IACC Meeting Webcast to Include ABA Presentation
(Managing Editor's Note: Why do the "experts on autism" require a tutorial on a basic therapy for autism that 99% of parents learn about in early intervention? And did we miss the presentations by Dr. Tim Buie of MGH on GI issues? Or Dr. Boyd Haley on Toxicology?)
IACC Full Committee Meeting
Date: Friday, October 23, 2009
Time: 9:00 a.m. to 5:00 p.m. ET
Agenda: Includes a presentation by a panel of parents of children with autism, a presentation on Applied Behavioral Analysis by Dr. Tony Charman, and discussion of recommendations for updating the IACC Strategic Plan for Autism Spectrum Disorders Research.
Place: The National Institutes of Health, Main Campus
The William H. Natcher Conference Center
45 Center Drive
Conference Rooms E1/E2
Bethesda, MD 20892
Webcast Live: http://videocast.nih.gov/
Conference Call: USA/Canada Phone Number: 888-455-2920
International Phone Number: 212-287-1838
Access code: 3132846
Registration: http://www.acclaroresearch.com/oarc/10-23-09_IACC
Access: Metro accessible - Medical Center Metro Station
Contact Person: Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20892-9669
Phone: 301-443-6040
E-mail: [email protected]
Please Note: Any member of the public interested in presenting oral comments to the Committee(s) must notify the Contact Person listed on this notice at least 10 days in advance of the meeting. Interested individuals and representatives of organizations must submit a letter of intent, a brief description of the organization represented, and a written/electronic copy of the oral presentation/statement at least 24 hours in advance of the meeting. A printed/ electronic copy of the comment/statement provided by the deadline is required prior to the oral presentation; the document will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in order of the date and time when their request to speak is received, along with the required written statement submitted at least 24 hours in advance of the meeting.
In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the statement to the Contact Person listed on this notice at least 24 hours in advance of the meeting. The statement should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. All written statements received by the deadline for both oral and written public comment will be provided to the IACC for their consideration.
The meeting will be open to the public through a conference call phone number and webcast live on the Internet. Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request at least 7 days prior to the meeting.
NIH has instituted stringent security procedures for entrance onto the NIH campus. All visitors must enter through the NIH Gateway Center. This center combines visitor parking, non-commercial vehicle inspection and visitor ID processing, all in one location. The NIH will process all visitors in vehicles or as pedestrians. You will be asked to submit to a vehicle or personal inspection and will be asked to state the purpose of your visit. Visitors over 15 years of age must provide a form of government-issued ID such as a driver's license or passport. All visitors should be prepared to have their personal belongings inspected and to go through metal detection inspection.
When driving to NIH, plan some extra time to get through the security checkpoints. Be aware that visitor parking lots on the NIH campus can fill up quickly. The NIH campus is also accessible via the metro Red Line, Medical Center Station. The Natcher Conference Center is a 5-minute walk from the Medical Center Metro Station.
For additional visitor information, visit the the NIH Visitor's webpage.
As a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.
Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. Meeting schedule subject to change.
To access the webcast live on the Internet the following computer capabilities are required: A) Internet Explorer 5.0 or later, Netscape Navigator 6.0 or later or Mozilla Firefox 1.0 or later; B) Windows® 2000, XP Home, XP Pro, 2003 Server or Vista; C) Stable 56k, cable modem, ISDN, DSL or better Internet connection; D) Minimum of Pentium 400 with 256 MB of RAM (Recommended); E) Java Virtual Machine enabled (Recommended)
Information about the IACC and a registration link for this meeting are available on the IACC website.
"Why does Tom Insel insist on making IACC as unaccessible as possible?"
Because he's a bigot that won't even ride in an elevator with a Spectrum kid & his mom.
"Why does IACC make it so difficult for the autism community to particpate in a committee that they created?"
Because they are really bigots, too.
Dr Collins wants ASD parents to be tolerant & accepting of bigotry, but isn't willing to return the courtesy of being tolerant and accepting of the characteristics of autism or the people who live with it every day.
I'm not even going to ask "What's wrong with this picture?"
But I will ask "How it is that these people became and are allowed to remain the face of a government committee?" Their incompetence has been adequately demonstrated.
If there's one thing besides autism that just isn't going away...it's incompetence.
Posted by: GrammaKnows | October 23, 2009 at 01:26 AM
I still think that we need to seriously explore the promise held be Neurofeedback which works via operand conditioning to help the brain of an autistic child to self regulate.
Posted by: Hanno W. Kirk | October 22, 2009 at 11:29 PM
Oh my... and what kind of ABA? Holy moley. There are soooooo many different flavours. Who gets to choose which type? Who gets to speak for the RDI, Floortime, SonRise folks? All the different more traditional ABA methods? We started with Lovaas, then no-no-prompt, then VB/NET/RDI. My personal favourite (as to what we did) was VB/NET/RDI.
But, I am a big proponent to whatever for whomever. If someone loves SonRise, great. Floortime, fantastic. But, if they present some Lovaas garbage I'll vomit.
Okay, so I do have ONE bias as to ABA. LOL.
Posted by: Henderson | October 22, 2009 at 10:51 PM
Has anyone seen, or knows the procedure to look at the comments submitted during the strategic planning process. I for one, would like to see the tally for comments, asking for Insel's resignation. And I would like to see the tally for vax vs unvaccinated requests.
Posted by: michael framson | October 22, 2009 at 10:13 PM
At least this is a beginning: the impression given by some of the comments of the board members is that they have no idea what autism is even like;educating people, particularly people with the power to make changes,is always a good first step.
Who knows ,maybe one of them will get intrigued enough to start googling things like mitochondria disorder/autism or vaccine induced encephalitis.
(..Welcome to the dark side:)...)
I also note that a science blog feels that the physician who made a statement that appered to indicate that she was offended at the idea of autistic children being described as having ill health is being misunderstood.
What a perfect opportunity for her to set the record straight.
Perhaps what she meant to say was "it sickens me that autistic children are not being treated for very real physical health issues??"
Ever hopeful that with enough information and research it becomes very hard for anyone to ignore the truth.
And we all know that with rates of children with autistic disorders continuing to climb,the truth is coming out one way or another.Who would want to go down in history as having defended giving thalidomide to pregnant mothers?
Or having turned a blind eye to an autism epidemic without trying to seriously search for answers?
If you choose to take a position on a board like this, you must also be willing to have the courage to persue the hard and unpopular questions.
Posted by: hera | October 22, 2009 at 07:40 PM
This reminds me a bit of the myth of Persephone. Accepting and legitimizing IACC for this would be like taking pomegranate seeds from the prince of the underworld. We might get a few months of summer out of it but the rest would be hell.
Posted by: Gatogorra | October 22, 2009 at 04:42 PM
Any idea who the autism parents are who will be "allowed" to present? I'm just wondering whether it will be at all worth my time to tune in to this one. Last one made me so mad, I may just wait for the transcript unless someone who knows what they're talking about gets to explain things to the committee like the 3 year olds they are.
Posted by: Garbo | October 22, 2009 at 02:49 PM
ABA -- common ground -- something everyone can agree on. Now IACC can say that they really care, and want to learn, and are reaching out to our community, because they listened to a presentation on ABA. Wow, aren't we all impressed. They're hoping this will make us forget about vaccine injury, mitochondrial disorder, mercury, aluminum, IBD, myelin antibodies, inflammation of the brain, what your toddler was like before that last batch of vaccines...
Posted by: Twyla | October 22, 2009 at 11:10 AM
I think it might be easier to get a visa to North Korea that to speak at an IACC meeting.
The above procedural requirements are both insane and embrassing to any country that calls itself a democracy. I know of no other non- terrorism committees that adhere to such stringent requirements. Why does Tom Insel insist on making IACC as unaccessible as possible? Why does IACC make it so difficult for the autism community to particpate in a committee that they created?
Other FACA committees operate within the legal guidelines without imposing such Soviet era bureaucratic restrictions on the public.
And Dr. Collins wonders why there is so much mistrust? Collins urged the autism community to "work toegther" better. Well good luck to the families who do not submit their comments, in writing, 10 days in advance. Forget about wanting to speak more than 3 MINUTES. 2 people who belong to the same organization may NOT speak. And guess what the meeting could end at any time and you could still be shut out even after submitting all your required paperwork. Ask a couple of Moms and their autistic sons who travelled from Califonia about that.
There is such an onerous burden on families who want to participate yet parents have to sit and listen to hours of inanities from out of touch IACC committee members.
Real experts in GI disease have not been allowed to speak to this panel. However, uninformed angry doctors like Yvette Janvier have announced to the world that she is "offended" by the dicussion of gut disease among ASD children because she has decided it doesn't exist. Where is Dr. Janvier's time limit for speaking?
I love how only 1 representative of any autism org is allowed to speak. Meanwhile IACC has only allowed 2 autism org representatives out of the 19 people on the committee. Autism Speaks, the National Autism Association, Defeat Autism Now are all huge orgs with 5,000+ families in each. They are not allowed to take part in this committee- but Insel's neighbor is?
Dr. Collins need to take a close look at democracy in action here at IACC before he tells families to take a step back and work with IACC. IF IACC doesn't want families at the table - or for more than 3 minutes- this is clearly impossible.
Posted by: Katie Wright | October 22, 2009 at 10:00 AM