AGE OF AUTISM

Why Are Only 39 of 158 C.A.R.E Members Attending the Maloney Smith Autism Briefing?

If you were a member of the Congressional Coalition for Autism Research and Education, wouldn't you make learning about the most recent developments in autism research, policy and treatment a priority? See briefing details HERE.

Please contact C.A.R.E. members from your state and ask them to attend personally or at least send a senior legislative staffer. White House Switchboard: 202-456-1414, Senate Directory Here, Congress Directory by State Here. Friday, July 17 at 9:30 AM 210 Cannon House Office Building, Washington, DC.

C.A.R.E. Member Attended '08 or RSVP '09 

Brady, Robert (PA) 08 
Castle, Michael (DE) 08/09 
Doggett, Lloyd (TX) 08 
Green, Gene (TX) 08 
Kline, John (MN) 08/09 

UPDATE House & Senate RSVP List for Maloney Smith Autism Research Briefing

Below is the updated list of attendees for the Maloney/Smith autism briefing. We've included which members are part of the Coalition for Autism Research & Education. Are your representatives on the list? If not, please call them. White House Switchboard: 202-456-1414, Senate Directory Here, Congress Directory by State Here.

Friday, July 17 at 9:30 AM 210 Cannon House Office Building, Washington, DC.

Rep. Carolyn Maloney (D-NY) and Rep. Christopher Smith (R-NJ) are hosting a special briefing for Members of Congress and their Staff to discuss issues related to autism research and treatment. We hope that you will attend the briefing to learn about the changing dynamics of the autism debate, as you will find many in government and science believe this debate is far from settled.
(Details below the jump.)

PS: Nearly ALL the replies we got today were from CARE members, so keep up the pressure
 
*Member of the Coalition for Autism Research and Education (CARE) – The Congressional Autism Caucus = 19
 
*^Member of the Coalition for Autism Research and Education (CARE) – The Congressional Autism Caucus - who also sent staff to Sept. briefing = 12
 
**Co-Chairs – Coalition for Autism Research and Education (CARE) – The Congressional Autism Caucus

SENATE
Sen. Tom Coburn (R-OK) – Will attend in person (?)
Sen. Orrin Hatch (R-UT) – Will send staff member
*^Sen. Robert Menendez (D-NJ) – Will send staff member

You Can Participate Tomorrow: IACC to Consider Vaccine Research

IACC’s Wednesday, July 15 meeting (Details HERE) will again consider researching vaccines as a cause of autism.  The public meeting will be held from 8:30 to 4:00 in the Polaris Room, Ronald Reagan Building, 1300 Pennsylvania Ave. NW, Washington, DC, 20004. 

Registration for In Person Attendance HERE.   The meeting will also be available by phone, 888-455-2920, access code 3132846.  View via Live WebCast HERE (not live until tomorrow.)

There will be two opportunities for public comment at the meeting, one in the morning following the joint meeting with the National Vaccine Advisory Committee and discussion of vaccine safety and autism, and the other in the afternoon, following discussions of the NIH-funded Autism Centers of Excellence and the National Database for Autism Research.  Updates will also be presented from the Services and Strategic Planning Subcommittees. The full agenda is HERE. 

Those wishing to make public comment should contact Lina Perez, Office of Autism Research Coordination, 301-443 6040,
IACCPublicInquiries@mail.nih.gov, and submit a written copy of your remarks (5 minutes or less) 24 hours prior to the meeting.  Written comments may also be filed.

The first Strategic Plan for Autism Research (HERE), January 26, 2009, contained no research projects addressing vaccines as a cause of autism, in violation of both the letter and spirit of the Combating Autism Act of 2006.  The CAA directed IACC to develop and annually update a strategic plan for autism research, with a sufficient budget, with the mission to find the causes (including environmental) of autism and appropriate treatments. 

Vaccines were the only specific environmental cause singled out in the legislative history. 

Truth in Advertising At Boston Children's?

By Anne Van Rensselaer

"Attacking the Causes of Autism on Many Fronts"-- so reads an ad in the New York Times Magazine (6/21/09), by Children's Hospital Boston. Hooray, because this is exactly what we need right now; diversified research, unaffected by tunnel vision shaped by any narrow field of interest. 

But wait -- it goes on for a full page trumpeting gene research, and mentioning its "377-bed comprehensive center for pediatric and adolescent health care" (implying beds occupied by children being treated for autism spectrum disorders?), and quotes Dr. Charles Nelson, research director of Children's Hospital  Boston's division of developmental medicine: "Our goal is to detect reliable risk markers for autism spectrum disorders in the first year of life, and ultimately use what we find to develop new methods for early screening and diagnosis."

As if: nailing as large a group of genetic markers as possible will do some good for the already mountainous tidal wave of children on the spectrum. 

Chronic Seizures and Immune System

You might want to check David Kirby's Autism One Presentation (HERE) for more about the microglial cells mentioned in this article. Read the full article at SCIENCE DAILY.

ScienceDaily (July 7, 2009) — Chronic seizures caused by traumatic head injuries may result from chemicals released by the brain's immune system attempting to repair the injured site, according to a study led by the University of Colorado at Boulder.

The findings could help prevent one of the most common forms of adult epilepsy, called acquired epilepsy, which is often found in people who have suffered a brain injury or infection, according to CU-Boulder psychology and neuroscience Professor Daniel Barth, the study's chief author.

For decades researchers have focused on neurons as the culprits in seizures, which can be characterized as debilitating "electrical storms" in the brain.

However, recent research has shown that micro-glial cells may play a major role in seizures. Researchers have found that glial cells, which are supportive cells that also constitute a major part of the brain's immune system, cluster within areas in the brain when a severe brain injury has occurred.

FREE Autism Recovery Seminar at Indiana Wesleyan U.

Managing Editor's Note:  "Hoosier" friend in autism treatment? Why our sponsor NAA and their regional chapters, of course. Check out NW Indiana.

When: Saturday, July 25, 2009
Where: Indiana Wesleyan University, 8415 Georgia Street, Merrillville, IN  46410
Time: 10am - 4pm
Cost: FREE!

The Northwest Indiana Chapter of the National Autism Association HERE recognizes that during economic hard times so many parents are not able to attend conferences to get the information that can greatly impact their child's life.

That is why we are bringing the information to our local community by organizing an Autism Recovery Seminar featuring Dr. Phillip Demio, Angela Woodward and Julie Obradovic.  Dr. Demio will be discussing the 3 D's of Autism (Diets, Digestion, Detox), Angela will be sharing her personal story of  recovering her son from autism and Julie will giving us all a lesson on how to dismantle the "studies" disproving the autism-vaccine link.

If you live in the Chicagoland area, consider spending the day with us and take your education to the next level.

For more information, please visit http://northwestindianaautism.com.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Thimerosal and Autism Rates: A Minnesota Perspective

By Tim Kasemodel

A while ago my wife Laura and I were interviewed by a reporter about our son’s medical treatment for gastrointestinal issues. During our interview, we were asked a question that Laura refers to as a “loaded” question.  While we were discussing our thoughts on vaccines and their contribution to our son’s condition, the reporter asked how we felt about people saying “…mercury is no longer in vaccines and the rates of autism are still going up?”   By asking the question they way she did, she “loaded” it with the implication that all vaccines no longer contained mercury in any form.  This question should have been restated as “How do you feel about people saying that the amount of mercury in vaccines has been reduced and children are still qualifying for autism services at a rate of approximately 1 in 150 children”?

When I questioned who told her mercury was out of vaccines, she qualified her question by saying, “except the flu shot” and left it at that.  I can only suspect that she was once told something like this:

“Since 2001, all routinely recommended vaccines (except for the flu vaccine) currently being made for administration to young children in the U.S. contain no thimerosal or only trace amounts.”  

A quick read of this statement might lead someone to that mercury had been removed from all vaccines (except flu of course) in 2001.  But this does not say that mercury containing vaccines were no longer being used, it only states that mercury reduced versions of the basic vaccine schedule given to children age 0 to 6 were currently being made and had become available as a choice.  Note that the qualifier “young children” also leaves out booster shots, and some brands of meningococcal and tetanus vaccines recommended for children over age six still contain preservative level mercury TODAY.

Autism May Be Linked to Mom's Autoimmune Disease

From Forbes.com (HERE.)

Possible causes of disorder should now include celiac disease, study suggests

MONDAY, July 6 (HealthDay News) -- Children of mothers who have autoimmune diseases such as type 1 diabetes, rheumatoid arthritis and celiac disease have up to a three times greater risk for autism, a new study finds.

Although the association between autism and a maternal history of type 1 diabetes and rheumatoid arthritis had been found in earlier research, the researchers behind the new study say that theirs is the first to find a link between autism and celiac disease. People with celiac disease cannot tolerate gluten, a protein in wheat, rye and barley.

"This finding reinforces the suggestion that autoimmune processes are connected somehow with the cause of autism and autism spectrum disorder," said researcher William W. Eaton, chairman of the Department of Mental Health at the Bloomberg School of Public Health at Johns Hopkins University. "This finding is on the pathway of finding the cause of autism."

 

Autism and Gene Research. Who Benefits?

Managing Editor's Note: This is a thoughtful post on the heels of Eric London's departure from Autism Speaks. 

By Teresa Conrick

I am no gene expert though I did take Genetics in high school and again learned much in college and even more while getting my Masters in Science and Education.  I thought it was fascinating - recessive genes, dominant genes, punnett squares and who could forget the father of it all, Gregor Mendel?
 
Now I wonder what Gregor would think of all of this research on autism and genes and more importantly what is the purpose?  To help Gregor out, I took a Google trip backwards year by year to see what we have learned from the research, the data and the comments from researchers. Since I have a daughter with severe autism and no family members who have autism, I am interested in how the heck genes are involved and who actually benefits from. this type of research.  Fasten your seatbelts as genetic studies can be very bumpy!
 
Let's go back to the start -- but where is the start?  Using my trusty google, I put "autism gene research study" in and after much hunting, it looked like 1997 would be a good place to start.  Why then, you might ask and that would be a good question as apparently the cases were increasing and somebody or some group thought it was time to find out why, but why genes? So here in David Letterman style, let's look at those top autism gene studies over the years and see how far we have come and what we have learned:
 
1997-"Researchers discover first autism-susceptibility gene": (HERE)

"The discovery should speed the search for additional genes that increase susceptibility to autism and enhance understanding of this complex disorder. It could eventually result in more precise diagnosis and possibly better treatments." "This is just one of at least three to five genes whose interactions result in autism," says Ed Cook, MD, associate professor of psychiatry and pediatrics at the University of Chicago and lead author of the report."
 
Now why is a professor of psychiatry and pediatrics looking into genes?

Eric London Resigns from Autism Speaks

Managing Editor's Note: Dr. Eric London (founder of NAAR) has left Autism Speaks to join Autism Science Foundation, with Dr. Paul Offit and Alison Singer, also an Autism Speaks alum. Their stated goal is to conduct autism research with the exclusion of investigating vaccinations, as they are certain there is no correlation.  I'll send a T-shirt to the first reader who can tell us what's in the photo and why. (Kevin D. just won!)

By Katie Wright

Autism has been the most humbling experience of my life. I was wrong about so many things for so long.  Despite his nightmarish adverse reactions, I wanted, so badly, to believe that vaccines had nothing to do with Christian’s autism. It took two years of non stop reading, talking to hundreds of parents and traveling all over the country in search of a doctor who could identify, never mind treat, my son’s chronic medical problems, for me to painfully admit to myself I was wrong. In admitting I was wrong I had to let go of my fantasy that doctors know best, the CDC had this under control and all the right research was being done.

I could continue on in a state of denial, comforting myself, or I could dig deeper in all this ugliness. The choice was easy because my son was so sick and even top quality behavioral interventions were failing Christian. If Christian were mildly affected who knows how I would have reacted.

Eric London resigned from Autism Speaks yesterday. Everyone knows I do not speak for the organization (!), but I think I can safely say this is for the best. Despite being in the field of autism research for over a decade London has never doubted himself or his resolute belief that he knows vaccines never trigger autism. Such dogmatic rigidity no longer has a place at AS, especially in the face of the obvious exponential growth of ASD and heterogeneous nature of this disease. No one parent can, or should, attempt to speak for all.