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Meeting of the Interagency Autism Coordinating Committee January 14, 2014

17 Dec

Below is the announcement emailed by OARC (the Office of Autism Research Coordination) announcing the next Interagency Autism Coordinating Committee meeting. The meeting will be held on January 14th. Deadline for submission of comments is January 7th.

Note: I serve as a public member to the IACC but my comments here and everywhere are my own.

Meeting of the Interagency Autism Coordinating Committee
Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 14, 2014 from 8:30 a.m. to 5:00 p.m. ET at the National Institutes of Health, 31 Center Drive, Building 31, C Wing, 6th Floor, Conference Room 6, Bethesda, MD 20892.  Onsite registration will begin at 8:00a.m.

Agenda: The committee will discuss and finalize the 2013 IACC Strategic Plan Update and discuss committee business, agency updates and issues related to autism spectrum disorder (ASD) research and services activities.

Meeting location: National Institutes of Health

31 Center Drive

Building 31, C Wing, 6th Floor, Conference Room 6

Bethesda, MD 20892

Nearest Metro stop:

Medical Center – Red Line

In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus.  All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit.

Pre-Registration:

The meeting will be open to the public and 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. Please visit the IACC website for access and information about registering.

Public Comment – Deadlines:

Notification of intent to present oral comments: Tuesday, January 7th by 5:00p.m. ET

Submission of written/electronic statement for oral comments: Wednesday, January 8th by 5:00p.m. ET

Submission of written comments: Wednesday, January 8th by 5:00p.m. ET

Remote Access:

The meeting will be remotely accessible by videocast  (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will only be able to listen to the meeting.

Conference Call Access
USA/Canada Phone Number: 888-769-9402 Access code: 4632869

Individuals who participate using this service 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 above at least five days prior to the meeting. If you experience any technical problems with the conference call, please e-mail at helpdeskiacc@gmail.com or call the IACC Technical Support Help Line at 415-652-8023.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

IACC meeting next Tuesday (July 9)

7 Jul

The U.S. Interagency Autism Coordinating Committee (IACC) will meet next week (Tuesday, July 9).

The agenda looks quite interesting. Dr. James Perrin, president of the American Academy of Pediatrics (AAP) and a clinical director of the Autism Speaks Autism Treatment Network (ATN) will speak. Dr. Tim Buie will speak on GI issues and autism. And there will be discussions of comorbid conditions, wandering and more.

The meeting will be videocast and be available via conference call (Dial: 800-369-3170 , Access code: 9936478)

9:00 a.m. Welcome, Roll Call and Approval of Minutes

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

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC
9:05 Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital
9:20 Commentary on Parent-Physician Efforts to Address Wandering

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital
9:30 Panel on Comorbid Conditions in People with Autism
9:30-9:45 Comorbidities Among Patients Served by the AutismTreatment Network

James Perrin, M.D.
Professor of Pediatrics, Harvard Medical School
Director, Center for Child and Adolescent Health Policy
Massachusetts General Hospital
9:45-10:00 Gastrointestinal Disorders in Patients with Autism
Timothy Buie, M.D.
Associate, Department of Pediatrics
Massachusetts General Hospital for Children
10:00-10:15 Catatonia in Autism Spectrum Disorders

Lee Wachtel, M.D.
Medical Director, Neurobehavioral Unit
Kennedy Krieger Institute
10:15-10:30 Immune and Metabolic Conditions in Patients with Autism Population

Richard Frye, M.D., Ph.D.
Director of Autism Research
Arkansas Children’s Hospital Research Institute
Associate Professor of Pediatrics
University of Arkansas for Medical Sciences
College of Medicine
10:30-11:00 Committee and Panel Discussion
11:00 Meeting Report: Environmental Epigenetics Symposium
Held: March 22-23, 2013, UC Davis MIND Institute, Sacramento, California
Sponsors: Autism Speaks, Escher Fund for Autism and UC Davis MIND Institute

Jill Escher
Escher Fund for Autism

Alycia Halladay, Ph.D.
Senior Director, Environmental and Clinical Sciences
Autism Speaks
11:30 Rethinking Nonverbal Autism

Portia Iversen
Parent and Advocate
12:15 p.m. Lunch
1:15 Oral Public Comments Session
1:50 IACC Discussion of Public Comments
2:15 Break
2:30 Panel on Wandering
2:30-2:40 Wandering and Autism: What We Know, What We Need

Wendy Fournier
President and Founding Board Member
National Autism Association
2:40-2:50 IACC Activities to Address Wandering

Alison Tepper Singer, M.B.A.
President
Autism Science Foundation
Member, IACC
2:50-3:10 The Amber Alert Program

Robert Lowery
Executive Director, Missing Children Division
National Center for Missing and Exploited Children
Jeff Slowikowski
Associate Administrator, Office of Juvenile Justice and Delinquency Prevention
U.S. Department of Justice
3:10-3:30 Committee and Panel Discussion
3:30 Tips for Early Care and Education Providers

Shantel Meek, M.S.
Policy Advisor, Early Childhood Development
Administration for Children and Families
3:40 Science Update

Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC
4:00 IACC Business
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC

4:00-4:15 DSM-5 Planning Group Update

Geraldine Dawson Ph.D.
Professor of Psychiatry and Behavioral Sciences, Duke University
Chair, IACC DSM-5 Planning Group
4:15-5:00 OARC and IACC Business Update and Discussion
Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH
Executive Secretary, IACC
5:00-5:30 Round Robin and Open Committee Discussion
5:30 Adjournment

—
By Matt Carey

note: I serve as a public member to the IACC but all comments and opinions expressed here and elsewhere are my own.

IACC meeting Agenda for 9 April, 2013

9 Apr

Tomorrow is a meeting of the U.S. Interagency Autism Coordinating Committee. Full information is on her IACC website. This includes the agenda.

9:00 AM Welcome and Roll Call    
Thomas Insel, M.D.   
Director, National Institute of Mental Health (NIMH) and Chair, IACC   
Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH and Executive Secretary, IACC   

9:05  Update from Administration for Children and Families   
Linda Smith
Deputy Assistant Secretary and Inter-Departmental Liaison for Early  Childhood Development Administration for Children and Families (ACF)   

9:15 Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011-2012     
Stephen Blumberg, Ph.D. 
Acting Associate Director for Science Division of Health Interview Statistics National Center for Health Statistics   Centers for Disease Control and Prevention (CDC)     
Michael Kogan, Ph.D 
Director, Office of Epidemiology and Research   Health Resources and Services Administration (HRSA)

9:45  Project SEARCH at the National Institutes of Health (NIH)   
Maureen Gormley, M.P.H., M.A., R.N.  
Chief Operating Officer, NIH Clinical Center 

10:15  Break 

10:30  Panel on Minimally Verbal Children with Autism    

10:30  NIH Autism Centers of Excellence Update 

Alice Kau, Ph.D.
Program Director, Autism Spectrum Disorders Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) 

10:40  NIH Workshop on Nonverbal School-Aged Children with Autism 

Connie Kasari, Ph.D. 
Professor of Psychological Studies in Education and Psychiatry University of California, Los Angeles 
Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program Boston University 

10:55 Communication Growth in Minimally Verbal Children with Autism 
Connie Kasari, Ph.D.
Professor of Psychological Studies in Education and Psychiatry University of California, Los Angeles  

11:20 Minimally Verbal ASD: From Basic Mechanisms to Innovative Interventions 
Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program Boston University 

11:45 Q&A with Committee 

12:00  Autism NOW Website 
Katherine Cargill-Willis
Program Specialist Administration on Intellectual and Developmental Disabilities (AIDD) Administration for Community Living (ACL)   

Amy Goodman, Kevin Wenzel, and Karen Wolf-Branigin  
The Arc

12:20 PM Lunch 

1:00  Oral Public Comments Session 

1:30  IACC Member Discussion of Public Comments  

2:00   IACC Business     

2:00 Science Update       
Thomas Insel, M.D.    
Director, National Institute of Mental Health (NIMH) and Chair, IACC     

2:10 Introductory Comments and OARC/IACC Update 
Thomas Insel, M.D.    
Director, NIMH and Chair, IACC    
Susan Daniels, Ph.D.   
Acting Director, Office of Autism Research Coordination, NIMH and  Executive Secretary, IACC 

2:25 Update from Subcommittee for Basic and Translational Research  

Question 1 Planning Group 
DSM-5 Planning Group   

2:45 Update from Subcommittee for Services Research and Policy 

3:00 Break 

3:15 Committee Discussion     

5:20  Wrap-Up 

5:30  Adjournment

I am extremely pleased to see this focus on minimally verbal autistics in this meeting. This is a focus area I and others have asked for.

—
By Matt Carey

Note: I serve as a public member to the IACC but my comments here and elsewhere are my own.

IACC Recommends Public and Private Insurance Coverage of Early Behavioral Interventions for Children with Autism

8 Apr

The U.S. Interagency Autism Coordinating Committee (IACC) sent a letter recently to Kathleen Sebelius, the Secretary of Health and Human Services calling for public and private health insurance coverage for behavioral interventions for autistic children. The letter and the press release are below:

IACC Recommends Public and Private Insurance Coverage of Early Behavioral Interventions for Children with Autism (PDF – 79 KB)

Today the Interagency Autism Coordinating Committee (IACC) submitted a letter to the Secretary of Health and Human Services, Kathleen Sebelius, recommending public and private insurance coverage of early behavioral interventions for children with autism spectrum disorder (ASD). The Committee developed the recommendations following discussions in early 2013 concerning the Affordable Care Act (ACA). While the IACC heard about the gains made toward meeting the needs of people with ASD through the first steps of the implementation of the Act, concerns were also voiced by the community about remaining gaps, including the lack of access to insurance coverage for early behavioral interventions.

As a part of the implementation of the ACA, States are in the process of defining “essential health benefits” (EHB) that will be covered by private insurers. The IACC was particularly concerned about the benefit for “mental health and substance use disorder services, including behavioral health treatment.” Under this benefit, the Committee considered it to be critically important that the benchmark plans in all States provide the robust and consistent coverage for behavioral therapy that has been shown to be effective for children with ASD.

Currently, only approximately half of States have decided to offer private insurance plans that provide autism-specific behavioral interventions, while others are still in the process of making decisions. Even less is known about what type of coverage for early behavioral interventions may be available through Medicaid, a publicly-funded insurance program that is the single largest funder of medical care for children with ASD.

In light of increasing evidence for the effectiveness of early interventions, including a recent study funded by the Health Resources and Services Administration (HRSA)1 and a Cochrane analysis,2 the IACC drafted a letter to Secretary Sebelius recommending support for coverage of and broad access to early behavioral interventions for children diagnosed with ASD, including children covered under both private and publicly-funded (Medicaid) health plans. The IACC also recommended a Federal minimum standard of autism coverage through the essential health benefits for all health plans offered in the individual and small group markets and that minimum coverage include early intervention for children with ASD at a level of intensity indicated by the evidence.

The IACC considers access to early behavioral interventions for those with autism to be a critically important issue and hopes that this letter will provide helpful information to Secretary Sebelius as well as to the larger community as they consider the best ways to address the needs of all people with disabilities. The Committee believes that broadening access to evidence-based early behavioral interventions has the potential to improve outcomes and the quality of life for people with autism and their families.

References
1 Maglione MA, Gans D, Das L, Timbie J, Kasari C; Technical Expert Panel; HRSA Autism Intervention Research – Behavioral (AIR-B) Network. Nonmedical interventions for children with ASD: recommended guidelines and further research needs. Pediatrics. 2012 Nov;130 Suppl 2:S169-78. [PMID: 23118248]

2 Reichow B, Barton EE, Boyd BA, Hume K. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2012 Oct 17. [PMID: 23076956]

***

The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.

—
By Matt Carey

note: I serve as a public representative to the IACC but all comments here and elsewhere are my own.

IACC Meeting next Tuesday (April 9)

4 Apr

The U.S. Interagency Autism Coordinating Committee will meet next Tuesday, April 9, at the NIH campus in Bethesda Maryland. The agenda reads

The committee will discuss autism related issues and will host activities in recognition of Autism Awareness Month and World Autism Awareness Day.

The meeting is to be held at

The National Institute of Mental Health
The Neuroscience Center
6001 Executive Boulevard, Conference Rooms C and D
Rockville, Maryland 20852

The meeting will also be webcast live.

More information can be found at the IACC website.

—
By Matt Carey

note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

IACC to hear about Minnesota Somali Project, Optimal Outcomes and National Children’s Study

28 Jan

The U.S. Interagency Autism Coordinating Committee (IACC) meets tomorrow (January 29th). The agenda is listed online and below.

The committee and the public will hear updates on the Minnesota Somali Autism Project–a project to explore whether there is a high prevalence of autism in the Minnesota Somali community and, if so, why. The autism prevalence in Puerto Rico ranks high for the U.S., even though the territory population is largely Hispanic and Hispanics typically have a low reported autism prevalence in the U.S.. An update on the autism prevalence in Puerto Rico will be presented. A recent study on individuals who achieved what the authors refer to as “optimal outcomes” will be discussed. Also, a study of health outcomes in children with autism and their families will be presented.

The IACC will also discuss plans for moving forward. There are many areas I would like to see some focus applied to. But three I have proposed and hope to discuss are (1) the needs specific to children and adults with autism and intellectual disability and/or communication difficulty and (2) difficulties in delivery of medical services to autistics and (3) autism and epilepsy. It is too late for comments to be included in the record for this meeting, but if you have opinions of where autism research and policy should be moving towards, send the IACC comments at IACCPublicInquiries@mail.nih.gov.

Here is tomorrow’s agenda:

10:00 a.m. Welcome, Roll Call and Approval of Minutes
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:05 Science Update
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:20 Round Robin

10:50 Centers for Disease Control and Prevention (CDC) Minnesota Somali Project Update
Amy Hewitt, Ph.D.
Director, Research and Training Center on Community Living
University of Minnesota

Mashalyn Yeargin-Allsopp, M.D.
Chief, Developmental Disabilities Branch, National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Centers for Disease Control and Prevention

11:20 Update on Autism Prevalence in Puerto Rico
Jose Cordero, M.D.
Dean, Graduate School of Public Health
University of Puerto Rico
Member, IACC

11:35 Lunch

1:00 p.m. Oral Public Comments

1:30 Optimal Outcomes in Individuals with a History of Autism
Deborah Fein, Ph.D.
University of Connecticut
Board of Trustees Distinguished Professor Department of Psychology
Department of Pediatrics

2:00 Study of Health Outcomes in Children with Autism and their Families
Anjali Jain, M.D.
The Lewin Group

Craig Newschaffer, Ph.D.
AJ Drexel Autism Institute, Drexel University

2:30 National Children’s Study Update
Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
Member, IACC

2:50 Break

3:05 IACC Business
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan A. Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination
Executive Secretary, IACC

•2012 Strategic Plan Update
•2013 Strategic Plan Update Process
•2012 Summary of Advances
•2011-2012 Portfolio Analysis
•Other Activities

4:15 Public Comments Discussion Period

4:45 Wrap-Up

5:00 Adjournment

—
By Matt Carey

Note: I serve as a public member to the IACC. However, all comments and opinions, here and elsewhere are my own.
Note: I made small edits after I published this article to include the third area I would like to see get greater focus.

IACC Full Committee Meeting Tuesday, January 29, 2013

24 Jan

There will be a meeting of the U.S. Interagency Autism Coordinating Committee (IACC) next Tuesday. Full details can be found on the IACC website. The meeting will be from 10am to 5pm.

The agenda is:

The committee will discuss updates on ASD research and services activities, discuss plans for the 2012 IACC Summary of Advances and plans for the update of the IACC Strategic Plan for ASD Research.

And will be held at:

William H. Natcher Conference Center
45 Center Drive, Conference Rooms E1/E2
Bethesda, Maryland 20892
Map and Directions</blockquote>

One can attend in person or watch via videocast

One can submit comments. The deadline to be included for this meeting is today:

Notification of intent to present oral comments: January 24th by 5:00 p.m. Eastern
Submission of written/electronic statement for oral comments: January 25th by 5:00 p.m. Eastern
Submission of written comments: January 24th by 5:00 p.m. Eastern

One can always submit written comments (IACCPublicInquiries@mail.nih.gov), they will be held for the next meeting.

The meeting website has a long “please note”:

Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. Eastern on Thursday, January 24, 2013, with their request to present oral comments at the meeting. Interested individuals and representatives of organizations must submit a written/electronic copy of the oral presentation/statement including a brief description of the organization represented by 5:00 p.m. Eastern on Friday, January 25, 2013. 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 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 5:00 p.m. Eastern on Thursday, January 24, 2013. The comments 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 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 meeting will be open to the public through a conference call phone number and webcast live on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the webcast or conference call, please send an e-mail to IACCHelpDesk2012@gmail.com or by phone at (301) 339-3840.

Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 5 days prior to the meeting.

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).

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.

Additional NIH campus visitor information is available at: http://www.nih.gov/about/visitor/index.htm

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.

Schedule is subject to change.

—
By Matt Carey

Note: I serve as a public member to the IACC, but I do not represent the IACC here or anywhere else. All comments and opinions are my own.

IACC Press Release: Statement of the Interagency Autism Coordinating Committee (IACC) Related to the Sandy Hook Tragedy

21 Dec

The U.S. Interagency Autism Coordinating Commitee (IACC) has posted a Statement Related to the Sandy Hook Tragedy. I have copied the statement and the rest of that web page below:

Statement of the Interagency Autism Coordinating Committee (IACC) Related to the Sandy Hook Tragedy

The Interagency Autism Coordinating Committee, an independent Federal advisory committee that provides advice to the U.S. Department of Health and Human Services on activities related to autism spectrum disorder (ASD), has issued the following statement regarding the tragedy that took place at Sandy Hook Elementary School in Newtown, Connecticut on December 13, 2012:

Here is the statement:

The events of December 14 in Newtown, Connecticut shocked and saddened people worldwide. All of the members of the IACC express our deepest sympathy and support for the families and community affected by these terrible killings. Some news reports suggested the gunman had Asperger syndrome, an autism spectrum disorder (ASD). Because this tragic event has shaken so many, the IACC wants to ensure that continued speculation about the gunman’s diagnosis does not hurt others in the community. Our committee has collectively prepared this statement to address public concerns and questions about the implied association between autism and extreme violence directed at others.

There is no scientific evidence linking ASD with homicides or other violent crimes. In fact, studies of court records suggest that people with autism are less likely to engage in criminal behavior of any kind compared with the general population, and people with Asperger syndrome, specifically, are not convicted of crimes at higher rates than the general population (Ghaziuddin et al., 1991, Mouridsen et al., 2008, Mouridsen, 2012).[1, 2, 3]

Officials do not yet know whether the person associated with the school shooting in Newtown had been diagnosed with Asperger syndrome, another developmental or mental disorder or disability, or multiple disorders. We may never know what undiagnosed conditions or motivations he may have had. Whatever his diagnosis, this individual’s acts are not representative of people with developmental or mental disorders or disabilities, very few of whom are violent or dangerous towards others.

While a rare event, the impact of violence is a tragedy for all of those involved. These devastating events remind us of the importance of providing the best care and support for those challenged by developmental or mental disorders or disabilities. We do know that individuals with autism spectrum disorders, including Asperger syndrome, do better with the appropriate medical, educational, mental health and community supports in place. The IACC strongly supports the development and expansion of those services and believes that more research is needed to identify predictors of violence, and to develop appropriate prevention and treatment strategies.

References
1 Ghaziuddin M, et al. Brief Report: Violence in Asperger Syndrome, A Critique. J Autism Dev Disorders. 1991 Sep; 21(3): 349-54. [PMID 1938780]

2 Mouridsen SE, et al. Pervasive Developmental Disorders and Criminal Behavior: A Case Control Study. Int J Offender Ther Comp Criminol. 2008 Apr; 52 (2): 196. [PMID 17615427]

3 Mouridsen SE. Current status of research on autism spectrum disorders and offending. Research in Autism Spectrum Disorders. 2012 Jan-Mar; 6 (1): 79-86.

Resources
If you are concerned about violence or possible symptoms of mental illness in a family member or yourself, contact a health care provider or your local health department. You can also contact the treatment referral line at the Substance Abuse and Mental Health Services Administration (SAMHSA). Call 1-800-662-HELP (4357) or visit the online treatment locator.

Information about coping with stress after a traumatic event can be found at

•Substance Abuse and Mental Health Services Administration (SAMHSA) “Coping with Violence and Traumatic Events”

•National Institute of Mental Health (NIMH) “Children and Violence”
•Centers for Disease Control and Prevention (CDC) “Coping with Stress”
•American Academy of Pediatrics (AAP) “Talking to Children About Disasters”
•American Red Cross “Recovering Emotionally”
•American Red Cross “Helping Children Cope with Disaster” (PDF – 472 KB)
Other Resources
•American Psychological Association
•American Psychiatric Association
•American Academy of Child and Adolescent Psychiatry

Here is a statement about what the IACC is:

The Interagency Autism Coordinating Committee is an independent Federal advisory committee that provides advice to the U.S. Department of Health and Human Services on activities related to autism spectrum disorder (ASD). Members of the committee include representatives of Federal agencies involved in ASD research and services, as well as members of the public who are on the autism spectrum, parents of children with ASD, representatives of leading research, service and advocacy organizations, and other community stakeholders. The IACC develops and annually updates a Strategic Plan to guide ASD research efforts and publishes an annual Summary of Advances in ASD Research and the ASD Research Portfolio Analysis Report. More information about the membership and activities of the IACC is available at: http://iacc.hhs.gov/.

Please note that the IACC is an independent Federal advisory committee, and as such, the views expressed by the IACC do not represent the views of the U.S. Department of Health and Human Services or other Federal agencies and Departments.

IACC conference call this week

21 Dec

Earlier this week the IACC met via conference call to finalize the Strategic Plan updates for 2012.  A 2-day workshop on the updates had to be cancelled due to hurricane Sandy.  Below are just a few fragments of discussions that occurred during the meeting.

Drafts of the updates can be found on the IACC’s website. And final versions will be posted as soon as they are completed.

The meeting started with a discussion of whether the IACC should issue a statement following the speculation that the shooter at Newtown Connecticut was autistic.  Such a statement has been prepared and will be released shortly.

One public comment noted the lack of support for a family trying to navigate the extra hurdles a family with disabilities faced following Sandy.  Some of the federal members noted that there are resources specifically focused on vulnerable populations. I am trying to get more specifics on that now.

Each question of the Plan was discussed and modified, sometimes with word smithing and sometimes with more extensive edits.  The question on treatments in particular had a great deal of discussion and edits were prepared real-time by OARC staff. There is a good team supporting IACC and it was impressive to see them continue to keep making notes on the discussion while preparing significant edits for approval during the call.

One question that came up during the discussions was that of immigrant populations and autism prevalence. There has been much discussion of the Somali-American community and autism and Idil Abdul spoke of the concerns of that community. Two studies had come out in then past year, one from Sweden and one from the Netherlands, suggesting higher autism prevalence for immigrant communities in those countries.  This highlights the fact that we don’t have autism prevalence data for most of the world.  To my knowledge there are a few from northern Africa, possibly none from sub-Saharan Africa and South America, little or none from south Asia.

The UK adult autism prevalence study was discussed and the fact that little is known about the adult population in the U.S..

Obviously much more was discussed in the whole day meeting.  Much of that can be found in the draft documents linked to above.

—
By Matt Carey

Note: I serve as a public member to the IACC but my comments here and elsewhere are my own.

Interagency Autism Coordinating Committee’s (IACC) Conference Call

11 Dec

The U.S. Interagency Autism Coordinating Committee (IACC) will be holding their final meeting of 2012 next week via conference call. Details, including how to submit comments, are below.

Interagency Autism Coordinating Committee’s (IACC) Conference Call
 
Please join us for a conference call of the IACC Full Committee on Tuesday, December 18, 2012 from 10:00a.m. to 4:00p.m. ET. The committee will review and approve the final 2012 update of the IACC Strategic Plan for Autism Spectrum Disorder Research.
 
The committee will be meeting via conference call, but oral public comments may be made in person at the location specified below and will be webcast live so that the committee members and members of the public can view the session. The other portions of the meeting will be conducted via conference call only.
 
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 PM ET 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 PM ET, 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 conference call and in-person oral public comment session will be open to the public. The phone number and access code for the call is provided below.  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. 
 
Conference Call Access
USA/Canada Phone Number: 800-369-1881
Access code: 9976437
 
Individuals who participate using this service 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 above prior to the meeting.  If you experience any technical problems with the conference call, please e-mail iacchelpdesk2012@gmail.com or call 301-339-3840 for assistance.
 
Please visit the IACC Events page for the latest information about the meeting, remote access information, the agenda and information about other upcoming IACC events.
 
Contact Person for this meeting is:
Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

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