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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 minutes Minutes

The Interagency Autism Coordinating Committee (IACC, also referred to as “the Committee”) convened a meeting on Wednesday, April 26, 2017, from 9:01 a.m. to 4:34 p.m. at the National Institutes of Health (NIH), 31 Center Drive, Building 31, in Bethesda, Maryland.

In accordance with Public Law 92-463, the meeting was open to the public. Joshua A. Gordon, M.D., Ph.D., Director, National Institute of Mental Health (NIMH) chaired the meeting.

Participants:

Joshua Gordon, M.D., Ph.D., Chair, IACC, Director, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), (NIMH); David Amaral, Ph.D., University of California (UC) Davis MIND Institute; James Ball, Ed.D., B.C.B.A.-D., JB Autism Consulting (attended by phone); Diana Bianchi, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Josie Briggs, M.D., National Center for Complementary and Integrative Health (NCCIH), NIH (representing Francis S. Collins, M.D., Ph.D.); Judith Cooper, Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD) (representing James Battey, M.D., Ph.D.); Samantha Crane, J.D., Autistic Self Advocacy Network (ASAN); Geraldine Dawson, Ph.D., Duke University; Ruth Etzel, M.D., Ph.D., Environmental Protection Agency (EPA); Tiffany Farchione, M.D., U.S. Food and Drug Administration (FDA); Amy Goodman, M.A., Self-Advocate; Melissa L. Harris, Centers for Medicare & Medicaid Services (CMS) (attended by phone); Jennifer Johnson, Ed.D., Administration for Community Living (ACL); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS), (representing Linda Birnbaum, Ph.D.); Meghan Mott, Ph.D., National Institute of Neurological Disorders and Stroke (NINDS) (representing Walter J. Koroshetz, M.D.); Brian Parnell, M.S.W, C.S.W., Utah Department of Human Services; Kevin Pelphrey, Ph.D., George Washington University and Children’s National Medical Center; Edlyn Peña, Ph.D., California Lutheran University; Laura Pincock, Pharm.D., M.P.H., Agency for Healthcare Research and Quality (AHRQ); Louis Reichardt, Ph.D., Simons Foundation Autism Research Initiative; Robert H. Ring, Ph.D., Vencerx Therapeutics; John Elder Robison, College of William and Mary; Robyn Schulhof, M.A., Health Resources and Services Administration (HRSA), (representing Laura Kavanagh, M.P.P.); Stuart K. Shapira, M.D., Ph.D., Centers for Disease Control and Prevention (CDC); Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Melissa Spencer, Social Security Administration (SSA); Julie Lounds Taylor, Ph.D., Vanderbilt University; Larry Wexler, Ed.D., U.S. Department of Education (ED); Nicole Williams, Ph.D., U.S. Department of Defense (DoD).

Call to Order, Roll Call and Welcome

Joshua Gordon, M.D., Ph.D., Director, NIMH and Chair, IACC; Susan Daniels, Ph.D., Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC

Dr. Joshua Gordon called the meeting to order at 9:01 a.m., and Dr. Susan Daniels took roll call. Dr. Gordon called attention to National Autism Awareness Month and related recent activities. The draft minutes from the January 13, 2017 meeting were approved with no comments or corrections and to be posted on the IACC website as soon as possible after the meeting.

Welcome and Introductions

Dr. Gordon welcomed a new Committee member, Ms. Melissa Spencer. Ms. Spencer reviewed the role of her agency, specifically its role in transition and education activities for the adult autism population. Dr. Robert Ring has a new affiliation as CEO of Vencerx Therapeutics.

Update from the Office of the National Autism Coordinator

Thomas E. Novotny, M.D., M.P.H., National Autism Coordinator & Deputy Assistant Secretary for Health (Science and Medicine), Office of the Assistant Secretary for Health, Department of Health and Human Services (HHS).

Dr. Thomas Novotny thanked Ms. Spencer for her work on the report from HHS on the transition of youth and adolescents with ASD into adulthood, and provided an update on the report. This report had government-wide collaboration from federal departments and agencies, such as ED and DoD, in the production of the materials and in the process of communicating and identifying federal activities to report. HHS has incorporated input and insights not only from these federal participants, but also the U.S. Government Accountability Office (GAO), which has also prepared a report on autism service needs in the transition period from adolescence to adulthood. The findings and recommendations of both reports should be compatible. The IACC provided a compilation of public comments related to autism and transition to adulthood, which was collected during the IACC strategic planning process in 2016, and a summary of the comments was incorporated into the HHS report. Dr. Novotny said that he hoped the report would be available soon. He thanked Autism Speaks for organizing a meeting the Congressional Autism Caucus, which was attended by Representative Chris Smith (NJ-4), who authored the Autism CARES Act. Representative Smith continues to express interest in the issue of transition of individuals with ASD to adulthood, and the Department looks forward to continuing to work with him. Dr. Novotny also expressed appreciation for the progress on the IACC Strategic Plan and Summary of Advances publications, and he mentioned these efforts as highlights of Autism Awareness Month.

Dr. Daniels commented that her participation on the transition report steering committee has also been valuable to the IACC as it has facilitated new connections with individuals and agencies working on the transition issue.

There were no questions from the Committee for Dr. Novotny.

Expect More – An Autism Adventure

The Honorable Mike Lake, P.C., M.P. Member of Parliament for Edmonton-Wetaskiwin, Canada

Dr. Gordon introduced The Honorable Mike Lake, a member of Parliament in Canada and an advocate for autism. Mr. Lake has two children: Jaden, his 21-year-old son who has ASD, and Jenae, his 17-year-old neurotypical daughter. Mr. Lake mentioned that he was fortunate that his constituents allowed him to pursue this extra work as an autism advocate around the world and as an active supporter of autism organizations. Mr. Lake interspersed his presentation with videos of himself and Jaden during various interviews and events.

Mr. Lake began with a video from May 2016 to illustrate an example of Jaden’s “singing back” behavior. Jaden is non-verbal, and his family first noticed this behavior when the National Anthem was played. The next video, from April 2010 on World Autism Awareness Day, was a news interview that highlighted Jaden’s focus on the topic of travel and the unscripted communication that followed. Mr. Lake emphasized that when a child with autism shows a behavior, families should not hide it. Instead, he encourages families to talk about it and explain how autism is a spectrum where not every individual will exhibit all behaviors represented by the spectrum. He emphasized that aspects of the conversation about autism, such as associating autism with “suffering” or the need for a “cure,” need to change, and that it’s important that the whole spectrum is represented.

Next, Mr. Lake showed a video that illustrated how reading Jaden’s body and facial language is key to understanding his state of mind. Mr. Lake talked about Jaden’s lack of fear and how that challenged parts of daily life. For example, Jaden loves dogs and will run to strange dogs and touch them for sensory input. The idea of “safe” is an abstract concept for Jaden. Mr. Lake also talked about having to advocate for an aide to help Jaden, especially to prevent situations such as running into traffic. He said that the cost of providing an aide outweighs the cost of the risk in dangerous situations. Mr. Lake also illustrated how Jaden’s lack of fear helps him meet and connect with people he wouldn’t meet normally.

The points that Mr. Lake wanted the audience to take home include: 1) evidence-based, early intervention is critical, 2) all transitions are difficult, 3) we need to “expect more” from people with autism—low expectations for the future of people on the autism spectrum are a barrier to their ability to achieve their highest potential. In addition, we should move towards that expectation of contribution, not just inclusion.

As an example of contribution versus inclusion Mr. Lake showed another video of when Jaden was in grade 10. The high school musical theatre teacher believed that Jaden could play a role in their musical production of Oliver! because he loved music. During the production, two other students were posted on either side of the stage to make sure he didn’t wander. The next school year, they did Bye Bye Birdie, and Jaden played a bigger role. They realized that Jaden did well because musical theatre has the order, patterns, and routine that Jaden thrives on. Jaden contributed to his peers’ performance by making them realize that every person has value to add. Jaden continued to be involved in musical theatre throughout high school, and every year, his peers would push him a little more than the year before. Because of his contribution, the community of people around him noticed what his strengths were and grew to understand him more, and his peers began thinking bigger: what else could Jaden do?

The next video was a news interview showing Jaden at age 19, working in the library. The librarian spoke about how Jaden excels at his work, and is faster and more accurate than anyone else. The librarian said Jaden could work anywhere there are computers or numbers. Mr. Lake wants to give kids like Jaden a chance to have work opportunities, even if they can’t interview. Adults with ASD are generally underemployed, but there are programs that can help by matching adults with ASD to appropriate job opportunities. He highlighted how workplaces could benefit most of all, for instance, in their dedication to their work. Jaden cries when he stops working at the end of the day because he loves it so much. He has a skill set that is transferable, even though he also has life skills that need assistance.

The last video showed his daughter Jenae, (age 13 at the time) who was asked: Do you sometimes wish Jaden was normal? Her answer was that Jaden is her “normal” and if he suddenly didn’t have autism, he wouldn’t be the same person he is now. Mr. Lake believes that the more that “normal” life includes people like Jaden, the more we will allow them to thrive. We need to change the way we think of everyone – “normal” is a personal experience.

Mr. Lake’s hope is that every person with a disability will have the same opportunities that Jaden has had. He is fighting not just for Jaden but for every kid. He is now working towards establishing a Global Autism Partnership to recognize that the world should leave no one behind, including those most vulnerable, because anyone already in a vulnerable population might also have autism. He expressed that if we wire our hearts to, for instance, accept a girl in rural Africa who might have autism, we will change the way we see all children, all refugees, and all people.

Questions and Comments:

Mr. John Robison talked about the question he raised at the previous night’s OARC-sponsored film screening of As One: The Autism Project, which was: why not let the people with autism tell their own story? The producers’ answer was that they were concerned that they would not be able to portray them accurately. Mr. Robison believes that verbal autistic people have emerged as self-advocates in considerable numbers of late, and it concerns him that critics in the autism community attack these presentations. The only way to build awareness for people who can’t speak for themselves is to present them with loving caregivers who will be their voice, such as in the videos that Mr. Lake showed. Mr. Robison asked Mr. Lake how he, as a member of Parliament, translates this story into a broader population and makes it actionable. Mr. Lake answered that people in the autism community are a team and it’s important for all of us to make these points about the spectrum and how broad it is. We need to work on broader awareness, which he does through Introductory Psychology classes, educating students who will one day go out into the community. An expert global working group should advise governments on what to do with early intervention, transition, education, and mental health to further good policy. Mr. Lake believes the working group – the Global Autism Partnership – needs to include all topics and organizations across the world. Some government entities across the world do not even know the word autism, much less what it means. Specific cultures may have stigma attached, and that’s where this working group could support then mission. Mr. Robison suggested that Mr. Lake connect with the Autism Self Advocacy Network (ASAN).

Dr. Louis Reichardt asked Mr. Lake where he sees the major opportunities in science for autism. Mr. Lake replied that competition is a challenge, building a network is difficult, and that not everyone will be able to be included because they have other interests. If a broad coalition of organizations, the advantage is that no one is seen as in competition with anyone else because it’s a partnership with one voice. Although getting that one voice is challenging at times, where sometimes five percent of a coalition is very loud, and that five percent can be seen as risky to a policy-maker. The policy-maker needs to hear a unified voice.

Dr. Gordon thanked Mr. Lake for raising these important issues.

Social Security Administration Disability Programs

Melissa Spencer, Deputy Associate Commissioner, Office of Disability Policy, SSA

Ms. Spencer reviewed Social Security disability benefits for ASD and how to transition individuals with ASD into receiving Social Security benefits.

SSA provides two types of benefits that are applicable to ASD: Title II (Social Security income) and Title XVI (Supplemental Security income). Ms. Spencer reviewed the SSA’s definition of disability, which determines who is eligible, and how a person qualifies. SSA has a five-step process for determining eligibility. Autism is considered at Step 3 (if the impairment meets or medically equals one of the listed impairments) and then at Step 4 (the ability to work). Paragraph B of the Disability Evaluation uses the Psychiatric Review Technique, a five-point scale, to rate the degree to which an individual meets the functional criteria for Social Security benefits. ASD has been a listed impairment by itself since 2000, but before then ASD was embedded in developmental disorders. There are also medical criteria to meet for a disability claim, assessed through parents, teachers, and medical professionals. Ms. Spencer also reviewed how to apply for benefits. More information can be found at https://www.ssa.gov/disability/.

Ms. Spencer reviewed four Social Security-related programs that are currently being studied:

  • Supported Employment Demonstration (SED), which helps SSA intervene to keep an individual in the workplace. The program will be up later in 2017.
  • Promoting Readiness of Minors in SSI (PROMISE), a study which helps children transition to work as a teenager. Mathematica will be evaluating this project.
  • Promoting Opportunity Demonstration (POD), a gradual reduction of benefits amounts as work increases.
  • Benefit Offset National Demonstration (BOND), which is a benefit offset to encourage return to work. This is a large study of a program that provides support.

Ms. Spencer encourages everyone to register for an SSA account to better understand retirement benefits and what benefits are available if you become disabled.

Questions and Comments:

Dr. Julie Taylor thinks Social Security income is important for those who just need a little more support to do what they want to do.

Dr. Kevin Pelphrey has a daughter with ASD and is planning for her future. He was struck by how complex the disability rules are. He and his wife make a good income, but it’s not enough to hire what they need, and there are a number of ways his daughter is knocked out of eligibility. He can’t imagine how a family with fewer resources manage their finances and interpret the Social Security Administration laws. Can the Committee think of ways to make this process easier? Some families might be so overwhelmed that they will not push their child to grow more independent.

Ms. Spencer acknowledged that the process is complicated and is looking forward to learning what SSA can do to make it clearer for families.

Report from Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities

Scott Michael Robertson, Ph.D., Office of Disability Employment Policy, U.S. Department of Labor, Policy Advisor, Youth Policy Team; Andrew Arias, Policy Advisor, Workforce Systems Policy Team

Dr. Scott Michael Robertson and Mr. Andrew Arias represent the Department of Labor Workforce Youth Policy Team. Dr. Robertson shared the recommendations of the final 2016 Report from the Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities. The Office of Disability Employment Policy is the only non-regulatory federal agency that promotes policy for workplace success for people with disabilities. More information can be found at www.dol.gov/odep/.

Dr. Robertson identified as an autistic adult and shared how there are substantial barriers to employment for people with autism. Unemployment and underemployment is much higher for people who have ASD. There is also less access to work-based learning. There is the barrier of self-disclosure, and although this barrier has changed over the last few years, it is still wide-spread. Dr. Robertson talked about NYU researchers who are looking at vocational interests of people with ASD and how it could relate to their employment. The NYU study shows that we need to focus on strengths and work towards providing support.

Dr. Robertson talked about the Workplace Innovation and Opportunity Act (WIOA) of 2014, which emphasizes competitive integrated employment for people with disability, as well as employment-related support such as housing and business engagement. WIOA promotes greater employment access for youth with disabilities, targeting students age 14-21. WIOA Section 511 improves access to employment for youth with disabilities under age 24 who have received pre-employment transition, vocational rehabilitation, career counseling, and referral. The WIOA charged the Advisory Committee to develop recommendations for a report to Congress, which was provided to Congress in 2016. The six recommendations to increase competitive integrated employment are to:

  • Systemically increase overall capacity building
  • Increase capacity building for youth to transition into adult employment
  • Increase capacity building through changes in the use and oversight of 14(c) certificates from the Fair Labor Standards Act
  • Build capacity in the marketplace through business and employer engagement
  • Build capacity in specific federal agencies through partnerships and complementary actions
  • Increase competitive integrated employment in the AbilityOne Program

Mr. Arias talked about his cerebral palsy, his past experience in the system, and his current opportunity to work on this Advisory Committee. These recommendations were developed with the aim of putting people on the most successful employment track possible. Mr. Arias spoke of using Section 14(c) to ensure that people with disabilities have the best success and can be self-sufficient.

Dr. Gordon expressed the importance of this report and the work of the Committee.

Developing Services to Enhance Social Functioning in Adults with Autism Spectrum Disorder

Edward (“Ted”) Brodkin, M.D., Associate Professor of Psychiatry, Perelman School of Medicine, University of Pennsylvania

Dr. Edward Brodkin is a recipient of one of the NIMH’s ServASD grants, which focuses on developing services for adults with ASD. Dr. Brodkin began by talking about the two main symptom domains in ASD: social interaction/social communication and restricted behavior. In this presentation, he focused on the first domain, especially as it relates to the transition for adults. Currently, about 500,000-600,000 adolescents with ASD will enter adulthood in the next decade in the U.S. Some of the challenges of these transitioning youth include completing their education, transitioning from a school setting to a work setting, developing the social skills needed for adult life, and engaging with peers. Difficulty with social functioning is possibly the most challenging of these, and there is a lack of evidence to support interventions. Dr. Brodkin mentioned a Howlin 2013 study about adults in mid-to late adulthood with ASD, which found that 63% never had any peer relationships, 77% never had a close relationship, and 55% had never worked in any kind of setting—highlighting the importance of social functioning in transitioning youth.

Dr. Brodkin defined social functioning as the ability to navigate the social world in real-world settings (such as home, school, work, and community). Social functioning is complex and requires a repertoire of behaviors that many people take for granted. There are three domains that he studies in social functioning: motivational/anxiety, cognition/skills, and context/community. There is a lot of heterogeneity across these domains in people with ASD. His team received an R34 grant from NIMH to develop and pilot a program to improve social functioning in adults with ASD across these three domains. The program focuses on the fundamentals of social functioning, such as tuning into our own state and others, understanding and navigating emotions, understanding and navigating conversations, and generalizing these skills to a community/work setting.

In the randomized, controlled pilot study that compared the study treatment against “treatment as usual,” Dr. Brodkin and his team performed a pre-treatment assessment, implemented weekly sessions across the three domains over seventeen weeks in total, and performed a post-treatment assessment. The inclusion criteria included adults age 18 years or older with ASD. The pilot study was designed for those intellectually abled, and will be tailored for more intellectually disabled participants later. The pre- and post-treatment assessments crossed various domains: overall ASD Symptoms, Social Motivation, Social Anxiety, Social Cognition and Attention, Social Skills, Size of Social Network, and Overall Psychological Well-being. Dr. Brodkin also explained that the study team found the need for better measures for social functioning in ASD.

The study intervention included hour-long sessions conducted over seventeen weeks that covered three components. Component 1, which lasted five weeks, was on social motivation and social anxiety. This covered logistics, building motivation, regulating emotion/social anxiety, and cognitive approach to social anxiety. Component 2, which lasted eight weeks, focused on building social cognition and social skills through didactics and video modeling of social skills. Component 3, which lasted four weeks, included generalizing social understanding and social skills to the community. Component 3 was conducted at the Ronald McDonald House in PA, where the participants volunteered to prepare meals. Research has shown that people with ASD benefit by reversing social isolation through volunteering. The study team followed up to see if participants continued to volunteer after the study.

The cohort that went through the intervention showed a significant improvement in Social Responsiveness Scale (SRS) and Social Network Index (SNI) scores as compared to those who received treatment as usual. The results showed that the introduction of video modeling increased the probability of success in carrying out the social skill modeled. In the future, the study team will refine procedures, conduct larger-scale clinical trials, and disseminate the results to community health providers. Later, the research team plans to develop an enhanced program tailored for more intellectually disabled individuals.

Questions and Comments:

Mr. Robison was bothered by the way in which statistics were used to suggest a crisis – in this case, talking about how many adolescents with ASD will become adults this year, indicating this will be a crisis. By emphasizing those who are transitioning into adulthood, he feared that perhaps people would overlook older ASD and their needs. Mr. Robison felt that there were constructive results from this study, but it seemed as if the study was structured for young adults only, and that the goals and approaches would not be appropriate for older adults. While there are very young self-advocates, as well as parents speaking out on their behalf, there is also a large population of older adults, and the NIH should focus on this larger population too. He said this was not meant as a criticism of the work, but the research questions need to be generalized across the population of ASD, and not directed to a very specific demographic. Dr. Brodkin responded that he sees a lot of diversity in his practice. In this study, the eligibility was open for older adults, but they didn’t get many participants who were older, and most of the participants were young adults who were brought to the study by a parent. Dr. Brodkin suggested that they need to think more about how to reach those older adults on the spectrum.

Dr. Geraldine Dawson asked about measuring the outcome in terms of personal experience as well as the possible use of a third-party assessment of how well the participant is doing. Dr. Brodkin answered that they used a combination of self- and informant-reported measures along with performance measures. He acknowledged that it was an important question because the assessment battery was not perfect.

Ms. Samantha Crane commented that, as an autistic individual, she feels that it’s unlikely that recognizing emotions by assessment can predict success in the workplace. Someone with ASD might need support for friendly interactions, but not necessarily deep emotional interactions. In her workplace, they focus on office-specific skillsets, which are not the same as other social skills. Dr. Brodkin suggested that there are certain workplace-specific situations like work feedback or work stress that need to be addressed, and that it was a good point that emotional assessment may not predict workplace success.

Dr. Larry Wexler asked about the methodology, specifically whether they considered using life-size avatars as they scale up as opposed to using undergraduates to roleplay. He found that avatars are not subject to human subject review and can help expose people to situations you would not use with people. Dr. Brodkin answered that it was a great idea.

Committee Business

Susan Daniels, Ph.D., Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC; Juliana Rava, M.P.H., Science Policy Analyst, OARC, NIMH

IACC Strategic Plan Update

Materials related to IACC Strategic Plan Update

Dr. Daniels acknowledged the OARC team, who made this meeting possible and last night’s film screening event so successful. The video of the film As One: The Autism Project is available on the website until August 22, 2017 at NIMH Special Event for Autism Awareness Month - As One: The Autism Project.

Other resources for Autism Awareness Month include:

Dr. Daniels reviewed the final 2016 Summary of Advances publication, for which the Committee vetted many articles over the last year to determine the IACC’s selections for the 20 most significant advances, organized by the seven research questions of the Strategic Plan. Dr. Daniels said that members can write the office to request a copy of the 2016 Summary of Advances, which is also available online. The newly published 2013 IACC Portfolio Analysis Report is available in hard copy and online as well. The office is in the process of preparing the 2014 and 2015 portfolio analysis data for the next report, due out in fall 2017.

A new, revised version of the Autism Research Database has recently been launched. There are new features, such as sections that breakdown funding by federal versus private sources and by geographic location of funded researchers. Dr. Daniels introduced Ms. Julianna Rava, who provided a live review of the new database, showing the expanded details, search functions, and interactive functions. Dr. Daniels welcomed everyone to explore the new database and reports. This research database is made possible almost entirely by the in-house OARC team.

Dr. Cindy Lawler asked if there will be a steady rate of report releases in the future, so that more current years’ data will be available. Dr. Daniels said that OARC is on track to catch up, assuming OARC staffing levels are maintained. OARC also always shares the data with the Committee many months in advance of it being formally released and published.

Dr. Ring asked if other ASD-related syndromes should be reconsidered for inclusion in these reports. Dr. Daniels responded that the Committee did not want to include other disorders in the past, but that it could be discussed and reconsidered. Dr. Gordon suggested that it be put on the agenda for the next meeting.

Dr. Daniels reviewed the status of the IACC Strategic Plan. The seven working groups representing the seven research questions prepared draft chapters for the Committee’s review. She opened the floor to discuss any major issues related to these drafts, suggesting that minor issues, such as editing, could be tabled for now.

Question 1 did not have any major issues. Dr. Reichardt suggested that, in general, some of the material in the chapters may be redundant with other sections, and this should be resolved. Dr. Daniels said she will take IACC feedback such as this for later revision. Currently, the focus of the feedback should be on content.

Ms. Crane suggested that there has been a lot of interest in the development of better adult screening materials. Someone who is reading this might feel that this is not being addressed if they do not read about it near the beginning, such as in Question 1. Dr. Daniels says there needs to be more information about research on adult screening included in Question 6, but a note could also be made in Question 1.

Mr. Robison suggested there is overlap between Question 2 and Question 3, and that it should be included that autism is not subject to a cure. Dr. Daniels indicated that OARC will complete the chapters of the report and then will add that kind of information to the introduction.

Dr. Ruth Etzel noticed that Question 4 talked about biomarkers as a predictive marker that might fit better in Question 1. Dr. Daniels says that if it is basic research, it might affect the chapter placement of the topic.

There was discussion in Working Group 3 about how to present the idea of risk, what they are trying to prevent, and the shift in the community’s perspectives about whether to prevent ASD as a whole or to prevent disability. Dr. David Amaral says that the goal should be to prevent disability and that it would be worthwhile to read the intro to this section because it has taken a significant turn. The majority of the working group was comfortable with this change. There is a paragraph under the environmental piece that mentions the shift. Dr. Lawler also suggested that it would be really important to collect deeper information, not just about autism cases versus controls but to dissect which environmental exposures are linked to the specific aspects of ASD. In addition, many of the environmental exposures wouldn’t have an impact just on autism, but would likely affect other situations as well.

Dr. Gordon asked if they should completely eliminate the idea of preventing ASD. Dr. Pelphrey suggested that eliminating the entire area of research investigating the scientific question or prevention would be a mistake. Ms. Alison Singer suggested that she wouldn’t want to prevent ASD in terms of preventing her daughter, but she would want to prevent the extremely debilitating symptoms that prevent her from accessing everything the world has to offer her. Her concern was that some of the rhetoric in the draft goes too far in terms of stepping back from the importance of preventing some ASD symptoms. She couldn’t imagine that her daughter would not want to be relieved of the symptoms that bother her.

Dr. Dawson mentioned that this is also an issue to consider and coordinate in Chapter 4, and asked why you would want treatments to eliminate the core symptoms of ASD if you don’t want to eliminate ASD. She said it is necessary to decide on the language and incorporate it into both of those chapters, and that one way to resolve this issue could be to reflect both points of view. There are people who would want to eliminate an environmental factor if it reduced the incidence of ASD, but there are also people who would not agree with that plan. Ms. Crane gave the perspective that prevention of disability is not necessarily the best phrase to use. Most ASD self-advocates believe that ASD is a disability. On the other hand, no one wants lead poisoning, so if there is a study that lead poisoning interacts with ASD symptoms, they want that knowledge. Focusing on the interactions between environmental triggers, and ASD brains, and the potential for reducing exacerbation of ASD might be the best framing to use.

Dr. Reichardt suggested that the sex difference section missed concepts about the evolution and function about the X and Y chromosomes.

Dr. Gordon reiterated that it seems the language of the report might go too far and they could explicitly state that the idea of prevention is controversial and there are different opinions about the issue. He sees patients other than those with ASD who also feel there are elements of their disorder that are positive, such as someone with bipolar who feels more creative at times. Dr. Gordon suggested getting an acceptable draft with this language by July for the Committee.

Ms. Singer talked about Question 5, under housing and Medicaid services, and felt that the phrase “person-centered” should be included. Ms. Melissa Harris, who participated in the meeting by phone, will send a few paragraphs for consideration on Medicaid services for Chapter 5.

Dr. Gordon urged the Committee to read the Plan and send in suggestions to the OARC staff so they can get a revised version out by July. May 5 is the deadline for feedback.

Dr. Daniels asked if the Committee objected to adding “Equity” to the core values, based on a committee member suggestion. There were no objections.

Oral Public Comment Session

Oral Public Comments began with Mr. Mike Loewe who spoke about his 17-year-old daughter with Asperger’s syndrome. It took ten years to get her a diagnosis and access to interventions. She was never screened for ASD, and there are still children today who are not being screened. Early detection and intervention are critical. He urged the Committee to work to ensure that every child is screened for ASD. The current model of recommending screening is not enough. Dr. Gordon thanked Mr. Loewe and suggested that this topic be addressed in future meetings.

The next speaker was Mr. Albert Enayati, who has a son with autism. He feels that the work of the IACC has not helped his son. He stated that more than 176,000 genetics studies have been completed, but feels that autism is not genetic. He suggested that we cannot find what is going on in the brain by testing blood and saliva. The answer is to do research, such as research at the MIND Institute and supported by the Simons Foundation, that can look at the effect of somatic mutations in the brain. He said 42% of parents felt that vaccines contributed to their child’s autism. In 2009, the National Vaccine Advisory Committee recommended that research on vaccines and autism be funded, but Mr. Enayati felt that no studies have been undertaken.

The next speaker was Ms. Shari Chase who has a 20- year-old son with autism. He has limited verbal ability but made his own video recently. He has outbursts from not being able to communicate. Adults in transition need immediate support. Ms. Chase suggested we offer post-secondary training and different curriculum for different learners. Scientists should create devices to help manage disabilities, such as wearable electronics. She requested that within 2 months the IACC create a national website that describes which intervention strategies have worked and which have not worked, so that it may be accessible both to practitioners and families. It will save taxpayer dollars to help see these individuals rise to their potential.

Additionally, she asked to take a moment to discuss a syndrome called SUNCT Syndrome, or short-lasting unilateral neuralgiform headache with conjunctival injection and tearing, which occurs most often in males over age 50, but may be more prevalent in people with autism.

The next speaker was Ms. Vashti Johnson, CEO of the Bright Minds Institute in New Jersey. Most recently, they have been working with the NAACP to bring to their attention the number of people in their communities who have autism. They have not been able to develop much more than day program at this point. She mentioned that one school has 250 children who all have Individualized Education Programs (IEPs). They need help from organizations like the IACC to raise awareness of urban issues all over the U.S. Otherwise, there is a risk of missing the needs of a huge gap in the population. Mr. Callen Johnson, who also works with Bright Minds, spoke about the issue of improving safety in the autism community. School security, police officers, and prison guards are often not aware of how to interact with autistic people. Without this understanding, they can unintentionally hurt someone. He requested that the IACC provide educational resources to help law enforcement to better understand autistic people.

Dr. Linda Varsou was the next speaker, and she discussed genetic studies. She believes these studies do not often focus on the “trio” of child, mother, and father—often because one member of the trio denies the diagnosis. She believes researchers also need to look at epigenetics, and the effects of environmental pollution, chemicals, prenatal factors, and diet. Research on animal studies has given misleading results because their immune systems are different than immune systems of humans. She said that neuroimaging is very invasive, especially when it involves a young brain. There are stories of complaints from people after they have an MRI. She said that the MRI changes the spin and orientation of electrons in the brain. Finally, she requested that the IACC look at the effects of immunizations in babies, whose immune and nervous systems are immature. The increase in the number of publications on autism has not had much of a positive impact on the lives of people with autism.

The last speaker was Ms. Dena Gassner, who is a Ph.D. student in Social Welfare and the mother of a young adult with autism. Her son is on track to graduate with honors from Marshall University. She is also an autistic adult. She has served as a research reviewer and felt that not a single currently funded study would positively affect families or people with autism. Specifically, research to understand and address co-occurring conditions should be prioritized for more funding. Research that addresses policy considerations is also needed to improve healthcare disparities, such as for those who are transgender. Some public services are inaccessible to many families. None of the research that she looked at as a reviewer addressed these issues. In the past, a researcher has asked her what elopement is, and that same researcher was presenting on autism outcomes later that day. People with autism should be included as collaborators to explain why sample size is too small or why the population is not being addressed correctly.

Dr. Gordon thanked the speakers for their contributions.

Link to the list of Oral Public Comments

Summary of Written Public Comments

Dr. Karen Mowrer summarized the written public comments, organized under six topics. The first topic was vaccines and autism, which included a request for people to see the documentary Vaccines Revealed. Other commenters suggested there may be links between autism and cow’s milk, Tylenol, and vaccines.

The second topic was autism research priorities. Commenters would like to see research in applied behavioral analysis. One commenter would like to see research in potential links between autism, language development, and umbilical cord clamping, and also encouraged more research on identical twins. Another commenter suggested that genetics research should be de-prioritized. Instead, research should address actual needs rather than be influenced by the priorities of outside organizations. Commenters would like to see more funding for lifespan outcomes, co-occurring conditions, assistive technology, and diagnostic disparities. A commenter also requested that the IACC consider studies on the effect of soy on brain development.

The third topic was transition to adulthood, specifically the lack of housing and care options, especially for those being cared for by aging parents. There was a comment highlighting the 10th Annual Hilibrand Symposium, held on April 26, 2017. ASAN expressed concern that only two percent research funding went to research on service effectiveness. Another commenter would like to address transition in the public school system.

The fourth topic was autism diagnoses and interventions, and how people can gain access to cutting edge treatment. A commenter requested that interventions focus on individual strengths and interests as well as on the psychology of the individual.

The fifth topic was the role of the IACC, and some commenters felt that their public comments from previous meetings have not been sufficiently discussed or addressed by the Committee. Safe Minds asked the IACC to do more to help address the issue of personal safety of autistic individuals. ASAN is concerned about the seven question areas of the IACC Strategic Plan and believes the new version of the Plan should reflect the growing consensus that autism cannot and should not be cured.

The final topic from written public comments was on autism and lifespan/quality of life. The commenter suggested that there should be a focus on how to improve quality of life for adults with autism, especially given that people with autism have a much higher mortality rate than the general population.

Link to the list of Written Public Comments

IACC Committee Member Discussion of Public Comments

Mr. Robison pointed out that the public commenters come from all over the country, and although he understands that there are time constraints, he feels that they deserve to be heard and to have their comments discussed. Regarding the public’s questions about research priorities, he suggested a system be developed for better answering those kinds of questions. Dr. Gordon agreed that the Committee should address the public comments right now. Dr. Reichardt said that somatic mutation studies of the brain must be conducted post-mortem, which due to the relative lack of available brain tissue, makes this kind of research difficult. Dr. Amaral thanked Mr. Enayati for the acknowledgement of his organizations and encouraged people to go to the MIND Institute website and donate. Dr. Pelphrey added that all of the genetics work cited as being extravagant was actually necessary to provide the foundation for research on somatic mutations. This is an example of how many studies depend on the existence of others. In addition, Dr. Gordon pointed out that there have been many studies that have looked for a link between autism and vaccines, there is no increase in autism risk between those who did receive vaccines compared to those who did not.

Dr. Dawson appreciated the comments highlighting the important topic of safety in the ASD community. This issue needs to be a high priority in the Strategic Plan. Dr. Gordon agreed that the research in this area is underfunded and must be a re-doubling of efforts to include minorities in this kind of research. Ms. Crane mentioned that participatory research design is a big part of that, and the point-of-view of communities is needed upfront. Dr. Pelphrey talked about health disparities between genders, and said biomarkers and screeners should apply equally to both groups.

Dr. Gordon thanked Mr. Robison for bringing forward the concerns of the community.

Panel on Advances in Autism Biomarkers Research

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

Dr. James McPartland gave a presentation reviewing the state of biomarker research. There are a lot of tools that can be used for diagnosis, but one can also use a clinical eye and judgment. The definition of a biomarker is any characteristic that can be objectively measured and evaluated as an indicator of normal biological processes, pathogenic processes, or pharmacologic responses to a therapeutic intervention. Importantly, biomarkers might help us understand what to do when we see autism, observe a treatment response, or make a prognosis. Biomarker research in this field is a challenge; because autism is a developmental disorder, the target is always moving. It is unknown whether biomarkers change across age and development. There are also multiple etiologies and heterogeneity in ASD. It is possible to make clinical decisions based on an individual’s strengths and weaknesses, and maybe that is how we the development of biomarkers should be approached.

There is a positive biomarker study for every symptom; for instance, N170, a particular brain electrical-activity pattern that occurs in response to viewing faces, shows potential as a promising biomarker. Biomarkers should be specific to the behavior being targeted. When researchers measure biomarkers, they have to consider how a child is behaving in context. They want to see what happens as symptoms improve during the course of behavioral treatment. Biomarkers cannot be used in clinic because of remaining concerns about reproducibility—many results show heterogeneity and results cannot always be reproduced. There are other perennial issues – underpowered studies, and methodological issues – and there is currently no way to parse out the noise. Comparative data for individuals with and without treatment is also needed.

Biomarkers can be useful, but we need more rigorous studies, and we need to share research paradigms. We also need multi-site studies, but it is challenging to ensure that methodology is the consistent within those paradigms. Longitudinal studies are also important, such as the Autism Biomarkers Consortium for Clinical Trials, which uses EEG and eye tracking while controlling for methodological weaknesses. We can also improve our understanding by assessing the ecological validity of biomarkers. We put people in dark, sound-proof labs that do not resemble the context that gives people with autism their difficulties. Lastly, we want to think about the practicality of biomarkers. There may be a ceiling of utility on biomarkers set by things like cost and accessibility.

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

Dr. Heather Hazlett reviewed why they study early brain development in autism. Even during the initial identification of autism in 1943, it was observed that children with autism have large heads. Evidence showed increased head circumference in early years, although there were methodological issues with that evidence. Later imaging studies showed support for bigger brains in early development that tapers off as individuals get older. Therefore, Dr. Hazlett’s research team wanted to focus on these early development studies.

They started by looking at toddlers and observed larger brains at age two, but changes were not observed after that, which meant that the change happened before then. They focused on the time period from birth to age three, when there is known to be significant brain growth and critical periods of development occurring. They studied whether brain size differences could detect autism. A previous study showed that the onset of autistic behavior and brain enlargement happened in the latter part of the first year of life. Their population was predominantly male, with significant differences in functioning by age two between those at high risk and those normally developing. There was an increase in brain growth, both in brain volume and surface area in children with autism. There was no relationship with brain volume enlargement and severity of autism earlier than two years, but they did see it after two years.

Dr. Hazlett talked about studying whether early surface area could be a biomarker for autism. They used a machine-learning algorithm to predict autism in other children. They think that early surface area expansion may contribute to brain overgrowth in the second year of life, and that they can capture brain differences before behavioral changes are evident. Contributory mechanisms could include ASD risk genes, altered neurogenesis, etc. Neural circuitry was examined using Diffusion Tensor Imaging (DTI) scans which showed a relationship in white matter tracts and repetitive behaviors, as well as brain volume related to social behaviors in high risk infants. In the future, they will look to combine these data, look at individual profiles, and incorporate genetics and environmental risk data.

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

Dr. Mark Shen talked about an early brain anomaly that his team found, and what might be driving it. He observed excessive extra-axial cerebrospinal fluid (CSF) in infants who later developed ASD, and this elevated CSF remained through 24 months of age. They started with a pilot study, and then scaled up the study to include 343 infants and used the same methodology. They created a fully automated method of quantifying the CSF which uses open source software, and they encourage labs to replicate their findings.

They found that children who developed autism had 18 percent more fluid at six-months than high-risk children who did not develop autism and low-risk children who did not develop autism. There were 47 babies who developed autism, and they looked within this group for subgroups of severity. There was a more pronounced increase in CSF in those children with more severe autism symptoms (24 percent more fluid at six months and 15 percent more at two years). Girls who developed autism had an even more pronounced difference and future studies will look more closely at these sex differences.

They also undertook a study to determine if CSF could be used as a single brain measure at six months to predict autism diagnosis at 24 months. The accuracy of this was 69 percent, which is not yet clinically applicable. When they looked at data from the original MIND 2013 study, there found a similar accuracy level of 72 percent, meaning they are picking up about 70 percent of children who will develop autism. This observable anomaly is notable because it can be seen with the naked eye. Recognizing that replication in autism research can be challenging, they were encouraged that this may become a clinically useful biomarker.

Dr. Shen then reviewed some unpublished work. They are looking at CSF as the filtration system of the brain, with a role in removing cytokines and metabolites from the brain. If there is an increase in CSF, it may mean that the CSF is not recycling sufficiently or acting properly as a filtration system. Their follow-up studies are looking to determine the specificity in subtypes of ASD. They are using animal models to look at CSF circulation, and are also looking to see if there are genetic variants in the extra-axial CSF, using probands (family quads of infant, parents, siblings). Finally, they are combining these findings with other brain and behavioral measures to improve this prediction accuracy.

Using the Language Environment Analysis (LENA) Recorder and a language pedometer to determine language input and output over the course of several days, they found that 20 percent of high-risk infants are hyper-vocalizing at nine months, even though they are receiving the same amount of verbal input. These hyper-verbalizers also had lower scores in social babbling. Researchers don’t yet know if these children will be diagnosed with ASD, so that remains to be determined. These results together provide a multi-dimensional approach for identifying early markers of ASD. Dr. Shen wants to improve prediction in infancy, and also develop better treatments that are more personalized.

Digital Clinical Assessment for Diagnosis and Treatment Outcome Measurement

Robert Schultz, Ph.D., R.A.C. Professor of Psychology, Departments of Pediatrics and Psychiatry; Director of the Center for Autism Research, University of Pennsylvania

Dr. Robert Schultz discussed the applications of new technologies and how they can begin to measure, with much more precision, the biomarkers and behaviors in ASD. Behaviors are a representation of neural circuitry activity. ASD is a behaviorally defined condition, and everything observed by an expert can also be digitally captured and analyzed to make predictions. There are some advantages to this technology, such as better accuracy and no lapse in attention or memory.

Dr. Schultz has focused on facial expression and other nonverbal communication. By first looking at gross motor behaviors, he showed computer mapping of a child’s motor behaviors using whole body representation. Images captured by cameras are stitched together using computer vision software to allow for whole body analysis. Immaturity in gross motor behavior is observed in autism at an early age. Dr. Schultz and his colleagues can measure exploration, social approach, and motor learning using this technology. They are measuring imitation skills, which can be difficult for children with autism, using wearable technology measuring fluidity and skill. They are also using this technology to study synchronous motor learning such as dancing.

In nonverbal facial communications, Dr. Schultz uses software technology to measure with great detail the nuance of facial expression, eye gaze, and saccades. They can measure dyadic interactions using synchronized video. They used tree cameras to diagnose autism from a three-minute conversation, using landmark features on the face, such as mouth movement, head poses, body movement, etc. to measure the synchrony between the two people in the conversation. Using this method, they achieved 90 percent accuracy in predicting who had autism.

The potential benefits of these technologies are: reduced waitlists for screening, more accurate diagnoses, earlier intervention, and therefore, better outcomes. These technologies are scalable and can help with research reproducibility, and will provide a much richer set of data to use with genetics and other biomarker studies.

Panel Discussion

Ms. Crane liked the movement studies, but wondered if people with autism may be aware of their movement and behaviors. She also asked about gender and racial diversity, as well as cultural differences in mannerisms. Dr. Schultz talked about using those predictors across ages and other variables in the future. Differences in culture can affect not only movement, but also language. They are trying to get a much more diverse population, although some small studies so far have not shown an interaction effect.

Dr. Gordon asked if the UNC studies were able to look at minority populations and if there was an interaction effect. Dr. Hazlett did use a diverse population because they were mindful of representation when they enrolled the participants and funded families who might not have otherwise been able to travel to participate. Dr. Shen talked about using covariate analyses, and this did not reveal any differences.

Ms. Singer asked Dr. Shen about what he saw in the low-risk children who went on to develop ASD. Dr. Shen answered only three low-risk kids went on to develop ASD, so the population was small. The brain anomaly in preliminary results did show higher CSF.

Dr. Diana Bianchi asked the panel whether it is better to present the data in terms of sensitivity or if would be better to use positive predictive values. Dr. Hazlett acknowledged that they need to be consistent in the reporting of data.

Dr. Dawson wondered if the next step should be to look at these same measures in different populations, such as brain injury or metabolic issues. This would be important to show that these are uniquely autistic markers, rather than a biomarker more indicative of neuroinflammatory issues in general. Dr. Shultz answered that it is harder to do this with an imaging-based biomarker than other biomarkers. At Children’s Hospital of Philadelphia, they are hoping to start measuring these things in all of the children they see. Dr. Shen acknowledges that specificity is an issue for diagnosis in autism, so we need collaborations around the world to look at other developmental disabilities, such as ADHD, to answer if this really is specific for autism.

Dr. Reichardt asked about pressure in terms of CSF or lymphatics for drainage. Dr. Shen answered that the children did not have increased cranial pressure; instead the skulls are expanded with the increase in CSF. They are collaborating to better understand lymphatic tissue and the cleaning of the brain.

Dr. Gordon asked if these predictors will work in a more general population—in other words, are the same phenomena observed in lower risk individuals? Dr. Hazlett said she is funded to conduct another study that will test the specificity between autism and Fragile X. However, she is concerned that if they rolled this out into a general population at this point, the predictive capability would be muddied by many other variables.

Dr. Gordon asked about the prospect of doing a general population screening at an earlier age. We know that even with implementation of early screening, access to treatment can still be delayed. Dr. Shen answered that some of these technology studies support a first-tier screening, and would incorporate MRI as a second tier. Dr. McPartland suggested that they should translate treatments for delivery by people who are not clinical experts, such as families, teachers, or non-clinical professionals, to accompany application of these predictive capabilities in the real world. Dr. Shultz said that every paradigm they use is five minutes or less, and that they envision that someday nurses will be able to apply this to everyone they see.

Dr. Gordon asked if the screening could be done via video. Dr. Shultz answered that they have asked for that from cable TV providers, which might be able to facilitate an autism screening channel someday.

Dr. Dawson presented the idea of a risk calculator approach, in which doctors can use risk factors to increase surveillance. Dr. Pelphrey added that if they are able to it would also be important to eventually identify biomarkers to predict a treatment response and identify responders to treatment.

Dr. Wexler asked if there is any advantage to characterizing these findings as predictive of autism versus predictive of a “constellation” of behaviors that we interpret of autism. In other words, is there benefit to calling it autism at that early age rather than saying this child is likely going to develop a group of behaviors that will need intervention. In the world of early intervention, a diagnostic category is not necessarily an advantage. Parents do not necessarily want a diagnosis at that age; they are more concerned about whether there are signs of a problem. Dr. Hazlett suggested that, with this knowledge, we can perhaps alter that trajectory with interventions such that we are not looking a diagnosis so much as looking at what can be positively changed.

Dr. Gordon thanked the panel.

“Learn the Signs, Act Early” Update

Stuart K. Shapira, M.D., Ph.D., Chief Medical Officer and Associate Director for Science, National Center on Birth Defects and Developmental Disabilities, CDC

Dr. Stuart Shapira said the basis of this program is to identify children with ASD and other developmental disabilities so that families and children can get the help they need as soon as possible. The goal is to increase early identification by helping families learn the signs of typical development, and act early if there are concerns.

The materials at CDC are research-based and parent-friendly to help monitor children through age five. The materials do not have any copyright, and are available both in English and Spanish. The CDC also provides free educational training for healthcare professionals and for early educators. The materials are available on the CDC website, or by request from the CDC.

The newest children’s book developed by the program is called Where is Bear?, and it is targeted to two-year-olds. Additionally, there is a Milestones in Action video library that shows parents what a milestone looks like. There is also a Milestone Tracker app for parents to track these early developmental milestones, and it alerts parents when there’s a concern. The Milestone Tracker app will be released in May. Photos and videos from the library are included in the app, as well as a capability to email the tracker information. There are also parenting tips and activities, and healthcare appointment features.

The CDC program also supports 45 ambassadors to improve early identification of children with developmental delays. The website is: CDC Learn the Signs, Act Early.

Dr. Gordon asked about the process for updating the materials as new information, recommendations, or research findings become available. Dr. Shapira answered that all of the information is evidence-based and gets updated but he was not aware of a specific process. Dr. Shapira’s team member, Ms. Katie Green, who participated by phone, said they are constantly evaluating materials to reflect the best and latest information available. The app is continually being improved over time.

Dr. Daniels asked what the differences are between the Learn the Signs. Act Early program and the Birth to Five: Watch Me Thrive program. Dr. Shapira answered that CDC has been a key contributor to Birth to Five: Watch Me Thrive since its development. It is part of a broader effort. Learn the Signs. Act Early is a complement to, but not a replacement for, Birth to Five: Watch Me Thrive.

Dr. Bianchi asked if the program is intended to be something parents bring to a pediatrician, or if it is to further inform parents. Dr. Shapira answered that the CDC is collecting data from this app, but it is primarily for the parents. It facilitates developmental monitoring, not developmental screening, but it should alert parents when a screening is advised. Ms. Green confirmed that they see information in the aggregate form only.

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, OARC, NIMH; Joshua Gordon, M.D., Ph.D., Director, NIMH and Chair, IACC

Dr. Daniels began by reviewing last year’s revised process for nominating articles. This process allowed members to submit nominations throughout the year, and each Committee meeting included a discussion period during which studies could be eliminated to narrow the list. Dr. Mowrer reviewed the results of a survey about the new process. Most members were satisfied with the process, with only one member who was not in favor. The Committee now receives a monthly solicitation for nominations by email. OARC does not receive many responses to each solicitation, so the Committee may want to reconsider how frequently the emails are sent and also whether to continue the requirement that submitted nominations be accompanied by a short, written justification. The office would send out the final nomination list in January for voting, provide the lay-friendly summaries for review, and then release the completed report in April.

Dr. Reichardt mentioned his concern about the survey since a majority of the IACC members did not fill it out. He did not respond to the survey either. He suggested sending the emails soliciting nominations more frequently – perhaps every other week – because IACC members read scientific papers all the time. Dr. Wexler suggested sending an email out with a list of studies that came out that month. Dr. Daniels mentioned that in the past the committee had not wanted a pre-generated list from which to select advances and was concerned that such a list might miss specific topics that fall under the members’ expertise. Dr. Gordon mentioned that there are already over 2,000 publications on autism in PubMed this year, so collecting all publications in a list for review might be an unmanageable task. Dr. Dawson suggested that the office might highlight very high profile studies, or high profile journals. Dr. Daniels again mentioned that in the past the committee had wanted the selections to reflect their opinions rather than have OARC direct their attention to certain publications. Dr. Daniels also suggested that committee members could also send OARC an email at the moment they are reading an article so they do not have to wait for a data call e-mail.

Dr. Daniels concluded that OARC should continue the current frequency of the emails (monthly), but the Committee should know that members can email her nominated articles at any time with the subject line “Summary of Advances.” They will continue vetting nominations at each IACC meeting throughout the year.

Dr. Daniels asked if they should continue to require the justification, and Ms. Singer said the justification is helpful. Dr. Gordon added that they help to ensure that these papers have rigor to them. Without the justification, it is more difficult, and it is especially helpful to look at the sample sizes because some of these studies tend to be underpowered. That will help the IACC judge their impact.

Dr. Gordon briefly reviewed the articles that had been nominated so far this year. The Committee decided to remove seven studies from the nomination list because of statistical issues, small sample sizes, or a need for increased rigor.

Round Robin

Dr. Gordon reported that the NIMH awarded 12 grants for service delivery and strategies to improve functional outcomes. NIMH is aiming to target more transition-age youth. He also reported that NIMH has agreed to continue its collaborative agreement with the Autism Sequencing Consortium for another five-year grant period, with the goal of sequencing 50,000 autism subjects. All of the data from the effort are made publicly available. Finally, he described a new work group of the NIMH Advisory Council that will help determine how to prioritize genomics research in the future, especially considering the great many advances that have been made in that field.

Dr. Bianchi suggested to not throw genetics out yet, as it is important and can direct therapy. She mentioned a recent workshop that highlighted the work of the Intellectual and Developmental Disabilities Research Centers. A white paper from the meeting, which may be of interest to the IACC, will be coming out soon.

Dr. Dawson reported that the International Society for Autism Research (INSAR) has a meeting on May 10-13 in San Francisco. She also mentioned their regional meetings around the world; the next one will be in South Africa Sept 7-9. INSAR also now has a new mechanism to develop policy briefs, with the goal of promoting thinking about how to translate research to policy and practice.

Dr. Lawler reported that this is the eighth year the Environmental Epidemiology of Autism Research Network (EEARN) will hold a meeting at the INSAR meeting to bring together researchers interested in studying risk factors. EEARN promotes career development of early investigators and facilitates their interaction with more senior investigators. This year they will be incorporating a “speed dating” exercise to connect researchers, as well as a number of “lightning” (short, fast) talks. Some of the specific topics they will be discussing include heterogeneity and specificity of risk factors. They are also looking to expand into a more international forum and hope to make 11 travel awards this year.

Dr. Judith Cooper reported that they are focused on communication disorders, and are seeing applications coming in at all levels of research career paths. Applicants are now looking at language and communication and other challenges, especially in people who are minimally verbal.

Dr. Reichardt reported that last year the Simons Foundation released 500 whole genome sequences from the Simons Simplex Collection (SSC) and expect to have whole genome sequencing of the entire Collection completed by the end of the year. The Simons Foundation made a five-year commitment to the University of Edinburgh to collaborate on developing animal models. The Simons Foundation has collected samples from about 18,000 individuals with autism towards the goal of obtaining 50,000. Through a pilot project, they have exome sequenced 460 of them. They have also started a new collaborative group with a number of faculty from MIT.

Dr. Tiffany Farchione reported that next week is the FDA Patient-Focused Drug Development meeting focused on autism.

Dr. Nicole Williams reported that the Autism Research Program reviewed funding recommendations and the panel decided to fund nine projects.

Ms. Amy Goodman reported that she is a self-advocate and has not yet found a job. She would like to know if there is a program that can help people on the spectrum keep a mortgage, even without a job, such as a refinance program for people with disabilities. Dr. Gordon answered that Dr. Jennifer Johnson may have an answer.

Dr. Laura Pincock reported that the AHRQ will soon release two new reports on autism. The first is focused on sensory challenges and the second on medical therapies.

Dr. Wexler reported that ED has been running competitions and publishing new grant priorities, however they have no budget so there will be no announcements until they receive funding.

Ms. Singer reported that the Autism Science Foundation will make the TED-style talks from last month’s 2017 Autism Science Foundation Day of Learning freely available online. This Friday, they will announce the recipients of the latest round of pre- and postdoctoral fellowships. They are currently reviewing one round of accelerator grants and are accepting new applications for those grants, which seek to fund projects that leverage novel findings or enable a rapid research response.

Dr. Shapira reported that the CDC has a Study to Explore Early Development (SEED), which evaluates genetic and environmental risk factors for autism. All approvals of the third phase are completed and enrollment will start this summer. He will tentatively plan to deliver and update and report on SEED at the October IACC meeting.

Closing Remarks

Dr. Daniels will be working with her staff in OARC to update the Strategic Plan with the goal of providing a finalized draft in time for discussion at the July 26 IACC meeting.

Adjournment

Dr. Gordon thanked the Committee and adjourned the meeting at 4:34 PM.


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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
Presentation Presenter(s)
Expect More – An Autism Adventure (PDF – 509 KB) The Honorable Mike Lake, PC, MP, Member of Parliament for Edmonton-Wetaskiwin, Canada
Social Security Administration Disability Programs (PDF – 1 MB) Melissa Spencer, Deputy Associate Commissioner, Office of Disability Policy, Social Security Administration
Report from Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities (PDF – 321 KB) Scott Michael Robertson, Ph.D., Andrew Arias, Office of Disability Employment Policy, U.S. Department of Labor
Developing Services to Enhance Social Functioning in Adults with Autism Spectrum Disorder (PDF – 1 MB) Edward Brodkin, M.D., Associate Professor of Psychiatry, Perelman School of Medicine at the University of Pennsylvania
Committee Business (PDF – 1 MB) 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<
Practical and Scientific Challenges in Biomarker Development for ASD (PDF – 708 KB) 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
Differences in early brain development predict ASD outcomes in high risk infants (PDF – 2 MB) Heather Hazlett, Ph.D., Assistant Professor of Psychiatry, Carolina Institute for Developmental Disabilities, University of North Carolina School of Medicine
Extra-Axial Cerebrospinal Fluid as a Potential Biomarker in Infants Who Develop ASD and Insights into the Role of Early Behavior (PDF – 1 MB) Mark Shen, Ph.D., Postdoctoral Fellow, Carolina Institute for Developmental Disabilities, University of North Carolina School of Medicine
Digital Clinical Assessment for Diagnosis and Treatment Outcome Measurement (PDF – 1 MB) Robert Schultz, Ph.D. , RAC Professor of Psychology, Departments of Pediatrics and Psychiatry, Director of the Center for Autism Research, University of Pennsylvania
"Learn the Signs, Act Early" Update (PDF – 1 MB) Stuart Shapira, M.D., Ph.D.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
Summary of Advances Discussion (PDF – 86 KB) 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

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