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."
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.