Monday, March 26, 2007

Guest Blogger/Tim Kasemodel --Another National Tragedy: Self Protection at the CDC

Tim and Laura Kasemodel are an exceptional couple who live in Minnesota. I have had the pleasure of knowing the Kazemodel family for a few years, sharing many advocacy stories.
At any time there are bills introduced in Minnesota that might impact the autism community, you can be sure to find Tim and Laura at the capital. I would wager to bet that there are very few lawmakers who have not met the Kazemodel family, and I am sure Minnesotans would be hard-pressed to find them missing a chance to testify on behalf of our kids.
Tim and Laura are incredible autism advocates, but more than that, they are incredible friends. With pleasure, please here's one of my favorites by Tim:
Another National Tragedy: Self Protection at the CDC
A Unique Viewpoint

On February 22, 2006, a bi-partisan letter was sent by Congressional leaders in the House and Senate to David Schwartz, Director of the National Institute of Environmental Health Sciences. The letter from Senator Joseph Lieberman and others informs Mr. Schwartz of pending legislation that would order a new look at the connection between mercury containing vaccines and autism.

In 2004, the Institute of Medicine released a report rejecting a connection between the ethyl mercury in thimerosal containing vaccines and autism. The letter to the NIEHS mentioned that for many others, the issue remains unresolved. So why do so many legislators, parents, physicians and researchers disagree? Consider this comparison between two large government agencies: the Centers for Disease Control and the National Aeronautics and Space Administration.

The CDC and NASA have much in common. Both are large multi layered bureaucratic agencies. They are strong symbols of national pride, and both are well funded by the U.S. taxpayer. The directors of each program are appointed, not elected. They also once shared the enviable position of the oversight of their own safety programs. Both have since been stripped of this self oversight.

For a more detailed similarity, let us start with NASA. In the wee hours of darkness the morning of January 28, 1986, NASA officials lobbied hard for the launch of the Space Shuttle Challenger. There had already been several delays of the launch and NASA was concerned public confidence and support for the program was waning. Another delay in the launch would damage public opinion. Other factors included economic considerations, political pressures, and scheduling backlogs. President Reagan also wanted to be able to mention the successful launch of the shuttle in his State of the Union Address that evening. For several hours, engineers at the firm that had designed the o-rings for the solid rocket boosters refused to sign off on the OK to launch, because tests of the boosters had never been performed below 40°F. They believed strongly that the o-rings would crack and fail at the 27°F temperature forecast for lift off, however, they could not prove that it was unsafe to launch at lower temperatures.

Rather than being concerned about the proof of safety, NASA officials pressed the upper management of the engineering firm. The data presented to them showed no correlation between temperature and the blow-by gases which had eroded the O-rings in previous missions. According to testimony, the firm’s senior executive finally turned to the Engineering Vice President and said, "Take off your engineering hat and put on your management hat." The upper management of the engineering firm by-passed the engineers and decided to approve the boosters for launch despite the fact that the predicted launch temperature was outside of their operational specifications.
(see
http://ethics.tamu.edu/ethics/shuttle/shuttle1.htm)
We all know that NASA’s disregard for safety and the engineers’ decision to change hats ended in explosive disaster that day. When causes for this tragedy were looked at, NASA initially tried to hide the fact that the o-rings were a concern. After a lengthy investigation NASA finally came clean, putting the protection of their astronauts first, and protection of their pride last. They were able to take care of the problem and resume further shuttle missions.

The CDC has a very similar story to tell. In 1999, the FDA finally added up the mercury burden from the ethyl mercury based preservative thimerosal in the childhood vaccine schedule. They were concerned enough to ask, along with the American Academy of Pediatrics, that the CDC recommend the removal of thimerosal from vaccines as soon as possible. Parents were shocked to find that there was mercury in children’s vaccines, with totals averaging 250 micrograms by age two. Soon parents, physicians and researchers began to raise the reasonable concern that the mercury in vaccines may have been responsible for the meteoric rise in the rate of autism and other neurological disorders. The CDC has continued to deny any possible link and declared that there is no proof. The fact is, just as with the o-rings on the space shuttle, proper safety testing was never done on the ethyl mercury in thimerosal. There have been over a thousand studies and reports in the last seventy years indicating the problems with thimerosal, though none were done to determine a safe dose level if injected.

Just as with NASA, the CDC was careful not to disclose all that they knew. In June of 2000, CDC researcher Thomas Verstraeten reported on a Vaccine Safety Datalink analysis of thimerosal-containing vaccines and neurodevelopmental outcomes. He initially showed statistically significant relationships between the mercury exposures and outcomes for autism, along with the entire category of neurodevelopmental delays and a number of other disorders.

With a high rate of relative risk of autism staring him in the face, Dr Verstraeten altered data criteria many times but found “it just won’t go away”. Dr. Walter Orenstein, the acting director of the CDC’s National Immunization program, had gone so far as to declare discussions on this early data to be confidential and embargoed. Keeping public faith in the national vaccine program was paramount. They were concerned that vaccination rates would drop if people believed the mercury in vaccines could cause autism and other disorders. The study data was finally manipulated until it showed no plausible link to autism.
(see
http://www.cdc.gov/nip/news/simptrans072005.htm)

In 2004, the CDC asked the Institute of Medicine to review the available studies to determine if a link between Thimerosal and neurological disorders was plausible. Like NASA, the IOM listened to many researchers explain how ethyl mercury could be causing an epidemic of autism and other disorders among children. The review committee critiqued and discounted nearly all of those biological studies, saying none of them proved thimerosal caused autism or other developmental disorders. The committee based the bulk of its conclusions on five epidemiological studies conducted by the CDC and European counterparts. Epidemiological studies cannot be used to prove or disprove a link, only to suggest plausibility. Regardless, the IOM made with a statement that vaccines were not linked to the rise in autism, and stated that research into the link should be discontinued.

As a result of this action, the CDC has convinced the public to ignore its own explosive disaster. By the time thimerosal was removed, the national rate of autism skyrocketed from 1 in 10,000 to 1 in 150. The rate of children using special education services with the diagnosis of autism in Minnesota in 2006 is now 1 in 109. NASA’s mistake took a millisecond; the CDC’s mistake lasted over a decade. NASA lost 7 brave astronauts. The CDC has lost half a million children.

In these examples the two agencies shared common traits. Concern over the image of their programs seems to have priority over common sense. Testing that considered the actual conditions of use were not done, so assumptions were made about the safety of what turned out to be critical components of their programs. Authority figures had ignored the pleas of researchers or engineers reporting on the consequences of those assumptions. In the end, it appears that decisions made by a few people had affected the entire nation in ways they could not have imagined.

Since the 2004 IOM report, several important publicly and privately funded studies have been published which show a strong link between ethyl mercury exposure and neurological disorders like autism. These studies continue to be ignored by those who defend the use of mercury in vaccines. Researchers now report a decline in new cases of autism and speech disorders in direct correlation with the removal of thimerosal.

Ironically, the CDC is once again recommending a flu vaccine, ninety percent of which contains mercury, be given annually to children 5 and under. It is time for CDC officials to take off their management hats, put on their common sense and science hats, and take a long, hard look at the newest information. It is time to come clean, put the protection of the public first, and put the protection of their pride last.

The CDC should be recommending mercury free vaccines for everyone, at every age. It is possible in almost every situation, and it is common sense.

Tim Kasemodel

Tuesday, March 20, 2007

Guest Blogger: Anne Dachel- The Really Big Lie About Autism

One of the things I wanted to do with this blog was to use it as a way to feature some of the best advocates, researchers, writers, and friends I know- as guests on my site.

I like to give credit where credit is due. We've got some outstanding parent advocates in the world of autism, and I am giving today's space to Anne Dachel.

Background:
I first "met" Anne when there was a news story about my son and I in the newspaper a few years ago. On the day the article hit the news stands, I came home and there was a message on my voice mail at home from this lady in Wisconsin. Wow! Anne had been tracking news stories on autism and had called me all the way from Chippewa Falls, Wisconsin. As I sat down to my computer an hour later, there was also a personal e-mail from her. I knew I had to call her. I did, and the rest is history. Anne and I have been talking and writing ever since.

Anne wrote this piece back in August 2006, and its a few months old, but I felt it was so outstanding I wanted to give it space on this blog for anyone who has never read it.


originally pubished by Op-Ed News
August 21, 2006 at 16:09:48

This commentary is about something I've come to call, "the really big lie," which is surely based on the theory that the masses are more willing to believe totally illogical, absurd propaganda, than a small little lie. I'm talking about the claim by the medical community, health officials, educators, and a vast parade of reporters, that the epidemic in kids with autism and related disorders overwhelming our schools, is the result of "greater awareness" and "better diagnosing."

I've been living with the really big lie for years but by now I am totally dumbstruck by the fact that it's still believed. It's not a lie as far as everyone who repeats it. To be fair, while it's a lie for many, it's a fallacy, medical myth, or just wishful thinking for others. It's a crazy way to rationalize a health care disaster, but it works! I see it everyday in the press, usually backed up by quotes from a CDC official or a doctor. I've rarely, if ever, heard anyone in the mainstream media challenge people who make this pronouncement. I'm constantly pointing out that the explosion in special needs kids in our school can't be explained away so simply, but no one seems to notice.

Although I have no proof of my belief, I'm inclined to think that the really big lie was started by some nameless individual deep within the recesses of the Centers for Disease Control and Prevention in Atlanta, being CDC officials never seem to tire of repeating the really big lie.

When faced with the skyrocketing increase in autism from one in 10,000 children, to one in every 166, including one in every 80 males, in just twenty years, coupled with the knowledge that this happened at the very same time that the CDC dramatically increased the number of mercury-containing vaccines on the childhood immunization schedule, CDC officials had to be desperate. They never thought to add up the cumulative mercury totals with each new shot on the schedule and they had mandated each vaccine. The blame would fall squarely on their shoulders. The CDC's response has been complete denial; after all if there was no real increase in disorders, everyone would be off the hook.

Thus was born the really big lie: There really aren't more children with autism. They've always been out there, we just didn't identify the problem as autism. Like with all big lies, there must be proof to back it up and the CDC has given us lots of experts, studies, and findings of their own to do just that. I can't imagine the CDC getting away with the really big lie if it were used in attempt to explain away an epidemic of any disease affecting children, but because of the varied symptoms of the autism spectrum disorders, it seems to have worked for autism.

Since my son is almost 20, I've lived with the really big lie almost since its inception. In fact, I was probably among the first to hear it. This gives me a unique perspective and likely caused me to be a bit more skeptical about the really big lie than most people. When John was three, his talking and interacting with people began to regress. It was so subtle that it's hard to remember when he first wasn't the alert, energetic little toddler he once was. Nobody seemed all that alarmed about it but me. I enrolled him in a speech therapy class at the university which helped a little, but no one could explain why this was happening. I enrolled John in school at five and the next four years were one long struggle that I'd like to not even think about. No one understood him and his autistic behaviors were viewed as signs of immaturity, defiance, and anxiety. In the second grade in 1993, John was diagnosed as "possibly autistic" by a psychologist from Minneapolis. I'll never forget how she made the statement that autism was a "rare disorder." She said that it was doubtful that John would ever be able to live independently or hold a job. It was all rather hopeless and I was left pretty much on my own when it came to finding information on autism. So much was said back then about the rareness of the disorder.

We live in a town of 14,000 people and when I read that the autism rate was one in 10,000, I figured that it was unlikely that I would ever find another parent with an autistic child. Although I taught school for eight years before I was married, I had never heard of a student with autism. This of course was all in the days before the invention of the really big lie, when the truth was still discussed about autism affecting only a small number of kids.

After what seemed a very long stay in grade school, where no professionals had any training or experience with handling kids with autism, starting in the fourth grade, I home schooled John. Those were the good years. He learned at his own pace. Being a teacher myself, I designed a curriculum that he could work with. Some things he could do with no help, others were like a hopeless mystery. John took piano, and we were all in 4-H and belonged to a home school social group. We took vacations and John had a paper route, but he was still pretty unresponsive when he was around strangers and he didn't like to go to public places.

When John was fifteen, everything changed. I found a doctor who specialized in developmental disorders. I wanted to learn how to get John to interact more with people. This was when I got the shock of my life. In the eight years since John's original diagnosis at seven-years-old, the rates for kids with autism had exploded. Suddenly, doctors and educators knew about autism. Kids with autism were everywhere. The doctor's assistant even had two autistic sons of her own. In fact, I learned that now there was a whole spectrum of autistic disorders and John's was called Asperger's Syndrome.

I'm pretty sure that this was when I was told the really big lie for the first time---that all of the autistic kids were the result of "greater awareness and better diagnosing," and that autistic children used to just "fall through the cracks" or were labeled with other disorders. It didn't make much sense, but at least I had a lot of company now. John's doctor had us combing through our family tree trying to find our "autistic relatives" that were labeled with something besides autism. This was also when I first heard of the "autism gene" supposedly responsible for this "inherited condition." When I was first told that John had Asperger's Syndrome it was such a rush of relief because I assumed that there would be people to help John and school programs for kids like John that were not available when he was diagnosed eight years earlier. This is when I realized that the really big lie was just that, a really big lie. There was a huge disconnect between the really big lie and the reality of services.

If these kids had been always been around, what had the schools done with them? I mean, it's impossible to ignore a child with autism, they must have had something for them. I was one of the original members of an Asperger's Syndrome parent group at a local hospital and I met so many people just like me struggling with children and nowhere to turn to. When I first started hearing about the rise in autism cases, I knew immediately that John and others like him were just the tip of a very large iceberg hidden underwater for the moment but not for long. The one thing that scares me more than anything else in life is wondering what will happen to these kids once they are adults if we can't even provide for them in schools as kids.

My son is considered mildly affected with autism now. He is much improved from the hopeless student in the second grade. He is fabulous on a computer, he has his driver's license, he rides horseback and plays the organ and piano. He is great at conversation at home now, but his social skills are still limited in new situations and with strangers. Once he finished school, John became eligible for Social Security disability payments. When my husband took John to apply, the Social Security worker filling out the forms asked, "Why are there all these young people with autism going on disability?"

Evidently, she hadn't yet heard the really big lie, being she was so surprised at all the people with autism. My husband told her to get used to it, there were lots more coming, including many who were severely disabled in need of much more help than John. The reaction of the young Social Security worker could be a sign that we're fast approaching a crisis with the really big lie that threatens to expose it to all. Right now, eighty percent of autistic Americans are under the age of 18. This is another thing nobody seems to think about. What happens when one out of every 166 eighteen-year-olds goes on disability for life with autism?

Years ago, I used to hear projections about the enormous cost to society when the baby boomer generation retired. I don't hear anything about the generation with autism. They won't have pension plans, IRA's, veteran's benefits, or home equity. They will never pay into Social Security, but they will need to live on disability payments for life.I don't know how much longer the really big lie is going to work. Throughout history, there have been many plagues and diseases that have resulted in the deaths of millions, but this will be the first time a society has been left with a generation of disabled young people to care for.

When the American taxpayers realize that their bill for all this "greater awareness and better diagnosing" will be in the trillions, I don't think they're going to buy the really big lie. I suppose government officials will then have to invent a new lie. Only this time it will have to be a really, REALLY big lie and I can hardly wait to see what they come up with.

Anne McElroy Dachel
Chippewa Falls, WI
Mother of a son with autism
Member: A-CHAMP (Advocates for Children's Health Affected by Mercury Poisoning)http://www.a-champ.org

direct link to article on Op-Ed news:
http://www.opednews.com/articles/opedne_anne_mce_060821_the_really_big_lie_a.htm





Monday, March 12, 2007

Autism- A Global Problem- A Time for Action

An Autism Calling

My friend Dave Humphrey has been writing a private blog, chronicling his month-long trip to Thailand, where he is helping to open a Medical Treatment Center for Autism. While many of his posts are private- detailing the outstanding medical evaluations and treatments he is receiving for his own personal health needs while there, he provided an entry that hit me in the gut.

I consider Dave Humphrey a dear friend. Who else would take the time to get his maintenance man to haul a rolling ladder in the lobby of Kirkman Labs, just because my son had an urge to examine the exit sign on the ceiling?

But this isn't just about my friendship with Dave; he is a friend to the entire autism community and an incredible humanitarian. He is a Board member of the Autism Society of America, Autism Research Institute and the Northwest Autism Foundation, co-founder of the Autism Treatment Network, and the owner of Kirkman Labs, just to begin with. Dave and his father shared a life-long friendship, spanning decades, with one of the greatest men in history- Dr. Bernie Rimland.

With his permission, I am circulating Dave Humphrey's heart-felt blog entry. This is an open letter to all of those involved in autism, but especially to all of those researchers and medical professionals who have been, and still are- using precious research dollars on the pretense of looking for answers at our children's expense. It's time to stop the senseless research spending on snipe hunts and begin helping our families. Indeed, it's definitely time to stop the NARAPOIA.

Heartfelt thanks Dave, for this outstanding reality check and call to action.

--Tami Giles
www.AutismRecoveryWA.org


Autism - Global Problem – A Time for Action
David Humphrey
March 7, 2007

Not much in these posts has been about autism.

It is intentional because much of what we are working on this autism treatment center in Asia is embargoed until we are ready to talk about it.

But AUTISM is the reason I am here. It is much of the motivation for getting better and living longer. There is so much to do.

Autism around the world is rarely talked about in the United States. Until recently it really wasn’t talked about at all.

The following is the best information on the number of children facing a life with autism in Asian countries

China 2,500,000
University of Beijing estimate – working with Johns Hopkins to get a better number

India 2,000,000
Reports from parent groups not confirmed by government (number attempted to be verified by AS)

United States 600,000
INCLUDED FOR REFERENCE # - Current estimate of CDC in the US

Indonesia 350,000
Estimated by Health Minister of Indonesia

Japan 300,000
Widely reported to have the highest rate of autism in the world

Philippines 250,000
Estimate by the Autism Society of the Philippines – a reliable source

Vietnam 200,000
Unreliable number

Thailand 180,000
Estimate of the Minister of Mental Health

The numbers don’t mean much until you meet the children and talk to their families. I have done that a lot in the past few years.

What is crushing for families in the US - with pretty good resources - is unbearable in countries were families have very limited resources.

Governments in most of these countries virtually ignore the problems of autism because the just can’t deal with the enormity of the problem. We were in North Korea were their solution is to send children with autism upon the first symptoms to a remote institution where their life expectancy is less than 2 years. Most starve.

Even in 2nd world countries with strong economies - lots of Starbuck’s -- conditions can be horribly bad - I have been in Autism institutions where these children are literally warehoused in shocking conditions.

You are permanently changed from the experience of walking through an institution and seeing 3,000 children with autism - some tethered to their beds lying in fecal matter as a result of chronic diarrhea and untreated medical problems.

It is 1 out of 150 children and growing.

This global problem is not a problem we turn away from.
This global problem is not a problem we turn away from.
This global problem is not a problem we turn away from.

Autism is a global problem that requires global solutions.

Just as AIDS began with treating the wealthy - it became all of our responsibilities to face AIDS as a global epidemic we had to address the poor and neglected.

Today - a person with AIDS in Haiti can get the same treatment with dignity as in downtown San Francisco. The program is run by an American who refused to quit - who had a dream. That was not afraid of his academic reputation - that saw the face of God in the people that were suffering.

(see a very compelling article about what one man did for AIDS in Haiti - http://www.foreignaffairs.org/special/global_health/farmer

Silent Pain of Autism

My good friend Ells Culver - founder of Mercy Corp (the largest international emergency relief agency) went with me to Asia and investigated the devastating effect of autism. He got very involved with the unbelievable neglect he saw.

He told me with great sorrow -that if he were not working for Mercy Corp he would devote his life to autism. He said that the children were raised in silent terror and ignored by those that should be helping. This cause him more pain he said than disaster victims who do get help. He died last year at 78 with most of his work undone.

Because these children are raised in such sorrow – and in silence - it is their collective voice we need to hear. It is defining problem for me. It is a defining choice for those of us involved with allocating resources. It is a defining choice for you.

To say that maybe we need to concentrate on autism in the US is not asking the right questions. It is a convenient way to look away.

They are our children - they are our responsibility. There are no country boundaries with autism.

We are on the Threshold of a Dream - a way to solve the problems of autism

We have the pieces of the puzzle in front of us. We can see the future solution by putting the pieces together- it is up to us. We can have a dramatic effect on the future if we believe and have the tools. If we work together.

The future is to stop autism in the next generation and treat those with autism with respect and dignity regardless of where they live and their finances.

They NEED our angry advocacy.

The dream includes:

PREDICTING AUTISM RISKS IN THE NEWLY BORN
PREVENT IT FROM HAPPENING IN THE HIGH RISK
RECOVERY FROM SYMPTOMS

We have evidence that all of this is possible- actually probable. It needs to be part of public policy not just boutique clinics.

Will this happen if we just focus on expensive solutions for the wealthy in the US? - you know the answer.

There are individual silos of knowledge that can make this happen. It can happen in our lifetimes.

BERNIE GOT IT

I really miss Bernie Rimland. He looked out and always was able to see the future as well as the urgent need for Treatment NOW! His selected guy Steve Edelson also gets it and I am proud to call him my good friend.

Bernie understood global because he understood autism. He never separated the two. He had a cot in the back of his office to take catnaps so he could answer phone calls from around the world. From parents. These were not strangers - he just didn’t know them before they called.

Bernie was not polite in tolerating the clueless - those that he said had “contempt before investigation”. Those that had to ask if this was the right time to begin treatment. “Nonsense! – he would say”… nonsense

Because you see - these same people also do not want to hear about the parents highly significant EVALUATION of their child’s conditions OR the diagnosis of specific medical problems that their child is facing. Treatment is the result of the other two coming first. It is also the other two – evaluation and diagnosis that they do not want to talk about either. These are not options for out children – they are rights.

He repeated said he suffered from NARAPOIA - not paranoia but narapoia, Narapoia he would say is the “false belief someone is trying to help you”

So many are receiving money for autism based on their academic curiosity… with little or no interest in treatment. They actually use their influence to discredit treatment and the courageous parents that are self treating their children because of professional neglect.

Being here in Thailand feels right. It will be part of the solution.

Divine Hand

Ells Culver told me that don’t be concerned with the difficulty or the discouragement in working on the autism problem. He said that a divine hand will guide us toward success.

More later

David Humphrey