IACC Full Committee Conference Call and Webinar - December 18, 2012
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|Date:||Tuesday, December 18, 2012|
|Time:||10:00 a.m. to 4:15 p.m. Eastern|
|Agenda:||The IACC will review and approve the final 2012 update of the IACC Strategic Plan for Autism Spectrum Disorder Research.|
|Place:||No in-person meeting; conference call and webinar only|
|Conference Call:||Dial: (800) 369-1881
Access code: 9976437
|Webcast Live:||The oral public comments session will be webcast live starting at approximately 10:15 a.m. and ending after the public comment session is finished.|
|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
|Please Note:||Individuals and representatives of organizations interested in providing public comments must submit a written/electronic copy of the oral statement/comments including a brief description of the organization represented by 12:00 p.m. Eastern on Friday, December 14, 2012. 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 comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 12:00 p.m. Eastern, Friday, December 14, 2012. The comments should include the name and, when applicable, the business or professional affiliation of the interested person. All written comments 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.The webinar and conference call will be open to the public. 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 conference call, please-e mail IACCHelpDesk2012@gmail.com.
If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317. To access the web presentation tool on the Internet the following computer capabilities are required:
For PC-based participants:
Individuals who participate 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 2 days prior to the meeting.
As a part of security procedures, those attending or presenting at the oral comment session should be prepared to show a photo ID and to state the purpose of their visit at the front desk and at the meeting registration desk when checking-in. Seating will be limited to the room capacity and seats will be on a first come, first served basis.
The meeting will be open to the public and accessible via conference call. Individuals who participate by using this electronic service and who need special assistance such as captioning or other reasonable accommodations should submit a request to the Contact Person listed on this notice at least 2 days prior to the meeting.
Schedule subject to change.
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The oral public comments session will be webcast live starting at approximately 10:15 a.m. and ending after the public comment session is finished. The materials for the meeting can be found here.
|10:00 a.m.||Roll Call and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health
|10:15 a.m.||Oral Public Comments Session|
|10:45 a.m.||Public Comments Discussion Period|
|11:00 a.m.||Discussion and Vote - Question 1: Diagnosis|
|11:30 a.m.||Discussion and Vote - Question 2: Biology|
|1:00 p.m.||Discussion and Vote - Question 3: Risk Factors|
|1:30 p.m.||Discussion and Vote - Question 4: Treatments and Interventions|
|2:15 p.m.||Discussion and Vote - Question 5: Services|
|2:45 p.m.||Discussion and Vote - Question 6: Lifespan Issues|
|3:15 p.m.||Discussion and Vote - Question 7: Infrastructure and Surveillance|
|3:45 p.m.||Discussion and Vote - Introduction and Conclusion|
|4:00 p.m.||Wrap-up and Next Steps|
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- Roll Call and Opening Remarks
- Discussion of Autism and Recent Events in Newtown, Connecticut
- Oral Public Comment Session
- Public Comments Discussion Period
- Discussion and Vote - Question 1: Diagnosis
- Discussion and Vote - Question 2: Biology
- Discussion and Vote - Question 3: Risk Factors
- Discussion and Vote - Question 4: Treatments and Interventions
- Discussion and Vote - Question 5: Services
- Discussion and Vote - Question 6: Lifespan Issues
- Discussion and Vote - Question 7: Infrastructure and Surveillance
- Discussion and Vote - Introduction and Conclusion
- Further Discussion of Question 4: Treatments and Interventions
- Wrap-Up and Next Steps
The Interagency Autism Coordinating Committee (IACC, also referred to as "the Committee") convened a conference call and webinar on Tuesday, December 18, 2012, from 12:01 p.m. to 4:13 p.m.
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.
Thomas Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH), Susan Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Idil Abdull, Somali American Autism Foundation; James Ball, Ed.D., BCBA-D, JB Autism Consulting and Autism Society; Anshu Batra, M.D., Our Special Kids; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Linda Birnbaum, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Coleen Boyle, Ph.D., M.S. Hyg., Centers for Disease Control and Prevention (CDC); Noah Britton, M.A., Bunker Hill Community College; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Matthew Carey, Ph.D., Left Brain Right Brain; Jan Crandy, Nevada Commission on Autism Spectrum Disorders; Denise Dougherty, Ph.D., Agency for Healthcare Research and Quality (AHRQ); Tiffany Farchione, M.D., U.S. Food and Drug Administration (FDA); Alan Guttmacher, M.D., Eunice Kennedy ShriverNational Institute of Child Health and Human Development (NICHD); Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Donna Kimbark, Ph.D., U.S. Department of Defense (DoD); Walter Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS) (for Linda Birnbaum, Ph.D.) ; Sharon Lewis, Administration on Intellectual and Developmental Disabilities (AIDD), Administration for Community Living (ACL); David S. Mandell, Sc.D., University of Pennsylvania School of Medicine; John P. O'Brien, M.A., Centers for Medicare and Medicaid Services (CMS); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Cathy Rice, Ph.D., Centers for Disease Control and Prevention (CDC) (for Coleen Boyle, Ph.D., M.S. Hyg.); Scott Michael Robertson, M.H.C.I., The Autistic Self Advocacy Network (ASAN); John Robison, Self Advocate, Parent, and Author; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Larry Wexler, Ed.D., U.S. Department of Education
Roll Call and Opening Remarks
IACC Chair, Dr. Thomas Insel, opened the meeting, welcoming the members and listening audience. IACC Executive Secretary, Dr. Susan Daniels, conducted roll call. Dr. Insel said that the meeting would begin with oral public comments and a discussion of those comments (as well as the written comments provided) and then would move to a discussion of the Strategic Plan Update.
Discussion of Autism and Recent Events in Newtown, Connecticut
Dr. Insel commented on the Newtown, Connecticut, shootings, noting that the shock and grief had been especially acute among members of the autism community, in part because some—including many in the media—had been quick to link the perpetrator's possible Asperger syndrome diagnosis to the violence, when, in fact, people on the spectrum are more likely to be the victims of crime and not the perpetrators. He asked Committee members for any thoughts in this regard, particularly about what the Committee might do to try to convey a different message.
Ms. Idil Abdull said that because most of the focus has been on early intervention, it would be valuable to focus on counseling for children who are transitioning from high school, as well as their parents. Mr. Scott Robertson said it would be helpful to emphasize the fact that autistic youth and adults are heavily victimized compared to the general population and that research does not support the existence of a link between autism spectrum disorders (ASD) and violence. Mr. Robertson noted that many in the media misunderstand developmental disabilities. Ms. Sharon Lewis added that there are basic background materials, including a fact sheet1, related to individuals with mental disabilities and violence that could be used in outreach. These materials discuss reliable predictors of violence and address misconceptions that can cause discrimination and hamper the lives of people with mental disabilities.
Mr. John Robison noted that he wrote a piece about the incident in Psychology Today2 that has been widely disseminated and that Dr. Catherine Lord addressed some of the questions about studies of people with Asperger syndrome and violence in the New York Times yesterday.3 He said he agrees that the IACC should offer a public statement on the incident and do so quickly. Dr. Alan Guttmacher agreed that this should be done quickly, as did Mr. Robertson, who offered to assist with the writing. Dr. Insel commented that this would be a statement posted on the web and not a press release and that it would need to be up on the website by Friday of this week at latest. Dr. Insel said that a vote would not be necessary because he heard general agreement among members that this statement should be written and posted.
Dr. Insel said the statement would not speculate about either the diagnosis or treatment, but instead would talk more generally about the issues that such an event raises about obtaining services, inclusion, and the importance of avoiding stigma and marginalization. It was noted that once the statement is posted on the IACC website, other organizations will link to it and it will be disseminated. It was agreed that Mr. Robison would draft the text and solicit comments from the other members and that he would circulate the first draft this evening.4 Dr. Jim Ball agreed to send Mr. Robison some citations the Autism Society is using in its second statement on the Newtown shootings.
Oral Public Comment Session
Dr. Insel introduced the public comment session and said that one person signed up to provide oral public comments. He said that the Committee would discuss these comments and the written public comments that were submitted.
Ms. Dawn Loughborough introduced herself as a mother of three children, one with autism, and said she was here to follow up on her earlier request that a task force be convened to look into the environmental causation of autism. She also said that she would describe some points of interest for the IACC regarding the Committee on Oversight and Government Reform hearing held November 29, 2012: "1 in 88 Children, A Look into the Federal Response to the Rising Rates of Autism."5
Ms. Loughborough said that an overriding concern of the Congressional committee members and the families that testified at the hearing was the verbal evidence provided that autism is medical and that families are seeing their children regress after receiving vaccines. She summarized why the government body of evidence for vaccine safety studies is under question and said that it is time to reopen and reexamine the link between vaccine exposure and autism causation. She asked that a task force be convened to investigate the complex medical interactions involved in the childhood vaccination schedule and the associated vaccine ingredients. She also asked for a long-term vaccinated versus voluntary unvaccinated study review of health outcomes. She said that such a task force should also determine appropriate integrative treatment solutions to help these children. Ms. Loughborough proposed that health institutions expand to a new paradigm of looking at autism as a complex multisystem medical condition instead of a set of psychological behaviors.
In addition, Ms. Loughborough commented that medical programs and insurance coding are needed to embrace the current science on autism, which recommends an integrative medical outlook. She emphasized that there is a great deal of verbal evidence regarding vaccine causation and that vaccines are known to cause brain damage and death, which is why the National Childhood Vaccine Injury Act was passed in 1986. She concluded that, at some point, the national vaccine policy became more important than the children it was designed to protect.
Public Comments Discussion Period
Dr. Insel thanked Ms. Loughborough for her testimony and noted that the Committee received 120 pages of written public comments, suggesting a range of areas that the public would like to see the IACC address. Some of the comments were specific to the process for updating the IACC Strategic Plan. Dr. Matthew Carey commented on one of the public comments received, saying he agreed that it would be important to look at difficulties involved for families and individuals with disabilities in obtaining services following a public emergency situation, such as a hurricane. Dr. Insel responded that it is within IACC's purview to ensure that the Secretary hears about emerging issues regarding service needs.
Ms. Jan Crandy said she previously had suggested that a task force on environmental factors that would address vaccination should be created and she commented that having studies on vaccination is a gap that needs to be addressed. Dr. Carey said that the IACC has supported the study of environmental factors, and he discussed some of the limitations in the scope of the IACC's influence due to its designation as an advisory committee. Ms. Lyn Redwood said she also supports the establishment of an environmental task force and noted that funding has been inadequate in this area. She said that it would be helpful to have a task force or subcommittee recommend ways to move research in environmental factors forward.
Dr. Insel commented that one issue appears to be a desire to see an increased focus on environmental factors and to determine how to ensure that this science is done and done well. The second issue, he said, involves vaccines per se, and the IACC has turned to the National Vaccine Advisory Committee (NVAC) in this regard, which in turn, has asked the Institute of Medicine to conduct a study that should be available soon.6
It was noted that the National Children's Study may be helpful in addressing vaccination as a possible gap. Dr. Guttmacher said that this study will begin in 2014, enroll 100,000 children at or before birth and follow them until they reach age 21, and obtain samples about their environmental exposures from pregnancy onward. He noted that the study will provide a great deal of information about various environmental influences that may play a role in autism and that by the end of this decade rich data about environmental and other influences on children who develop ASD should be available. Dr. Guttmacher also commented that the design will be more tightly tied to electronic health records for many of the children and that there will be direct access to vaccine records, including lot numbers (depending on the detail in the medical record). Dr. Insel added that the other potential source of information will be the NIMH-funded Health Outcomes Study (which uses claims data), the results of which will be reported over the next few weeks.
Dr. Linda Birnbaum mentioned that studies of several relatively small longitudinal birth cohorts are ongoing, looking at families that already have one autistic child and that are having a second child. The studies will involve prenatal and genetic information as well exposure information during pregnancy and afterward.
Dr. Walter Koroshetz said that NINDS also supports a large population study in Norway looking at all births over a 10-year period that has identified up to between 400 and 500 cases of autism; the study is using pregnancy records, data about the pregnancy, vaccination records, and samples taken during the pregnancy and at delivery. Dr. Coleen Boyle mentioned that CDC is funding the Study to Explore Early Development (SEED), which is looking at the relationship of a wealth of environmental-related factors to autism and other developmental disabilities. In response to a public comment, Drs. Guttmacher and Koroshetz emphasized the importance of supporting work in communication disorders and abnormalities in the auditory system associated with autism.
Dr. Insel said that the recommendation about the need for further research that would involve a study of vaccinated and unvaccinated populations and autism risk would be revisited later during the meeting to get a sense of the temperature of the full Committee on this issue.
Before beginning the discussion on the update chapters, Dr. Insel reviewed IACC functions, including updating the Strategic Plan, and he reviewed the timeline leading to the day's meeting, during which the Committee would go through the draft chapter by chapter to move it into final form. The lead(s) for each chapter would be asked to summarize the chapters, and then any comments or concerns by Committee members would be discussed and a vote would be conducted for each chapter.
Dr. Insel said that the draft 2012 Strategic Plan Update document provided a good summary of the work that had been done in the last two years and the gaps that have emerged, but that any egregious omissions (work/findings that could change the trajectory of autism research) should be mentioned during the course of the day. He said that the Committee should not spend time repeating what is in the current Strategic Plan or in previous updates and that the community is best served by focusing on what is truly new and different. For gaps, he said it is important to identify those new opportunities that come about from new discoveries and that it is also important to be mindful that profound discoveries have emerged in biology and in many areas of neuroscience over the past two years that have not yet been implemented in the autism community. Dr. Insel read the original vision statement for the Strategic Plan and noted that the Plan will set the standard for public/private coordination and community engagement.
Discussion and Vote - Question 1: Diagnosis
Dr. Insel asked Mr. Robison, the Lead for the Question 1 Planning Group, to lead the discussion. Mr. Robison, during his overview of Question 1, said that the main change from the previous Strategic Plan is that the scope had been expanded to include adults. He summarized the new research and the gaps. Mr. Robertson commented that he was concerned that the paragraph on the British study toward the end of the document (page 4) (Brugha et al., 2011) does not go further to suggest that there should be broad initiatives to look at autism prevalence among adults in the United States and that this should be a major priority of NIH/CDC. Mr. Robison said that he thought that the British study has made clear that there is a large undiagnosed adult population and that he believes we need to conduct studies to discover what that unrecognized population needs, but he also noted that this is beyond the scope of Question 1. Mr. Robertson suggested that adult issues should be embodied across the plan and that therefore this may belong in some of the other questions. After some discussion about where this information should be presented in the update, Dr. Insel suggested flagging this issue and talking about it when the Committee discusses the surveillance question later during the meeting.
Ms. Crandy commented on the language in the Strategic Plan Update regarding the designation of Social Communication Disorder (SCD) as a new disorder by the American Psychiatric Association in the upcoming edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Members discussed how SCD may relate to the IACC's purview, and it was agreed that SCD falls under the IACC umbrella—the International Classification of Diseases (ICD) still includes it, and it is within the scope of ASD by United Nations (U.N.) standards. Ms. Crandy commented that some States are proposing legislation to bypass the new DSM-5 diagnostic categories in order to maintain the old diagnoses that were made or would have been made under the previous version, DSM-4. Ms. Crandy and Dr. Carey expressed concerns about how it will be understood what services and supports are needed in this area if no one is investigating this population.
Dr. Insel proposed adding a sentence about the importance of noting SCD and its relationship to the ASD diagnostic group and that it will be important to have longitudinal data about people who receive this new diagnosis.
The Committee voted unanimously to accept this chapter with the addition of the new sentence.
Discussion and Vote - Question 2: Biology
Dr. Koroshetz, who served as the Lead for the Question 2 Planning Group, reviewed the research advances and gaps for this question. Dr. Insel commented on the challenges involved in keeping up with all the new research that is emerging. For example, since this chapter was written, a breakthrough paper was published in Science Translational Medicine that shows that the duplication of MecP2, the gene that causes Rett syndrome, leads to a defect in the immune system.7 Dr. Insel said that the group should be commended for keeping up so well with the research. He also suggested that the draft Strategic Plan Update be edited to limit the number of authors listed in the references for some projects with especially long author lists, such as the ENCODE Project.
The Committee voted unanimously to accept this chapter as written.
Discussion and Vote - Question 3: Risk Factors
Ms. Redwood, who served as the Lead for the Question 3 Planning Group, reviewed new research and gaps. Mr. Robertson had some comments regarding the chapter's formatting and noted that, with members of the public reading this document, he was concerned about paragraph length and readability. Dr. Daniels said that this is part of the OARC's editing process and that shorter paragraphs and/or bullets will be used to make the material easier to read.
Mr. Robertson commented on language concerning etiology, noting that the document states that autism is likely to have multiple distinct etiologies. Committee members discussed whether there is justification in the scientific literature for using the word "likely" instead of "possibly." Dr. Insel said that at this point, it can be said definitively that there are distinct etiologies within ASD, including fragile x, Rett syndrome, and other known single gene mutations that cause autism. Mr. Robertson said it appeared as though the movement has been from separate diagnostic categories regarding autism to ASD being viewed as a unified spectrum. Dr. Koroshetz commented that rather than moving toward being a unified spectrum, ASD has become an umbrella term for a disorder that includes a lot of heterogeneity within it.
There was discussion among members about apparent differences in autism prevalence in different countries, with the idea that there may be some environmental risk factors involved. Ms. Abdull said that she believes there is insufficient research on populations moving to the United States who then experience higher rates of ASD. Mr. Robertson remarked that there is no evidential justification to say that autism in the United States is different from autism around the world and that the research shows the opposite. He talked about how, culturally, people look at developmental disabilities differently, and he said that he is skeptical about some of the rates being diagnosed in the U.S. versus in other countries. It was noted that there is some research showing that in many other countries autism is underdiagnosed because of stigma and cultural differences; autism is not viewed through the same lens that we use here in the U.S. Ms. Abdull said she did not want parents' voices or views regarding experiences of higher autism rates within their communities after immigrating to the U.S. to be dismissed just because there have not been studies to provide supporting data and that the lack of such studies represents a gap. Dr. Carey said more epidemiological data on autism for Africa and other countries would also be helpful.
After continued discussion, it was agreed to say in chapter 3, under the environmental exposure paragraph, that investigating the changes in the environment potentially related to prevalence rates of autism in immigrant populations as they move to industrialized countries is a gap area that needs further study and that more surveillance information is needed from a global perspective. A sentence would be added that would note the two papers that Dr. Carey mentioned regarding data that have been published about effects in immigrant populations in Sweden and the Netherlands.8, 9 In addition, this would be an opportunity to begin to ask questions about environmental factors that may be relevant. Dr. Insel said that although one generally wants to define the risk before looking at risk factors, there are already some data, particularly from Sweden, that could be brought to the table. With the additional new findings, new opportunities may be available for research on this issue.
The Committee also discussed whether the update should include text on the need for a study of autism prevalence in vaccinated versus unvaccinated children as a possible remaining gap. Ms. Crandy said that they continue to hear from the public about this issue and that it should be addressed somewhere in the Strategic Plan Update. She continued, saying that it is important that the Committee continue to recognize and value the public's opinions and address any public perception that the issue is not getting the attention it deserves. Ms. Redwood also mentioned that this issue had come up on Planning Group phone calls and she asked if Dr. Insel could respond.
Dr. Insel asked if there have been any new developments in this area since the 2011 Strategic Plan. Ms Redwood cited a review of the legal literature10 that had found that several children involved in litigation in the Vaccine Injury Compensation Program (VICP) were found to have a co-diagnosis of autism. Dr. Insel asked how the committee felt about this. Dr. Carey responded that he had not found that review to be compelling due to the way in which the analysis was conducted. He said, for example, that the study counted a family that had argued against an autism diagnosis for their child as an instance of linking autism to a person involved in VICP litigation. Dr. Guttmacher and Dr. James Battey also weighed in that they felt that findings from the legal literature were not the equivalent of scientific evidence, though valuable for other purposes.
Ms. Crandy then returned to the question of whether the Committee would consider including a recommendation that a study of vaccinated versus unvaccinated children be conducted. Dr. Insel asked if she was talking about a randomized trial, and Ms. Redwood responded that she thought a randomized trial had been ruled out due to ethical concerns, but perhaps a study of those who are voluntarily not vaccinating would be possible.
Dr. Carey said it would be a difficult study to do, even as something less than a fully randomized clinical trial, due to potential confounding factors. For example, siblings of children with autism, who may have a 20% increased risk of developing autism, may be more highly represented in the unvaccinated sample. But he added that datasets are being developed in several ongoing projects that may address some of these questions. Examples include a study of a birth cohort in Norway and the NICHD-funded National Children's Study (NCS). Ms. Redwood said that one of the problems with the NCS is that it may be underpowered to answer the question unless it targets unvaccinated children for enrollment. Dr. Carey said, however, that this would introduce the type of bias that needed to be avoided.
Dr. Insel said that, in past Committee discussions, one of the concerns the Committee has struggled with was that so much of the information coming from scientific experts suggests that the environmental factors of interest are acting during prenatal development, and that there is increasing evidence of brain changes in the first year before symptoms appear. This suggests that in many children, autism has begun before vaccinations are on the horizon. Therefore, there is a question regarding whether raising the issue of vaccination, which takes place after birth, as a potential cause is consistent with the latest scientific evidence.
Ms. Redwood questioned whether some research, such as findings showing that children with regressive autism have increased head circumference, necessarily suggests prenatal development of autism. Dr. Insel clarified that recent electroencephalography (EEG) and other data have suggested that children may be starting down the autism trajectory very early in development, but that the signs are only being noticed later in development when milestones such as speech usually develop. He said that the Committee has grappled with the feasibility of conducting the kind of rigorous trials that would answer the kinds of questions Ms. Redwood was raising. The remaining question for the Committee, Dr. Insel said, is whether there is anything new or different to state regarding what was provided in the 2011 Strategic Plan update.
Dr. Insel said that due to genuine differences of opinion on the matter, the Committee would need to vote on whether language should be added to this update about the need for a study on vaccinated versus unvaccinated children and autism separately from the vote on other changes to the question to ensure that that language that ends up in the plan is a function of what the majority of the Committee wants.
The first vote that was taken for this question was a vote on recommendations to 1) change the formatting in some of the long paragraphs and 2) include a sentence under the discussion of environmental risk factors associated with immigration to include the two references about immigrant populations.
The Committee voted unanimously to accept the chapter with these changes.
In order to ensure an accurate count, Dr. Daniels conducted a roll call vote on the motion to add language (not yet specified) to the Strategic Plan Update to describe the need for further research that would involve a study of vaccinated and unvaccinated populations and autism risk.
The final vote was 2 in favor (Ms. Crandy; Ms. Redwood) of adding language regarding a vaccinated versus unvaccinated study, 15 not in favor (Dr. Insel; Dr. David Mandell; Dr. Cathy Rice, standing in for Dr. Boyle; Dr. Tiffany Farchione; Dr. Guttmacher; Dr. Birnbaum; Dr. Larry Wexler; Ms. Abdull; Dr. Anshu Batra; Dr. Sally Burton-Hoyle; Mr. Noah Britton; Dr. Carey; Mr. Robertson; Ms. Alison Tepper Singer; Dr. Battey) and 3 abstaining (Dr. Donna Kimbark; Ms. Laura Kavanagh; Mr. John O'Brien).
Thus, the motion was not accepted by the majority of the Committee.
Discussion and Vote - Question 4: Treatments and Interventions
A roll call was conducted to ensure that there was still a quorum. Dr. Batra reviewed new findings in the area of treatments and interventions for ASD. Then, Mr. Britton, another Lead for Question 4, reviewed new gaps in the area.
Committee members discussed the need to make some changes in the early behavioral intervention section. There was concern about the amount of space given to describing the Early Start Denver Model (ESDM) given that some of the information was included in the previous update of the Strategic Plan. It was agreed that text regarding changes for the early behavioral intervention section would be developed and shared with the Committee before the end of the meeting.
The Committee discussed several other issues, including whether it is appropriate to focus on "treating" "core symptoms" of autism, when some symptoms such as repetitive behavior may be harmless in some individuals. Mr. Robertson and Mr. Britton suggested that focusing on improving quality of life might be an alternative. The Committee also discussed the use of language to describe segments of the ASD population who are affected differently in different domains; for example, the Committee debated whether "nonverbal," "having major communication challenges," "high/low communication skills," "needing excessive supports," or "low/high functioning" are acceptable terms. Different members had different opinions on the use of these terms, but it was agreed that at times it is necessary to use some type of terminology to identify specific groups who may, for example, have had a positive response to a treatment that may not be applicable to individuals affected in a different way. In addition, the committee discussed people first language versus "autistic/person/individual" and "on the autism spectrum," and different members had different views. Ms. Lewis suggested that the Committee consider adding disclaimer language to the Strategic Plan Update acknowledging that there are different views in the community on the use of such terminology and clarifying how terminology is used in the document. Dr. Daniels commented that such a disclaimer could be added to the Strategic Plan Update and that she would consult with Ms. Lewis.
After additional discussion, the Committee proposed the following changes:
- Add a paragraph at the beginning of the document on the use of terminology in the document, acknowledging different viewpoints but not endorsing any single viewpoint.
- Delete the sentence in the middle of page 4 regarding the emphasis on continuing the development of behavioral treatments (keep the "likewise," and add, "as the effects of behavioral interventions become more apparent, better information regarding the most critical components of treatment are needed").
- Change the language so that the term "high/low functioning" is not used.
- Delete the specific reference to repetitive transcranial magnetic stimulation on page 4 and change the language from "concluded" to "confirmed" in discussing side effects.
The Committee voted unanimously to accept this chapter with these changes.
Discussion and Vote - Question 5: Services
Dr. Mandell, one of the Leads for the Question 5 Planning Group, discussed new findings and gaps. Ms. Singer commented that there has been much eagerness on the part of Committee members, particularly some of the parent members, to focus on these issues with regard to best practices in terms of access, reducing disparities, service delivery and implementation, and what is happening in the various States. It was mentioned that perhaps at the next full IACC meeting, the Committee should talk about creating either a workgroup or a subcommittee to work on a services delivery plan to address those issues. Dr. Insel said that this could be discussed at the next full IACC meeting.
The Committee also discussed the challenges of distinguishing between services that are medical and services that are educational, as some interventions, such as early interventions, are delivered in both arenas but are governed by entirely different laws and regulations and administered by different government agencies. They discussed whether these distinctions could be made in the current document but decided that due to the complexity, it would need to be deferred to later discussions and projects of the Committee or Services Research and Policy Subcommittee.
After additional discussion, Dr. Insel reviewed the changes proposed to this question:
- Add language that includes more information about State-based waivers.
- In the section under translating research into practice, to emphasize the fact that there is support for screening and that there are several research-based screening studies showing it can be effective, add a sentence that is more positive about what screening could offer in the future. The text could say something such as, "There is professional community support for autism screening and some promising findings in terms of more ideal implementation in pediatric practices, although not yet ready to translate to full-scale utilization."
The Committee voted unanimously to accept the chapter with these changes.
Discussion and Vote - Question 6: Lifespan Issues
Dr. Mandell, one of the Leads for the Question 6 Planning Group, described research and gaps for Question 6, including the need for more data on adult service needs, approaches for diagnosis in adults, studies of quality of life issues, and research on employment strategies and transition to adulthood. Dr. Mandell commented that there is little that is new in terms of emerging gaps, but that there is some new data on old gaps. After discussion of these issues, the Committee agreed to one minimal change—to remove the parenthetical reference to the Autism Diagnostic Observation Schedule (ADOS) in the paragraph regarding diagnosing ASD in adults—because the epidemiological study in question used multiple diagnostic scales, none of which may have been truly optimal for adults.
The Committee voted unanimously to accept the chapter with this change.
Discussion and Vote - Question 7: Infrastructure and Surveillance
Dr. Kimbark reviewed new findings and gaps in the draft document, and Committee members discussed a number of possible changes to this question, including the issue involving adult surveillance discussed earlier in the meeting.
Dr. Insel summarized the changes discussed for Question 7 as follows:
- Under biobanking, the wording will be changed so that there is one paragraph that describes the freezer malfunction and the resulting brain losses and delays and what it means in terms of a delay in research; then, a new paragraph will be created that discusses the Autism Tissue Program (ATP) and its status in a way that makes it clear that the ATP is not new and was not established as a response to the loss of samples in the freezer accident.
- Under the surveillance section, within the gaps section, language will be added on the need for a global surveillance effort looking at incident rates/prevalence and more surveillance efforts for adults, to include a more extensive needs assessment/exposure questionnaire for adults.
- Under gaps, in the section on NDAR, the header will be changed to "Data Sharing and Databases," and the text on NDAR will be changed to focus on data sharing and using databases. This will be done by adding additional text in a separate paragraph that will mention some of the new opportunities that will be emerging in 2013. This includes the availability of large datasets that can be used for secondary analysis to answer questions related to autism (the Lewin Group dataset, data from the Mental Health Research Network, and CMS data). Text will also be included regarding the opportunity to link databases related to environmental toxins, for which Ms. Redwood and Dr. Lawler will send information.
- Under surveillance/gaps (last sentence), "including environmental exposures" will be added parenthetically.
- Regarding research workforce and development, the text will be changed to emphasize the development of a diverse research workforce.
Dr. Daniels noted that Dr. Rice supplied a few corrections for page 3 (changing "diagnosed" to "identified" and stating that the surveillance of Somali children in Minnesota is under way).
The Committee voted unanimously to accept the chapter with these changes.
Discussion and Vote - Introduction and Conclusion
After Dr. Insel briefly discussed the introduction and conclusion and their purposes, the Committee voted unanimously to accept the introduction and conclusion of the document as written.
Further Discussion of Question 4: Treatments and Interventions
The Committee reviewed new language (on early behavioral intervention) for Question 4 that was developed during the meeting. The text was displayed on several slides (with underlining indicating the changed text).
Regarding the language on Slide 2, Ms. Singer said that instead of having a short sentence that talks about a clinical trial taking place but that does not provide any results, she thought that either the results should be included or that sentence should be deleted. After discussion, it was agreed to keep the sentence but change the language. Dr. Insel suggested language saying that over the past 18 months, there has been at least one report of a randomized clinical trial—in toddlers, using a parent-implemented intervention—although more work is needed to be able to establish the efficacy of this approach. Dr. Insel said that the hours of intervention also would be specified according to the information in the reference.
The Committee voted unanimously to accept the new language with the change discussed.
Wrap-Up and Next Steps
Dr. Insel said that next steps will be to get the update document into final form and that he thinks a draft version of the statement on the Newtown shootings will be sent to all Committee members later today for comments; the goal is to have the piece up on the website by Friday at the latest. Dr. Daniels asked anyone who would be interested in being a media contact for the statement to send her a separate e-mail. Dr. Daniels indicated that the next IACC meeting will be on January 29; this will be a full day, full Committee, in-person meeting in Bethesda, Maryland. During this meeting, the Committee will begin to discuss plans for the coming year and what the Committee would like to accomplish in terms of the annual activities required under the Combating Autism Act. Dr. Insel noted plans for how to address services issues would be a topic of discussion at the January meeting.
Dr. Insel adjourned the meeting at 4:13 p.m.
These minutes of the IACC Full Committee were approved by the Committee on January 29, 2013.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
1 Substance Abuse and Mental Health Services Administration's Understanding Mental Illness: Factsheet
2 Robison JE. Asperger's, Autism, and Mass Murder. Psychology Today. 2012 Dec 17.
3 Harmon A. Fearing a Stigma for People with Autism. The New York Times. 2012 Dec 18.
4 This statement was later published by the IACC: Interagency Autism Coordinating Committee (IACC) Press Release. Statement of the Interagency Autism Coordinating Committee (IACC) Related to the Sandy Hook Tragedy. 2012 Dec 21.
5 U.S. House. Committee on Oversight and Government Reform. 1 in 88 Children: A Look into the Federal Response to the Rising Rates of Autism. 2012 Nov 29.
6 This report is now available: National Research Council. The Childhood Immunization Schedule and Safety: Stakeholder Concerns, Scientific Evidence, and Future Studies. The National Academies Press. 2013.
7 Yang T, Ramocki MB, Neul JL, Lu W, Roberts L, Knight J, Ward CS, Zoghbi HY, Kheradmand F, Corry DB. Overexpression of Methyl-CpG Binding Protein 2 Impairs TH1 Responses. Sci Transl Med. 2012 Dec 5;4(163):163ra158. doi: 10.1126/scitranslmed.3004430. [PMID: 23220634]. [PubMed - in process]
8 Magnusson C, Rai D, Goodman A, Lundberg M, Idring S, Svensson A, Koupil I, Serlachius E, Dalman C. Migration and autism spectrum disorder: population-based study. Br J Psychiatry. 2012 Aug;201:109-15. [PMID: 22361019]
9 van der Ven E, Termorshuizen F, Laan W, Breetvelt EJ, van Os J, Selten JP. An incidence study of diagnosed autism-spectrum disorders among immigrants to the Netherlands. Acta Psychiatr Scand. 2012 Dec 9. [PMID: 23216206]
10 Holland M, Conte L, Krakow R, Colin L. Unanswered Questions from the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury,
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- Oral Public Comments (PDF – 77 KB)
- Written Public Comments (PDF – 1.3 MB)
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- Draft: Strategic Plan Update - Introduction and Conclusion (PDF – 77 KB)
- Draft: Strategic Plan Update for Question 1 (PDF – 133 KB)
- Draft: Strategic Plan Update for Question 2 (PDF – 137 KB)
- Draft: Strategic Plan Update for Question 3 (PDF – 95 KB)
- Draft: Strategic Plan Update for Question 4 (PDF – 119 KB)
- Draft: Strategic Plan Update for Question 5 (PDF – 93 KB)
- Draft: Strategic Plan Update for Question 6 (PDF – 70 KB)
- Draft: Strategic Plan Update for Question 7 (PDF – 94 KB)
The documents listed above are draft versions. The final Section 508 compliant versions of the documents will be posted shortly.
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- Meeting Transcript (PDF – 480 KB)
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- IACC Meeting Full Slide Set (PDF – 118 KB)
IACC Introduction (PDF – 78 KB)
Thomas Insel, M.D., Director, National Institute of Mental Health and Chair, IACC
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