IACC Full Committee Meeting - October 23, 2009

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Topic	Topic Description
Date:	Friday, October 23, 2009
Time:	9:00 a.m. to 5:00 p.m. Eastern
Agenda:	Includes a presentation by a panel of parents of children with autism, a presentation on Applied Behavioral Analysis by Dr. Tony Charman, and discussion of recommendations for updating the IACC Strategic Plan for Autism Spectrum Disorders Research.
Place:	The National Institutes of Health, Main Campus The William H. Natcher Conference Center 45 Center Drive Conference Rooms E1/E2 Bethesda, Maryland 20892
Webcast Live:	http://videocast.nih.gov/
Conference Call:	USA/Canada Phone Number: 888-455-2920 International Phone Number: 212-287-1838 Access code: 3132846
Registration:	http://www.acclaroresearch.com/oarc/10-23-09_IACC
Access:	Metro accessible - Medical Center Metro Station
Contact Person:	Ms. Lina Perez Office of Autism Research Coordination National Institute of Mental Health, NIH 6001 Executive Boulevard, NSC, Room 8185A Rockville, Maryland 20892-9669 Phone: 301-443-6040 E-mail: IACCPublicInquiries@mail.nih.gov
Please Note:	Any member of the public interested in presenting oral comments to the Committee(s) must notify the Contact Person listed on this notice at least 10 days in advance of the meeting. Interested individuals and representatives of organizations must submit a letter of intent, a brief description of the organization represented, and a written/electronic copy of the oral presentation/statement at least 24 hours in advance of the meeting. A printed/ electronic copy of the comment/statement provided by the deadline is required prior to the oral presentation; the document will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in order of the date and time when their request to speak is received, along with the required written statement submitted at least 24 hours in advance of the meeting. In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the statement to the Contact Person listed on this notice at least 24 hours in advance of the meeting. The statement should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. All written statements received by the deadline for both oral and written public comment will be provided to the IACC for their consideration. The meeting will be open to the public through a conference call phone number and webcast live on the Internet. 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 at least 7 days prior to the meeting. NIH has instituted stringent security procedures for entrance onto the NIH campus. All visitors must enter through the NIH Gateway Center. This center combines visitor parking, non-commercial vehicle inspection and visitor ID processing, all in one location. The NIH will process all visitors in vehicles or as pedestrians. You will be asked to submit to a vehicle or personal inspection and will be asked to state the purpose of your visit. Visitors over 15 years of age must provide a form of government-issued ID such as a driver's license or passport. All visitors should be prepared to have their personal belongings inspected and to go through metal detection inspection. When driving to NIH, plan some extra time to get through the security checkpoints. Be aware that visitor parking lots on the NIH campus can fill up quickly. The NIH campus is also accessible via the metro Red Line, Medical Center Station. The Natcher Conference Center is a 5-minute walk from the Medical Center Metro Station. For additional visitor information, visit the the NIH Visitor's webpage. 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. 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. Meeting schedule subject to change. To access the webcast live on the Internet the following computer capabilities are required: A) Internet Explorer 5.0 or later, Netscape Navigator 6.0 or later or Mozilla Firefox 1.0 or later; B) Windows® 2000, XP Home, XP Pro, 2003 Server or Vista; C) Stable 56k, cable modem, ISDN, DSL or better Internet connection; D) Minimum of Pentium 400 with 256 MB of RAM (Recommended); E) Java Virtual Machine enabled (Recommended).

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This meeting will also be available to the public by live videocast.

Time	Event
8:30 a.m.	Registration
9:00 a.m.	Call to Order and Opening Remarks Thomas Insel, M.D. Director, National Institute of Mental Health Chair, IACC
9:10 a.m.	Families Living with Autism – Panel Presentation Peter Bell - Moderator Autism Speaks Nora Fitzpatrick – Daughter, Rory Stephens, age 4 Judy Chinitz – Son, Alex Gorman, age 15 Elizabeth Emken – Son, Alex Swartz, age 17 Jason Ross, age 17 Adam Berman, age 23 Sondra Cunningham – Son, Troy Cunningham, age 38
10:10 a.m.	Applied-Behavioral Analysis-Based Treatment Presentation Tony Charman, Ph.D. University of London
11:00 a.m.	Break
11:10 a.m.	NDAR Update Michael Huerta, Ph.D. National Institute of Mental Health
11:25 a.m.	Approval of July 15, 2009 IACC Full Committee Meeting Minutes
11:30 a.m.	Update: Services Subcommittee Ellen Blackwell, M.S.W. Centers for Medicare & Medicaid Services Lee Grossman President and CEO, Autism Society
11:45 a.m.	Open Session for Public Comment
12:00 p.m.	Lunch
1:10 p.m.	Update: American Recovery and Reinvestment Act Thomas Insel, M.D. Director, National Institute of Mental Health (NIMH) Chair, IACC Chris DeGraw, M.D., M.P.H. Senior Medical Advisor, Maternal and Child Health Bureau, HRSA
1:20 p.m.	Update: Subcommittee on Planning the Annual Strategic Plan Updating Process Thomas Insel, M.D. Director, National Institute of Mental Health and Chair, IACC
1:40 p.m.	Discussion of Recommendations for Updating the Strategic Plan
3:30 p.m.	Break
3:45 p.m.	Discussion of Recommendations for Updating the Strategic Plan - Continued
5:00 p.m.	Closing Comments and Adjournment

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• Call to Order and Opening Remarks
• Families Living with Autism – Panel Presentation
• Applied Behavioral Analysis-Based Treatment Presentation
• Public Comment
  • Ms. Paula Durbin-Westby
  • Ms. Theresa Wrangham
  • Ms. Sharrill Hamry
• National Database for Autism Research (NDAR) presentation
• Update from Services Subcommittee
• Update: American Recovery and Reinvestment Act (ARRA)
• Discussion of Recommendations for Updating the Strategic Plan for ASD Research
• Closing Comments and Adjournment

The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened on October 23, 2009, from 9:00 a.m. to 5:00 p.m., in the William H. Natcher Conference Center at the National Institutes of Health in Bethesda, MD.

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

Committee Members Present at the Meeting: Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Della Hann, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; James F. Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Henry Claypool, HHS Office on Disability; Rosaly Correa-de-Araujo, M.D., Ph.D., (representing Henry Claypool), HHS Office on Disability; Lee Grossman, Autism Society; Larke Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Jennifer Johnson, Ed.D., Administration for Children and Families (ACF); Cindy Lawler, Ph.D., (representing Linda Birnbaum, Ph.D.), National Institute of Environmental Health Sciences (NIEHS); Christine M. McKee, J.D.; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Cathy Rice (representing Edwin Trevathan, M.D., M.P.H.), Centers for Disease Control and Prevention (CDC); Stephen Shore, Ed.D., Autism Spectrum Consulting; Alison Tepper-Singer, M.B.A., Autism Science Foundation; Chris DeGraw, M.D., M.P.H. (representing Peter van Dyck, M.D., M.P.H.), Health Resources and Services Administration (HRSA).

Ad hoc Committee Members Present at the Meeting: Deborah Hirtz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Petra Kaufmann, M.D., NINDS; Susan Shurin, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).

Call to Order and Opening Remarks

Dr. Insel opened the meeting by reflecting on Dr. Landis' recent resignation and urging the committee to renew their commitment to one of their core values – to listen to diverse views with an open mind. Dr. Insel noted that members of the committee disagreed stridently over several issues, but that the committee must remain an open forum for respectful dialogue and must use fair and open procedures. He cautioned that without trust, the committee will make no progress.

He spoke about the committee's shared belief in the importance of science, although he acknowledged that there may be disagreement over which science will bring the answers. Because the IACC is not a funding committee, they must lead with the power of ideas to advance the field. He noted that many members of the committee were not in attendance and asked that they make it a priority to attend future meetings. He closed by asking the committee to remember that, ultimately, they were working to serve people with ASD and their families.

Families Living with Autism – Panel Presentation

Moderator - Peter Bell
Autism Speaks

Mr. Peter Bell, from Autism Speaks, introduced the families that would be speaking to the committee about their personal experiences with autism. These individuals represent a sample of the diversity across the spectrum that is so often talked about when discussing the "heterogeneity" of ASD. There are many misconceptions about people with autism. Because many people's first exposure to autism was through the movie "Rainman," they believe that all people with ASD have savant-like skills. Many people also assume that autism only affects children, although it continues to affect people throughout their lifespan. Members of the self-advocacy group are able to attend meetings and speak on their own behalf, but a significant number of others with ASD lack these abilities. Mr. Bell said that the people on the panel that day represented a broader range of the spectrum, although he cautioned that it still did not cover the full diversity of ASD.

First to present was the mother of Rory Stephens, a four-year-old girl from Bethesda, Maryland, with a diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Her mother reported that Rory seemed to develop normally until her first birthday when she began to lose skills she had acquired. Rory's mother, Ms. Nora Fitzpatrick, talked about their experiences with Applied Behavioral Analysis (ABA) based therapy and stated that the research community needed to better communicate with parents about which therapies are effective. Rory currently receives 30 hours a week of intensive behavioral therapy and is making significant strides.

Ms. Judy Chinitz, mother of a 15-year-old on the spectrum, spoke about her son's experience. Alex was a fragile baby who was sickened by a virus of unknown origin at a young age and was diagnosed with autism at two years old. His health vastly deteriorated after a flu vaccine and he was diagnosed with immune dysregulation. His gastrointestinal issues were severe and were treated, with limited success, using Intravenous Gamma Globulin (IVGG) and steroids. At age nine, doctors recommended a feeding tube, but Ms. Chinitz instead tried the Specific Carbohydrate Diet and saw Alex's health improve within six months.

Ms. Elizabeth Emken spoke about her son Alex Swartz, 17, who was diagnosed with autism at age four. Until recently, Ms. Emken had worked with Autism Speaks, but had resigned to pursue a Congressional seat in California. Alex's language comprehension skills and conversational skills are very low, but he has the unique ability to match someone's birth year with the Disney film that was released. He correctly told Dr. Insel that his film with Alice in Wonderland (1951). Ms. Emken told the committee that she believes autism should be cured because it robs individuals of their ability to pursue their own happiness. For many, autism means the difference between independence and life-long dependence, she said.

Mr. Jason Ross, 17, represents someone who has "recovered" from autism. He stated that about 10 to 20 percent of people on the spectrum can "recover" or lose their diagnosis. He was diagnosed with infantile autism at age 3 and read from the pediatrician's report that described him as meeting the criteria for PDD. Mr. Ross had no other medical issues and with intensive ABA-based therapy, lost his diagnosis at age 11. He credits his own doggedness for some of his recovery and said that he wanted to bring hope that recovery was possible for some. Currently, he is a member of the National Honor Society, an AP scholar, and plans to attend college next year.

Mr. Adam Berman, 23, is an adult living with PDD. He currently attends graduate school at George Washington University focused on special education and works as a para-professional teaching middle school students with ASD. Mr. Berman spoke about the importance of early intervention and Applied Behavioral Analysis (ABA) based therapy. He recounted his challenges transitioning to college because he lacked appropriate social supports and urged more transitional services to support people with ASD as the move between life stages.

Ms. Sondra Cunningham, spoke about her son Tyrone's experience. Tyrone, 38, was diagnosed at the age of two in 1971. During that time, autism affected about 1 in 10,000 and was thought to be a result of poor parenting. Tyrone spent days in an incubator after birth but appeared to be developing normally until his parents noticed significant language delays. Ms. Cunningham recalled seeing a commercial about autism and subsequently went to a doctor where Tyrone was diagnosed with ASD. Ms. Cunningham described Tyrone's schooling and later, his adult day program. Troy is currently employed at the Value Village thrift store in Landover, MD, and previously worked at Giant grocery restocking merchandise. Tyrone currently lives at home, but his parents are trying to arrange a group living situation with two other men with ASD. Ms. Cunningham said that more group homes are needed in the District and emphasized the importance of planning for care over the lifespan.

Dr. Stephen Shore commended the presentations, saying that they showed how things are and how they can be. Ms. Ellen Blackwell used the phrase her adult son with ASD often says: "Autistic, fantastic!"

Dr. Insel thanked the panel for showing the diversity of needs across the spectrum, as well as the diversity of gifts. He applauded the incredible support from the families and said that they were a source of inspiration and hope.

Mr. Grossman asked the panelists what message they would like the IACC to take away and Ms. Chinitz said that she wanted to make sure that the committee understood that there is a contingent of children that is incredibly sick. Some of these children can be helped through modifications to their diet. Mr. Berman told the committee that it was important to provide supports and strive for the least restrictive environment for people with ASD.

Applied Behavioral Analysis-Based Treatment Presentation

Tony Charman, Ph.D.
University of London

Dr. Tony Charman spoke about Applied Behavioral Analysis (ABA) based therapy. He noted that more case-controlled or randomized controlled trials (RCTs) were needed to establish an evidence base and that ABA-based therapy was not specifically designed for children with ASD. Only two randomized controlled trials of ABA-based therapy have been conducted and randomization is the best control against bias. Recent reviews of ABA-based therapies, including studies of Early Intensive Behavioral Intervention (EIBI), one form of ABA-based therapy, have offered mixed results with the general theme that it is good for some but not all people with ASD. Differences in inclusion/exclusion criteria, together with different metrics of effect and breadths of study, make meta-analysis difficult. The threshold for evidence set in meta-analyses will affect the number of studies that are included, he explained (higher threshold will result in fewer studies being included). Other important factors that vary between studies are comparison group treatment, fidelity monitoring, outcome measures, and analysis type. Dr. Charman reviewed the most common outcome measures (IQ, adaptive behavior, language and communication abilities, etc.) and discussed the importance of determining which outcome measures are used and how they are reported.

Dr. Charman said that one could conclude that most, but not all, studies of ABA-based therapy produce positive outcomes at a group level for children with ASD, but that progress varies at the individual level. Claims that ABA-based therapy should be recommended for all children with ASD oversteps the evidence, he said. Many unanswered questions remain, including which children get the most effect from ABA-based therapy and how ABA-based therapy fares against other approaches. Moderating and mediating mechanisms also need to be studied. Dr. Charman said that it is possible to run RCTs and to test effective elements by adding them to an ongoing program.

He reviewed the results of several parent training RCTs and summarized a study of the Picture Exchange Communication System (PECS) training for teachers. The researchers found that following PECS interventions, nonverbal children were more likely to initiate social interaction, but that the intervention did not lead to better speech. He concluded that to test the efficacy of early interventions, more large scale RCTs are needed, in addition to a fair-minded approach to evaluating the evidence, and improved access to appropriately-trained professionals and services.

Ms. Alison Singer asked how to control for the effects of individual therapist quality and Dr. Charman said that rating fidelity serves to disentangle any therapist effects. Dr. Insel asked how to assess real-world fidelity to interventions. Dr. Charman said that this was a serious issue and during their study of PECS, they found that treatment effects fell off when they were not monitoring implementation and fidelity. Dr. Insel asked if there was ABA-based therapy accreditation in the United Kingdom and Dr. Charman said that ABA-based therapy practitioners call themselves "board-certified" therapists, but that the demand for these professionals outstrips the supply.

Dr. Hirtz asked what alternatives to RCTs could be given when considering their time-intensive nature and the urgency to get information now. Mr. Grossman asked whether early intervention with ABA-based therapy would show benefits for the person across the lifespan. Dr. Charman said that the effects of ABA-based therapy cannot be directly measured across the lifespan, but that the short-term benefits suggest long-term benefits.

Public Comment

Before public comment began, Dr. Insel noted that he had received the National Autism Center's National Standards Project, a four-year study evaluating the evidence-base for education and behavioral interventions for children with ASD. He acknowledged that Dr. Susan Wilczynski, who led the study, was in the audience and noted that the study was now available on-line at: http://www.nationalautismcenter.org/about/national.php.

Ms. Paula Durbin-Westby from the Autistic Self-Advocacy Network (ASAN) addressed the IACC and said that she appreciated the opportunity to serve as a panelist at the recent Scientific Workshop. She urged the committee to include a specific objective in the strategic plan addressing the ethical, legal, and social implications associated with all areas of research. She discussed the ethical issues of collecting biological material from children who cannot consent and who may not want to contribute to research leading to prenatal screens. She asked for more funding for services and supports in the plan and asked the committee to make specific mention of communications research.

Ms. Theresa Wrangham, President of SafeMinds, brought a picture of her 19-year-old daughter diagnosed with ASD and asked the committee to investigate the biomedical interventions that had proven so successful for her daughter. She urged the committee to address the gaps in vaccine research and to conduct a retrospective vaccinated/unvaccinated study.

Ms. Sharrill Hamry discussed the recent finding published in Science that suggests that a retrovirus, xenotropic murine leukemia virus-related virus (XMRV) may be at the root of chronic fatigue syndrome. This retrovirus has also been found in people with ASD. She urged the committee to study XMRV's relationship to autism and to add a member from the National Institute of Allergy and Infectious Diseases (NIAID) to the committee.

Dr. Insel clarified that only the Health Secretary could appoint new members and that intramural researchers at NIH were already investigating the relationship between XMRV and ASD.

National Database for Autism Research (NDAR) presentation

Michael Huerta, Ph.D.
National Institute of Mental Health

Dr. Michael Huerta presented an update on NDAR activities over the last three months. He spoke about the need for data submission, the need to provide user-friendly support for submitters, and the need to link to other significant ASD databases. Principal investigators from the ACE networks are required to share their data through NDAR with the first data becoming available in May 2010. NDAR will be linked with other databases including the NIH pediatric MRI repository, the Interactive Autism Network (IAN) database, and the Autism Genetic Research Exchange (AGRE) database. Dr. Huerta presented a graph representing the projected number of research participants in NDAR. By 2010, there are expected to be more than 12,000 participants. He reminded the committee that data influx will not be instantaneous, requiring several years to populate the database, but that they are actively building a robust database.

The IACC discussed how grant supplements had been offered to encourage outside researchers to contribute data, but that no one had used the resource. The committee was told that a press release had been prepared to increase awareness in the clinical community. Dr. Jim Battey asked what safeguards had been put in place to ensure that insurance companies would not use data to the individual's detriment and was told that Globally Unique Identifiers (GUIDs) were unique, anonymous identifiers and that NDAR data was only accessibly to researchers at NIH-recognized institutions.

Ms. Redwood asked if medical records would be included in NDAR and Dr. Huerta said that the database was not meant to be a medical records repository but that linking it to the IAN database would allow access to these records. Dr. Larke Huang stated that NDAR included genotypic, phenotypic, and imaging data.

Update from Services Subcommittee

Ellen Blackwell, M.S.W.
Centers for Medicare & Medicaid Services

Ms. Ellen Blackwell reminded the committee that there had been a services town hall meeting held in July in conjunction with the Autism Society's annual meeting in St. Charles, IL. About 200 people attended and were able to interact with the panelists while giving feedback on the Strategic Plan for ASD Research. Many comments related to the need for ASD subtype research and the need for more service providers, particularly those trained in ABA-based therapy. Other comments related to a need for improved coordination of services, a lack of services for people with Asperger's and high-functioning autism, and a need to make families aware of available services. Ms. Blackwell said that the town hall format was very successful and suggested doing it again, preferably in the DC-metro area.

At a recent subcommittee meeting, Dr. Gail Houle spoke about part D of the Individuals with Disabilities Education Improvement Act (IDEA) and Dr. Samuel Odom spoke about supporting the use of evidence-based practices for learners with ASD. People who wish to receive the slide set from Dr. Odom's presentation should write to the Office of Autism Research Coordination (OARC) at IACCPublicInquiries@mail.nih.gov.

Dr. Huang asked about the specific mention of seclusion and restraint in the summary of the public comments and Ms. Blackwell explained that it had been in reference to the recent report on the use of restraint and seclusion in schools.

The committee then reviewed the minutes from the July 15, 2009 Full IACC meeting. Ms. Redwood requested that "phthalic acid" be corrected to "folinic acid" in the document and with that correction, the minutes were approved.

Update: American Recovery and Reinvestment Act (ARRA)

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

Dr. Insel reviewed the ARRA funding which was used to supplement autism research already underway or to launch new research. The ARRA funding included Challenge grants and a $60 million RFA on the heterogeneity of ASD which included funding to address objectives put forth by the strategic plan and Grand Opportunities or "GO grants" used to fund genomic profiling efforts and neurodevelopmental genomics. Dr. Insel presented a graph of the breakdown of ARRA funds by strategic plan question and talked about President Obama's recent address to NIH, in which he specifically cited autism as one of the Administration's top biomedical research priorities and announced increased funding for the disorder by 16 percent (compared to NIH's overall growth of 1.5 percent). A Request for Applications (RFA) to study the heterogeneity of autism had been released and Dr. Shore and Ms. Christine McKee had participated as public members in the special application review process. The committee was provided with a list of the ARRA grants and Dr. Insel reviewed the amount of funding each strategic plan question received. ARRA grant information is available to the public through the Research Portfolio Reporting Tool (RePORT).

Dr. Insel said that applications that had not been funded had the opportunity to apply again in the future and Dr. Battey commented that, having been reviewed once, the applicants had the advantage of integrating first-round feedback.

Dr. Insel said that grants supporting infrastructure scored best and Ms. McKee said that she was impressed with the degree of stakeholder involvement during the review process.

Discussion of Recommendations for Updating the Strategic Plan for ASD Research

Dr. Insel reminded that committee that the strategic plan must be updated yearly and that a recent workshop had been held to help identify the gaps, opportunities, and potential edits. The panels had submitted suggested line edits and the committee would have to decide how to proceed. He commented that the 2009 plan had the benefit of the ARRA funds becoming available but that a similar opportunity would probably not occur in the near future. He asked the committee to ensure that any changes made to plan are necessary ones and asked for feedback on the workshop. Dr. Jennifer Johnson felt that she lacked context while serving as a liaison because she had not been part of the Planning subcommittee. Ms. Blackwell recommended having separate panels address Questions 5 and 6 and Ms. McKee echoed the sentiment, saying that the issues were distinct from one another. Dr. Rice said that the diversity of backgrounds of the panelists was helpful and that in the future, the panels should be expected to produce the line edits as a final product.

Dr. Insel said that Panel 4 had done the line edits as a group. He stated that panelists could still have input on the suggested line edits, but that the ultimate recommendations rested with the IACC. Dr. Cindy Lawler stated that the line edits from Panel 3 seemed disconnected from their Workshop presentation and did not accurately reflect the panel's recommendations. Ms. Blackwell agreed and Ms. Alison Singer said that the proposed edits bore almost no resemblance to the panel's conversation. The IACC agreed to table the discussion of Question/Chapter 3 until their liaison, Mr. Lee Grossman, could be present to discuss his thoughts regarding the proposed line edits.

Question 1: When Should I Be Concerned?

Dr. Jennifer Johnson gave an overview of Panel 1's recommendations for chapter updates and noted that the panelists had not reviewed the line edits. She said it would be helpful to have their review. Dr. Susan Shurin discussed her confusion with the title chapter "When should I be concerned?" stating that it implied a chronologic time, but that the body of the chapter seemed to address the question of "At which step or based on which signs should I be concerned?" The IACC discussed potential edits to the bullets under the main question to clarify this confusion. Ms. McKee stated that the committee needed to come to consensus on how to treat the lifespan in order to create a cohesive plan. Ms. Singer stated her concern that if Chapter 6 was changed to "What does the future hold for adults with ASD" that children might then be underemphasized and suggested adding more emphasis on children in Question 1. Dr. Janvier stated the strategic plan does not meet the needs of families in that it does not adequately answer the question about when a family should be concerned, and that she would hesitate to refer families to it. Dr. Insel asked what science needs to done in order to meet their needs. Ultimately, this will define the key objectives, he said.

Ms. Redwood said that she approved of the change to the aspirational goal to call for diagnosis in the preclinical stage rather than before 24 months. Dr. Janvier said that preclinical diagnosis may be unrealistic because this requires identifying biological signatures or genetic markers for a neonatal test. Dr. Johnson said that the goal was aspirational and Ms. Blackwell recommended sending the proposed line edits back to the panelists for their review. Dr. Johnson explained that the current long-term objective on heterogeneity had been captured in the proposed rewrites to the body of the plan, thus had been removed.

A committee member stated that Dr. Deborah Fein, a member of Panel 1, had recommended changing "cases" to "signs" on page 1, line 18. The committee discussed the proposed edits to the objective on identifying biomarkers for diagnosis, noting that it now called for biomarkers of co-occurring disorders, instead. Dr. Shurin said that preclinical diagnosis may not be attainable and the term itself may not be understood. Dr. Insel recommended changing the goal to diagnose children at the "earliest stage." Dr. Janvier said that she was not in favor of changing the goal from the original 24 month age because preclinical diagnosis was not realistic (the average age of diagnosis in the U.S. is around five years of age). She felt that the chapter had been flavored by the panelists' personal research focus on early diagnosis.

Dr. Johnson asked how aspirational the goal should be. Should it be attainable in the short-term or should it be an overarching long-term goal? Dr. Shurin said that to facilitate preclinical diagnosis, a biomarker would first need to be found and validated. Ms. Singer recommended identifying a biomarker in the short-term and validating the biomarker in the long-term. She discussed the need to clearly track the different types of biomarkers called for in the plan (e.g., biomarkers for diagnosis, biomarkers predicting intervention response, biomarkers predicting outcomes, etc.) Dr. Insel said that identifying biomarkers, while potentially useful, sometimes does not lead to the expected advances in medicine. For example, identifying prostate-specific antigen (PSA) did not change morbidity rates. He also noted that measuring incidence is not included in the plan to determine whether there is a real increase in the disorder.

Dr. Rice noted the need to implement screening policies based on risk profile. Right now the only risk factor used relates to whether a child has a sibling with ASD. She also discussed the difficulties with conducting studies of incidence and that prevalence was the more relevant concept for autism. To measure change in prevalence, well-defined cohorts are tracked over time, while attempting to control for the effects of community awareness. Dr. Janvier said that she can identify a child she may believe to be at risk, but that definitive tools for diagnosis cannot be used until the child reaches 24 months of age.

The committee discussed the best process for moving forward and agreed to go back to the Workshop panelists to review the proposed edits and provide additional feedback and then bring the information back to the committee. Ms. Singer expressed frustration with reviewing the plan at the current meeting, turning it back to the panelists, and then reviewing as a committee once again. Ms. Redwood said that the extra time would allow the committee to incorporate information about ARRA funding.

Dr. Huang asked about the timeframe for the aspirational goals, given that the plan is to be updated annually. Dr. Hann and Dr. Insel said that they imagined the goal to be accomplished within a ten-year timeframe. Ms. Redwood recommended combining the yearly scientific advances with the plan updating process. Dr. Shurin stated that she felt that the amount of work to completely overhaul the plan was not warranted and that updates should be minimal tweaks and reorganizations. Dr. Insel noted that they had felt an urgency to produce the first plan for the new Secretary, however generating many new objectives now did not hold the same urgency. Dr. Shurin said that the one area that should be considered a top priority is defining a comparative effectiveness research agenda for ASD interventions.

Dr. Insel recommended hearing an overview of the proposed changes from each liaison in lieu of reviewing line by line edits. He said that the committee may want to do less rather than more during this update to the plan. Ms. Singer said she was uncomfortable with that characterization and said that a lot of effort had already gone into this update. She said that autism is a pressing health crisis and the plan was envisioned as a living document to be updated on a continuing basis. Ms. Redwood said she considered the strategic plan to be the most important document from the IACC and that they need to devote the necessary amount of time. Dr. Insel said that another meeting would be scheduled for November 10, 2009, to continue work on the plan. There are substantial changes recommended for Chapter 5 and 6, and a proposed Chapter 7 addressing infrastructure needs.

Question 2: How Can I Understand What Is Happening?

Ms. Alison Singer reviewed the general edits recommended for Question 2 with the committee. She noted that the panel was concerned that two existing objectives had not had any funding, but ARRA money had addressed some of this need. The panel identified the need to focus on nonverbal individuals, to conduct research on the genotypes of specific phenotypes, to target underlying biology, and to focus on co-occurring conditions like familial autoimmune disorders. They recommended elevating the priority of research into induced pluripotent cells from skin fibroblasts. Ms. Redwood asked about the recommendation to study co-occurring disorders like Tuberous Sclerosis and Rett syndrome. Ms. Singer said that this research was intended to study similar and divergent pathways between ASD and these disorders. Dr. Johnson asked about the interconnection between chapters in the plan and the concerns about overlap and potentially losing items if the plan was not viewed in its entirety. Dr. Insel asked about the study of pathways of familial autoimmune disorders and questioned whether the panel was suggesting devoting ASD funds to research disorders like celiac and rheumatoid arthritis. Ms. Singer said that that was not the intention. Again, it was to study similar and divergent pathways between ASD and related disorders.

Dr. Lawler asked if there had been any discussion of using cellular and animal models and Dr. Insel said that the use of iPSC trumped animal models and it could be used in whole organisms.

Question 4: Which Treatments and Interventions Will Help?

Panel 4 presented their recommendations to conduct comparative effectiveness research to reflect the amount of ARRA funding it had received. The panel also wanted more research on interventions for nonverbal people, and wished to differentiate nonverbal from low-functioning. The panel recommended identifying biomarkers that would predict treatment response and focusing on personalized interventions. Dr. Shore said the panel had discussed the need to build an evidence base for treatments but wished to balance that with the current urgency in the community. Dr. Lawler asked about testing innovative treatments in small-scale pilot studies. Dr. Insel believed that this was included in the existing plan but could not find mention of it.

Dr. Rice discussed the need for a structure to translate intervention findings to the community. Dr. Insel said that this could be included in an infrastructure chapter. Ms. Blackwell asked that "person" be used rather than "patient" in chapter 4, page 4, line 6.

Question 5: Where Can I Turn for Services? & Question 6: What Does the Future Hold?

Ms. Blackwell recognized her panelists for Question 5 and 6 and discussed edits for Question 5. They had added language to address the lag between research and practice and the need for assistance when navigating the complex service system. They had also altered the aspirational goal to emphasize maximizing quality of life and health. Ms. McKee spoke about issues of adherence in a real-world setting and the committee discussed ways to develop the workforce of service providers. Dr. Insel suggested that the committee might want to put forth a concrete recommendation for the number of providers to be trained at a target date, much like what had been done for the treatment of post-traumatic stress disorder. The committee agreed that the "state of the state" objective had been fulfilled and could be deleted.

Ms. Blackwell talked about the objective relating to Promising Practices briefs and reminded the committee that the Centers for Medicare & Medicaid Services (CMS) develops briefs on promising practices in Home and Community-Based Services (HCBS) for people with disabilities (including ASD). The committee had heard Ms. Kathy Reddington speak about her program in Connecticut at the November 21, 2008 IACC meeting. This Promising Practices brief, in addition to others, is available on the CMS web site. Dr. Insel commented that these promising practices briefs were important but might not fit into a research plan. The committee discussed how to incorporate the briefs into a research goal.

The committee reviewed the proposed title change for Chapter 6, to specify what the future holds for adults and noted that much public comment had been devoted to the needs of adults and transitioning youth. The committee discussed the concern that children could be lost in the plan if the question was changed and children were not emphasized elsewhere. Ms. Blackwell said that significant public comment was devoted to the use of medications in adults with ASD so they had developed a related long-term objective. They also revised the aspirational goal to emphasize leading self-determined lives and having access to individualized services and supports. The objective on data collection was deleted, with the assumption that it would be moved to the infrastructure chapter.

Ms. Singer said that the rewrites were a big improvement but worried that that chapter focused too much on the needs of high-functioning adults. She recommended including items on research to support care-giving and other aspects applicable to profoundly-affected individuals. The committee discussed whether changing the focus of Chapter 6 omitted items related to other transitions throughout the lifespan, such as transitioning from kindergarten to elementary school. Ms. Singer volunteered to draft language for the infrastructure chapter.

Closing Comments and Adjournment

Dr. Hann summarized that the charge to the liaisons would be to review their line edit documents and seek input from their panelists. OARC would plan to follow up in preparation for the November 10th meeting. The meeting was then adjourned.

Certification

These minutes of the IACC Full Committee were approved by the Committee on November 10, 2009.

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

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

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• Oral Public Comments (PDF – 175 KB)
• Written Public Comments (PDF – 415 KB)

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• Meeting Transcript (PDF - 783 KB)

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Presentation	Presenter(s)
Presentation Families Living with Autism – Panel Presentation (PDF – 260 KB)	Presenter(s) Nora Fitzpatrick, Daughter, Rory Stephens; Judy Chinitz, Son, Alex Gorman; Elizabeth Emken, Son, Alex Swartz; Jason Ross; Adam Berman; Sondra Cunningham, Son, Troy Cunningham
Presentation Applied-Behavioral Analysis-Based Treatment Presentation (PDF – 550 KB)	Presenter(s) Tony Charman, Ph.D., University of London
Presentation NDAR: The last three months (PDF – 2 MB)	Presenter(s) Michael Huerta, Ph.D., National Database for Autism Research (NDAR), National Institute of Mental Health
Presentation Update: Services Subcommittee (PDF – 514 KB)	Presenter(s) Ellen Blackwell, M.S.W., Centers for Medicare & Medicaid Services; Lee Grossman, President and CEO, Autism Society

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