about prior IACC events.
Registration: Online pre-registrationGo to website disclaimer is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis. Onsite registration will also be available.
Webcast: https://videocast.nih.gov/summary.asp?live=21737&bhcp=1
Agenda: To discuss Committee business, agency updates, and issues related to autism spectrum disorder (ASD) research and services activities. The Committee will discuss updates of the IACC Strategic Plan.
Cost: The meeting is free and open to the public.
Deadlines: Notification of intent to present oral comments: Friday, April 14, 2017 by 5:00 p.m. ET

Submission of written/electronic statement for oral comments: Tuesday, April 18, 2017 by 5:00 p.m. ET

Submission of written comments: Tuesday, April 18, 2017 by 5:00 p.m. ET

Please note: Written public comments and statements accompanying oral public comments should be sent to IACCPublicInquiries@mail.nih.gov. For IACC Public Comment guidelines please see:http://iacc.hhs.gov//meetings/public-comments/guidelines/
Public Comment: Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. ET on Friday, April 14, 2017, with their request to present oral comments at the meeting, and a written/electronic copy of the oral presentation/statement must be submitted by 5:00 p.m. ET on Tuesday, April 18.

A limited number of slots for oral comment are available, and in order to ensure that as many different individuals are able to present throughout the year as possible, any given individual only will be permitted to present oral comments once per calendar year (2017). Only one representative of an organization will be allowed to present oral comments in any given meeting; other representatives of the same group may provide written comments. If the oral comment session is full, individuals who could not be accommodated are welcome to provide written comments instead. Comments to be read or presented in the meeting must not exceed 250 words or 3 minutes, but a longer version may be submitted in writing for the record. Commenters going beyond the 3 minute time limit in the meeting may be asked to conclude immediately in order to allow other comments and presentations to proceed on schedule.

Any interested person may submit written public comments to the IACC prior to the meeting by e-mailing the comments to IACCPublicInquiries@mail.nih.gov or by submitting comments at the web link: https://iacc.hhs.gov/meetings/public-comments/submit/index.jsp by 5:00 p.m. ET on Tuesday, April 18, 2017. The comments should include the name and e-mail address for contact purposes, and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. ET on Tuesday, April 18, 2017 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. ET, April 18, 2017 deadline through April 25, 2017 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. Attachments of copyrighted publications are not permitted, but web links or citations for any copyrighted works cited may be provided.

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 remotely accessible by videocast and conference call. Members of the public who participate using the conference call phone number will be in listen-only mode.

Meeting schedule subject to change. Information about the IACC is available on the website: https://iacc.hhs.gov.
Contact Person: Ms. Angelice Mitrakas
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 6183A
Rockville, Maryland 20852
Phone: 301-435-9269
E-mail: IACCPublicInquiries@mail.nih.gov

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meeting agenda Agenda
Time Event
 9:00 a.m.
Welcome, Introductions, Roll Call, and Approval of Minutes
Joshua Gordon, M.D., Ph.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC
 9:10
Update from the HHS Office of the National Autism Coordinator
Thomas Novotny, M.D.
Deputy Assistant Secretary for Health and National Autism Coordinator
Department of Health and Human Services
 9:15
Expect More – An Autism Adventure
The Honorable Mike Lake, PC, MP
Member of Parliament for Edmonton-Wetaskiwin, Canada
10:15
Social Security Administration Disability Programs
Melissa Spencer
Deputy Associate Commissioner, Office of Disability Policy
Social Security Administration
10:30
Morning Break
10:40
Report from Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities
Scott Michael Robertson, Ph.D.
Andrew Arias
Office of Disability Employment Policy
U.S. Department of Labor
11:05
Developing Services to Enhance Social Functioning in Adults with Autism Spectrum Disorder
Edward Brodkin, M.D.
Associate Professor of Psychiatry
Perelman School of Medicine at the University of Pennsylvania
11:30
Committee Business
Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC

Julianna Rava, M.P.H.
Science Policy Analyst, Office of Autism Research Coordination, NIMH

  • 2016 IACC Summary of Advances
  • 2013 IACC ASD Research Portfolio Analysis Report
  • Autism Research Database
  • IACC Strategic Plan Update
12:00 p.m.
Lunch - Building 31 Cafeteria
 1:00
Public Comment Session

Joshua Gordon, M.D., Ph.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC

Karen Mowrer, Ph.D.
Science Policy Analyst, Office of Autism Research Coordination, NIMH

1:00: Oral Public Comment Session

1:30: Summary of Written Public Comments

1:45: IACC Committee Member Discussion of Public Comments

 2:00
Panel on Advances in Autism Biomarkers Research
2:00
Practical and Scientific Challenges in Biomarker Development for ASD

James McPartland, Ph.D.
Associate Professor of Child Psychiatry and Psychology
Director, Yale Developmental Disabilities Clinic
Principal Investigator, Autism Biomarkers Consortium for Clinical Trials
Yale Child Study Center
2:15
Differences in early brain development predict ASD outcomes in high risk infants

Heather Hazlett, Ph.D.
Assistant Professor of Psychiatry
Carolina Institute for Developmental Disabilities
University of North Carolina School of Medicine
2:30
Extra-Axial Cerebrospinal Fluid as a Potential Biomarker in Infants Who Develop ASD and Insights into the Role of Early Behavior

Mark Shen, Ph.D.
Postdoctoral Fellow
Carolina Institute for Developmental Disabilities
University of North Carolina School of Medicine
2:45
Digital Clinical Assessment for Diagnosis and Treatment Outcome Measurement

Robert Schultz, Ph.D.
RAC Professor of Psychology
Departments of Pediatrics and Psychiatry
Director of the Center for Autism Research
University of Pennsylvania
3:00 Panel Discussion
 3:30
Afternoon Break
 3:40
"Learn the Signs, Act Early" Update
Stuart Shapira, M.D., Ph.D.
Chief Medical Officer and Associate Director for Science
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
 4:00
Summary of Advances Discussion

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

Karen Mowrer, Ph.D.
Science Policy Analyst, Office of Autism Research Coordination, NIMH

Joshua Gordon, M.D., Ph.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC
 4:30
Round Robin
 5:00
Closing Remarks and Adjournment

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

Next IACC Full Committee Meeting:

  • July 26, 2017 – NIH Main Campus, Bethesda, MD

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meeting speakers Speakers

The Honorable Mike Lake, P.C., M.P.

Member of Parliament for Edmonton-Wetaskiwin

The Honorable Mike Lake is the Member of the Canadian Parliament representing Edmonton-Wetaskiwin, and was first elected in 2006. He was appointed Parliamentary Secretary to the Minister of Industry in 2008. In 2012 Mr. Lake was sworn into the Queen's Privy Council, after being asked by Prime Minister Stephen Harper to serve on the Priorities and Planning Sub-Committee on Government Administration. He also currently serves as the Conservative Party Critic for Global Maternal, Newborn, and Child Health. Prior to entering federal politics, Mr. Lake worked for 10 years with the Edmonton Oilers Hockey Club where he served as National Accounts Manager, Director of Ticket Sales and Group Sales Manager. He holds a Bachelor of Commerce (with distinction) from the University of Alberta and has two children, a son Jaden, 20, and daughter Jenae, 16. The Lake family has been active supporters of autism organizations, families and individuals across the country, and around the world, while sharing their story of life with Jaden, who is on the autism spectrum.

Melissa Spencer

Deputy Commissioner
Office of Disability Policy
Social Security Administration

Ms. Melissa Spencer joined the Social Security Administration in 1996 and is currently the Deputy Commissioner for the Social Security Administration’s (SSA) Office of Disability Policy. The Office of Disability Policy establishes all the medical criteria for Social Security Disability benefits and for Supplemental Security Income. Ms. Spencer is a graduate of SSA’s Senior Executive Service Candidate Development Program. Before entering the Senior Executive Service, Ms. Spencer served as the Acting Deputy Associate Commissioner for the Office of Quality Review and led all quality reviews for SSA’s programmatic workloads, including disability claims. She redesigned the State Disability Determination quality review processes by instituting virtual review and SSA’s Targeted Denial Review. Ms. Spencer has served on several national groups, developing expertise in key areas including childhood disability policy. She provided leadership and guidance to states as the federal liaison for the Maryland, Delaware, and West Virginia Disability Determination Services. Before joining SSA, Ms. Spencer spent 13 years in the Virginia Disability Determination Services as a disability examiner and manager after beginning her career as a vocational rehabilitation counselor. She holds a Bachelor of Sciences degree in Rehabilitation Services from Virginia Commonwealth University.

Scott Michael Robertson, Ph.D.

Policy Advisor, Youth Policy Team
Office of Disability Employment Policy
U.S. Department of Labor

Dr. Scott Michael Robertson, an autistic adult, works as policy advisor on the Youth Policy Team at the U.S. Department of Labor’s Office of Disability Employment Policy. He previously worked as a Joseph P. Kennedy, Jr. Fellow for Senator Tom Harkin in the U.S. Senate Committee on Health, Education, Labor, and Pensions. Dr. Robertson has also served as a Public Member of the federal Interagency Autism Coordinating Committee and a Council Member on the Pennsylvania Developmental Disabilities Council. In 2006, he co-founded the Autistic Self Advocacy Network (ASAN) as a national 501(c)(3) nonprofit organization, and then served as the Founding Vice President. Dr. Robertson completed his PhD in information sciences and technology at Penn State University after investigating cyber- and face-to-face bullying of autistic youth for his dissertation study.

Andy Arias

Policy Advisor, Workforce Systems Team
Office of Disability Employment Policy
U.S. Department of Labor

Andy Arias is a Policy Advisor on the Workforce Systems Policy Team at the U.S. Department of Labor, Office of Disability Employment Policy (ODEP). He has primary responsibility for a number of Federal policy initiatives focused specifically on promoting the employment and socioeconomic advancement of adults with disabilities. Andy brings a real-world experience along with a service provider expertise to his work. Prior to ODEP, Andy worked as an Americans with Disabilities Act subject matter expert for Harris & Associates a well-known law firm in Los Angeles focused on contracts and startup ventures. Andy worked as a Systems Change Advocate for the Dayle McIntosh Center, a Center for Independent (CIL) Living in Los Angeles, Orange California. While working at this CIL, he engaged in supporting autistic youth and other youth with disabilities in accessing resources to help them attain competitive integrated employment. He served as marketing director for CareerAccess, an employment initiative to improve career development for all youth with disabilities.

Edward S. (Ted) Brodkin, M.D.

Associate Professor of Psychiatry
Perelman School of Medicine at the University of Pennsylvania

Dr. Ted Brodkin is an Associate Professor of Psychiatry at the Perelman School of Medicine at the University of Pennsylvania. The Brodkin lab uses mouse models relevant to autism spectrum disorders (ASD) and schizophrenia (SCZ) to elucidate genetic, cellular, and molecular mechanisms of social behavior disruptions. The ultimate goal of this research is to identify novel strategies for treatment of developmental disruptions of social behaviors. Dr. Brodkin is also the recipient of one of the National institute of Mental Health’s SERV-ASD grants, which focuses on developing services strategies for adults with ASD. As an M.D., board certified psychiatrist, attending psychiatrist at the Hospital of the University of Pennsylvania, and Director of the Adult Autism Spectrum Program at Penn Medicine, Dr. Brodkin is committed to translating findings from basic research into improved care of patients. Dr. Brodkin received his A.B. from Harvard University in 1988 and his M.D. from Harvard Medical School in 1992.

James C. McPartland, Ph.D.

Associate Professor of Child Psychiatry and Psychology, Yale Child Study Center
Director, Yale Developmental Disabilities Clinic
Director of Undergraduate Studies, Yale Child Study Center

Dr. Jamie McPartland’s program of research investigates the brain bases of neurodevelopmental disabilities to develop biologically-based tools for detection and treatment. He is the Principal Investigator of the Autism Biomarkers Consortium for Clinical Trials, a nationwide effort to identify biomarkers to support intervention research in ASD. His research has been supported by NIH, NARSAD, the Autism Science Foundation, the Waterloo Foundation, Autism Speaks, the Patterson Trust, and the Simons Foundation, and his contributions to the field have been recognized by the University of Washington’s Bolles and Gatzert Child Welfare Fellowships, a Clinical and Translational Sciences Scholar Award from the Yale Center for Clinical Investigation, a Behavioral Science Track Award for Rapid Transition and a Patient-Oriented Research Career Development Award from the National Institutes of Mental Health, the NARSAD Atherton Young Investigator Award, the International Society for Autism Research Young Investigator Award, the Patterson Trust Clinical Research Award, the Brain & Behavior Research Foundation Klerman Prize, and the American Psychological Association Division of Intellectual and Developmental Disabilities Sara S. Sparrow Early Career Research Award. He has served on the Executive Committee of the American Psychological Association’s Division of Intellectual and Developmental Disabilities and currently serves on the board of the International Society for Autism Research.

Heather Hazlett, Ph.D.

Assistant Professor
University of North Carolina School of Medicine

Dr. Heather Hazlett is a licensed psychologist with a background in child neuropsychology and with research interests in neurodevelopmental disorders. During the last ten years, Dr. Hazlett’s primary research interests have focused on brain development in autism and fragile X syndrome, using brain MRI scans to conduct studies of brain structure and maturation. Her work involves the use of specialized image analysis tools to examine how brain development in children with autism and related disorders compares to typical brain development. These methodologies allow Dr. Hazlett to investigate how variations in brain development influence behavior and development, and conversely, in what ways behavior may shape the trajectory of brain growth. In combination with the brain MRI data, Dr. Hazlett’s work involves developmental and psychological assessments to test relationships between brain and cognition. Currently, Dr. Hazlett is the principal investigator (or collaborator) on several projects using neuroimaging to study the brain development in neurodevelopmental disorders including autism, fragile X syndrome, and Down syndrome. In addition to her research activities, Dr. Hazlett participates in a multi-disciplinary clinic conducting evaluations for autism spectrum disorders and co-supervises a pediatric neuropsychology clinic.

Mark Shen, Ph.D.

Postdoctoral Fellow
University of North Carolina

Dr. Shen is a clinical neuroscientist studying the early brain and behavioral development of children with autism. Dr. Shen obtained his Ph.D. in Cognitive Neuroscience from the UC Davis MIND Institute, and he is currently a postdoctoral fellow at the University of North Carolina. Prior to graduate school, Dr. Shen worked for six years doing clinical work in the community with individuals with autism (early intervention with young children; developing high school transition programs for teenagers; and integrating independent living and employment programs for adults). Dr. Shen has helped carry out longitudinal MRI studies in high-risk infants and toddlers with autism, and his current research objective is to integrate multiple approaches (clinical and behavioral assessment, infant brain imaging, and molecular genetics) to identify early risk markers for autism. Dr. Shen’s ultimate goal is to translate his research into findings that are both useful to clinicians and beneficial for individuals and families living with autism.

Robert Schultz, Ph.D.

R.A.C. Endowed Professor of Professor of Psychology
Director, Center for Autism Research
University of Pennsylvania

Dr. Schultz founded and directs the Center for Autism Research (CAR) at Children's Hospital of Philadelphia (CHOP). His research focuses on autism and related childhood neuropsychiatric disorders, including studies of Williams syndrome, Prader Willi syndrome, and 22q11.2 deletion and duplication syndromes in comparison to autism. His interest in autism also reflects a fundamental interest in social ability and disability. He has pursued several different but complementary research strands over the past two decades. He also collaborates with others at CAR on studies of autism comorbidities, including sleep disturbance, anxiety, intellectual disability and ADHD. His autism research has received continuous funding from the NIH since 1995. Before coming to UPenn/CHOP in 2007, he was on the faculty of Yale University for more than 15 years. His PhD and postdoctoral training were in clinical psychology and cognitive neuroscience.

Stuart K. Shapira, M.D., Ph.D.

Associate Director for Science and Chief Medical Officer
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Centers for Disease Control and Prevention

Stuart K. Shapira, MD, PhD is Associate Director for Science and Chief Medical Officer in the National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC). Prior to this role, Dr. Shapira served as a medical officer on the Pediatric Genetics Team in NCBDDD. His research activities included dysmorphology of autism, birth defects epidemiology, and newborn screening. Dr. Shapira received his PhD degree in Genetics and his MD degree, both from the University of Chicago. He completed a residency in Pediatrics and a clinical fellowship in Genetics and Metabolism at Boston Childrens Hospital. He also completed dual research fellowships in Genetics and Metabolism, and in Allergy and Immunology at Harvard Medical School. Dr. Shapira is board-certified in Clinical Genetics, Biochemical Genetics, and Molecular Genetics. Prior to joining the National Center on Birth Defects and Developmental Disabilities in 2005, Dr. Shapira practiced clinical genetics and metabolic genetics at Baylor College of Medicine in Houston and at the University of Texas Health Science Center in San Antonio. He currently serves as CDC liaison to the Committee on Genetics for the American Academy of Pediatrics, as chairman of the Dysmorphology Workgroup for the Centers for Autism and Developmental Disabilities Research and Epidemiology, and as NCBDDD liaison of the Interagency Collaborative to Advance Research in Epilepsy. Dr. Shapira has authored and coauthored more than 100 journal articles, book chapters, and abstracts, and he has been an invited speaker at numerous regional, national, and international scientific conferences.


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meeting materials Materials

IACC Business Related Materials:


Materials related to presentations:


Panel on Autism Biomarkers:


CDC Learn the Signs, Act Early Presentation:


Materials related to Autism Awareness Month:



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meeting slides Slides

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meeting comments Public Comments

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meeting transcript Transcript

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meeting webcast Full Webcast

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