August 3, 2005

Autism and Immune Dysfunction

CHILDREN WITH AUTISM HAVE DISTINCTLY DIFFERENT IMMUNE SYSTEM REACTIONS COMPARED TO TYPICAL CHILDREN
Immunologists from UC Davis M.I.N.D. Institute find clear biological component to perplexing childhood neurological disorder
May 5, 2005


(BOSTON, Mass.) – A new study by researchers at the University of California, Davis, M.I.N.D. Institute and the NIEHS Center for Children’s Environmental Health demonstrate that children with autism have different immune system responses than children who do not have the disorder. This is important evidence that autism, currently defined primarily by distinct behaviors, may potentially be defined by distinct biologic changes as well.

The study was released at the 4th International Meeting for Autism Research (IMFAR) – a meeting of autism scientists started by Cure Autism Now, the UC Davis M.I.N.D. Institute and the National Alliance for Autism Research to accelerate knowledge of this increasingly common and perplexing disorder. It is estimated that autism now affects 1 in every 166 children.

“Understanding the biology of autism is crucial to developing better ways to diagnose and treat it,” said Judy Van de Water, associate professor of rheumatology, allergy and clinical immunology at the UC Davis School of Medicine and the UC Davis M.I.N.D. Institute. “While impaired communication and social skills are the hallmarks of the disorder, there has not yet been strong scientific evidence that the immune system is implicated as well. We now need to design carefully controlled studies that tell us even more about the way in which a dysfunctional immune system may or may not play a role in the disorder itself.”

Van de Water, along with co-investigator of the study Paul Ashwood, assistant professor of medical microbiology and immunology at the UC Davis M.I.N.D. Institute, isolated immune cells from blood samples taken from 30 children with autism and 26 typically developing children aged between two and five years of age. The cells from both groups were then exposed to bacterial and viral agents that usually provoke T-cells, B cells and macrophages – primary players in the immune system.

Of the agents tested in the study - tetanus toxoid, lippopolysaccharide derived from E. coli cell walls, a plant lectin known as PHA, and a preparation of the measles, mumps and rubella vaccine antigens - the researchers found clear differences in cellular responses between patients and controls following exposure to the bacterial agents and PHA.

In response to bacteria, the researchers saw lower levels of protein molecules called cytokines in the group with autism. Cytokines function as mediators of the immune response, carrying messages between B, T and other immune cells. They also are known to be capable of having profound effects on the central nervous system, including sleep and the fever response. Immune system responses to PHA, in contrast, produced more varied cytokine levels: Higher levels of certain cytokines and lower levels of others.

According to Van de Water and Ashwood, these studies illustrate that under similar circumstances, the cytokine responses elicited by the T-cells, B-cells, and macrophage cell populations following their activation differs markedly in children with autism compared to age-matched children in the general population. Cytokines are known to affect mood and behavior, and while their specific role in the development of autism remains unclear, the potential connection is an intriguing area of research that warrants further investigation.

"This study is part of a larger effort to learn how changes in immune system response may make some children more susceptible to the harmful effects of environmental agents," said Kenneth Olden, director of the National Institute of Environmental Health Sciences, the federal agency that provided funding for the study. "A better understanding of the connection between altered immune response and autism may lead to significant advances in the early detection, prevention and treatment of this complex neurological disorder."

"We would like to take these findings and explore whether, for example, the cytokine differences are specific to certain subsets of patients with autism, such as those with early onset, or those who exhibit signs of autism later during development," Ashwood said. He added that the logical next step is to look directly at specific cell populations that may be responsible for the diverging responses between patients and controls.

This study was supported by grants from the National Institutes of Environmental Health Sciences, the U.S. Environmental Protection Agency, the UC Davis M.I.N.D. Institute, Ted Lindsay Foundation and Visceral. The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center for research into the causes and treatments of autism, bringing together parents, scientists, clinicians and educators. For further information, go to http://www.ucdmc.ucdavis.edu/mindinstitute.

More in the Investigation Into Inflammatory Bowel Disease and Autism

New Study Shows ‘Compelling Evidence’ of Major Intestinal Immune Disease In Children With Autism
Thoughtful House scientists and collaborators confirm link between autism and new inflammatory bowel disease

Austin, Texas – In a study that provides further clues to understanding the origins of autism, scientists and physicians from Thoughtful House Center for Children in Austin, Texas, supply considerable evidence of a new inflammatory bowel disease in children with autism. The study will be published this month in the European Journal of Gastroenterology and Hepatology at http://thoughtfulhouse.org/pub_06.htm

The team studied 178 children undergoing intestinal investigation for gastrointestinal symptoms such as diarrhea and abdominal pain. More than 140 of these children also had autism, most having regressed after normal early development. The children with autism had an increased rate of swelling of the intestinal lymph glands (lymphoid nodular hyperplasia) – a feature of viral infections and immunodeficiency diseases such as AIDS.

Additionally, the children with autism experienced associated inflammation of the intestinal lining, while the children examined in the study without autism did not. The degree of swelling of the intestinal lymph glands was also more severe in children with autism compared with developmentally normal children.

“The results of this study give us additional clues on understanding what is going on in the gut and how it may lead to the brain disorder,” says Dr. Andrew Wakefield, Executive Director of Thoughtful House and the lead author on the paper. “We are working on the idea that what starts in the intestine can be severely disruptive to normal brain development.”
The paper dispels the common misconception that the presence of swollen lymph glands is a normal finding in children.

“When we compare the intestinal findings in children with and without autism in a systematic way, the differences become obvious,” says Dr. Wakefield, “Colonoscopies are not performed on normal children, but on children with gastrointestinal symptoms, so it is not possible to state that this is a normal finding. The findings of this new study add to the clear evidence of a novel and treatable disease of the intestinal immune system in children with developmental disorders.

These are medical diseases which should be treated as such. Children are suffering needlessly and this has got to change.” The presence and severity of the swollen lymph glands was not influenced by exclusion diets that some children were on, suggesting that food allergy or intolerance was not the cause. The fact that these children also have abnormal immune systems and the resemblance of the disease to the intestinal findings in some patients with HIV infection suggests the disease may be associated with a smoldering viral infection.

“This study, in combination with previous work, raises the possibility that treating bowel disease may alleviate some of the symptoms of autism itself,” says Dr. Wakefield. “This is something Thoughtful House will be putting to test in the near future.”

August 2, 2005

No... Seriously. What Epidemic?

Autism from a Teacher's Perspective
Haven De Lay
Sat Jul 16, 2005

The first year I taught was in a school for handicapped children and adults. That was in 1980. In the WHOLE school, there was only one older man with autism.

I went on to teach for fifteen years in public school, mostly inner-city. Special ed children were main-streamed. Those who needed them had aides who came to class. I do not recall any autistic children. We had several, in my opinion who had ADD and ADHD. These were the years from 1982-1997. I taught high school. What I recall is wondering why so many kids couldn't seem to pay attention like we did when we went to school. They had trouble sitting still, and each year there were more kids with behavioral issues. In 1984 I had maybe five kids out of 165 who could not behave or were constantly defiant, but by 1997, I had 40 out of 165 who had serious behavior problems.

Now, in my son's school, which is out in the country, there are many children who are autistic, and sad to say, none of the other parents in my son's class are doing anything to help their children. I think they see me as "way out there."

It's interesting to note, that when my son was first tested there, he was severely "autistic." He had no speech, socialization, etc... He was way below these other kids his age who were diagnosed "autistic." Now, he has far surpassed them. Teachers who were skeptical of what I was doing say, "It's a miracle." And they tell me they wish the other parents would try doing what I have done.

We still have a way to go, but Ethan will be half day in life skills in the fall and a half day in regular kindergarten! He is sitting next to me now, spelling colors. Wow! And the mainstream doctors told me he would NEVER talk!

What Epidemic?

The Age of Autism: What epidemic?
By Dan Olmsted
Aug 1, 2005, 20:28 GMT


WASHINGTON, DC, United States (UPI) -- One of the core questions about autism is whether it actually has increased at startling rates or if it is just better recognized than it used to be.

Officials at the Centers for Disease Control and Prevention in Atlanta say they do not know the answer to that question but are trying to find out. Some medical experts say they think there really has been no upsurge in cases, just more public awareness and broader diagnostic criteria.

Don`t tell that to many parents of autistic children -- parents such as Kendra Pettengill of Roseburg, Ore. She got in touch with UPI`s Age of Autism to explain why she finds that argument not only ridiculous, but downright revolting. Because of the clarity and power of her comments, we decided to run them at length.

In future columns we will print observations by those who think there is no autism upsurge. If you agree, please get in touch.

Here are excerpts from Kendra Pettengill`s comments:

If I hear one more reporter repeating the mantra that part of the autism increase is better diagnostics, I will simply go mad. Anyone who has seen even one child with autism knows that not one of these kids would ever go undiagnosed.

We would have to believe that 10 or 20 years ago a parent would not have demanded to know why their child had regressed after being normal. Would not have demanded to know why they suddenly couldn`t relate to the outside world. Would not have demanded to know why they persistently rocked, flapped their hands, walked on their toes, bit themselves, pulled out their own hair and banged their heads to the point of serious damage. Would not have asked why their child had hundreds of meltdowns every day and could not stand a change in routine.

Would not have questioned why their child would not make eye contact, or screamed if they were touched or held. Would not have questioned why certain textures, foods, sounds, colors sent their children into a wild tailspin for no apparent reason. Would not have questioned why their child only ate three foods, but would chew on wood, sand, or fabrics. Would not question why their child could not speak at 2 years old, or why he could speak and then suddenly stopped abruptly never to speak again.

Parents, it would have to be believed, would not have questioned the litany of medical issues that their child with autism also faces. You would have to believe that schools and teachers also somehow missed all of this and these children managed school and just slipped through the cracks. To believe this you have never seen even a mildly autistic child.

No child with autism ever went undiagnosed.

I have been dealing with this for four years and I am still appalled that this has not been declared a national emergency. What if you announced tonight that 1 in every 150 children were being abducted from their beds every night? Parents would be screaming for the government, the police, somebody to do something. Well that is what is happening, except they are only taking our children`s brains and leaving the body behind.

Many scientists, doctors, teachers and parents know that the increase is real and it is most likely due to an environmental assault such as vaccines. Denial using the "changed diagnostics" line serves no one. It leaves parents like me on the fringe of society, dealing with a devastating disease with no assistance. It abandons a generation of children that could be helped in many ways to become contributing members of society.

I beg anyone who believes it is better diagnostics to find all the 20-, 30-, 40-something people who have autism and were somehow missed in the process of life. They must be out there somewhere -- they went through 12 years of school, possibly college; married; got jobs, and were somehow missed as autistic.

Here is a hint. If they did all those things without being noticed by anyone, they are not autistic. This epidemic now is made up of kids who cannot do any of those things. They have no friends. For the most part they cannot even function in a typical classroom, let alone be missed in one. They can`t comprehend classroom directions; hence even in a typical classroom they need an aide to ensure they gather the proper information and make it through their day.

Every teacher or school person I speak to says with utter fear in their eyes, "Something is very wrong with our children." We are being inundated with autism, ADD, ADHD, speech delays, tics, Tourette`s syndrome, asthma, insulin-dependent diabetes.

I look back on my entire life, and I cannot come up with one single person I knew in grade school, junior high, high school, college, the Air Force or workplaces who exhibited what even I would easily recognize as even mild symptoms of autism, let alone a full-blown case.

There was a blind guy in my school who also rocked a lot, but so does Stevie Wonder. He also had no other symptoms of autism and even wrestled on the varsity team. You would think if it has always been this prevalent that I could recall at least one, if not many, people who would be questionable.

No, none. But then again, I didn`t know anyone with asthma growing up, no children with ADD, ADHD, no kids or classmates with bipolar disorder or Tourette`s either. Come to think of it, I never knew anyone on anti-psychotic medications, nor do I remember prescription cubbies in the classrooms like they have now to monitor and dispense all the inhalers, Ritalin, Risperdal and the like.

The teachers and educators and parents are right. What is wrong with our children that 1 in 6 has a developmental disorder, including speech delays, tics and autism on the severe end of that?

Those claiming better diagnosis instead of a real autism epidemic need to get out of their research clinics, get their noses out of their papers full of numbers that apply to no one in America, get out of their ivory towers, get out of their government offices and look in every small clinic, classroom and parent support group across America.

They will instantly know that not only is there an epidemic, it is actually 100 times worse than the worst-case scenario they could dream up in their worst nightmare. The denial of the numbers does not make them go away and cannot reduce them.

No child with autism has ever gone undiagnosed in any setting, in any decade, in any loving home, caring community or concerned school or classroom. Only in their unrealistic dream worlds can these "experts" continue to deny the millions of afflicted that continue to grow at record pace.

It is time this is stopped. Autism is an epidemic and a national crisis.

E-mail: dolmsted@upi.com

August 1, 2005

A Reason to Believe Parents?

Home Videos Show Autism Starts Later in Some
Birthday Party Videos Show Symptoms of Autism Emerge at Different Times
By Jennifer Warner
WebMD Medical News

Aug. 1, 2005 -- Home videos of children's birthday parties may validate what many parents of autistic children have suspected in retrospect: Children who seemed normal in their first year of life may regress and develop symptoms of autism by their second birthday...

..."Once again, this study provides an important lesson that parents are good reporters on what is happening with their children," says researcher Geraldine Dawson, PhD, director of the University of Washington's Autism Center...


How sad is it that they had to do a study to help to convince doctors that they should believe what parents are telling them about their own children.

Mercury Fillings

So I have not even touched on this yet, but I will get there eventually. I am pretty sure that my fillings played a role in Chandler's Hg contamination as I have a ton of them, and one of them is 'not right' and needs to be replaced.

Just one more thing I wish I'da known about before I had babies.

Mercury Amalgam Label

This is the label for the material dentists use to form an amalgam (aka. "silver filling"). Keep in mind, they put this in your mouth! (Thanks to Freya Koss for forwarding this to me.)

[ed-Click to read more clearly]

Mercury Amalgam Label

The Exquisite Beauty and Value of Our Special Children

To say that Chandler is ‘special’ is an understatement. He seems to have an impact on people like no one else. Just one example:

Everything he does is in the moment and completely genuine, so when he takes an interest in others, they usually take it as a high honor and flattered. Even when he was at his most ‘autistic’ he was a unique blessing in our lives and in those of our family and friends.

It astonishes me that any one ever need present an argument that justifies the existence of people like him.

A Life Worth Living
Chuck Colson
July 29, 2005

My wife, Patty, and I were reminded of just why truth matters when we visited our grandson’s school one afternoon.

Max, as some of you may know, is autistic. As he showed Patty and me around his special-needs school—a story I tell in my new book, The Good Life—I was more than impressed with his eachers. They get a modest wage and work long hours under intense conditions. Autistic kids are demanding and sometimes aggressive. Yet Max’s teachers radiated joy—and I understood why.

Whenever Max comes to visit, everything else goes on hold as I accommodate myself to his schedule and his needs. Learning to meet those needs has been one of the greatest challenges, but also one of my greatest blessings.

But as I stood that day in Max’s classroom, a troubling thought crossed my mind. Why does the public education system spend as much as $65,000 per year to tend kids like Max? He will never go to college and never get a productive job. I couldn’t help but think of Peter Singer, the famous utilitarian philosopher from Princeton, and his argument that societies ought to spend their resources creating the maximum happiness for the greatest number. Singer’s logic would urge us to think about how many starving children could be fed for the cost of Max’s tuition. A chill came over me as I realized just how natural that argument sounds and how dangerous it is.

Singer and others, as a matter of fact, would argue against letting Max come into the world at all. And that argument has infiltrated our culture to an almost unbelievable extent. Ninety percent of couples who learn that their unborn children have a disability end up aborting them. Singer takes that mentality a step further, however, arguing that it’s ethical to kill these children after they’re born.

So the argument becomes—why should efforts like Max’s school, or taking care of very elderly people, continue if it’s in our power to make it unnecessary?

The person who says, “yes,” to Max now and in the future can reason only on the basis of something completely other than a cost-benefit analysis. In a utilitarian accounting, Max’s life is meaningless. Why, then, does he bring so much joy to his family and his teachers? Max’s autism is not a good thing—it’s part of the world’s brokenness—and yet that brokenness has been used to enlarge our capacity to love. Max brings joy into our lives through our sacrifices for him. Max himself knows a joy and wonder that puts me to shame. How does one account for this?

Looking at Max’s life, I have to conclude that the good life is not about the sum total of what we contribute to the world. It’s about loving. Utilitarianism knows nothing of love—as Peter Singer discovered when he found himself lavishing money and care on his Alzheimer’s-stricken mother, something that’s completely against his own philosophy.

Truth matters, and the truth is we are creatures made in the image of a loving God, and life has an ultimate value. So beware of the smooth-talking philosophers in our midst. Their position may seem very appealing and even logical. But it’s a deadly logic.

Lecture at UCLA

I am going to this lecture, anyone wanna come with me???

Cure Autism Now Lecture Series

Cure Autism Now would like to share our progress in the fight to understand autism, and to find effective treatments and a cure. On behalf of Cure Autism Now and the Los Angeles families that have already joined forces, we would like to invite you to:

• Hear about Cure Autism Now’s Science Program from Sophia A. Colamarino, Ph.D., the Science Director for the Cure Autism Now Foundation in her presentation on “Researching the Basic Biology of Autism”
• Learn more about Cure Autism Now programs, initiatives, and Los Angeles chapter-related activities
• Find out how you can be involved with WALK NOW Los Angeles, which will take place in April 2006

Please join us to hear more about Cure Autism Now and the exciting opportunities for you to be involved. Help make a difference in the lives of all people affected by autism.

Date: Wednesday, August 31st, 2005
Time: 7PM-9PM
Where: The Semel Institute for Neuroscience and Human Behavior (“NPI”) on the UCLA Campus, 720 Westwood Plaza, Los Angeles, CA, 90095-8353
Parking: From Wilshire Blvd. go north on Westwood Blvd. Please park in Parking Lot #9 (on the right just after Charles E. Young Drive South) and mention Cure Autism Now to the parking attendant. Parking costs $8. From the parking lot, proceed to the Auditorium at 720 Westwood Plaza.
RSVP: Lisa Hill at lhill@cureautismnow.org or (888) 8-AUTISM x38
Please reference the “Los Angeles Meeting”. There are less than 250 seats available for this event, so please RSVP to reserve yours! If you would like to help with set up at 6:30 PM, please inform Lisa when you RSVP.

About Sophia A. Colamarino, Ph.D.
Sophia A. Colamarino, Ph.D. is the new Science Director for the Cure Autism Now Foundation. Dr. Colamarino comes to Cure Autism Now with exceptional research credentials and an intense and abiding interest in both biology and psychology. She completed two bachelor degrees at Stanford University and received her Ph.D. from the University of California, San Francisco, where she specialized in understanding how the brain develops. She is responsible for guiding Cure Autism Now’s science program in association with Cure Autism Now’s Scientific Advisory Board and Scientific Review Council as well as liaising with the Autism Genetic Resource Exchange (AGRE) Steering Committee. Her vision for Cure Autism Now is to see the organization take a leadership role in advancing what is known about the biology of autism by ultimately defining its cause on a cellular and molecular level so that targeted treatments can be designed.

About Cure Autism Now
Cure Autism Now is a non-profit organization dedicated to promoting and funding autism research and accelerating the pace of scientific progress toward effective treatments and a cure. Cure Autism Now is one of the largest private funders of biomedical research in autism, providing more than $24 million for research grants, outreach and scientific resources since its inception in 1995.

July 30, 2005

File under: Things That Call For A CDC Study

The following is an article on Chelation that was brought to my attention by Skeptico and I thought that it was a great article to address as a parent who is currently chelating their child.

Chelation & Autism
Jul 27, 10:41 AM
by James R. Laidler, M.D.

Can chelation help autism?

Chelation is a legitimate medical therapy for disorders caused by an excess of certain metals. Copper, iron, mercury, arsenic and lead are all metals that can cause toxicity disorders that are successfully treated by chelation. Since about 1985, when the idea that autism might be caused by mercury poisoning first arose, many practitioners and groups have promoted chelation as a treatment for autism.

Clearly, the first question that must be settled is whether autism is caused by mercury (or other metal) toxicity—if it is not, then there is no point in treating it with chelation. Unfortunately, this question has become one of many “hot topics” in autism, with much heat and emotion obscuring the scientific data. The first step, then, is to look past the emotion and political maneuvering and examine the data.

When it was first proposed, the idea that autism might be due to mercury poisoning showed a good deal of promise. After all, mercury is a well-known neurotoxin and, additionally, was used as a preservative (thimerosal) in the vaccines children received. With a degree of biological plausibility and a known exposure, the next step was to look for epidemiological data.


One of the problems that complicates the search for the causes and cures of autism is the assumption that it is a single disorder and that all cases are caused by the same thing. This is in contrast to a disease like AIDS in which all cases are brought on by the HIV virus.

What is diagnosed as ‘Autism’ is actually likely to be more than one physical syndrome. Because Autism is a DSM diagnosis and based solely on behavioral criteria, the diagnosis does not address the different sets of physical anomaly clusters that researchers are finding when they look at the biology of ‘autistic’ patients.

One research group has recently made a distinction between two types of autistic profiles. One, labeled complex autism and occurring in about 30% of autism cases, presents with smaller head size, greater chance of low IQ, lower rate of siblings with the disorder and seems to have close to a 1:1 ratio of occurrence between boys and girls.

The other, essential autism, presents with larger head size, few structural brain abnormalities and has a ratio of 7:1 boys to girls.

This is a huge confounder to any epidemiological study, even a well designed one, that looks at all cases of diagnosed autism with out differentiating between groups with different phenotypes.

In discussing research into the causes of autism (in this case the genetic cause), one of the researchers commented, “…Studies haven’t found anything because they’re looking at a big heterogeneous group — a mishmash of people with different etiologies,” Takahashi said.”

One could postulate that only the larger head size group displays autistic symptoms because of mercury poisoning, as mercury toxicity does not always present with impaired IQ; and because in vitro thimerosal toxicity studies preformed at the University of Kentucky showed that estrogen has a protective effect against, and testosterone exacerbates the damage of, ethlymercury as a neurotoxin.

In light of this new information it seems that a better question than, “is autism is caused by mercury toxicity” which is the question largely being asked in these epidemiological studies, would be, “are cases of mercury toxicity being misdiagnosed as autism”.

The answer to that question cannot be found in a large epidemiological study.

The authors of the the final IOM report on the thimerosal/autism relationship in 2004 stated themselves that the epidemiological research it was relying on to clear thimerosal as a cause of autism would not pick up on a sub-set of the population that was genetically vulnerable to mercury poisoning.

If that is the case, then how much more so to these studies fail to give us meaningful data if the children who may be mercury poisoned are members of two different subsets being confused with one another?

Unfortunately, well-designed studies take a while to complete and publish.


Well designed studies do take time to complete and publish.

This is further delayed that by the fact that health authorities are neither attempting to complete or publish them. Despite years of parents requests, the public health authorities have not yet begun to design, fund or even discuss studying the effects of thimerosal on developing children, nor the safety and effectiveness of chelation on autistic patients.

[Update: I have heard that there are 2 government funded studies getting underway on the effects of thimerosal. I will try to find them and confirm exactly what they are. Still no govenment funded chelation/autism studies.]

Thimerosal was invented in the 1920’s and it’s only safety test was carried out in 1930 on 22 patients with terminal meningococcal meningitis. Patients were followed for several days until their deaths. No long term health problems were noted in the study because the patients had no long term health.

When the FDA was created, thimerosal was grandfathered in and has never been safety tested it to this day despite the fact that it has been implicated in toxic illness every few years going back to 1947.

I will be repeating this point through out my critique of this paper.

This delay left an information vacuum that a number of people immediately began to fill with assertions that autism definitely was or certainly was not caused by the thimerosal in vaccines. This did not make any progress toward settling the question, but instead polarized the issue before the arrival of any real data.

Lurking in the background, undetected in the tumult, were data that could have pointed the way. At least two countries—Canada and Denmark—had removed thimerosal from their vaccines in the 1990’s (Canada 1994, Denmark 1992) and yet had both experienced rises in autism prevalence similar to those in the US and UK.


The findings in the Denmark study have come under serious criticism. When the data of study was reviewed, it was found that the sampling presented fatal flaws. The low incidence of autism during the use of thimerosal can be attributed to the fact that the database that was used only tracked inpatient cases of autism at the time. At the point in time where thimerosal was removed, the database was expanded to include cases that were diagnosed at a large clinic outside of Copenhagen where 20% of the countries autistic patents were diagnosed. At the point in time where thimerosal was no longer used, but the cases of autism seem to have skyrocketed, the database had expanded further to include all cases of autism, inpatient and outpatient, in the country.

The study is further compromised by the fact that several of the coauthors were employed by the Statens Serums Institut, the government owned vaccine manufacturer who would be held liable if it was indeed found that the use of thimerosal in vaccines contributed to autism.

[Update: Kristjan has pointed out here that the Danish health care system and liability laws are different from ours and no such legal liability exists for the Statens Serums Institut. I still wonder what might motivate these researchers to stand buy this study and not protest its poor use. More on that in the comments here, here and here.]

Finally, even if the study were reliable, applying it to the U.S. population as the IOM has done presents problems. Children in Denmark were administered less than half the amount of thimerosal of US children and it was given over a longer period of time.

Further, American children are subject to an autism rate at least 10 times that of Denmark. It seems to me to be like doing a study of Sickle Cell Anemia in Denmark and applying it to the population of Baltimore. Clearly children here have some other intervening factor that increases the threat, be it genetic, environmental or even the thimerosal dosage.

As for Canada, I have seen this mentioned in several places, but I have never seen the actual study. If you have it or know where I can find it, can you please email me so I can look at it? Thanks in advance.

Update: Shannon from British Columbia reports that there is no Canada study or even any Canada data to be studied. She reports that they don't keep track of autism rates and don't offer services. She also reports that thimerosal removal from vaccines was left up to the provinces and that many are still on the shelves. See her comment in the section below for a more detailed explanation.

Additionally, while the childhood vaccines in the US included three (DTP, HiB, HepB) with thimerosal, in the UK, for the past two decades, only the DTP vaccine contained thimerosal. This meant that, despite having a constant thimerosal exposure for nearly twenty years, children in the UK experienced the same rise in autism prevalence.

In 2003, the first study, from Denmark, showed that the prevalence of autism in that country had risen steeply even though thimerosal had been removed from vaccines in the early 1990’s. This study was greeted by howls of outrage from some that advocated the connection between thimerosal/mercury and autism—the authors were roundly disparaged and their integrity and objectivity were impugned. This did not change the fact that the autism prevalence in Denmark has continued to rise, following the same pattern as autism in the US and the UK.

In September 2004, a study from the UK showed no association between thimerosal exposure and autism . At the same time, a review of ten epidemiological studies of autism and thimerosal found that the few studies that found an association between thimerosal exposure and autism had serious methodological flaws. Chief among these flaws was using the Vaccine Adverse Event Reporting System (VAERS) as a source of data.

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database.

Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Since at least 1998 (and possibly earlier), a number of autism advocacy groups have, with all the best intentions, encouraged people to report their autistic children—or autistic children of relatives and friends—to VAERS as injuries from thimerosal-containing vaccines. This has irrevocably tainted the VAERS database with duplicate and spurious reports.


I think that it is clear that the VAERS is a poor source for such studies. The CDC’s Vaccine Safety Datalink is a much better source, but the CDC has blocked it from being reviewed by independent researches despite the fact that congress has directed it to do so and claims that disallowing such access is a violation of federal law. The one team granted access in 2003 was severely limited in what they could do and thus their research effort, although it found a dramatic link, was completely tainted by the process and seems to me somewhat of a false start.

The CDC claims that they welcome research applications, but at last check they had not accepted any.

Testing for mercury

What, then, about the parents who have tested their children and found their mercury levels high? These children may have a legitimate problem with mercury poisoning…if the testing is valid. While laboratory accuracy—and cost—is an issue with many of the “mail-order” labs, a more serious problem is the manner in which the specimen is collected.


Dr. Laidler seems to be saying that contamination during collection and overnight shipping can skew results, but I don’t feel that he has properly addressed the possible process by which mercury would begin to appear in urine samples that had none at the time of excretion.

Many practitioners who advocate chelation routinely use “provoked” or “stimulated” excretion studies. To do this, they administer a dose of a chelating agent (more about them later) and test the urine a few hours later. This practice will routinely and predictably elevate the urine mercury level to several times the “unprovoked” or “unstimulated” level.


What is not mentioned in this discussion of “provoked” excretion studies, is the context in which the study becomes valuable. The working theory in this case is that some autistic children are actually members of a sub-set with a genetic impairment to excrete heavy metals such as mercury. Straight forward blood, urine and hair tests for mercury that would identify mercury toxicity in typical subjects who have been victims of a large mercury exposure would be useless in identifying mercury toxicity in people who have no ability to excrete mercury.

In order to find out if these types of subjects have mercury in their tissue, it must be stimulated. If it is excreted in the urine after the introduction of a chelating agent, then it was present in the body tissue.

Since the normal values listed on the laboratory report are for “unprovoked” specimens, the results will be much higher than normal and can appear alarming.


“Normal values” seem to mean little in these results. When mercury is excreted during a DMSA challenge, it cannot be taken as a true measure of how much mercury is in the tissues. Like clowns coming out of a car, you don’t know how much is in the body until you count all of it when it comes out.

Several factors complicate a getting a true picture of how much is in the body, one being that DMSA binds to lead more readily than to mercury, so if lead is present, the mercury level may be artificially depressed.

Doctors have reported patients excreting up to three and four hundred times the mercury that the baseline showed on the initial challenge.

The only thing that can be said with much certainty is that if you give a chelating agent, and mercury comes out, then it was in there and treatment should continue until it stops being excreted.

The cost of many of the mail-order labs is also a significant concern. A brief survey of some of the bigger mail-order labs revealed that they charge between $175 and $300 for a “panel” of urine metal tests, including mercury. The local hospital lab charges $35 for a urine mercury test.


Being a parent that has paid $300 for such urine metal tests, I am all for lowering the price. However, if I woulda known then what I know now, that the first time I did such a test on my son I would find mercury and lead, and that the chelation we have done as a result would help my son make the progress that he has made, I would happily sign my car over to the lab that delivered me these results.

But that's just me.

[scarcasm alert]I believe a good way to lower the costs of the test in this free market, would be many labs offering this standardized test, and doctors regularly screening children with ASD, ADHD, verbal and developmental delays, and those who have exhibited symptoms of vaccine injury after thimerosal containing vaccines, for mercury poisoning. That might be something that the government could look into.

[Update 2007 - the free market prevails. My son's last urine toxic metals test this month cost $65]

In most cases, the other metals included in the “panel” or of little or no use—there is no research or clinical data that connects some of these other metals to any disorder whatsoever.


I need more information from Dr. Laidler on this point. Does “no clinical data” mean that studies have been done and no connection has been found, or that no studies have been done?

Another questionable practice is the use of fecal mercury levels. The mercury in feces is a combination of ingested mercury (minus the amount that was absorbed) and any mercury excreted into the feces (usually in the bile)—there is no way to truly know how much mercury is being excreted without knowing the amount ingested and the amount absorbed. One thing that is certain, however, is that the fecal mercury level will be higher than the actual amount of excreted mercury, because of the mercury in the food we eat, the water we drink and the air we breathe.


I don’t know any families who have relied on fecal mercury levels in order to make a decision on whether or not to chelate, nor have I read of doctors relying on them. It seems an inaccurate measure of mercury toxicity for all the reasons you mention. Can anyone point me towards a source that recommends relying on it so I can further look into this?

[Update 2007: I have not heard of fecal mercury levels being used in the two years since this was written.]

This brings us (at long last) to chelation.

Chelation—what it is and how it works

Chelation works by using a compound has a stronger attraction (affinity) for mercury than the tissues of the body. Since mercury has a very strong affinity for sulfur, all the effective mercury-chelating agents contain sulfur. This does not mean that any sulfur-containing molecule can act as a chelator, since body tissues also have sulfur-containing components, which are what the mercury binds to. An effective chelator needs to have a higher affinity than body tissues.

This simple fact eliminates some of the compounds that are being touted as chelating agents for mercury. Glutathione, for instance, which has a sulfur-containing amino acid, is not sufficiently greater in its affinity for mercury than the body tissues to be an effective chelator.


The role that glutathione may play in autism is still emerging. Just a few months ago a study was released that found that 80% of autistic test subjects had some degree of glutathione depletion. After reading this I began supplementing over the counter oral l-glutathione and his speech began to progress more rapidly. He went from taking several minutes to put together a simple three word sentence, to spontaneous three and four word sentences in the matter of two months, and a week ago he began pointing things out to me (with his finger), saying, “look, look. Rain”.

I am genuinely interested to know specifics about exactly what it is doing and why such a weak chelator would be so helpful to him. I am looking forward to the question being studied further by federal health authorities.

Another widely used chelating agent, EDTA, not only has little affinity for mercury, but is also not absorbed when taken orally—it must be given intravenously.


There is now a product call Detoxamin that is EDTA in suppository form. Is this well absorbed form? Just curious.

The two agents that are most effective for chelating mercury are 2,3-dimercaptosuccinic acid (DMSA) and 2,3-dimercaptopropane-1-sulfonate (DMPS)
. DMSA has been widely used in the US—primarily for lead poisoning—and has a good safety record.


I am grateful to Dr. Laidler for pointing out that DMSA has a good safety record and is the standard treatment for lead poisoning. I have read many poorly researched reports that claim that all chelation is dangerous and it is quite frustrating.

DMPS has a long history of use in the Soviet Union, but has more toxicity problems. DMPS is popular with some practitioners because it causes a very large rise in mercury excretion, primarily by prompt clearance of kidney mercury stores, making it very useful for “provoked” mercury testing.

DMPS is not approved by the USFDA for any purpose, primarily because it offers no medical advantages over DMSA and is more toxic. Both can be given by mouth, but only DMPS is available in an intravenous form. Given that there is little or no difference in their effectiveness, a practitioner who wants to use DMPS should be viewed with suspicion.


In my experience, this is becoming more generally agreed upon in the autism community, although there are some doctors that have used EDTA and DMPS. I think that the trend seems to be coming back around to the use of DMSA.

The sulfur-containing groups in DMSA (there are two) are mercaptans, relatives of the odorant that is put in natural gas to make it smell bad. In short, it stinks. This can be a problem not only for the child who has to take it, but also for the entire family, as urine that contains DMSA will also have a foul, sulfurous smell. While some manufacturers claim to have overcome the smell “issue”, if the urine doesn’t smell foul, there is no DMSA being excreted and, therefore, no chelation happening.


While it is true that a sulfur odor does present itself, it has never occurred to me that it was a ‘problem’ or even something that a parent might take into account when deciding whether or not to chelate a child with mercury poisoning. Changing diapers more often or airing out the bathroom is little price to pay for a chance to get back your healthy, thriving child.

I did read about one family whose son carried an incredibly strong, unpleasant odor at all times during the first 6 weeks of his chelation. They lived with all the windows open and joked about all the stinky toxins that he was shedding.

They seemed really happy to have his odor problem replace their little boy’s autistic symptoms.

One preparation that deserves comment is transdermal DMSA (or DMPS)—a cream or ointment that is rubbed onto the skin, presumably to chelate mercury. Both DMSA and DMPS are highly water-soluble and do not dissolve well in fat or oil, which means that they most likely won’t be absorbed through intact skin. It is interesting to note that none of the individuals or corporations selling this preparation has—to my knowledge—performed the simple test necessary to prove that it is absorbed. In the absence of this simple bit of data, it must be assumed that it is not absorbed.

Lipoic acid—a sulfur-containing fatty acid—has also been touted as a chelating agent, although its effectiveness has not been well studied. It has the advantage of being considered a “natural” substance, but the few studies that have examined it have found it less effective than DMSA . It is fat-soluble and can potentially cross the skin, but this has not been tested. Its fat-solubility may (or may not) allow it to penetrate the brain tissue better, but this has also not been demonstrated.


Many doctors use this in conjunction with or following DMSA chelation because of its presumed ability to better penetrate into the brain. We have found adding ALA to our son’s chelation accelerated his progress.

Dr. Laidler again notes that ALA has not been tested. I would like to note that parents have been requesting chelation studies be conducted or funded by the national health authorities to no avail.

[Update 2007: We used ALA for a time with Chandler, but it seemed to feed the yeast in his gut and lead to hyperactivity so we did not use it for long. It has fallen out of favor with most DAN docs for this reason.]

A number of naturopathic remedies claim to remove mercury and heavy metals, but this claim is often based on the parent plant’s ability to remove mercury from the environment. As a result, these naturopathic remedies may themselves have a high degree of mercury contamination. At any rate, none of the naturopathic “chelating agents” have been tested to support their claims. In the final evaluation, only DMSA offers the combination of safety and effectiveness that would warrant its use. DMPS is a close second, limited only by higher toxicity.

Safety of chelation

Common less serious side effects of DMSA include nausea, vomiting and diarrhea. Skin rashes have also been reported—these are often erroneously referred to as “mercury rashes” and attributed to the removal of mercury. Regrettably, the same rashes are seen in people who have no mercury toxicity and are merely due to a drug reaction. A rare and unpredictable reaction (and potentially lethal, if not treated promptly) is Stevens-Johnson Syndrome, a severe drug reaction that presents with lesions on the skin and in the mouth and gastrointestinal tract.


My son, like many autistic children with intestinal yeast, can have an increase in hyperactivity while on oral DMSA, so rounds of chelation are spaced out so that a healthy gut can be maintained. Such breaks in chelation also allow for mineral supplementation to assure that the body is not stripped of necessary nutrients during chelation.

No significant adverse drug interactions have been reported with DMSA, but most of the children who received DMSA for lead poisoning were not taking other medications—and most of this experience predates many of the medications used
for autism. Increased zinc and copper excretion has been noticed in animal studies, but this is apparently easily corrected by moderate zinc supplementation. Copper supplementation is generally not needed.

The more serious side effects of DMSA are primarily bone marrow suppression and liver injury. In the thousands of children who received DMSA for lead poisoning, somewhere between 1% and 3% developed either elevated liver enzymes (a sign of liver cell injury), low white blood cell and/or platelet counts (a sign of bone marrow suppression) or both. In all cases, these abnormalities resolved after DMSA was stopped. However, these children were being monitored with frequent blood tests and received treatment for less than three months.

There is a danger that long-term use of DMSA without close monitoring could lead to irreversible bone marrow or liver damage. This has not yet been reported, but is a compelling reason to limit the duration of DMSA therapy and to have blood tests done every one to three months. The safety of DMSA—taken for less than six months—is well-established, but this safety has not been demonstrated over the long-term.


DMSA is available only by prescription and should only be administered under a doctor’s care for just such reasons. Unfortunately, so few doctors are treating autistic patients, for what is ultimately a medical disorder, there are just not enough good doctors to go around.

[UPDATE: Apparently you can get DMSA with out a perscription, which seems odd to me. IMO it should be only used under a doctors care.]

Also... long term studies of chelation should be undertaken by the CDC... but you knew I was going to say that.

Finally, there are as many dosing schedules for DMSA as there are practitioners who make claims about it. As perhaps a ridiculous extreme, one practitioner has asserted that DMSA must be given every two to three hours around the clock! This person also insists that failure to follow this schedule will result in more mercury being deposited in the brain. Fortunately, this is absolutely wrong! Doses as infrequent as once a week have been effective at removing mercury and lead, although at a much slower rate than the recommended dosing schedule of three times a day.


Until the mercury/autism connection is properly studied and the results are treated with honesty and transparency, chelation for children diagnosed with autism will remain to be part science, part guesswork. Yet another reason that the health authorities should do its due diligence and investigate chelation as a treatment for autism related mercury poisoning.

Summary:

[1] Is autism due to mercury?

There is no convincing data supporting a link between mercury or thimerosal and autism. This is not to say that mercury and thimerosal cannot cause autism, just that there is no data to support the connection.


To say that there is "no data to support the connection" is not correct. There is a great deal of data, but the data is not conclusive. It consists of in vetro studies, primate and rodent studies, case studies and small population studies.

Many authors and investigators can still make the point, as Dr. Laidler does, that there is “no convincing data” because the health authorities charged with funding and disseminating such studies (on the scale that people are 'convinced' by) are not doing their job.

Chelation remains one of the most promising medical treatments for what is commonly diagnosed as ‘autism’, yet the government chooses to spend money instead on long term genetic research that will be of no benefit to children who were diagnosed with autism today.

The first large scale research project into chelation for those with autism is just getting underway at the University of Arizona. It is being funded by anonymous private donors.

[2] Mercury testing.

Mercury testing, especially if done with a mail-order lab, can be both misleading and overly expensive. If you truly suspect mercury poisoning, spend $35 for a urine mercury test at your local clinic or hospital—don’t spend up to $300 to get information of questionable accuracy and minimal utility.


I don't think that Dr. Laidler has made his case that the information you get for your $300 is "of questionable accuracy and minimal utility". It was mighty accurate and useful to us.

[3] Chelating agents.

Many of the remedies promoted to remove mercury and other heavy metals are either not effective, not safe or both. Of the available chelating agents for mercury, DMSA offers the best safety and the best effectiveness.

[4] Safety.

Despite its impressive safety record, DMSA is not without side effects. Long-term treatment with DMSA has not been studied (insert comment about how the government should study this-ed) and may result in serious problems. Close medical monitoring is strongly recommended if you decide to use
DMSA therapy on your child.

* * *

Comments
1. Is it not also true that even in the legitimate use of chelation for lead poisoning, there is no expectation of reversing whatever neurological damage has already occurred? I would think this would be another strike against the credibility of chelation for autism.
— Lisa Randall Jul 27, 03:37 PM


It is true that there are no guarantees that getting the mercury out of your child will cure their autistic symptoms, just as there is no guarantee that chemotherapy will cure cancer. Most parents faced with either situation are likely to give their child the chance at recovery even if the odds are not 100%. I do know of two children who did not respond to chelation therapy. Neither child was harmed by it and neither of their mothers regret trying it.

We have no guarantee that tomorrow, the last drop of Hg won't tumble out of our boy and his wonderful progress will come to an end. If it does, we will make yet another one of those course corrections that parents of special kids have to make. But at least we will know that we got him as healthy as we could.

2. The studies that have looked at removal of lead by chelation (that Autism Diva has looked at on pubmed) showed no improvement in IQ or behavior, (or both?)

Brain damage in general is not seen as reversible.


This makes logical sense. But this has not been my experience.

My son called me mommy until he regressed at 18 months in the fall of 2003. In June of 2004 I gave him 300mg of DMSA for his chelation challenge to see if he had mercury toxicity. He was given the dose around 8am and about 6 hours later he called me ‘Mommy’ for the first time in almost a year.

I was in my bedroom cleaning, and he came in and started pulling on my hand. I was trying to finish my task before I went with him to see what he wanted, so I was looking away from him. I thought I heard him say ‘mommy’ so I looked down, and instead of pulling my hand toward the door and looking toward where he wanted me to go, he was looking at my face and called me ‘Mommy’ three more times. I was completely stunned.

At that point I expected that his tests would come back positive for mercury, and they did. There was no question after that whether or not we would try chelation on him.

To respond to Autism Diva’s very good point, I no idea as to why DMSA would have an effect like this if his mercury has caused brain damage. It makes no sense that my son would improve that drastically in 6 hours.

I would REALLY like the federal government to clear this up for Autism Diva and me. They could... oh I don't know... do a study or something?

Some of the autism/mercury parents think their kids got toxified while in the womb from a rhogam shot that had thimerosal in it.

There’s no evidence for that...


Again I must repeat my mantra. There is no evidence that Rhogam plays a role in the development of autism because it has never been studied.

A year ago Lyn Redwood, the head of Safe Minds, was invited personally by Dr. Julie Gerberding, head of the CDC, to submit a wish list of research proposals to her. Among the requested research was a study to see if Rhogam could be involved with the development of autism. I spoke with Lyn last week and she said that neither the CDC nor Dr. Gerberding has never responded to the list that they asked be submitted to them.

I am a Rhogam mom and was surprised that this had not been looked at yet. I am waiting for the CDC and the FDA to go ahead and do this very necessary safety study on an injection that that they have already approved on pregnant women.

but besides that, they think that they can chelate the kid NOW and affect proposed damage do when the brain was developing? They obviously have no clue about brain development and probably have never looked into Fetal Alchohol Syndrome. There’s nothing that undoes that, but the kid can learn to use what he has to the best possible extent.
— Autism Diva Jul 27, 03:46 PM


Autism Diva will get no argument from me (except for the part where she suggests that as the parent of an autistic child I am clueless about brain development).

Why did my son respond so quickly?

I think that the government should study it and find out.

3. Because there’s no way of knowing how much improvement in a child’s behavior and abilities is the result of natural developmental processes, the only accurate way to test chelation would be to perform double-blind studies with autistic adults.

If you’re interested in an unscientific anecdote, I had all of my amalgam fillings removed 10 years ago and took chelation supplements for a few weeks. It was my dad’s idea; he is a major health faddist, antivax, supplements out the wazoo, toxic fumes in the woodwork, you get the idea.

I noticed some improvement in my sense of smell after having the amalgams taken out, but the main benefit was just the nice new pretty composite fillings.

I’m still just as autistic as ever.

So is my dad…
— Bonnie Ventura Jul 28, 09:38 AM


As in Bonnie's case, the anecdotal evidence I have seen seems to suggest the older you are, the less effective chelation is on autistic symptoms. The best results seem to be for children under five and progress seems to really slow down as children age.

I have read several stories though from people who have tried it on their teenagers and even on adults and some progress has been made.

Say it with me:

Sounds like something that the government should study.

July 28, 2005

Operation Red Fern

Someone once said that when your child is diagnosed with autism, you begin to meet a better class of people.

Extra mile for boy's best friends
Cross-country relay will keep them together

Friday, July 29, 2005
By Jacqueline Shoyeb, Pittsburgh Post-Gazette

The volunteers call the cross-country trip a doggie relay. The Kuehn family calls it a godsend.

For two Labrador retrievers, Trikzy and Daisy, and 12-year-old owner, Joshua, it's their lucky break.

Joshua, who is autistic and is calmed by the animals, was faced with the possibility he might have to give up the dogs for adoption after airlines told his parents it would be too hot in the cargo hold to fly the dogs to the family's new home in Phoenix.

So the Kuehns reluctantly put the dogs up for adoption, posting an e-mail on AutismLink, a Web site that provides information and support for families with autistic children.

But the response they got was not what they expected. A woman from Du Bois in Clearfield County told them, Your dogs are coming with you.

And so this morning, Trikzy and Daisy will begin the first leg of a three-part trip involving volunteers from two states who will eventually take the pair to their new home in what they call a doggie relay.

"When I heard the news I lost it," said dad Jeffrey Kuehn, a security guard from McDonald. "Strangers are doing this and that's what's amazing about it."

The effort is especially important to Joshua, who is diagnosed with Asperger syndrome, an autism disorder that limits his communication and social skills.

"They help through the battles and through with making friends and everything," Joshua said. "They're the only ones I can really talk to."

The dogs comfort him, said his mother, Kathleen.

"It was a godsend because I don't think my son would go without them," she sad.

The idea for the dog relay began last week when Jenny Webster, of Du Bois, saw the Kuehn's e-mail seeking an adoptive family for the two dogs on AutismLink.

The family was relocating to Phoenix for better jobs and warmer weather, and couldn't bring the dogs with them. After the airlines turned them down, the family found out that a professional pet transporter would charge them $1,400, an amount they couldn't afford.

"He wasn't going to have his dogs, his best friends," said Webster.

"I have an autistic child and I know how attached he can be to things and people and animals. If I were in that situation I would have hoped someone could help me out."

Touched by their story, Webster sprang into action, sending out e-mails asking for volunteer drivers to help the cause.

In a few days, people from across the nation were responding with donations from $5 to $200 and a few offers to drive.

Through the AutsimLink Web site, Webster, a stay-at-home mom, secured two drivers and $800 for gas.

"This has been fast," she said.

"But I'm up for it. It's going to be fun."

Two others up for it are Jenn Engle of Albuquerque, N.M., and Swissvale resident Lenore Wossidlo.

The plan, which was ironed out yesterday goes like this:

Wossidlo picks up the dogs in McDonald today and will meet Webster at the intersection of Interstates 79 and 80 in Mercer County.

In the second pass-off, Webster will take the dogs about 1,500 miles to a restaurant in Elk City, Okla., which is about 100 miles west of Oklahoma City.

Engle will then pick up the dogs and head another 550 miles to Albuquerque, where Jeffrey Kuehn will be waiting to take the dogs the rest of the way to Phoenix.

None of the volunteers have met Joshua, but they all say they couldn't let him be separated from his longtime pets.

"This is a boy with autism who is moving across country to a new school, new friends, new neighbors," said Wossidlo, who also has an autistic son.

The disability makes even simple changes like driving a different way to the store confusing and upsetting, said Dr. Nancy Minshew, a psychiatry and neurology professor at the University of Pittsburgh School of Medicine.

"Other kids may be excited about getting a new room, new bedspread and more, but this is the kind of kid who will probably want everything to be the same," she said.

In Joshua's case, the dogs help calm him when things do change, said his mother, Kathleen.

Trikzy, a black lab, was Joshua's a birthday gift six years ago. Daisy was rescued from an abusive home two years ago. Both dogs are close to him, but 68-pound Daisy is extremely attached, she said.

"The yellow lab sleeps with him and tells him what time to go to bed," she said.
"When he goes to school, she cries. Those two are so attached it's unreal."

For Wossidlo, who also is involved in autism awareness efforts, the doggie relay is more than strangers driving two dogs 2,100 miles across the country. It's a show of compassion, she said, for an autistic boy and his dogs.

"And it all started a week and a half ago," she said, "with one e-mail saying, Can you take my dog?"

(Jacqueline Shoyeb can be reached at jshoyeb@post-gazette.com or
412-263-1255.)


If you don't click this link and contribute $5 to the effort, then you have no soul.

You can keep up with the doggie relay over the weekend here.

The Ground Rules

Several weeks ago I posted the RFK Jr. article, Deadly Immunity, to my site. I posted that I had begun to look into the details of the Verstraten study and it seemed that there was sufficient evidence show that malfeasance had taken place. I said that I would be posting on it “soon”, but soon became not so soon as the more I read, the more I found that there was to read.

The entire story about what the CDC knows and when they knew it seems to be about as complicated as the mercury/autism theory itself. So at some point I need to take a break from researching and just start writing about what I am finding. It is time for me to dive into the discussion.

Please keep in mind, I still have not finished digging through all there is to dig through, so this is open to update and correction, and especially open to finding additional sources of information. I want this to be an open dialogue.

I am attempting to use as many primary sources as I can, but I am not ruling out the use of secondary sources. I also want to take care to evaluate the information primarily based on the information, rather than on who is offering it. Reputation of the person and conflicts of interest certainly need to be factored in when evaluating an argument, but I don’t want to dismiss an argument based only on who brought it to the table. The argument itself should rise or fall on its own internal logic and fit into the bigger picture as much as possible. The assertions of Offit, The Geires, McCormack, Haley, Gerberding, Kirby, Fineberg, Redwood, etc. should all be heard.

I also want to explain that my approach to the question of whether or not the mercury in thimerosal contributes to autism. Most of the discussion seems to start with autism and try to work backward to see if mercury is the culprit. That is certainly an important line of inquiry, but what find less of an emphasis on, and what is more interesting to me at the moment, is the idea of starting with mercury and working forward to see if you find autism.

If the mercury/autism holds water, then the arguments traveling in each direction should meet in the middle.

Feel free to quote me, but please ask permission to use my images (I reserve all rights, but I try to be generous, however I might have to say no once in a while).

I am hoping that this will encourage HEALTHY debate, and not merely be another place on the internet where people on both sides vent their frustration on one another. Differing opinions and interpretations of information are graciously invited. Contempt is not.

Good natured satire is always appreciated as always.

Also, please bear with me if there are long pauses between posts. I have an autistic son ya know.

The Wrong Side Of History

Update: I just got a call from the AJC that they are going to print my letter.

Yesterday I read an opinion piece printed in the Atlanta Journal Constitution by a member of the editorial board. I wanted to post it here so that I could both answer it, and record it for posterity. It is an example of the kind of harsh, myopic criticism against parents like me who question the conclusions of the Institute of Medicine and choose to treat their child’s autism medically.

The response I make to the article is not a full one, but a succinct one that I felt would have a better chance of being printed in the letters to the editor. To try to respond to all the problems and biases in this piece would require a book. A book like Evidence of Harm for example.

MY OPINION
Distrust feeds ignorance of health facts
Mike King
The Atlanta Journal-Constitution
Published on: 07/28/05

A recent survey by the Atlanta-based American Cancer Society found that roughly half of Americans believe that surgery causes cancer to spread. And about 25 percent think that science has already found a cure for cancer, but it is being held back by a profit-driven health care industry.

It has to do with trust.

The continuing controversy over whether autism is linked to trace amounts of mercury used as preservative for childhood vaccines is in this same category. In recent years the Centers for Disease Control and Prevention, the Food and Drug Administration, the Institute of Medicine (the medical arm of the National Academy of Sciences) and the American Academy of Pediatrics have all debunked the concern that thimerosal, the preservative, causes or even contributes to autism. At least five major scientific studies have come to the same conclusion.

Yet the number of people who believe the link has been firmly established — parents of children with autism, in particular — continues to rise. They received a significant shot in the arm last month when Robert F. Kennedy Jr. wrote an article in Rolling Stone magazine suggesting the nation's public health community is conspiring with drug makers to cover up the damage done by thimerosal.

A government bureaucracy that willingly subjects children to the risk of autism in exchange for propping up the pharmaceutical industry certainly wouldn't want a cure for cancer to become widely available, now would it?

This is lunacy.

"It's really terrifying, the scientific illiteracy that supports these suspicions," said Dr. Marie McCormick, chairwoman of the Institute of Medicine panel that issued its report on the research about thimerosal and autism last year.

It's one thing to refuse to consider the scientific evidence; it's quite another to act out of willful ignorance and subject yourself or a loved one to what amounts to medicine-show cures. Yet that's what some parents of children with autism have begun to do with chelation therapy, a treatment that should be confined only to patients with acute metal poisoning.

Chelation involves using drugs to remove heavy metals from the body, but when administered improperly — as in using it for patients with autism — it can lead to liver and kidney damage and other problems. Similarly, some autistic children are prescribed a dozen or so vitamin supplements to take every day, and their diets heavily restricted as a way to deal with the condition, according to testimony in lawsuits. Some are subjected to 160-degree saunas to sweat the metal from their systems.

The panic stems from a 1999 FDA finding that the amount of mercury contained in the normal immunization schedule for children exceeded the agency's guidelines. By 2001, no vaccines for children had more than a half of a microgram of mercury in them — an amount that is roughly equal to that found in an infant's daily supply of breast milk.

But the controversy continues, fueled at least in part by the alarming rise in the diagnosis of autism. In the 1980s, the condition was found in roughly one child in every 10,000 births. By 2003 that ratio had changed to 1 in 166.

Suspicion is so strong in some circles that CDC researchers told The New York Times recently that they have received threatening letters and phone calls. The Atlanta-based agency has increased security because of the threats, the newspaper reported.

Although it hasn't felt such a backlash, the American Cancer Society — located across the street from the CDC — must understand the frustration. The organization asked 957 adults without cancer to answer a true-or-false quiz. Fifty-four percent said they either weren't sure or were convinced that surgery spreads cancer; 27 percent said they believed a cure was available but being withheld; and nearly 20 percent believe pain medications were ineffective in cancer patients.

Over the years, cancer and pain-management specialists have made remarkable progress in that arena. What a shame that message hasn't gotten through to some patients and their loved ones.

— Mike King is a member of the editorial board. His column runs Thursdays.


Here is the letter I sent to Mr. King in response to his column:

Your Autistic Opinion

Mr. King,

I read your piece and wanted to let you know my thoughts on it.

As the parent of a mercury and lead poisoned child who has been diagnosed as autistic, and as one who has spent the last year watching him recover through the biomedical interventions that you seem to mock in your writing, I have to tell you that my first impression on reading it was, "Wow. I wonder how this guys is gonna feel when he begins to realize that he is on the 'wrong side of history'".

Thousands of kids with autism are improving, and some are even becoming indistinguishable from their peers through these biomedical interventions. I believe, with what I am seeing in my son's life and in the other autistic children that I know, that in ten years a more refined version of the interventions that you malign now will be the SOP in the treatment of autism.

You can argue about studies all day long, but you can't argue with results.

Next time, interview a few of these "scientifically illiterate" parents to see just why they dismiss the opinions of Marie McCormick. I think you will be surprised how scientifically literate they are, and just how poor Ms. McCormick's judgment is when it comes to weighing the scientific literature on autism.

Bottom line, parents believe what they are seeing with their own eyes. Here is what I am seeing with mine: http://adventuresinautism.blogspot.com/2005/06/my-boy-can-talk.html

I only hope that your column does not deter some parents who have a newly diagnosed child from seeking medical treatment for autism, which is a medical disorder.

Ginger Taylor
http://www.adventuresinautism.com/

Ummm... so which is it?

Is mercury dangerous?

Teen charged with causing mercury spill at high school
(Kent County, July 27, 2005, 5:13 p.m.)

A student accused of spilling mercury at Cedar Springs High School is now being charged with a felony.

On May 11, authorities say 18-year-old Ryan Gorter was caught playing with a dime-sized amount of mercury in class. That prompted school officials to shut down the school for two days while crews cleaned up. The cleanup cost the district more than $40,000.

Now Gorter faces charges of malicious destruction of property, which carries up to ten years in prison, as well as unlawful possession of a harmful device. He has been released on bond.


Or is it safe?

"Our review revealed no evidence of harm caused by doses of thimerosal in vaccines..." - The FDA