Full Committee Meeting - November 17, 2015
|Date:||Tuesday, November 17, 2015|
|Time:||9:30 a.m. to 5:00 p.m. Eastern|
|Place:||Fishers Lane Conference Center
5635 Fishers Lane, Room 508/509/510
Rockville, MD 20852
Map and Directions
|Cost:||The meeting is free and open to the public.|
|Agenda:||To introduce the members of the new committee and discuss business, updates and issues related to ASD research and services activities.|
|Access:||Twinbrook Metro Station (Red Line)|
|Registration:||On-site registration is from 8:30 a.m. to 9:30 a.m. Pre-registration is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis.
Online pre-registration will close at 5:00 p.m. Eastern the day before the meeting. After that time, you will need to register onsite the day of the meeting.
|Conference Call Access:||Dial: (888) 946-7302
Access code: 1453351
|Deadlines:||Notification of intent to present oral comments: Monday, November 9, 2015 by 5:00 p.m. Eastern
Submission of written/electronic statement for oral comments: Tuesday, November 10, 2015 by 5:00 p.m. Eastern
Submission of written comments: Tuesday, November 10, 2015 by 5:00 p.m. Eastern
Please note: Written public comments and statements accompanying oral public comments should be sent to IACCPublicInquiries@mail.nih.gov. The NIMH Office of Autism Research Coordination (OARC) anticipates that written public comments received by 5:00 p.m. ET, Tuesday, November 10, 2015 will be presented to the Committee prior to the November 17th meeting for the Committee's consideration. Any written comments received after the 5:00 p.m. EST, November 10, 2015 deadline through November 16, 2015 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. Please read the IACC Public Comment guidelines.
|Contact Person:||Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 6182A
Rockville, Maryland 20852
Phone: (301) 443-6040
|Public Comment:||Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. ET on Monday, November 9, 2015, with their request to present oral comments at the meeting. Interested individuals and representatives of organizations must submit a written/electronic copy of the oral presentation/statement including a brief description of the organization represented by 5:00 p.m. ET on Tuesday, November 10, 2015. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on the number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline.
In addition, any interested person may submit written public comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 5:00 p.m. ET on Tuesday, November 10, 2015. The comments should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. ET, Tuesday, November 10, 2015 will be presented to the Committee prior to the meeting for the Committee's consideration. Any written comments received after the 5:00 p.m. EST, November 10, 2015 deadline through November 16, 2015 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.
In the 2009 IACC Strategic Plan, the IACC listed the "Spirit of Collaboration" as one of its core values, stating that, "We will treat others with respect, listen to diverse views with open minds, discuss submitted public comments, and foster discussions where participants can comfortably offer opposing opinions." In keeping with this core value, the IACC and the NIMH Office of Autism Research Coordination (OARC) ask that members of the public who provide public comments or participate in meetings of the IACC also seek to treat others with respect and consideration in their communications and actions, even when discussing issues of genuine concern or disagreement.
|Please Note:||Remote Access:
The meeting will be open to the public through a conference call phone number and webcast live on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the webcast or conference call, please send an e-mail to HelpDeskIACC@gmail.com or by phone at 415-652-8023.
Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 5 days prior to the meeting.
As part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.
Meeting schedule subject to change.
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|9:30 a.m.||Call to Order
Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, National Institute of Mental Health (NIMH) and Executive Secretary, IACC
|9:35 a.m.||Welcome and Opening Remarks
Bruce Cuthbert, Ph.D.
Acting Director, NIMH and Chair, IACC
Francis Collins, M.D., Ph.D.
Director, National Institutes of Health
|10:00 a.m.||Introduction of New and Returning IACC Members|
|11:00 a.m.||Morning Break|
|11:15 a.m.||Committee Business
Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC
|1:00 p.m.||Oral Public Comment Session|
|1:45 p.m.||IACC Committee Member Discussion of Public Comments|
|2:15 p.m.||Afternoon Break|
|2:25 p.m.||Committee Member Updates|
|4:45 p.m.||Closing Comments
Bruce Cuthbert, Ph.D.
Acting Director, NIMH and Chair, IACC
Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, National Institute of Mental Health (NIMH) and Executive Secretary, IACC
Schedule is subject to change. Meeting may end prior to or later than 5:00 PM depending on the needs of the committee. For more information on upcoming events, please see http://iacc.hhs.gov/meetings/iacc-meetings/
Next IACC Full Committee Meeting:
- Tuesday, January 12, 2016 – Building 31, NIH Campus, Bethesda, MD
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- Call to Order and Roll Call
- Welcome and Opening Remarks
- Introduction of New and Returning IACC Members
- Committee Business
- Summary of Advances
- The Strategic Plan and Subcommittees
- IACC Website
- Oral Public Comment Session
- Written Public Comments
- IACC Committee Member Discussion of Public Comments
- Committee Member Updates
- Closing Comments
The Interagency Autism Coordinating Committee (IACC, also referred to as "the Committee") convened a meeting on Tuesday, November 17, 2015, from 9:00 a.m. to 4:54 p.m. at the Fishers Lane Conference Center in Rockville, Maryland.
In accordance with Public Law 92-463, the meeting was open to the public. Bruce Cuthbert, Ph.D., Acting Director, National Institute of Mental Health chaired the meeting.
Bruce Cuthbert, Ph.D., Chair, IACC, National Institute of Mental Health (NIMH); Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), (NIMH); James Ball, Ed.D., BCBA-D, JB Autism Consulting; James F. Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Aaron Bishop, M.S.S.W., Administration for Community Living (ACL): Francis S. Collins, M.D., Ph.D., Director, National Institutes of Health (NIH); Judith A. Cooper, Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD) (representing James F. Battey, M.D., Ph.D.); Samantha Crane, J.D., Autistic Self Advocacy Network (ASAN); Geraldine Dawson, Ph.D., Duke University; Amy Goodman, M.A., Autism NOW Center; Shannon Haworth, M.A., Association of University Centers on Disabilities (AUCD); Jennifer Johnson, Ed.D., Administration for Community Living (ACL) (representing Aaron Bishop M.S.S.W.); Elisabeth Kato, M.D., M.R.P., Agency for Healthcare Research and Quality (AHRQ); Alice Kau, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (representing Catherine Spong, M.D.); Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (representing Linda Birnbaum, Ph.D.); Cynthia Moore, M.D., Ph.D., Centers for Disease Control and Prevention (CDC); Brian Parnell, M.S.W., C.S.W., Utah Department of Human Services; Kevin Pelphrey, Ph.D., Yale University; Edlyn Peña, Ph.D., California Lutheran University; Louis Reichardt, Ph.D., Simons Foundation Autism Research Initiative; Robert H. Ring, Ph.D., Autism Speaks; John Elder Robison, College of William and Mary; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); 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 and Roll Call
The Interagency Autism Coordinating Committee (IACC) convened on November 17, 2015. Dr. Susan Daniels called the meeting to order at 9:30 a.m. and took roll call. She welcomed the members of the IACC; the IACC’s new Chair, Dr. Bruce Cuthbert; Dr. Francis Collins, Director of the National Institutes of Health (NIH); and members of the public.
Welcome and Opening Remarks
Dr. Cuthbert, Acting Director, NIMH, and Chair, IACC, welcomed new and returning members to the first meeting of the newly reconstituted IACC and thanked Dr. Daniels for her leadership and service. He also acknowledged Dr. Thomas Insel, who left NIMH at the end of October, for his leadership in NIH’s autism efforts and his work on this committee over the past 13 years. Dr. Cuthbert said that the IACC was reauthorized by the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (CARES Act) and remarked that the members represent a broad array of perspectives and expertise that will be extremely helpful as the committee carries out its responsibilities. He also noted that the Environmental Protection Agency (EPA) has joined as a new federal member, represented by Dr. Ruth A. Etzel, and that the Agency for Healthcare Research and Quality (AHRQ) is rejoining the IACC, represented by Dr. Elizabeth Kato.
Dr. Cuthbert also offered some remarks about his background and said that he has been at NIMH since 1998, with a four-year hiatus at the University of Minnesota on the psychology faculty, and his major area of research has been the psychophysiology of emotion and anxiety disorders. He also said that his long background in autism research includes the first study he carried out in his scientific career and additional experience through his family’s work. More recently, at NIH and NIMH, he has been leading the Research Domain Criteria (RDoC) initiative. Dr. Cuthbert said that he is looking forward to working with the IACC and to contributing to the advancement of autism research and services work through his role as Chair of the IACC and as Acting Director of NIMH. He also said that he hopes the public will continue to share its perspectives, concerns, and ideas with the committee through the important function of public comment.
Dr. Francis Collins, NIH Director began his remarks by saying that DHHS Secretary Sylvia Burwell hopes to attend a future IACC meeting, and he expressed thanks for the role IACC members will play in the committee’s advisory capacity. He reflected on Dr. Insel’s legacy as IACC Chair for 13 years and expressed his strong support for Dr. Cuthbert as the new Chair. Dr. Collins noted that Dr. Josephine Briggs, Director of the National Center for Complementary and Integrative Health, will attend IACC meetings when he cannot, and he pointed out that four other Institute Directors are members of the committee—a reflection of how seriously NIH takes the charge of this committee and how committed NIH is to participating in the deliberations in a meaningful way.
Dr. Collins said that NIH invested $189 million in autism research in FY 2015 spread across a wide range of science and programs, including the BRAIN Initiative, the Autism Centers of Excellence Program, the Biomarkers Consortium project, ServASD, and the National Database for Autism Research (NDAR). He said that the IACC plays an important role in providing DHHS and other member agencies with public input that can be used to plan and implement programs and also offers opportunities to identify partnerships to enhance services and research that will benefit the autism community. Dr. Collins thanked Dr. Daniels for her efforts in managing the IACC over the past several years, ensuring that the deliberations of the group are captured and that the recommendations of the IACC and the Strategic Plan are presented articulately and effectively. He also thanked all IACC members for the time they will be taking to participate in this important work.
Introduction of New and Returning IACC Members
Committee members introduced themselves, and indicated whether they were new members, continuing members, and/or alternate members. Dr. Cuthbert thanked Dr. Koroshetz for his assistance as he began his job as NIMH Acting Director and commented that this IACC is an impressive group that includes excellent representation from the self-advocacy community, the federal government, foundations, and universities.
Dr. Susan Daniels began by saying that the goal of the committee is to find common ground in areas where member agencies and organizations can work together to move the field forward and provide for improvement in autism research and services. She emphasized that the advisory role of the IACC does not fund research or allocate research dollars, control funding of federal programs, or set policy. Dr. Daniels also said that the IACC will be gathering and sharing data from federal agencies and private organizations to help inform deliberations, and she noted that the committee plans to coordinate with additional federal advisory committees that work in areas related to autism or disabilities, such as the Interagency Committee on Disability Research, the National Council on Disability, and the President's Committee for People with Intellectual Disabilities.
Dr. Daniels outlined the specific IACC tasks under the Autism CARES Act of 2014, which includes producing an annual update of the IACC Strategic Plan for ASD and an annual Summary of Advances in Autism Spectrum Disorder Research for Congress and the President. She said that the new law increases membership requirements from one to two members for individuals who are on the autism spectrum, for parents and legal guardians of individuals on the autism spectrum, and for representatives of leading research advocacy and service organizations that serve individuals on the autism spectrum. The law also requires the IACC Strategic Plan to continue to address research but also to address, “to the extent practicable,” services and supports for individuals with ASD and their families, as well as recommendations to ensure that federal ASD research and services activities are not unnecessarily duplicative. Dr. Daniels said that that the two major projects ahead of the committee are to develop the IACC Summary of Advances for 2014 and 2015 and to update the IACC Strategic Plan for 2014 and 2015.
Summary of Advances
Dr. Daniels began by indicating that one of the immediate tasks for the IACC is to produce two volumes of the IACC Summary of Advances in Autism Spectrum Disorder Research (2014 and 2015). She suggested that developing two separate volumes, one for each year, might be advisable, but she asked members how they would prefer to structure the summary, noting that the other option would be to combine the two years in one publication. Members voiced their preferences and discussed the advantages and disadvantages of each option, after which Dr. Daniels said that the overall discussion seemed to indicate that the committee would prefer to go forward with 2 separate volumes, 1 with 20 studies from 2014 and 1 with 20 studies from 2015. She said that she would send information to members about beginning the nomination and selection process.
Dr. Wexler asked if the questions for the summary are set in stone. Dr. Daniels said the questions that frame the summary follow the structure of the IACC Strategic Plan and suggested keeping that format for 2014 and 2015. Then, if any questions in the Strategic Plan change going forward, the new structure could be incorporated into the summary.
Dr. Wexler asked how to ensure inclusion of research on professional development models to help increase staff competence in using interventions with fidelity. Dr. Daniels said that workforce development is addressed in chapter 7 of the Strategic Plan and that this chapter, as well as parts of chapters 5 and 6, could include studies on other services-related workforce needs. In the current Summary of Advances, important workforce development publications could be placed in chapters 4, 5 or 7. Dr. Cuthbert mentioned that the Institute of Medicine completed an 18-month survey of behavioral therapies and psychotherapies1 focusing on how the evidence base is established for these therapies and how to ensure that they are being delivered with fidelity in clinical settings. Dr. Pelphrey suggested that when integrating this material into existing chapters, they could also highlight the synergies between providing services with high fidelity and conducting state-of-the-art neuroscience work in humans.
Ms. Crane asked if they could include in the upcoming reports some discussion to reflect the work in patient-centered and community-centered research design and work in the inclusion of self-advocates, parents, family members, and professionals in the process of developing research goals and interpreting findings. Ms. Haworth added that regarding the Strategic Plan update, it may be time to think about mental health interventions with autism because of the high comorbidity rate.
The Strategic Plan and Subcommittees
Dr. Daniels said that the other immediate task at hand for the committee is to develop an update of the IACC Strategic Plan that covers 2014 and 2015. She noted that the previous IACC analyzed progress on the objectives and found that many were fulfilled or were nearly fulfilled and that the timelines for most of the objectives have passed. This presents an opportunity to develop new objectives or revise existing ones. It also is an opportunity to include guidance on priorities for services and supports activities in the plan. The new law calls for the IACC to "develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including as practicable for services and supports."
Ms. Singer suggested creating one subcommittee to focus on updating the current research strategic plan, which would also include services and service delivery research, and a second subcommittee to focus on developing a separate new strategic plan for services and supports. Mr. Robison said that it is important to ensure that the Strategic Plan communicates to the public how the committee will translate research accomplishments into tangible benefits for the public. Dr. Pelphrey suggested that it would be important to articulate how each subcommittee can inform the other one, which would provide the opportunity to show the public the synergies between research and services.
Dr. Dawson said that if there are two components to the plan, at the beginning of the research component a section could be added on how the research has impacted policy and practice. For the services strategic plan, a preface could be written about the empirical research that provided the foundation for these practices. She said she supports Ms. Singer’s suggestion to develop two documents and the new emphasis on services and supports but added that the focus on research should continue because it impacts what research NIH decides to fund.
Dr. Koroshetz said that the development of two documents would each represent a full-time job, and he wondered if it would be possible to alternate the work on each component instead of attempting both in the same year. Dr. Daniels agreed that if the committee decides to create a second document for services and supports, it would be important to avoid trying to develop both documents simultaneously in order to ensure quality, but that the law requires an “annual update” of the strategic plan, meaning that if there are two documents, both would need to be updated annually. Dr. Daniels laid out some pros and cons of having two strategic plans instead of one. One advantage of having a separate services and supports document is that the services document would not have to follow the structure of the research strategic plan. One disadvantage is that extra care would be needed to ensure that the documents are harmonized so that they do not conflict with each other, while also not being duplicative. Another possible disadvantage would be that having two guiding documents could be confusing for Congress.
Upon further discussion, some members brought up possible benefits to having a single, expanded strategic plan that covers both research and services. Mr. Robison said that because one of the biggest problems is explaining to the public how science will be used to solve problems, he would favor a single Strategic Plan that could explain a piece of research not only in terms of what it means to scientists but also in terms of why it is important to the autism community. Ms. Crane suggested that it might be helpful to use a pipeline approach to show how research can lead to improved services and how services experience can help refine research goals.
Returning to the topic of subcommittees and working groups, Dr. Dawson said she was moving toward preferring the idea of keeping an integrated document, which would require the committee to think about the relationship between research and services delivery and how they inform each other. Dr. Taylor said that in developing a combined plan, different ways could be explored to show where each of the questions fits along the continuum from basic science to translation in the field. Ms. Crane commented that even within basic science there are services connections. Dr. Peña suggested that if the committee creates a combined plan, it would be important to think about service navigation needs.
Dr. Daniels said that at the next full IACC meeting in January, members will engage in a more in-depth discussion about what aspects of the Strategic Plan should be updated, whether objectives should be updated, and what format should be used to incorporate services activities. She asked members to look at the current Strategic Plan to note areas that could be enhanced and to consider how the plan could be structured to include service delivery and support issues. Also, by the next full IACC meeting the committee will have formed groups and will hold meetings through February and March to move forward on the Strategic Plan update.
Dr. Daniels said that the IACC website will soon have a new design and that tablet and mobile-friendly versions will be available, along with new content, including a section on disability reports. She noted that the IACC is working to keep current not only with autism-related reports across the federal government but also with disability-related reports, and she asked members to send any information on new reports to her to be posted.
Dr. Dawson asked if the Summary of Advances on the website could be made searchable by major advances in specific categories. Dr. Battey suggested making it easily searchable by keywords, and Dr. Cuthbert said that a searchable database of all grants funded across NIH is available at the NIH RePORTER website. Dr. Daniels said that the IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool includes data from many different agencies and is in the process of being updated. Dr. Ring asked about the status of the web portfolio analysis in terms of being searchable on the website. Dr. Daniels said that the 2011 and 2012 data are being updated, and as they go forward with the website update a refresh up through 2012 will be included. Work has started on 2013. Dr. Daniels concluded by providing information about OARC’s functions.
Oral Public Comment Session
Mr. Nicholas Gammicchia emphasized the importance of identifying and addressing the varying needs of all who have autism and of working toward a plan of action to ensure optimal quality of life for each individual. He said that because in many cases autistic behavior is medically based, he wonders why the IACC has not appointed a treating physician as a public member. After emphasizing that life is more than school, Mr. Gammicchia said that additional funding is needed to develop more programs and services for adults living with autism. He also asked that the Safety Subcommittee and the Services Subcommittee be reconvened.
Ms. Carolyn Gammicchia, speaking as the parent of a young man with autism, voiced concern about the lack of IACC meetings over the past year and about several IACC membership issues. She urged the committee to consider the use of medical marijuana for autism in the Summary of Advances, to reconstitute the Safety Subcommittee and the Services Subcommittee, and to develop a separate strategic plan for supports and services. She supports Lisa Ackerman’s Talk About Curing Autism written public comments and past comments by members of the National Autism Association. (PII redacted.)
Ms. Casandra Oldham, a parent with two children who are severely affected with autism—and whose behavior she found she could no longer manage—said that she wants to give a voice to these children and to the parents and others who struggle daily to care for them with no time off and virtually no resources. Ms. Oldham emphasized the lack of appropriate services for individuals with severe issues and long waiting lists for the services that are available and said that it is time to speed up the leisurely pace at which autism and the lack of autism services are being addressed.
Officer Laurie Reyes, an Autism Outreach Coordinator for the Montgomery County Department of Police since 2005, focused on the use of effective tools to keep those with autism safe as she shared the work of the Special Operations Division, Autism/Intellectual Disabilities Outreach program. She said that the police response to calls for missing at-risk individuals with autism by the Montgomery County Managed Search and Rescue team is immediate and that their “total approach” to wandering prevention and autism safety includes education, outreach, and empowerment with the overall goal of saving lives. (PII redacted.)
Deanna Mulvihill, R.N., Ph.D., shared the experience of her grandson with autism whose self-injurious behavior stopped after his first intravenous immunoglobulin treatment. She expressed her concern about the lack of services for those more severely affected by autism, particularly in the schools, and she remarked that programs to improve communication are needed across all institutions, including schools and emergency rooms. She urged the committee to listen to those who are living with autism and suggested redirecting some research funds into developing programs for those who are struggling with autism every day.
Lisa Wiederlight, M.P.P., Executive Director of SafeMinds and the mother of a 15-year-old son with autism with co-occurring medical issues, spoke of the challenges involved in addressing her son’s autism and outlined SafeMind’s mission. She said that much of the autism community feels disenfranchised, unsupported, and disappointed by the lack of a federal response to the surging autism crisis. She asked the IACC to convene an ongoing work group on wandering; a permanent work group on environmental factors; a permanent work group on co-occurring conditions; and a work group on caregiver support. She also asked the committee to engage the legislative affairs offices of DHHS and DOJ to pursue passage of S. 163, Avonte's Law Act of 2015.
Albert Enayati, M.S.M.E., board member of SafeMinds and the Autism Policy Reform Coalition and parent of a 25-year-old son with severe autism who regressed after vaccination, said that more resources must be dedicated to the environmental causation of autism, and particularly to the role of vaccines in autism etiology. He said that despite federal agencies having spent $1.6 billion on autism, environmental research has been underfunded and autism prevalence increases unabated. Mr. Enayati also questioned the quality of many of the studies that have been published and expressed concerns about some aspects of IACC membership.
Ms. JaLynn Prince, who has a son with autism, spoke on behalf of the Madison House Autism Foundation and said that Madison House is one of the few national organizations working solely on the issues of adults on the autism spectrum. She emphasized that funding for lifespan issues is urgently needed to address the lack of appropriate services for navigating services after high school. Ms. Prince said that she hopes the IACC will take an active role in ensuring that the adult population receives the attention it deserves.
Ms. Janet McCarty spoke on behalf of the American Speech-Language-Hearing Association (ASHA) and described the skills and services ASHA-certified speech-language pathologists (SLPs) provide as members of multidisciplinary teams treating individuals with ASD. She also said that the Autism CARES Act now requires a report to Congress concerning young adults with ASD and the challenges they face in transitioning from school-based services to adult services. In addition, she said that for transitioning adolescents and adults, social communication skills are particularly important and that the role of the SLP remains vital.
Written Public Comments
Mr. Robison summarized and reflected upon the 71 written comments—and the oral comments—submitted to the IACC. He said that the overarching theme was one of dissatisfaction at how few tangible quality-of-life improvements the committee has delivered to the public and that the main take-away is the need to shorten the timelines from research to translation and to direct more research into benefits that can be used now to relieve suffering. Mr. Robison observed that even those who commented on vaccines also focused on quality-of-life issues. He also remarked that the committee must recognize its duty to fairly represent everyone on the autism spectrum and that one of their greatest challenges is communicating to the public how they will use science to deliver quality-of-life improvements.
IACC Committee Member Discussion of Public Comments
Dr. Pelphrey said he was moved by many of the oral comments, and Dr. Ring said that the comments can help serve as the compass for the committee as it heads into this next body of work. Dr. Reichardt said that the public comments make it clear that there is an obligation to make the best use of any funds available and that the committee should be focusing a significant portion of its resources on efforts that will improve lives.
Ms. Singer said that for many years the autism community ignored high-functioning individuals but is now doing a better job of identifying those who can serve as self-advocates. Yet parents in their comments to the committee expressed tremendous frustration regarding those with autism who are more severely challenged. She said she hoped that this IACC gives priority to this group of highly challenged individuals who are not able to advocate for themselves. Mr. Robison agreed with Ms. Singer and said that it is important to avoid painting a false picture at either end of the spectrum and to be mindful of the most impacted population.
Ms. Crane commented on the false dichotomy between self-advocacy and "functioning talk" and said that it is not necessarily appropriate to equate self-advocacy with a focus on people who are higher functioning or who do not have significant medical concerns. Dr. Cuthbert said that acknowledging that groups are interrelated and overlap along the continuum is a good note upon which to end this part of the discussion.
Committee Member Updates
Dr. Bruce Cuthbert, Acting Director, NIMH, began by saying that the overall NIMH budget is about $1.4 billion, with $1 million of this for research, and that NIMH has the largest portfolio of autism research at NIH, totaling about $114 million. Last year, NIMH awarded 12 new grants totaling $15 million to develop effective real-world-ready approaches to various aspects of services for children, transition-age youth, and adults with ASD. An RFA came out on October 28, 2015 to solicit another round of services applications. He also informed members that the press release was issued today announcing the official signing of the agreement through which the NIH NeuroBioBank and the privately funded Autism BrainNet are collaborating to form a joint, nationwide biobanking effort for the collection, storage, and distribution of postmortem human brain tissue for the benefit of autism research. The NIH partners include NIMH, NINDS, and NICHD, and the three private foundations are the Autism Science Foundation, Autism Speaks, and the Simons Foundation.
Another important project just getting under way is Autism Biomarkers Consortium for Clinical Trials (ABC-CT). The ABC-CT will add to the knowledge that is provided for autism diagnosis and treatment through clinical assessments and parent questionnaires by developing more objective tools to measure social behavior and identify biomarkers that can be used as targets for technologies and treatments. NIMH, NINDS, and NICHD are investing $28 million in this collaborative effort, which is also being supported by the Foundation for the NIH (FNIH), the Simons Foundation Autism Research Initiative (SFARI), the FNIH Biomarkers Consortium, and others. In addition, RDoC, the Research Domain Criteria project, involves the development of a research framework that will help us move toward precision medicine for mental disorders by developing a new taxonomy for mental health research that cuts across traditional diagnostic categories. Some 20 RDoC grants related to autism have already been funded.
Dr. Geraldine Dawson, President, International Society for Autism Research, said that this was her third appointment to the committee, and she updated members about INSAR activities. She said that their next gathering, the International Meeting for Autism Research 2016, will be in Baltimore in May 2016. INSAR also is developing and updating its strategic plan with a new focus on translating science into policy and practice, and the organization is moving beyond its journal Autism Research and the annual meeting to a year-round focus. An example of this is the summer institute, held in collaboration with SFARI, which served as a mechanism for people around the world to access information about autism science.
Dr. Dawson said that as a professor at Duke University and as Director of the Duke Center for Autism and Brain Development, she can report that the center has a robust treatment program for infants through adults and serves about 2,600 unique individuals with autism annually. The center focuses on addressing medical comorbidities through strong medical subspecialties and training. Their research program is funded by NIH, industry, and foundations and includes the study of how behavioral and medical interventions impact the brain using EEG and MRI as outcome measures. Also, Duke just launched a program through which Duke MBA students are working with the software company SAP to enhance the Autism at Work program. SAP made a recent commitment to hire 1 percent of its workforce on the autism spectrum.
Dr. Judith Cooper, Deputy Director of NICHD, representing Dr. James F. Battey, said that Dr. Battey has served on the IACC since its inception and that the NICHD autism portfolio is focused on communication disorders. She said that she is the program person responsible for the language and communication portfolio and autism and that within the last five years, NICHD has focused on minimally verbal individuals with autism through workshops and other initiatives. NICHD is funding one of the ACE centers focused on minimally verbal children. NICHD, along other NIH Institutes, participates in the Autism Coordinating Committee (ACC), which meets each month to discuss activities within the Institutes and collaborative efforts and to address issues such as those that emerge from the IACC.
Dr. Kevin Pelphrey, Director, Center for Translational Developmental Neuroscience at Yale, and Harris Professor in the Yale Child Study Center in the Department of Psychology, has a daughter with autism and is the principal investigator of an ACE network focused on understanding the neurogenetics of girls with autism. Dr. Pelphrey said that their RDoC-funded grant is in its third year and focuses on aggressive behavior. He described their large training component T32 grants for training pre- and postdoctoral clinician scientists and said that they are currently refocusing their effort on a more developmental and translational neuroscience perspective. Another program, funded by the Hilibrand Foundation, involves training the next generation of scientists and clinicians to address issues related to adults with autism. Also, the Simons Foundation is funding work on childhood disintegrative disorder, a rare disorder that was identified in 32 out of 10,000 individuals who were seen at the Child Study Center over the years. Researchers obtained genetic information from them and scanned their brains to get the first image data in very low-functioning individuals with autism. The study showed that what we thought we knew about autism and the autistic brain from studies of high-functioning individuals does not pertain to those who experienced regression; the work will be published soon.
Dr. Larry Wexler directs the Research to Practice Division at the Department of Education, Office of Special Education Programs through which 110 centers are funded that support parents as they go through the process of addressing the needs of children with disabilities through the local school districts. He said that the Office also has been involved in funding the development of professional and graduate/undergraduate evidence-based student modules in ASD. The Afirm modules—or autism modules—are an outgrowth of the work of the Autism National Center on Professional Development. Dr. Wexler also wanted to acknowledge that today is the 40th anniversary of the signing of the Individuals with Disabilities Education Act.
Ms. Shannon Haworth, a new public member of the committee, is the Public Health Program Manager at the Association of University Centers on Disabilities (AUCD). She has a nine-year-old son with autism and comorbid mental health issues and also has a spouse with autism. She described AUCD’s work, including its Leadership, Education, and Neurodevelopmental Disabilities (LEND) programs and Developmental-Behavioral Pediatrics (DBP) programs funded by HRSA. She said that AUCD holds a meeting of Autism CARES grantees every year and has an Autism Special Interest Group that includes people with disabilities and works to help public health professionals increase their capacity to include people with disabilities in their public health program planning efforts. AUCD also wrote a recent commentary in Pediatrics on system-wide solutions to improve early intervention.2 She said the self-advocate in her office, when asked what she would want Ms. Haworth to say today, replied as follows: "I would like an effort to allocate a higher percentage of research for and about autistic adults, with the focus to be on services and improvement of quality of life and independence. More community-based participatory research that partners with autistic adults would be wonderful."
Ms. Laura Kavanagh, Deputy Associate Administrator for the Maternal and Child Health Bureau (MCHB) of HRSA, said that HRSA is funded through the Autism CARES Act to increase public awareness, promote research into the development and validation of reliable screening tools and interventions, promote early screening, increase the number of health professionals who can confirm or rule out the diagnosis of ASD, and increase the number of providers who offer evidence-based interventions. HRSA collaborates closely with CDC in these areas, from "Learn the Signs. Act Early." to the Act Early Ambassadors project.
HRSA funds autism intervention research; training of developmental-behavioral pediatrics fellows (through 10 developmental-behavioral pediatrics fellowship programs across the country); and the Leadership, Education, and Neurodevelopmental Disabilities (LEND) programs. HRSA’s intervention research portfolio supports 5 research networks and 12 autism intervention research projects. One of their two largest networks focuses on autism intervention research for behavioral health, and another focuses on physical health. LEND programs operate as part of a University Center for Excellence or other large entity to prepare trainees for leadership roles in their respective fields and to ensure high levels of interdisciplinary clinical competence in treating infants, children, and adolescents with disabilities and neurodevelopmental disabilities, including autism. HRSA also funds state programs in 13 states, including 4 planning grants and 9 implementation grants focused on improving state systems of care for those with ASD.
Ms. Amy Goodman, a new IACC member, discussed her consulting services and her work in ASD at The Arc www.thearc.org and as Director of the Autism NOW Center. In her work on employment in ASD at The Arc, part of the Autism NOW grant was used to write a handbook for employers on how to work with individuals with ASD. "Talent Scout: Employing Individuals with ASD" was written from the perspective of individuals on the spectrum to also help employers meet their 503 government hiring goals. A new program is called The Arc@Work, which has a separate website that provides information on all of their work in employment and other initiatives involving people with intellectual and developmental disabilities and autism. She said that she serves on the national self-advocate council of The Arc, which meets monthly.
Dr. Cindy Lawler, Acting Chief of the Cellular, Organs, and Systems Pathobiology Branch in the Division of Extramural Research and Training, NIEHS (representing NIEHS Director Dr. Linda Birnbaum), said that the Autism Research Program at NIEHS focuses on supporting studies that address the role of environmental risk and protective factors in autism and that it is estimated that their FY 2015 portfolio will be about $12 million. Dr. Lawler focused on two recent initiatives. The first is a three-year research program announcement with a special review on environmental contributors to ASD. The research will be well aligned with the objectives in the IACC Strategic Plan, and the overall goals are to identify environmental contributors to the risk and expression of autism and to understand the underlying biology. Ten awards were made in the first year, and the exposures under study are diverse, as are the approaches. The second initiative is the Children’s Health Exposure Analysis Resource. NIEHS is leading this effort through which researchers who are looking at different aspects of children's health (including autism) and who have biologic specimens can ask a laboratory network to do targeted exposure analyses of the bio-specimens or to use an untargeted hypothesis-free approach. This initiative was funded several weeks ago; the kick-off meeting will occur over the next three days.
Dr. James Ball, President and CEO of JB Autism Consulting, is volunteer Executive Chair of the Autism Society. Dr. Ball said that the Autism Society just celebrated its 50th year and has embarked on its five-year strategic plan that should be implemented in January and that will involve advancing individuals on the spectrum, especially adults, by providing the information and services needed to maximize quality of life from life stage to life stage. Dr. Ball remarked that the society just completed a detailed study on adult services needs and how a state and national public policy agenda could address them and will be publishing a paper on the study in January. Dr. Ball also said that the Autism Society provided strong leadership for the passage of the Autism CARES Act and the ABLE Act.
Mr. Brian Parnell, with the Utah Department of Human Services, and the father of three children on the spectrum, said that he serves as the Medicaid Autism Waiver Manager and explained that because CMS has determined that state Medicaid plans cover autism for children, those states that have Medicaid autism waivers have been encouraged to provide transition to children receiving treatment through a waiver program. Utah has just completed that transition, and it is estimated that the number of children who can now get treatment through the state Medicaid plan is about 4,000. Also, as of January 1, 2015, insurance providers doing business in Utah are required to cover at least some treatment for children with autism. Mr. Parnell said that Utah has a state strategic plan for autism that covers everything from education, to transition into adulthood, to the certification of treatment providers, and that the plan, now in its fifth year, is being updated.
Dr. Robert H. Ring, Chief Science Officer, Autism Speaks, said he was pleased with their collaboration with Autism BrainNet and the Simons Foundation to work closely with the NeuroBioBank. He also described their Autism Treatment Network, which has renewed funding from HRSA to serve as an Autism Intervention Research Network for Physical Health. He described Autism Speaks’ MSSNG project—a large collaboration with Google to build an open access genomics database online in the Google cloud and said that the effort is one of the largest complete genomic databases in the medical research space. On the collaborative front, the South Carolina Children’s Educational Surveillance Study (SUCCESS): Comparison of DSM-IV & DSM-5 Prevalence is due to read out by the end of this year, with results possibly available at the beginning of 2016. In addition, an RFA that is just starting to read out focused on the gut-brain axis and understanding the implications of GI disorders for treatment development. Autism Speaks offers both pre- and postdoctoral fellowships and just celebrated its 2015 Weatherstone class of predoctoral fellowships. Also, through its venture philanthropy arm, Delivering Scientific Innovation for Autism, or DELSIA, they have invested in Akili Interactive Labs, which is developing a therapeutic game for autism. Dr. Ring encouraged members to take advantage of the momentum of CARES and ABLE to engage in legislative activities such as those involving the 21st Century Cures Act and the Precision Medicine Initiative.
Dr. Louis Reichardt directs the Simons Foundation Autism Research Initiative, or SFARI, and spoke about its mission to support science and the next generation of scientists. He outlined the foundation’s four major priorities: to identify risk factors—genetic, environmental, or epidemiological; to use human and nonhuman organisms to understand how these risk factors alter brain function and behavior; to promote preclinical and clinical investigations; and to increase the size of the autism research community and the quality of knowledge on autism. Regarding autism risk, he said that the low hanging fruit has been genetics and risk factors, with the gold standing being de novo genetic mutations that appear multiple times. The foundation is seeking to identify risk genes through 50,000 families across the county with a family member with autism, with the hope that this will encourage pharmaceutical companies to enter this space more vigorously. On the biology side, SFARI is supporting human imaging and studies on animals to understand the circuits and functions disrupted in autism.
Dr. Elisabeth Kato, Medical Officer in the Center for Evidence and Practice Improvement at AHRQ, said that the primary involvement of the agency in autism has been through the production of five systematic evidence reviews on different aspects of diagnosis and treatment of autism in response to public requests. AHRQ is now in the process of updating one of those reviews, which involves looking at medical treatments and interventions targeting the sensory effects of autism. A group of patients, researchers, and policymakers has been convened to draft the most important questions in this area, and the draft questions are available on the AHRQ website.
Ms. Samantha Crane, Director of Public Policy at ASAN and a self-advocate, said that during the recent Autism CARES reauthorization cycle, ASAN spearheaded a request to ensure that at least one self-advocate on the IACC is someone who received home and community-based services through Medicaid. She also said that ASAN worked with a research collaborative called AASPIRE to develop a participatory research model identifying barriers to healthcare. ASAN is also concerned about comorbid conditions and is leading work on supported decision-making for adults in healthcare contexts. ASAN has been working to include communication supports across the complement of autism interventions and recently published a toolkit on behavioral health aimed at individuals and families receiving Medicaid as well as another toolkit aimed at Medicaid administrators, which is being updated for the private health insurance context. ASAN also developed a toolkit on home and community-based services settings focused on access to quality residential services, healthcare supports, and employment supports for adults. Ms. Crane said that ASAN is very concerned about the needs of families and caregivers and especially about the extremely high rates of abuse committed against autistic individuals from childhood through adulthood.
Dr. Nicole Williams is Program Manager for the DoD Autism Research Program at the Congressionally Directed Medical Research Programs, under the Department of the Army. This is her first year on the IACC, taking over from Dr. Kimbark. She described the DoD autism research program FY 2014 cycle, which offered two award mechanisms—a clinical award to make a major impact on the treatment or management of ASD and an Institutional Development Award (IDeA) mechanism for high-risk, high-reward innovative project awards. DoD funded three clinical trials and four projects under IDeA. Dr. Williams said that congressional funding was $6 million for 2015 and that both the clinical trial award mechanism and the IDeA mechanism will continue. For 2015 the panel focused on behavioral, cognitive, and other nonpharmacological therapies, pharmacological treatments, therapies to alleviate conditions co-occurring with ASD, environmental risk factors, factors that promote success in transitioning to independence, and the dissemination of effective behavioral interventions. Applications were due last month, scientific review will be next month, and the list of the awards that will be recommended for funding will be available in February.
Dr. Edlyn Peña, Assistant Professor at California Lutheran University and parent to a seven year-old son with autism who is minimally verbal, described her research. She said that she just presented a paper on the campus experiences of 150 college students with ASD in the University of California system. The students with ASD had more negative experiences than those without ASD, and a statistically significant difference was found in terms of students with ASD coming from families who were not first generation in terms of attending college. Dr. Peña is also writing the findings of a larger study that involved qualitative interviews of 41 families who prepared their children with autism for college. The findings indicate that more work is needed to close the gaps that are preventing people with autism in marginalized communities from gaining college access. She said that she is planning a conference in California for 300 to 400 people on March 19, 2016, on the subject of communications options for people with autism.
Mr. Aaron Bishop is Commissioner of the Administration on Disabilities (AoD), part of the Administration for Community Living (ACL) at DHHS. The largest program under the ACL is the Center for Integrated Programs’ No Wrong Door initiative, which began in 2003 with ACL and other agencies helping states to build accessible service delivery systems. The program has two grants that involve working with the autism community in Nevada and Wisconsin. The National Institute on Disability, Independent Living, Rehabilitation, and Research (NIDILRR) is currently funding eight research grants targeting individuals with autism, ranging from training programs for Latino children with autism to the utilization of services by families and individuals living with autism. The AoD’s Administration for Intellectual and Developmental Disabilities (AIDD) manages programs, advocates for policy development, and helps establish and strengthen state and community networks of service providers; some states and specific Centers for Independent Living (CILs) are focused on autism. AIDD also supports the Developmental Disabilities Assistance and Bill of Rights Act of 2000 programs and provides funding through its Projects of National Significance (PNS).
Mr. John Elder Robinson has been reappointed to the committee and is Neurodiversity Scholar in Residence at the College of William and Mary and Co-chair of the College of William and Mary campus Neurodiversity Initiative. He said that the goals of this initiative are to make the campus comfortable for students with autism and other neurological differences and to teach every student the value of neuro-diverse people. He remarked that in January he will talk about the college’s collaboration with Drexel to translate this initiative into the workplace. Mr. Robison said that he is an autistic adult and the parent of a young adult on the spectrum and has three grown step-children with neurological differences.
Dr. Alice Kau, Program Director for the Eunice Kennedy Shriver National Institute of Child Health and Human Development (representing Catherine Spong, M.D.) said that Dr. Spong is serving as Acting Director of NICHD and that the search for a permanent Director is open until January 4, 2016. She updated members on NICHD’s autism program and said that the Institute is an active participant in the NIH ACC and works with other Institutes in formulating initiatives, such as the NeuroBioBank, NDAR, the ABC-CT, and the ACE program and is working toward continuing the ACE program past FY 2017 and FY 2018. Dr. Kau also shared some observations from her attendance at the Asian Pacific Regional IMFAR meeting.
Dr. Julie Lounds Taylor, a new IACC member, is Assistant Professor of Pediatrics at Vanderbilt University and an investigator at the Vanderbilt Kennedy Center for Intellectual and Developmental Disabilities. She has been studying the transition of people with autism to adulthood (and their families) for the past 10 years and outlined some key study findings. Adolescents and Adults with Autism involved secondary analysis on data collected from a large sample of families that include adolescents and adults with autism.3 Participants were drawn from an ongoing observational longitudinal study of 405 individuals with ASD and their families (Seltzer et al. 2003).4 Transitioning to Adulthood with Autism,5 funded by NIMH, looks at how stress response profiles, behavioral profiles, and environmental resources change when youth with ASD leave high school and how these factors influence post-transition outcomes. Recent publications have focused on the first wave of data, and one of the most important findings has been that families did not know what services and supports would be available after high school. This finding led to the development of a 12-week patient advocacy program to teach parents how to navigate the adult service system.
Dr. Cynthia Moore, Director of the Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities (NCBDDD), CDC, updated members on the Autism and Developmental Disabilities or ADDM Network and said that in January 2015, CDC launched a new phase of funding for the ADDM Network and will invest more than $20 million over four years to shed light on issues such as gaps in the early identification of children with ASD and the impact of DSM-5 diagnostic criteria on ASD prevalence. CDC also published an analysis of nearly 20 years of trend data on the number and characteristics of children with ASD and other developmental disabilities who were living in the metropolitan Atlanta area.6
NCBDDD, along with others, published three studies in 2015 looking at the relationship between assisted reproductive technology and ASD among a group of children born in California between 1997 and 2007.7 Also, over the past year NCBDDD’s "Learn the Signs. Act Early." program has made great strides in incorporating developmental monitoring tools and resources into early childhood programs. In addition, CDC's recent report on ASD prevalence, based on the National Health Interview Survey, estimated the prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey.8 Dr. Moore said that next month, the Journal of Developmental and Behavioral Pediatrics will publish the findings of Early ADDM, a pilot project that tracked and reviewed records to examine the characteristics of preschool age children with ASD in five communities across the United States and compared them to school age children in the same communities.9 Also, Milestones in Action will be released soon and will illustrate the developmental milestones that are on all the Learn the Signs checklists. A Milestones app will be available to make developmental monitoring more accessible to parents and providers.
Ms. Alison Tepper Singer, co-founder and President of the Autism Science Foundation (ASF), said that this is her third full term on the IACC. She said that ASF provides early career support for autism scientists through direct funding of pre- and postdoctoral fellowships and has added a one-year medical school gap year research fellowship. ASF also offers a three-year early career award to bridge the transition between postdoctoral and assistant professor, and two years ago, ASF began offering summer research grants that provide undergraduates the chance to pair with an established research mentor to work 8 to 10 weeks in a lab. ASF’s research acceleration portfolio grants are offered twice yearly to fund unexpected, novel findings or a finding that needs additional funding quickly. The next opportunity will close in April 2016. Also, ASF’s Autism Sisters project was announced last month and explores whether being female confers protection from autism.
Stakeholder education efforts include the third autism TED talk produced by ASF, to be held April 14, 2016, in New York City. Dr. Alycia Halladay, ASF’s new Chief Science Officer, combs through the publications in the scientific journals and translates and shares them in a weekly podcast available on iTunes. ASF also offers travel awards and travel stipends for attending the International Meeting for Autism Research (IMFAR). Ms. Singer said that both her brother and her daughter are among those with autism who are extremely challenged and that these individuals need our attention.
Dr. Walter Koroshetz, Director of NINDS, said that this is his third term on the committee, and he provided an overview of the Institute’s funding and research programs, including its NeuroNEXT network. NINDS also runs a translational research program populated by experienced scientists from the pharmaceutical industry recruited to bring discoveries from the laboratory to the point where they can transition into clinical trials in humans. The Institute provides approximately $60 million to fund about 55 grants related to autism, and much of this research focuses on genetic disorders associated with ASD. For example, NINDS currently supports an ACE network focused on ASD and tuberous sclerosis complex (TSC), looking at how to predict which children with TSC will develop epilepsy. Because this has been successful through the use of EEG, the next question would be whether early treatment can prevent epilepsy in children with TSC. NINDS also funds about $160 million of epilepsy research, some of which is epilepsy in autism. Dr. Koroshetz said that the Institute is involved in the BRAIN Initiative and the Human Connectome Project.
Dr. Daniels said she hoped members identified some opportunities for coordination and collaboration and concluded by reviewing a few action items: The committee will begin its work on the Summary of Advances for 2014 and 2015 following this meeting, and members will be hearing from OARC about the first steps toward preparing these documents. Also, at the next full IACC meeting in January, the committee will decide on the model to be used for the Strategic Plan.
Dr. Cuthbert concluded the meeting by recognizing the incredible diversity of efforts presented in the updates and said that the research described, which ranges from genetic and biological research to research that looks at treatment and accommodation efforts in a variety of settings, will help the committee plan how to move forward. He said the next full IACC meeting is scheduled for Tuesday, January 12, 2016, in Building 31 on the NIH main campus.
The meeting was adjourned at 4:54 p.m.
These minutes of the Interagency Autism Coordinating Committee (IACC) were approved by the Committee on January 12, 2016.
I hereby certify that this meeting summary is accurate and complete.
Bruce Cuthbert, Ph.D.
Chair, Interagency Autism Coordinating Committee
1IOM (Institute of Medicine). 2015. Psychosocial interventions for mental and substance use disorders: A framework for establishing evidence-based standards. Washington, DC: The National Academies Press.
2Marks KP, Griffen AK, Herrera P, et al. Systemwide solutions to improve early intervention for developmental-behavioral concerns. Pediatrics. 2015 Dec;136(6):e1492-4. doi: 10.1542/peds.2015-1723. Epub 2015 Nov 9.
3Taylor JL, Henninger NA, Mailick, MR. Longitudinal patterns of employment and postsecondary education for adults with autism and average-range IQ. Autism. 2015 October;19(7):785-793. http://aut.sagepub.com/content/19/7/785
4Seltzer MM, Krauss MW, Shattuck PT, et al. The symptoms of autism spectrum disorders in adolescence and adulthood. J Autism Dev Disord. 2003 December;33(6):565-581.
5Taylor, JL, Mailick, MR. A longitudinal examination of 10-year change in vocational and educational activities for adults with autism spectrum disorders. Dev Psychol. 2014 Mar;50(3):699-708. http://www.waisman.wisc.edu/family/pubs/Autism/2014LongitudinalExamination10-YearChangeVocational.pdf
6Van Naarden Braun K, Christensen D, Doernberg N, et al. Trends in the prevalence of autism spectrum disorder, cerebral palsy, hearing loss, intellectual disability, and vision impairment, Metropolitan Atlanta, 1991–20. PLoS One. 2015; 10(4):e0124120. Published online 2015 Apr 29. doi: 10.1371/journal.pone.0124120 [PMCID: PMC4414511]
7Fountain C, Zhang Y, Kissin DM, et al. Association between ART conception and autism in California 1997-2007. Am J Public Health. March 2015. [epub ahead of print]; and Kissin DM, Zhang Y, Boulet SL, et al. Association of assisted reproductive technology (ART) treatment and parental infertility diagnosis with autism in ART-conceived children. Hum Reprod. 2015 Feb;30(2):454-65.
8Zablotsky B, Black LI, Maenner MJ, et al. Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey. Natl Health Stat Report. 2015 Nov( 87):1-21. http://www.pubfacts.com/fulltext/26632847/Estimated-Prevalence-of-Autism-and-Other-Developmental-Disabilities-Following-Questionnaire-Changes-in-the-2014-National-Health-Interview-Survey
9Christensen D, Bilder D, Zahorodny W, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among 4-Year-Old Children in the Autism and Developmental Disabilities Monitoring Network. J Dev Behav Pediatr. 2015 Dec 9. Epub ahead of print. [PMID: 26651088]
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- 2015 Autism and Disability Reports (PDF – 138 KB)
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- IACC Full Committee Meeting Slide Set (PDF 4 MB)
|IACC Committee Business (PDF – 865 KB)||Susan Daniels, Ph.D., Director, Office of Autism Research Coordination, National Institute of Mental Health (NIMH) and Executive Secretary, IACC|
|NIMH Update (PDF – 992 KB)||Bruce Cuthbert, Ph.D., Acting Director, National Institute of Mental Health Chair, Interagency Autism Coordinating Committee|
|IACC Meeting Round Robin (PDF – 156 KB)||Shannon M. Haworth, M.A., M.A., Public Health Program Manager, Association of University Centers on Disabilities (AUCD)|
|HRSA Autism Investments (PDF – 352 KB)||Laura Kavanagh, M.P.P/, Deputy Associate Administrator, Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration|
|Research Update (PDF – 230 KB)||Julie Lounds Taylor, Ph.D., Department of Pediatrics, Division of General Pediatrics Vanderbilt, Kennedy Center, Vanderbilt University|
|Autism Science Foundation Programs (PDF – 549 KB)||Alison Tepper Singer, M.B.A., President, Autism Science Foundation|
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- Meeting Transcript (PDF – 2 MB)
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