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.
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.