Tanners Dad's Blog
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Interagency Autism Coordinating Committee Meeting 11/21/2008: Parents perspective
- Posted on 11.22.08
I attended the Interagency Autism Coordinating Committee on Nov. 21 via webinar. This is some of the highlights real time that I was feeling and my general emotional impression of the meeting. The members of the committee are to be praised for there diligence. Some of there actions though are not in the best interest of our children and we need to let our politicians know. Please be vocal.
I am glad I did this once in my life. It is really emotionally draining. It is sad that we still have such a long way to go in our fight. Thank you all for your kind comments.
Keep up the good fight.. Say a prayer for our children and the parents fighting for them.
Thank you AOA and Safe Minds.
Safe Minds is almost the last to speak. I hope we get a entire post on all she is talking about. I am in tears just thinking about how those Mainstream Doctors are just ignoring her testimony. 3:05 PM Central Time.
"Crisis level response is needed." "Epidemic denial cannot continue." Jim Moody 2:55 Central Time
New Autism Warriors Code: "When the lifeguard is not paying attention, I must Act."
This Karen Walker is awesome. I don't know how people could listen to this and then do nothing. I just don't understand.
I wish I had a recording of the last parent. She told a very very emotional story about her son almost drowning. She task the group to task over marginalizing our position.
2:45 PM TACA and Age of Autism mentioned for them to reference!
Question to the service providers... What aspect you would want changed?
Answers:
Training for staff... Help reduce turnover
Coordination...Easier access for parents
Leadership
Finding Employers
Expectations and outcomes
"This is not acceptable" we are not funding
"Being on SSI means you are living on poverty"
Have and Have not society. "Most of adults with developmental disabilities are not working"
Medicaid officials: It is up to states to choose waiver programs "We are making a vast effort."
"Keep on doing the same thing... Definition of insanity." People with disabilities have waited long enough. Isolated, lonely, poor.. Hear the voice of frustration. 2:15 PM Central Time
It is just embarrassing how far behind the curve Illinois is compared to some of the other states with active waiver programs.
They are now talking about lack of professionals who are out there to deal with the adult population. Why is that... If the Autism epidemic is just a shift in diagnosis then those professionals should be out there. Right? 1PM Central Time.
Cathy Pratt from the ASA gave a passionate talk on using our money for practical research. She she go on the wall of Heros. 12:45 PM Central Time.
Now they are talking about RFI Request for Information. Lee Grossman Sub Chair.
137 responses
368 questions/issues raised
75 research topics
86 focused on Healthcare/Treatment (#1 topic)
Of course the last issue was watered down and glossed over. Lyn must be frustrated.
LYN ROCKS: “These data as well as subsequent research indicate that the link between autism and vaccines is unsupported by the research literature” and Lyn is challenging it saying it’s not an accurate statement. She said she’d be more than happy to provide research studies that show there is a link.
Tom Insel just said “it’s a risk to go there” unless they go into discussing some of studies. There will always be “fundamental disagreement” on the studies, etc….
And I keep thinking….The fricking CAA (along with the colloquy and history) *DIRECTS* them to do this research *regardless* of what has already been done!!!
We have a new addition to the wall of shame...
Lawler, Cindy, Ph.D.
Scientific Program Director
Cellular, Organs and Systems Pathobiology Branch
Division of Extramural Research and Training
National Institute of Environmental Health Sciences
National Institutes of Health
Research Triangle Park, NC 27709
I am now to ill to type out some of her quotes.
"Vaccines have no place in this report" Dr Insel.In reference to some undeclared body or group asking for it not to be included. The establishment is doing everything to water the wording down. This is the place to set objectives. "I think this is a bullseye no matter what." Dr. Insel 11:43 AM Central time.
Lyn Redwood is a Goddess. She is going head to head with the powers that be. She voiced how three of her submissions were not even presented for discussion. They are not talking about vaccines and sub-populations.
Lyn pulled out "Congress has asked for..."
"Remember this is the section on what we need" (11:30 AM Central Time)
Now the establishment is doing their best to downplay the debate. There are other committees that are set up to address these issues. Dr. Insel three options original language, public comment language, or detailed comment. Let's Vote.
Dr.Insel "I don't want to spend the time..." The Chair is pushing to gloss over again... Lets put it in at another area.
back pedaling... Now the establishment is saying "Even though I voted for it..."
Poor Lyn. She just got slammed by Dr. Insel. He went off on studies that he is privi to that the public is not aware about how important heritability is. I think he may have tipped his hand to the next go round. They are going to introduce studies that say how ASD are injerited. "Can I suggest we move on." "the easiest thing is to vote on it" "Ok we will go back to the original language" These quotes from Dr. Insel. at 11:28 AM. Again Poor Lyn deleting all her/our additions.
Parental age more important than medical exposures. Dr Insel "Medical exposures... Someone explain.. thalidomide". 11:15 AM Central Time. I am sure this will be brushed under the carpet. "I was not sure what a medical exposure is..." List deleted at 11:20 AM.
I believe the Paula who is on the spectrum presented some great comments. I think it is sad that only one person on the spectrum is represented. I also think she made some fantastic points about services and considering ASDs long term effects. It seems the doctors want to focus everything on conception, genetics, to age 2 or 3.
"This maybe my own ignorance" "Is autism and allergy related" Comment by attendee..."
I almost flipped when I heard this as well!!! I believe the comment was by Jim Battey, Director of the National Institute on Deafness and Other Communication Disorders.
So let me get this right....one of autism's major deficit areas is *communication* and this guy has NEVER heard of the association between autism and allergies??
Tom Insel needed to explain that to him.
Unbelievable.
The *ethics* guest speaker is getting ready to speak. This otta be interesting....
Posted by: Kelli Ann Davis -- Ethics Presentation is Next | November 21, 2008 at 11:37 AM
Human and Animal studies just got cut. It seems that anything that the biomedical community would want gets cut. Anything that goes back to genetics gets approved. We need more than six people from our community.
I am very very angry now... They are debating the number of research projects. 4, 10 or 25. The comment "Unless there is a good argument to have 10 or 20." So they revert back to 4 and blow off parents. I will give you thousands and thousands of good arguments to have more than 4 Scientifically Rigorous research projects. 10:20 AM Central Time.
I wish that $5 mil $10 mil and $40 million were numbers they were using with urgency towards specific treatments instead of biobanks. 10:15 AM Central Time
There is a a pattern emerging. Let's delete these now... we will add it later. When they get to the later they say... Didn't we talk about this earlier. Section 1, 2 or 4.... I am suggesting we add it but lets decide where...
"We may deal with it later..." You go Dr. Chairman
"This maybe my own ignorance" "Is autism and allergy related" Comment by attendee... That is why we are asking you to fund the studies. I wish I knew which PHD was saying these things. 9:55 AM Central Time
VICTORY... This line was added due to public comment (not sure of the exact wording it was on and off the screen very quickly): An Evaluation of differences of children with ASD and environmental exposures. Score one for the children. 9:45 AM Central Time.
Kind of scary how nice they are treating Lyn Redwood from Safeminds. You are doing a great job you can just feel the political influence the parents are now having on the proceeding. I just pray that it is not lip service. Fight for every word lyn. We do not have another 20 years to waste.
"who would have thought" one attendee talking about Nicotine and Lung cancer. How about using that with some of the issues surrounding autism. I am sorry I am getting a little cynical.
"first objective I hope nobody is listening on the phone line" ha ha ha "we could just throw it out the window". It is always interesting what is said when people on break and they forget the mic is still on.
Comment from one of the attendees "Hour and half on section one. Wow." then you hear laughter. I am amazed by the lack of urgency.
"Conductive active screening prevalence studied in a number of US locations and use a variety of sampling approaches of adults born before 1987 and compare with prevalence of teenagers after 1987 using the same diagnostic criteria and assess whether adult phenotypes differ from teenage phenotypes. Estimated cost $6,000,000"
Again with the stroke of a pen... We refuse to look at something that has been requested since 1982. Add another 10 years to the timeframe before the establishment joins the real world.
8:30 AM central time: They are debating the word "appear" going on 15 minutes. Now he just remembers that he should have people introduce themselves... I am not sure I can last too long listening and not being able to say anything. Now a vote to go back to the original... It reminds me of the old guys at Lions club debating the price of baked beans at the fish fry:)
Related causes: Community, Environment, Health, Human Rights
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