The agenda for the upcoming IACC meeting has been posted. The schedule is very full. Kathleen Sebelius, secretary of Health and Human Services, Michael Doyle U.S and Christopher Smith, members of Congress, Kareem Dale and Michael Strautmanis, White House staff, are attending.
New reports and a new Web Tool with be announced by OARC (the Office of Autism Research Coordination)
I will be there for my first meeting as a public member of the IACC.
9:00 a.m. Call to Order and Opening Remarks
Thomas Insel, M.D. Director National Institute of Mental Health and Chair, IACC
Welcome Recognition of Former IACC Members Introduction of New IACC Members
10:00 The Honorable Kathleen Sebelius Secretary, U.S. Department of Health and Human Services
10:30 The Honorable Michael Doyle U.S. House of Representatives 14th District of Pennsylvania
10:40 The Honorable Christopher Smith U.S. House of Representatives 4th District of New Jersey
10:50 Kareem Dale, J.D., MBA Associate Director White House Office of Public Engagement & Special Assistant to the President for Disability Policy
11:00 Michael Strautmanis, J.D. Deputy Assistant to the President and Counselor for Strategic Engagement to the Senior Advisor Executive Office of the President
11:10 Alexa Posny, Ph.D. Assistant Secretary of Special Education and Rehabilitative Services U.S. Department of Education
11:20 Francis Collins, M.D., Ph.D. Director National Institutes of Health
11:30 Morning Wrap-Up
Thomas Insel, M.D. Director National Institute of Mental Health, and IACC, Chair
11:45 a.m. Lunch
1:00 p.m. Public Comments
1:30 ASD Science Update
Thomas Insel, M.D. Director, National Institute of Mental Health and Chair, IACC
1:45 Administration for Community Living
Henry Claypool Principal Deputy Administrator, ACL
2:00 Update on Restraint and Seclusion
Larry Wexler, Ed.D. Director, Research to Practice Division Office of Special Education Programs U.S. Department of Education
2:15 Update on the DSM-5 Criteria for Autism Spectrum Disorders
Susan E. Swedo, M.D. Chief Pediatrics & Developmental Neuroscience Branch, NIMH Chair, The SDM-5 Neurodevelopmental Disorders Workgroup, American Psychiatric Association
2:30 Insurance Coverage for Autism Treatments
Stuart Spielman, J.D. Senior Policy Advisor and Counsel, Autism Speaks
Peter Bell, M.B.A. Executive Vice President of Programs and Services, Autism Speaks
2:40 Autism and Epilepsy: Clinical Profile across the Lifespan
Geraldine Dawson, Ph.D. Chief Science Officer, Autism Speaks
2:50 Update on NIH/Autism Speaks/CURE Meeting on Epilepsy and Autism
Deborah Hirtz, M.D. Program Director, Office of Clinical Research National Institute of Neurological Disorders and Stroke
3:00 Break
3:15 IACC Business
Susan A. Daniels, Ph.D. Acting Director, Office of Autism Research Coordination and Executive Secretary, IACC
OARC/IACC Updates – New Document and Web Releases
2011 IACC Summary of Advances 2010 IACC ASD Research Portfolio Analysis Report IACC/OARC Portfolio Analysis Web Tool IACC/OARC ASD Research Publications Analysis
Planning Future Committee Activities
IACC Subcommittees and Workgroups 2012/2013 IACC Strategic Plan Update 2012 IACC Summary of Advances 2011 IACC Portfolio Analysis IACC Workshop
4:30 Public Comments Discussion Period
5:00 Closing Comments and Adjournment
Schedule subject to change. Meeting may end prior to or later than 5:00 p.m. depending on the needs of the committee
By Matt Carey
Left Brain Right Brain 
A whole 15 minute update on the DSM-5 Autism Do-Over?
Any chance you can ask Dr. Swedo to remove the Mandatory Criterion A, express exclusion of persons with Intellectual Disability wording, “not accounted for by general developmental delays”, from the new ASD?
A whole 15 minutes for the DSM-5 Autism Do-Over Update?
Any chance you can ask Dr. Swedo to remove the express exclusion language, “not accounted for by general developmental delays, which expressly excludes Intellectual Disabled from Mandatory Criterion A?
Harold, I when I first saw the DSM-V I had the same concerns you have, but I think they have addressed them in revisions to the rationale (the wording seems to have changed since I first saw it a few years ago):
http://www.dsm5.org/proposedrevisions/pages/proposedrevision.aspx?rid=94#
ID is specifically mentioned as an associated feature which would be included in a person’s diagnosis. Having ID would not exclude a person from an autism diagnosis, the person would have a double diagnosis. In addition, ‘general developmental delay’ is only considered in the area of social communication, it is not a factor for the other core symptoms like repetitive behaviors. It seems like a pretty obvious consideration to take into account when determining why a child is not communicating. Not all non-verbals are autistic.
What you are proposing would exclude individuals like my son, who has severe classic autism, but no ID. He is most certainly not an Aspie. If ID/MR were part of a severe/classic autism diagnosis, individuals like my son would be at risk of losing services due to underestimation of disability.