Cherry Picking Science: Chicago Tribune's Shotgun Journalism Strikes with Another Shoddy Hit Piece
By Teri Arranga
If the Chicago Tribune really knows spontaneously recovering autistic children, we want to see serious scientific study on this phenomena and we want to meet them. The Chicago Tribune reporter had no interest in meeting ours. Astoundingly, that is, in fact, what happened at the Autism One 2009 Conference. Armed with a miniature memo pad and a large amount of sarcasm, when presented with the wonderful opportunity to meet children who had recovered from autism, a disorder that affects at least 1 in 91 children and costs public educational programs obscene amounts of money every year, the reporter's agenda placed no priority upon this.
Fortunately, seasoned parents were able to kindly facilitate this meeting, and the reporter did meet with an articulate child who recovered through the very types of biomedical treatments that the Tribune is on a campaign to discredit, in addition to the reporter sharing a pretty smile in a photograph of a boy (Michael, with his mom, Deb) who has gone from moderate-severe full-syndrome autism to the level of ADHD, and whose mother shared his positive biomedical journey - which included chelation - with the reporter.
According to the recovered boy's mom:
"I sensed that the reporter had an agenda. I told her our story of recovery. I explained that when Mark was diagnosed with autism, we were told that he would require institutionalization. My husband and I did not accept that answer or the lack of information, so we began our own research. We started the gluten-free/casein-free diet and saw great success. Mark had language within a couple of weeks. Methyl B-12 stopped his stuttering and bed-wetting and helped him learn and retain information. I introduced her to Mark, who spoke to her with great eloquence and enthusiasm, so she could see his wonderful recovery. The reporter seemed completely uninterested in Mark and in our story, and it became very apparent that we were making no progress in communicating our story. I finally walked Mark away because the negativity of the reporter concerned me, and I did not want Mark to be exposed to this."
And this boy has moved forward greatly:
When I related sentiments such as these in a telephone conversation with the Tribune editor, he said, "You can't tell a reporter how to do their job, can you?" In reply to his comment, I shared that, yes, you could, because I had heard that Dr. Bennett Leventhal [a psychiatrist formerly of the Chicago Tribune's state, Illinois] had sat down with the Tribune staff. The editor temporarily became silent, including not denying what I had said.
Although for the moment I can neither confirm nor deny such a meeting, simply wondering if the silence can be presumed to be affirmation, I'll share the reason that I think it may matter. A 2005 journal article disclosed that said doctor was sitting on the speaker's bureau of Bristol-Meyers Squibb/Otsuka, which just received FDA approval for its drug Abilify's use for irritability in children with autism.
Gee, I think clearing up things like their gastrointestinal pain, food allergies, and sensory dysfunctions, as well as learning disabilities and behavioral issues that could be directly or indirectly attributable to heavy metal toxicity, will help them be less irritable.
But back to the children who have recovered and the topic of chelation, which many have used as part of their recovery process . . . .
The Tribune reporters spent a good deal of effort trying to box Dr. Martha Herbert into all sorts of neat little agenda-driven packages. Dr. Herbert commented to me that it was the most biased interview process she had ever been subjected to. She is not alone in this sentiment. Another doctor relevant to the discussion at hand had sent 80-100 pdf files of scientific studies. According to Dr. Jeff Bradstreet: "As expected, the stories paint an extremely biased view which fails to acknowledge the scientific literature and even the individual facts concerning specific children. Despite the fact Colton had toxic levels of mercury in his blood, they only parrot Special Master Vowell, who also got the facts wrong." Yet, when the Tribune asked me for studies, it seemed to me as if they had never seen one. Knowing that they had, indeed, received much scientific substantiation, I sent 18-19 pages of hundreds upon hundreds of references. Amazingly, the reporter asked me why I sent that particular list of references. I responded: "It seemed as if you were interested in studies that substantiated a treatment-based approach. So, I sent you a bibliography containing many scientific studies that have bearing upon autism." Fancy that.
Well, here's one reference I cited that, if the Tribune reporter wants to discredit my extensive reference list of widely-read and respected peer-reviewed journals with a multitude of scientists from esteemed institutions based upon cherry-picking the Geiers, she can just go ahead and discredit this one too: Diagnostic and statistical manual of mental disorders, 4th ed. Washington, DC: American Psychiatric Association; 1994. I would.
Seasoned advocates view the Tribune's strategy as a witch hunt to pick off the children's friends - the courageous doctors and researchers who are willing to move forward with integrity for the children despite mainstream pharMonied prejudice - one-by-one so that they can come back for the next kill off the backs of the children. In the court of public opinion, the Tribune is using their own biased and cherry-picking reporting to validate their own biased and cherry-picking reporting with circuitous arguments on the order of "don't believe anything from this scientist because we reported previously 'don't believe anything from this scientist'."
Did I digress? Back to the discussion on chelation . . . .
As I said earlier, the Tribune reporters spent a good deal of effort trying to box in Dr. Martha Herbert. I will share now a portion of Dr. Herbert's correspondence with the Tribune:
"I did a rather long interview with the Tribune to explain my thoughts on chelation and additional approaches to solving the health issues connected to autism. The only consequence of my interview is that you use a solitary quote to make me sound contentious and defensive. Is there a reason you chose not to use something I said that would actually illuminate the discussion surrounding chelation and other medical treatments for medical compromises that may exist in these children?
So let me clarify one more time: my position on chelation is a consequence of science. There is no doubt that it serves to reduce the body burden of heavy metals. But although there are numerous anecdotal reports, we have no sound science yet to assess whether, how or in what ways the reduction of those metals leads to an improvement of children with Autism Spectrum Disorders. I support such research. Secondarily, like all forms of treatment, chelation can be mishandled by practitioners; it carries some intrinsic risk for which there are protective measures that can be taken (and that need to be studied); mishandling this treatment can create extra risk. I support research to determine if there are optimal chelation strategies that minimize risk and maximize any potential benefit. There is risk for many procedures and medications in medicine, and this is balanced against benefit and need.
It is also the case that physicians use treatments based on judgment in cases of serious need. That is commonplace. Obviously there are good and bad doctors but it is not only bad doctors who do whatever they can to help patients in need. Good doctors are often good precisely because they do that skillfully.
There are always good doctors, bad doctors, successes, failures and mistakes. That is not a news story. The CENTRAL conclusion to be drawn from observing parents searching far and wide for treatments for their ASD children—and reporting successes as well as failures and catastrophes—is that much more attention must be focused by mainstream medicine and federal and private funding on the medical crisis faced by so many of these children.
IN CONCLUSION: My statements regarding chelation will always be measured and circumspect until we have additional science. I bent over backwards to give that context, worked hard to be kind and informative, sent abundant materials to reinforce what I said, explained my role in articulating physiological issues in autism, and offered to be available for background on autism going forward. You do nothing to elevate the discourse by using a quote from me making me sound litigious and angry without the context of my other comments."
Following please find another framework that various persons interviewed for the article tried to express. I will include comments that I sent to the Tribune below.
Should we intervene in "autism"?
Following, please find a parent's perspective on issues falling under questions related to an autism diagnosis. Unless otherwise specifically noted, all viewpoints are solely my own, and nothing that I am saying below represents medical advice. Individuals, or their parents if minors, are responsible for seeking medical advice from professional clinicians and thoroughly researching both sides of any health-related question. Quotes may be used in their entirety only. It is my opinion that the Chicago Tribune's reporting has been biased. I, therefore, challenge the Chicago Tribune to reflect any information presented herein fairly.
The questions posed by the Chicago Tribune can be answered by applying general principles.
The Chicago Tribune and I have a different framework via which we view the overall topic. There needs to be a paradigm shift away from using the word "autism." It's not a useful label, and I think that's what causes a lot of the "political" problems. "Autism" is a label that is given to a constellation of symptoms that include behavioral and cognitive manifestations.
It is well-known in the general medical literature that physiological conditions, such as pathogenic infection and organ pathology that causes buildup of bodily toxins, can cause neuropsychiatric symptoms. By way of example, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection (PANDAS) can cause the behavioral and debilitating manifestations of obsessive-compulsive disorder and Tourette syndrome.
Starting again from the premise that "autism" is not a useful label, children labeled as "autistic" have a collection of other conditions. (These are sometimes referred to as comorbidities, concomitant, or coexisting conditions; but they are not really "comorbidities," when you consider that the "autism" label is medically irrelevant to begin with). It is these other conditions that are often overlooked when mainstream providers refuse to see past the "autism" label. If a child or any individual presents with clinical symptoms indicative of an underlying condition, then a workup should be done, to include objective laboratory testing and/or other diagnostic procedures as medically appropriate. If objective laboratory biomarkers signal imbalances in any patient, then these must be addressed. If an underlying diagnosis is indicated as a result, then that diagnosis is what is being treated - not "autism."
Therefore, if a person has immune dysregulation, which could include - but is not limited to, allergies, inflammation, or autoimmune disease, then that is what should be treated. If an individual has gastrointestinal pathology or compromised GI function, then that is what should be treated. And so on. It just so happens that when children labeled with autism are respected in this manner by medical practitioners, their cognitive and behavioral symptoms improve.
Practitioners treat a diagnosable and diagnosed physiological condition.
What do the lab markers indicate for children labeled with "autism"? Many urinary, fecal, blood and other biomarkers evidence items that are imbalanced or should not be there. When we bring these items back into balance, children labeled with "autism" begin to show improvement in cognition and behavior.
Do studies from various disciplines of science point towards the picture that many children labeled with "autism" have some or all of the following: immune dysregulation, metabolic dysfunction, oxidative stress, detoxification impairment, endocrine system disruption and gastrointestinal pathology, etc.? Yes, they do. Do results obtained by widespread medical practices point towards the picture that many children labeled with autism have some or all of the following: immune dysregulation, metabolic dysfunction, oxidative stress, detoxification impairment, endocrine system disruption and gastrointestinal pathology, etc.? Yes, they do.
So, coming back to the premise that "autism" is not a very useful label, and broadening the discussion to look at dysfunction in the underlying physiology - that is, the "comorbidities," we move forward to look at the general science of the underlying conditions and the general science behind and history of efficacy of each treatment for the underlying conditions.
So, what do we consider treating? If a person has immune dysregulation, which could include - but is not limited to, food allergies, inflammation, or autoimmune disease, then that is what could be treated. If a patient has biomarkers for viral, bacterial, or fungal infection, then intervention is considered for that. If an individual has gastrointestinal pathology or compromised GI function, then that is what might be treated. If an individual returns lab results that indicate thyroid dysfunction or mitochondrial issues, that that could be addressed. And so on. It just so happens that when children labeled with "autism" are respected in this manner by medical practitioners, that their cognitive and behavioral symptoms improve. This is to be done with due diligence; many of the aforementioned interventions involve pharmaceutical drugs - just like for people not labeled with "autism" - and an individual's unique metabolic status and profile must be taken into account and toleration of the therapy monitored.
When parents undertake any significant intervention, it should be under appropriate medical oversight. There are some things that are relatively safer than others to try, which are healthful measures for any segment of the population. These include therapeutic diet (i.e., generally healthful and tailored for that person's allergies) and nutritional supplementation. Even with these, working with a doctor or nutritionist can be prudent, to include objective laboratory testing.
It is at least sometimes recommended by practitioners that intervention to preserve and/or heal and/or arrest further compromise of the gut be started before introducing other medical interventions.
It would be imprudent to generalize in absolute terms about the safety of any medical intervention; we can talk about relative safety, and, while we do this, we need to respect individuality on a patient-by-patient basis. At the same time, we need to weigh doing something versus doing nothing.
For example, if a patient is displaying the clinical symptoms of heavy metal toxicity and concrete exposure to heavy metals is suspected, and if it is not an emergency situation where measures must be implemented in a medical setting immediately, and if there is nothing to medically indicate that the patient would have an adverse consequence due to the provoking agent, then a provocation might be considered by an experienced, credentialed professional, with the individual or parent(s) being provided with information to make a fully informed choice.
In general, the medical application of chelation has been in use since the 1940s. It is a bit odd as to why it is considered "alternative." There are natural substances for detoxification, and also attempts can be made to heal the body so that it can attempt a degree of detoxification naturally. A good route is to restore the body's own ability to heal and detoxify itself.
What the Tribune is more likely asking me about is chelation with a pharmaceutical agent. There are some ways by which it can be done safely, depending upon the patient, and under experienced medical oversight to include regular objective laboratory testing, including monitoring of mineral levels and organ status. I know many children who have not had any problems with this and who have progressed cognitively with chelation as part of their regimen. Nonetheless, as with any pharmaceutical product, it is important to determine whether the individual patient may have a sensitivity due to their individual makeup or current overall health status, and to observe the patient during treatment. Furthermore, parents should research the different pharmaceutical agents and routes of administration and talk to the doctor.
Again, we are not talking about treating "autism." We are looking at the individual like any other patient, determining whether they have heavy metal toxicity and seeing what would be the medically indicated treatment for that condition for any other patient.
We sometimes hear comments generalizing that the whole practice of chelation is dangerous because a boy named Tariq passed away; of course, we mourn this. However, what the commentators neglect to mention is that this was due to a medical error where the child was given Disodium EDTA instead of Calcium Disodium EDTA. This represents an iatrogenic artifact, just like what happens every day in American hospitals, with mainstream doctors, pharmacies, Vioxx, etc. Those in mainstream medicine are also susceptible to err. That does not categorically mean that an entire intervention is reprehensible.
The inverse of the Tribune's question is to ask: "Is it safe to leave heavy metals in a person, especially if there is a likelihood that toxins will cause adverse health consequences?"
The same principle of examining and doing a workup of the patient, discerning whether there is a diagnosable and diagnosed physiological condition, and considering whether interventions such as intravenous immunoglobulin or hyperbaric oxygen therapy have been used for these underlying conditions (e.g., immunological problems or inflammation) can be applied.
Good authors for further reading on the topic of hyperbaric oxygen therapy would be John Zhang, MD, PhD, a professor of neurosurgery or Paul Harch, MD, who received his medical training at Johns Hopkins; a good person to contact for questions about IVIG would be Sudhir Gupta, MD, PhD, of the Institute for Immunology at UC Irvine.
The Chicago Tribune puts forth a question about a life preserver, saying that some life preservers may be made of lead. What the Tribune is asking for is a risk-benefit analysis. Will the individual surely founder if you do nothing? Is this particular life preserver of a type that has been able to be used safely in the past for others in similar situations and recovered those near drowning? I do not think the life preserver is the best analogy; drowning is an imminent emergency for which a snap decision often must be made. In the realm of health decisions, most afford parents the time to research a plethora of information from both sides of any question. Parents have a responsibility to look to actual research studies and commentary on both sides. Many parents in the "autism" community are, in fact, doctors, nurses, therapists, scientists, and other medical professionals.
The strongest evidence for anything working is examining a person for whom it has worked. The Chicago Tribune reporter met Mark Macluskie. Mark would likely have ended up sitting in an institution subject to unspeakable abuse had his mother not rejected such a prognosis and forged ahead under more forward-thinking medical oversight. Now he is writing compositions like what it would be like to be president for a day. When the day is done, clinical trials are comprised of individual persons; all of the children who are considered recovered from the label of autism make up a body of individual persons, whether they have been subjects in clinical trials or not.
There is a boy named Daniel who lives in Dubai. He was an adolescent, and his parents could not remember the last time he had smiled, laughed, or hugged - certainly over a decade. He bit clear through to the bone of his hand in pain and spent his time screaming and hitting himself . . . . Behavioral? His parents were told in Dubai that there was nothing they could do. Daniel was taken to a clinic in America. He was suffering from one of the most severe cases of gastrointestinal pathology known in the worldwide "autism" community. Left untreated, he could have died as a result of severe gastrointestinal impaction. Intervention was started. "Miraculously," within a few days, Daniel was running past his parents smiling, laughing, and hugging them. Daniel hadn't forgotten how. It's just that the pain would never let him.
In conclusion, if medical professionals do find evidence of pathology in children who are already labeled with autism, aren't they obligated to do something? Wouldn't not doing something represent medical negligence? Medical professionals are obliged to treat pathological conditions irrespective of whether a patient has a label of "autism."
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Alas, the Chicago Tribune is selective in its framework and veracity. For example, the article cites a study in Environmental Health Perspectives (EHP) that "found that children with autism had lower levels of mercury in their blood than those developing typically," without informing readers that mercury does not stay in the blood for very long, being taken up by the tissue, including the brain. In fact, also in a 2005 issue of EHP in a study by Burbacher, et al., we read:
"The large difference in the blood Hg [mercury] half-life compared with the brain half-life for the thimerosal-exposed monkeys (6.9 days vs. 24 days) indicates that blood Hg may not be a good indicator of risk of adverse effects on the brain, particularly under conditions of rapidly changing blood levels such as those observed after vaccinations. The blood concentrations of the thimerosal-exposed monkeys in the present study are within the range of those reported for human infants after vaccination (Stajich et al. 2000). Data from the present study support the prediction that, although little accumulation of Hg in the blood occurs over time with repeated vaccinations, accumulation of Hg in the brain of infants will occur. Thus, conclusion regarding the safety of thimerosal drawn from blood Hg clearance data in human infants receiving vaccines may not be valid, given the significantly slower half-life of Hg in the brain as observed in the infant macaques.
There was a much higher proportion of inorganic Hg in the brain of thimerosal monkeys than in the brains of MeHg monkeys (up to 71% vs. 10%). Absolute inorganic Hg concentrations in the brains of the thimerosal-exposed monkeys were approximately twice that of the MeHg monkeys."
For the sake of the children, Defeat Autism Now! Executive Director Jane Johnson adds:
"Ms. Tsouderos’ and Ms. Callahan’s focus on a few issues regarding treatment is unfortunate. We can't guarantee the excellence of every clinician on our list any more than any other medical organization can. One of our primary missions at Defeat Autism Now! is to educate families so they can make informed decisions and choose their clinician wisely - this is the reason for our conferences. Most of the clinicians who attend our seminars are thoughtful people who are trying to help this sorely underserved population. The painful part of this story is that the Tribune had the opportunity to cover one of the greatest tragedies of the last twenty years: there is no approved treatment for the core symptoms of autistic disorder (there are two FDA-approved medications for irritability associated with autism, Risperdal and Abilify; both are known for unpleasant and sometimes serious side effects). How is it possible that so little progress has been made? Why do medical organizations and government agencies feel no urgency to alleviate the suffering of these children? That's the real story, and the Tribune has failed to cover it. ARI/ Defeat Autism Now! encourages any discussion on autism and appropriate treatment for those affected by this disorder. ARI provides published, peer-reviewed information, all of which is available free of charge on our Web site at www.autism.com."
So, here is my own personal challenge to the parents, grandparents, brothers, sisters, aunts, uncles, nieces, nephews, cousins, other relatives, friends, coworkers, and others who know a family whose 1 child in 91 is affected by autism: For the sake of every child's intestines that are bleeding and ulcerating because the Tribune's biased brand of agenda-driven reporting may prejudice practitioners and others from going forward with efficacious, humane, and non-discriminatory medical care, boycott the Chicago Tribune and their advertisers' products.
I'll close with my favorite comment, which is from a recovering child: "I've read better stories in the Weekly Reader."
Teri Arranga is the director of Autism One and general manager of Autism One Radio. Teri hosts the weekly program Autism One: A Conversation of Hope on the VoiceAmerica Health and Wellness Channel. She is the editor of the U.S. and Canada edition of The Autism File magazine. Teri is vice president of Medical Veritas International and commissioning editor of Medical Veritas®: The Journal of Medical Truth, the journal of MVI. She also serves as the project manager for the Autism Coalition for Treatment and as the chairperson of the Autism Human Rights & Discrimination Initiative. Teri has been involved with a number of media projects, including consulting for medical documentaries by award winning filmmakers Lina Moreco of Canada and Gary Null of the United States, appearing in the award-winning documentary Beautiful Son, and consulting for the April 2007 Discover magazine article "Understanding Autism." Teri is a recipient of the National Autism Association's Believe Award (2008) and was given honorable mention in Spectrum magazine’s "Top 10 Faces of Autism" (2006). She has been an active advocate in the autism community for many years, including attending and broadcasting events in Washington, D.C. Ed and Teri Arranga have two boys: Jarad, who is 14 years old, and Ian, who is 11 years old.
"The CIA have never been an intelligence organisation. The CIA's motto is to protect American business interests." Greg Hallett
"You could get a journalist cheaper than a good call girl, for a couple hundred dollars a month." - CIA operative discussing with Philip Graham, editor Washington Post, on the availability and prices of journalists willing to peddle CIA propaganda and cover stories. "Katherine The Great," by Deborah Davis (New York: Sheridan Square Press, 1991)
"About a third of the whole CIA budget went to media propaganda operations. ...We're talking about hundreds of millions of dollars a year just for that.....close to a billion dollars are being spent every year by the United States on secret propaganda. But when the Church Committee reported on the CIA media operations, for example, beyond friends in the press, beyond having people who were just generally -- thought along similar lines, it turned out that they had thousands of journalists in their employ. Not merely friendly, not merely agents, not merely someone you could pass a story to, but people who might have appeared to the outside world to be a reporter for CBS was in fact a CIA employee getting a salary from the CIA.....And that was repeated thousands of times all around the world. They also owned outright, the CIA -- about that time 250 or more media organizations. That's wire services, newspapers, magazines, radio, TV stations -- all around the world that they owned outright. The actual shareholder of the company turned out to be some CIA front.
The Church Committee, unfortunately, did not name very many of these organizations because those that got named, of course, had to close down immediately. But it was learned that -- even things like the Rome Daily American, which was a major English language newspaper in Rome, for 20 or 30 years had been owned by the CIA. This was published and, of course, the paper closed the next day"---[1999] Testimony of Mr. William Schaap on the role of the U.S. Government in the assassination of Martin Luther King
Posted by: john | November 25, 2009 at 04:15 AM
The fights and arguments will continue to go on and on and on... until someone does a COMPLETE study of all that is out there without bias.
Is that someone the government who is joined at the hip with the AMA, FDA, the big drug companies and more? Or will it be Autism Speaks funded by well meaning parents and concerned others?
Either way those two DO have biased agendas. And that leaves parents and their children on the sidelines still waiting for the shining knight to come riding over the hill with help. I don't think it'll happen.
I think we (Autism parents) are going to have to do it on our own if we can expect to see any real results. But how to afford it? That's the 64 million dollar question.
I hope that we can joined forces to create the wealth needed to say to hell with the government and the promises of hope from others that will never be fulfilled to make a difference for our children today.
Posted by: John Kirton | November 24, 2009 at 01:06 AM
I'm sure that in the Art of War somewhere it talks about diversionary tactics where articles like this one's primary function is to cause us to change focus and begin to fight among ourselves, or to APPEAR to be doing so. It is entirely possible that the less informed, general public see these two reporters as guardians, shedding light on unusual treatments that appear to be a bit shady. Thankfully there was no mention the therapy of pumping oxygen up a kids butt.
Every day how many parents find out what's wrong with their child? 100? How many of those parents hit the internet as I did looking for answers? 50? 90? How many of those want to get into the middle of a fight?
Merck's annual advertising budget was over a billion dollars in 2006. In 2007 the budget was cut to 750 million. 24.5 million of that was spent on the internet, did you hear me, the internet. How many Left Brain/Right Brain sites are created by this Goliath? http://www.fiercepharma.com/special-reports/merck-top-13-advertising-budgets
Some of the brightest minds in the world are working on protecting their brands against our slings and arrows. We are up against an extremely well financed machine.
Our Achilles' heel is a division of the camps and the more distance they can create between us, the weaker we become. They love it when we fight among ourselves.
Their weakness is our undying determination, this is personal to us, we are as dangerous to them as suicide bombers. We have nothing to lose, many of us have already lost it all. Our jobs, friends, houses, our dreams, our children. It's tough to beat a group of people who have their backs against the wall and a rock in their hand as we have found out in Afghanistan and as they are finding out about us. Their best bet is to get us to throw our rocks not at them, but at each other.
Our enemy is what injured our children. For Ben it was a vaccine or a series of vaccines, for others it may have been a smoke stack, some toxic dump or some other environmental factor. Some may have gotten autism from an epidural or a lack of oxygen caused by clumping red blood cells caused by some toxin or heavy metal trying to funnel through narrow arteries in the brain caused by the homozygous C677T mutation in the methylenetetrahydrofolate reductase (MTHFR) gene. And if chelation, GFCF diets, specially compounded supplements or hyperbaric oxygen therapy is working, then great. Do I understand why? No, not really, just like I didn't understand why when I went through a year of acupuncture. All I know is that the stuff worked, I saw results, that's my science.
If others want to expect nothing or to sit back and wait for some spontaneous improvement or by sticking their child on the bus in the mornings hoping someone else will do the job then fine, they made their mind up for whatever reason. Fine, good luck.
But I think that even tough we share differences in treatment, a good majority of us all agree on there being an environmental trigger to autism. Let's build on that.
I want you to think about something, do we really know who we are arguing with? I'd be willing to bet that some of these people are making $100,000 a year or more to argue with you, in concert with each other, conspiring against you, pushing your buttons, even perhaps baiting you just to make you look angry, unattractive to some of those parents who just had their rug yanked from under them and are looking for answers, looking for help. These people are a pool of new warriors who are eager to get to work saving their kids. Let's make them feel at home.
Posted by: bensmyson | November 24, 2009 at 12:36 AM
Given that the reporters at the Chicago Tribune are getting proficient at gross misrepresentation and cherry picking, perhaps a word characterizing that kind of pathological activity has been born.
When one habitually misrepresents or cherry picks, its called "Tribuning".
Posted by: michael framson | November 23, 2009 at 11:10 PM
I too was disappointed by the article in the Chicago Tribune, but not too surprised. Science has stopped being science and has become a political playing field for supporting and building arguments. Parents need to find their common sense and go after what works for their children regardless of what the status quo seems to say. It seems parents have the burden to seek what is best for their child. My son has greatly benefitted from alternative methods. Why? Because they look to support the underlying causes rather than bandaid the symptoms. They look at healing the body rather than dulling the mind. As tough as it is, I find that the parents are the passion to raise and keep the momentum moving forward to finding answers and fighting back when disinformation rises. Keep in mind too that the AMA is headquartered in Chicago.
Posted by: Sunshine | November 23, 2009 at 09:30 PM
I think we can see who Singer's cohorts are by also looking at the blogs she links to on her Autism Science Foundation blog. The typical clueless pack of "let's bash biomed parents and look for the genetic link forever crowd"...Robin Hausman Morris, Left/Brain Right/Brain (Kev), Autismville, Autism News Beat...all just usless.
Posted by: LJ | November 23, 2009 at 08:44 PM
Trine's attack articles seem like a mini version of Offit's book. It's like he is the editor.
Posted by: Mr. T | November 23, 2009 at 07:47 PM
Nora, I saw the page before it closed. Other "friends" of Singer's are no surprise-- Amy Pisano from ECB2, Roy Grinker, etc.
Some solid members from our community are on Singer's page, possibly because of attempts in the past to reason with the woman or via AS. I wouldn't make too much of everyone on that "friend" list, but Tsouderos's name being there is a bit contrary to the "objective" aims of journalism, wouldn't you say?
Posted by: Gatogorra | November 23, 2009 at 07:39 PM
Nice one Ben's dad!
Posted by: Natasa | November 23, 2009 at 04:27 PM
and I just want to add her Trine's facebook pg. only had two hundred some friends unlike Singer's who had some four hundred. This would suggest to me that Trine's list was a little tighter and closer to a true circle of friends. I did look for Offit, but he was not listed on either page. I was honestly hoping that my post would not go up until someone in the know took the time to take a peek at the other friends on both of their pages. Hopefully someone did.
Posted by: Nora | November 23, 2009 at 03:24 PM
I understand Offit's and Big Pharma's reasoning for bashing us biomed parents.....greed, money and fear that more and more people will wise up and not listen to their lies any longer. But what is Singer's motivation? Nothing but sheer jealousy and demented thinking. She is more evil than Offit, Synderman and Big Pharma combined for continually throwing her own kid and all other autistic kids under the "vaccine bus!"
Posted by: Sad Singer | November 23, 2009 at 03:18 PM
Katie,
You are so right, it does read as if written by a petulant child!! It's terrible, if I were Singer I would be embarrassed.
Nora B,
They are friends on Facebook?! Seriously?!
I've always wondered how much the Singers, Offits, and Big Pharmas follow "us" (you know the Nutters). I feel quite confident that they DO follow what we say and write. Which is so infuriating. Do they think we like to spend thousands of dollars on "non-FDA" approved treatments? Is that fun for us, that we do it for shits and giggles??!! We are simply malcontents quixotically banging our heads on Big Pharma's door? FOR FUN?
NO: the answer is THOUSANDS and THOUSANDS of us are biomedically treating our children-- BECAUSE IT IS WORKING!!
As if it wasn't hard enough treating our kiddos, we have to wade through the crap written by literary mercenaries.
Bensmyson,
They have to know how many children they are hurting by preventing this knowledge from being spread- I think they don't care. I think they only care about a paycheck directly or indirectly from Big Pharma.
Julie,
I agree. Collectively, they truly have done more damage than the worlds most evil dictators. If we don't stop them, who will?
Posted by: Casey Ohlsson | November 23, 2009 at 02:46 PM
Jen,
This mother is in UK and she could not get a simple strep test in a timely manner. She was refused. I don't know anything about Canada.
Going back to UK the doctors finally did it later, and of course it came back negative because he had been on antibiotics! So no way of knowing if he had strep and it was treated or if he had Kawasaki's. But there is much more going on with the child that is being ignored by the doctors. Like high SED RATES! So now she has to wonder if her child had strep, or did he have Kawasaki's,and now it is being allowed to linger untill his heart is damaged. She will know in the middle of December. That is how long it is taking to get an ECHO on this child. Long wait when if true the child should be on blood thinners right away to keep aneurisms from developing or growing near his heart. Kawasaki's is by the way (my belief) the same thing as autism. Just more acute and in a different place. Many are having trouble with thier kids later talking, and they are moody too. Many are having continous GI issues. They are being told by their doctors that Kawasaki's is not the cause of these things.
Meanwhile this child in UK is waitin! Nothing like having a artery burst near your heart while waiting on an ECHO. I am Just saying.
Another thing I am hearing parents on the Kawasaki's website worry about the I forget the 7 shots in one. It is very common that they receive all of this on one visit. No wonder it is 1 out of 66 in UK that have autism.
Universal health care; hmmmm It is not up to me what the government of the United States will decide for me. It is out of my hands (never was in them) so no use arguing about something that don't make a hill of beans. Frankly, that scares me too, so I will add it to my mountian of other fears and phobias..
Posted by: Benedetta | November 23, 2009 at 02:46 PM
Great work Nora B. What a cozy little klatch . . .
Posted by: Parent | November 23, 2009 at 02:15 PM
Chelation was probably the best treatment we gave our kids, though I believe its success hinges on the care given in every other treatment such as diet, supplementation and mitochondrial support. And btw, the urinary porphyrins predicted mercury body burden perfectly-- everything that showed on the UPPAs came out in the DMSA challenge tests. With each round, our son came back from oblivion in huge strides and the gains never waned. Speech, eye contact, GI function, cogitive function, behavior, comprehension and basic good cheer-- through the roof. He went from nonverbal and uncomprehending to speaking in sentences and responding to questions appropriately. The moment he had his first normal bowel movement since age one on the tenth round of chelation, he went from un-potty-trainable to training himself completely in less than a week. And we found out he could write. Our daughter had always been less severely effected and most of her language and comprehension improvements were subtle-- but behaviorally, she did a 180. She went from 15 tantrums a day to less than one a week. Both kids sleep a solid 11 hours a night as well WITHOUT A SINGLE PSYCHOACTIVE DRUG. Though this had begun improving through diet, chelation seemed to seal the deal: after no one in our house slept more than four hours a night for two solid years (between regression at one and DAN treatment at three), we were a bit shocked to finally get enough sleep.
Furthermore, quite mysteriously, the kids' mitochondrial markers improved considerably and only began to rise again once we took a break from chelating. One of those markers was also for liver function-- it improved fourfold (meaning the marker reduced to a quarter of what it was at the beginning of treatment) from chelating. With this, the kids stopped getting sick. My husband or I might come home with the creeping plague but the kids would get a sniffle for a day and be over it.
Our DAN is very conservative, insists on frequent challenge tests, blood counts and mineral levels to ensure that chelation is necessary and doing good, not draining needed minerals. We also supplement very carefully. Chelation has been a Godsend-- the amount of mercury coming out of both kids is astonishing and I can only conclude that metal burden and efflux disorder can be very serious components of autism because when you get rid of it, the "autism" can start receding. For this and many other reasons, I agree with Teri that the name "autism" itself is very poor "nosology" or disease-naming.
Posted by: Mercurial Mom | November 23, 2009 at 02:12 PM
I haven't read anything that Chicago Trib has written in a while and I don't plan to read this article. Reading through others comments I surmise that this article is just more of the same old same old. Seems desperate. Vaccines are a hoax just like global warming is being revealed to be a big hoax.
BTW Chelation is the only thing that helped my son.
Posted by: Maggie | November 23, 2009 at 02:12 PM
As I pointed out last night on Kent Heckenlively's report, " When Journalists Play "The Telephone Game", Trine Tsouderos is a face book friend of Alison Singer, a page that was openly available last night, but now is not viewable. They are reading and watching our comments and apparently think that maybe this might be a little to obvious and association for a reporter to be having while writing a story bemoaning the treatment of autism. I thought she might close her friend view and copied the page just to prove I saw it.
Posted by: Nora B. | November 23, 2009 at 01:27 PM
For chelation to be accepted, one almost has to say that they think their child "ate some lead paint" at grandma's house and then start the basically safe chelation process.
Parents then have to "just be surprised" as the damn mercury comes out.... shizamm ! how did that get in there ??? well I guess treat for that too.....
pharma, AAP & the CDC wants Autism to become another "Jerry kids disease" where people simply raise & send in money for 50 years for endless research.
Posted by: cmo | November 23, 2009 at 01:14 PM
Teri, this is some of your best work, thank you!!!
I have no patience for pharmaceutical mercenaries that pose as journalists. Great job Teri!
Posted by: Erik Nanstiel | November 23, 2009 at 12:39 PM
I'll repeat Nora B's comment from yesterday: Trine Tsouderos and Alison Singer are Facebook friends.
I wonder if they poke each other.
Posted by: Gatogorra | November 23, 2009 at 12:35 PM
Do they have any idea how many children will suffer because of these articles creating unjust fear? When I first received Ben's diagnosis I admit to some degree of skepticism in regards to any form of treatment. I yielded to the wishes of my wife, the bright one. "Let's try it" she said. We immediately saw results. We were excited, recovering Ben now seemed a valid option.
I see so many other parents develop this sort of Stockholm Syndrome. One theory to explain the Stockholm syndrome is cognitive dissonance. Specifically, people don't like being unhappy for long periods of time, as the prospect is in some kidnapping or hostage-taking situations. To resolve the cognitive dissonance, the victim may begin to identify with the captors.
Cognitive dissonance is an uncomfortable feeling caused by holding two contradictory ideas simultaneously. The "ideas" or "cognitions" in question may include attitudes and beliefs, the awareness of one's behavior, and facts. The theory of cognitive dissonance proposes that people have a motivational drive to reduce dissonance by changing their attitudes, beliefs, and behaviors, or by justifying or rationalizing their attitudes, beliefs, and behaviors.
Dissonance normally occurs when a person perceives a logical inconsistency among his or her cognitions. This happens when one idea implies the opposite of another. For example, the doctor says that one can never recover from autism could be interpreted as inconsistent with parental instinct to do everything possible to save a child from suffering. Noticing the contradiction would lead to dissonance, which could be experienced as anxiety, guilt, shame, anger, embarrassment, stress, and other negative emotional states. When people's ideas are consistent with each other, they are in a state of harmony, or consonance.
A powerful cause of dissonance is an idea in conflict with a fundamental element of the self-concept, such as "I am a good person" or "I made the right decision." The anxiety that comes with the possibility of having made a bad decision, witnessing a child continue to suffer, can lead to rationalization, the tendency to create additional reasons or justifications to support one's choices. A parent who just received a their child's diagnosis of autism might decide that since they were told that there is nothing that they can do, and that doing anything to attempt a rescue may cause their child undo suffering. It would likely reduce dissonance and make the person feel better to accept the do nothing attitude. Dissonance can also lead to confirmation bias, the denial of disconfirming evidence, and other ego defense mechanisms. To me this seems an extremely likely scenario to what we see going on in the supportive comments of these articles.
Perhaps it is a self defense mechanism, fight or flight primal instincts, survival, God knows it's a hard fight, why not run from it? So if you do run, then why not rationalize why? And while you are at it, identify with autism, be it's buddy, welcome it into your life, it you are nice to it maybe it won't eat your child and ruin your life.
Or
Fight. Believe our kids can be rescued, helped, saved from autism and it's destructive wake.
I guess a question would be, how do we reach these scared parents when their fears are reinforced by the propaganda spread in articles like the recent ones in Wired and in The Tribune? I know my very first phone calls two years ago were to the major autism organizations looking for help. I propose we get involved with as many of them as we can, get inside them and represent the hope there is out there, support those making the efforts to recover our kids, reward, lobby and push for sympathetic political candidates and hold their feet to the fire. We are an army, there are a bunch of us, we can make this happen.
Posted by: bensmyson | November 23, 2009 at 12:00 PM
So...Trine is good friends with Alison Singer. Why am I not surprised that woman probably somehow had her hand in this? I think it is clear that she has washed her hands of her child in order to focus on her own twisted agenda. I am really sick and tired of her doing everything in her power to try and show parents who follow biomed protocols and who think vaccines are NOT God's gift from big pharma and Offit are somehow nuts. Singer is such a pathetic person. Get a life Singer.
Posted by: Janice | November 23, 2009 at 11:15 AM
The more I learn, the more I see that the pharmaceutical industry is truly evil. There is no other word for it. They have destroyed more lives than Hitler, Stalin and Mao combined
Posted by: julie | November 23, 2009 at 11:07 AM
Thank you Teri and A of A and team for giving the Tribune the facts. Many of our kids are getting better using evidence based interventions...they may not be FDA cleared but science supports their use in many cases. My entire family is being healed from allergies, asthma, ADD, autism and cancer using 'alternative' biomedical treatments supporting DNA methylation defects. The transparency of the anti-biomedical establishment is really magnified when a publication/reporter tries to write an article such as this. Why don't they just title the article, "Hey Everyone, Big Pharma really wants a piece of that $4 Billion Natural Health Market!" Better yet, if they can treat the myriad of autisms and the medical symptoms of autism with a pill that they can make tons of money...no thanks, been there done that. Four years of Abilify gave my son borderline diabetes and further regression. Once we stopped the drug, started chelating his high lead and mercury, fixed his gut, repaired his immune dysfunction and supported his methylation pathway---surprise! He began speaking in sentences!
Posted by: Lisa in Texas | November 23, 2009 at 11:07 AM
In my view, Leventhal held back any innovative autism research in Illinois for years and years in favor of his psychatric anti-biomedical go slow approach. I was personally delighted when he lit out for New York.
Rather than research, his accomplishments seem to focus on getting on and controlling the agenda of any Board he can as well as receiving "awards" for his "body of work". Those Boards are closely interlocked and mutually supportive.
The guy has a fantastic Rolodex, works it hard, and apparently has a new, big national agenda, given the move east. I'm not surprised that the Tribune brought him in. He's been their "go to" guy many, many times before.
Posted by: Dadvocate | November 23, 2009 at 10:39 AM
Hello AoA,
The Autism community is on to something and the Pharma police is going all out to prevent the word that Autism is treatable! Chelation Therapy works for other diseases such as MS and maybe even cancer. The MS Community is going crazy right now because MS is treated using Chelation Therapy and angioplasty.
http://www.theglobeandmail.com/news/national/researchers-labour-of-love-leads-to-breakthrough-in-treating-ms/article1372414/
A quote from the link above:
"Fighting for his wife's health, Dr. Zamboni looked for answers in the medical literature. He found repeated references, dating back a century, to excess iron as a possible cause of MS. The heavy metal can cause inflammation and cell death, hallmarks of the disease. The vascular surgeon was intrigued – coincidentally, he had been researching how iron buildup damages blood vessels in the legs, and wondered if there could be a similar problem in the blood vessels of the brain.
Using ultrasound to examine the vessels leading in and out of the brain, Dr. Zamboni made a startling find: In more than 90 per cent of people with multiple sclerosis, including his spouse, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not.
He hypothesized that iron was damaging the blood vessels and allowing the heavy metal, along with other unwelcome cells, to cross the crucial brain-blood barrier. (The barrier keeps blood and cerebrospinal fluid separate. In MS, immune cells cross the blood-brain barrier, where they destroy myelin, a crucial sheathing on nerves.)"
Maybe the Chicago Tribune can start to interview this chap and see if his theories are full of holes when 73% of patients no longer have symptoms.
Chicago Trubune is on its way out and I promise to use their article for toilet paper!
Posted by: Elucidatus | November 23, 2009 at 10:00 AM
Benedetta, I just have to respond to your comment about Universal Health Care. In Canada, where we have universal care, no dr. would refuse to do a strep test because he/she felt it was superfluous. I have had two different dr.s here and seen many others (walk-in clinics) and I honestly can say that that is not typical of the attitude in universal health care. I honestly believe it is the only decent option. No doubt it can always be improved but it is simply the right thing to do.
Posted by: jen | November 23, 2009 at 09:46 AM
In Illinois, there are good doctors and researchers.
However, there is a lot of political will against the message that "autism" may be a result of a related medical condition that once treated - improves cognition and behavior.
I do believe that science should be allowed to move forward on the medical issues and good doctors are allowed to treat based on the individual and best practices - that many children and persons will benefit.
Please do not block the research progress on Gastrointestinal, immune, and metabolic pathways.
Posted by: science | November 23, 2009 at 09:16 AM
This morning the news said that 75 percent of our young people that are willing to serve in the military are unable to serve!!!!Goes back to a comment that was already made here at the age of autism!
On top of all that
I just read someone's response from the UK on another web site. Their child sounds like it has Kawasaki's but the doctors are so certain it is strep, and the policy is not to do unnessacary test that they did not even test for said strep!!! Talk about the disadvantages of Univerisal Health Care! Scary!
Democracy seems to have a lot of enemies now a days. But who knew it was the health industry that would do us in.
I am so impressed with this article. There is hope when there are still people out there that are willingly to find out the motives and the whys a newspaper has an opinion on a subject.
Posted by: Benedetta | November 23, 2009 at 09:15 AM
Is it me being cynical or is this just a good old "follow-the-money-trail" story? In other words we come full circle from “lets spend few more millions on the elusive gene hunt” to “in the meantime lets make some real money selling drugs that mask autism”, through old friend dr Leventhal, from the old gene-hunting-drug-developing fraternity. With Tribune firmly in the middle.
Pennsylvania just had a very close look into autism numbers amongst its population and found "the total amount of children and adults with autism to be DRAMATICALLY INCREASING". “The rising number of autism cases was larger than originally thought” and the number expected to continue to grow. http://tinyurl.com/ykn3be4
So while PA Governor’s and state officals “sense that Pennsylvania FACES A VERY REAL CRISIS was confirmed", we have on the other side Leventhal and his merry team of denialists continuing their ridiculous gene hunt and coming up with ridiculous band-aid ‘solutions’.
And Tribune editorial policy, instead of being geared towards finding out what on earth is causing this horrifying increase in autism, and ways of stopping and reversing the damage, holds secret meetings with people who deny there is a problem in the first place. The paper and the reporter in question have sold her souls to the devil. I sincerely hope that some of the increasing number of children suffering indirectly as a result of their actions, and dying in droves from autism-related seizures and various preventable accidents (I will not divulge in the latest study on significantly larger numbers of deaths in children and young adults with ASD compared to healthy population, as the revelations are frankly too depressing) do come back to hound them in their sleep for the rest of their lives.
Posted by: Natasa | November 23, 2009 at 07:38 AM
Excellent piece Teri!
Trine is a hack with an agenda, the worst type of journalist. Her article reads as if it was written by a angry 5th grader or Maury Povich.
Trine is also close friends with- who else- Alison Singer. Singer probably set up the whole thing and made the outline too. However, Trine did Singer no favors by writing such a bizarrely partisan piece, nearly devoid of fact, driven wholly by emotion.
The article is reads like desperation. It's a trainwreck.
Posted by: Katie Wright | November 23, 2009 at 07:18 AM
Teri,Ed,Kim,JB,Mark,Dan I don,t know how you guys are able to write to or about these people. I have become more clinical and cynical since my boys were diagnoised in 06. I have tried to respond to all sorts of articles and people only to become angered. Thier believes are written on the back of their paychecks how else can you explain thier lack of research on recovered kids.Thanks for all that you guys do for our kids.Dave Troutman
Posted by: David Troutman | November 23, 2009 at 07:15 AM