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IACC Subcommittee for Basic and Translational Research Planning Group for Question 1 (When Should I Be Concerned?) Conference Call - September 27, 2012

meeting announcement Announcement
Topic Topic Description
Date: Thursday, September 27, 2012
Time: 2:00 p.m. to 4:00 p.m. Eastern
Agenda: The planning group for Question 1 will discuss updates for the IACC Strategic Plan.
Place: No in-person meeting; conference call only
Conference Call: Dial: (888) 324-8117
Access code: 4754127
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: The meeting will be made available to the public via conference call. 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 or call the IACC Technical Support Help Line at 443-680-0098.

Accommodations Statement:
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.

Schedule subject to change.

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meeting agenda Agenda

No in-person meeting; conference call only.

Time Event
2:00 p.m. Roll Call and Opening Remarks

John Robison
Self-Advocate, Parent and Author
Chair, Basic and Translational Research Question 1 Planning Group

Roger Little – Designated Federal Official
National Institute of Mental Health (NIMH)
2:15 p.m. Discussion
4:00 p.m. Adjournment

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meeting minutes Minutes

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Basic and Translational Research Strategic Plan Question 1 Planning Group convened a conference call on Thursday, September 27, 2012, from 12:27 p.m. to 1:06 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Mr. John Robison, Chair, presided.


John Elder Robison, Chair, Self-Advocate, Parent, and Author; Roger Little, Ph.D., Designated Federal Official, National Institute of Mental Health (NIMH); Elizabeth Baden, Ph.D., Office of Autism Research Coordination (OARC), (NIMH); Coleen Boyle, Ph.D., M.S.Hyg., Centers for Disease Control and Prevention (CDC); Daniel Coury, M.D., Nationwide Children's Hospital; Alice Kau, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (representing Alan Guttmacher, M.D.); Ami Klin, Ph.D., Marcus Autism Center

Welcome and Discussion

Dr. Roger Little welcomed participants to the call for the planning group to update Question 1, "When should I be concerned?" of the IACC Strategic Plan for ASD research. Mr. John Robison thanked all participants for joining the call. He noted that he had sent out an email to the Group that raised some issues about Question 1. In particular, he felt that people of any age – not just children – should be included in the update of Question 1. Dr. Alice Kau agreed and asked if this point could be incorporated into the addendum for the 2012 revision. Mr. Robison said they should state early in the 2012 addendum that this Planning Group has recognized that the scope of Question 1 should be extended to include individuals of all ages with autism.

Dr. Coleen Boyle noted that their final document should be about two pages long, and focus on high-level work and advances. She mentioned two articles (the only 2 that were highlighted in the summary of advances relative to this specific question) that should be incorporated. The first addressed disrupted neural synchronization1 and the second discussed the 1-year well-baby check-up approach.2

It was noted that because the previous update occurred early in 2011, there might be other 2011 articles that should be considered for inclusion, as well. There also was discussion regarding whether the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5)3 changes would pertain to the question as applied to older individuals with autism. It was agreed to ask IACC member Catherine Rice, Ph.D. – who was designated to provide updates on the science the development of the DSM-5 – and other experts to highlight the gaps in knowledge relative to adults. It was also noted that Susan Swedo, M.D., Chair of the DSM-5 Neurodevelopmental Disorders Work Group, could provide additional comments. Ongoing research activities could also be planned to identify research gaps

Dr. Ami Klin said that the 1-year check-up article was a forward-looking attempt to bring autism screening to primary care physicians' offices. He said that it seemed that soon it may be possible to talk about universal screening for autism as a community-based service provided through primary care physicians' offices and medical homes. Dr. Kau asked Dr. Klin if he thought it was time to address measurement issues, such as high false-positive rates. Dr. Klin said that some ongoing studies were on a larger scale and likely would yield much better results with regard to sensitivity and specificity. Regarding universal screening, he said that it was reasonable to wait for research that yields better data.

Dr. Boyle said she took a different approach to the performance of a screening test, in the context of universal screening. She suggested that the 1-year check-up study should be noted in the first section – what is new and what has been learned. She said they wanted to be able to drive the research in the direction of universal screening; this update was an opportunity to highlight an advance. Dr. Klin said that there was a need for tools that could be used in the community Dr. Kau supported including this idea as a research opportunity.

Dr. Boyle mentioned a study by King et al that involved understanding the challenges and barriers to screening and referral.4 She noted that this concept was already in the document, along with the gaps – the lack of reliable and valid screening and insufficient referral for diagnosis and services. Dr. Daniel Coury said that they were talking about two different levels of need. One was at the level of developing screening instruments with better specificity and sensitivity, and the other was how to reliably implement such screening with a high degree of consistency. There were two steps involved in identifying and screening children early. At the present, they could reach for improvements in using the tools currently available, and at the same time, they could work to improve those tools. Dr. Klin said that autism was different from other medical conditions, which have performance-based or biologically-based tests. There was a push to search for science-based means of quantifying autism for possible use in screening. Some of the biomarkers being discussed are too expensive to be used for population-based studies.

Mr. Robison commented that studies such as last year's two-part study in the United Kingdom, which found a 1 percent incidence of undiagnosed autism among adults.5, 6 This suggested the possibility that the U.S. also has a large undiagnosed population of adults on the autism spectrum. Dr. Boyle said that this was an important issue that should be mentioned; the U.K. study should be included – and its implications for gaps better understood. Dr. Klin said that the perception in the U.S. is that the number of adults with ASD is very small, when it actually may be more likely that the prevalence of ASD among adults may be similar to the prevalence of ASD in children. This question was finally addressed in the U.K. prevalence through the cited studies. It was agreed that it was important to make this clear and to note the challenges in the studies. They agreed that research on the prevalence of autism among adults in the U.S. should be an action item; given that there have been no such studies to date.

Mr. Robison asked that the members email any articles that they had identified as substantial enough to be included in the update to him by the middle of the following week. He would include these in a draft that he would then send to all participants for revisions before presentation at the 2012 IACC Strategic Planning Workshop. They agreed that that the work would be completed by email, though another call could be scheduled if necessary. Dr. Elizabeth Baden asked everyone to copy her and Ms. Gemma Weiblinger on all email correspondence.


The call was adjourned at 1:06 p.m.


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

/Susan Daniels/ November 16, 2012
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee


1 Dinstein I, Pierce K, Eyler L et al. Disrupted neural synchronization in toddlers with autism. Neuron. 2011 Jun 23;70(6):1218-25. [PMID: 21689606]

2 Pierce K, Carter C, Weinfeld M et al. Detecting, studying, and treating autism early: the one-year well-baby check-up approach. J Pediatr. 2011 Sep;159(3):458-465.e1-6 [PMID: 21524759]

3 American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.

4 King TM1, Tandon SD, Macias MM et al. Implementing developmental screening and referrals: lessons learned from a national project. Pediatrics 2010 Feb;125(2):350-60 [PMID: 20100754]

5 Brugha T, McManus S, Meltzer H et al. 2009 Autism Spectrum Disorders in Adults Living in Households Throughout England—Report From the Adult Psychiatric Morbidity Survey 2007. Leeds, England: NHS Information Centre.

6 Brugha TS, McManus S, Smith J et al. Validating two survey methods for identifying cases of autism spectrum disorder among adults in the community. Psychol Med. 2012 Mar;42(3):647-56. [PMID: 21798110]

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meeting transcript Transcript
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