Read Part 1 HERE.
By Kent Heckenlively, Esq.
As somebody who regularly writes about autism issues, I feel a responsibility to the families of children with autism. I feel a responsibility to those who search for an answer and also those who are on the very cutting edge of solving this problem. Let there be no doubt. I believe this problem WILL be solved one day. And it will be done safely.
I must confess it's confusing to me when journalists like Trine Tsouderos and Patricia Callahan in the November 23, 2009 article "Autism Treatment: Science Hijacked to Support Alternative Therapies" seem to have no such feelings of responsibility or even intellectual curiosity.
I'll begin with the first part of the article. It describes how Dr. Carlos Pardo and his colleagues at Johns Hopkins found neuroinflammation in the brains of people with autism who had died in accidents. This research was published in 2005, nearly five years ago. Do they have any additional information since that time? Is anything imminent? Additionally, the article goes on to say "the scientists did not know whether the inflammation was good or bad, or even how it might relate to autism."
I understand in the scientific process you may not definitively know the relevance of a finding, but you should at least have a general opinion as to whether something is good or bad to spur further research. How about this? Since autism is not a normal state, the finding of something so abnormal as neuro-inflammation may indicate a clue as to the condition. Would that be too great a leap to make? Yes, we understand that a fever is a positive response of the body to an infection, but in and of itself it is not a good thing. It is fighting off a bad thing. Too high of a fever can damage the body.
Further on in the article it's reported that Dr. Andrew Zimmerman of Johns Hopkins says that meddling with neuro-inflammation could be a terrible mistake as "it may actually be an attempt of the brain to repair itself."
Which begs the $64,000 question of all autism research itself. What is it that's damaging the brain such that it needs to "repair itself." Shouldn't a curious reporter ask these questions? Apparently Tsouderos and Callahan didn't.
A couple possibilities present themselves. Trauma can cause inflammation, like when you hit your knee and it swells up. There can also be infections which cause inflammations, toxins, or a misguided immune system response.
Considering the way Tsouderos and Callahan bash parents who try alternative methods it might surprise them to know I have a copy of Zimmerman's book "Autism: Current Theories and Evidence" and consult it quite often. Especially intriguing is the chapter by Dr. Martha Herbert of Harvard University entitled "An Expanding Spectrum of Autism Models: From Fixed Developmental Defects to Reversible Functional Impairments". On page 446 of Zimmerman's book, Dr. Herbert writes:
"Toxicants, autoantibodies, and infectious agents may not go away after the exposures during critical periods of development, and furthermore may continue to accumulate, or even arrive in the early postnatal period for the first time. For example, heavy metals such as lead, cadmium, mercury, or other neurotoxicants (such as polychlorinated biphenyls, pesticides, and air pollutants) can penetrate the nervous system. Once there, is it possible for them, by various mechanisms (e.g., organic mercurials that are de-ethylated or demthylated in microglia in the brain, yielding inorganic mercury) . . . to promote an oxidative response in these cells to stimulate a cytokine/chemokine inflammatory response within the brain. This effect may be long lasting if the toxin also impairs the function of cells (macrophages or microglial) that would normally try to clear the toxin."
From other articles which have been published I understand Dr. Herbert feels all of her attempts to make the reporters understand these points was for naught, and she was reduced to sounding like an angry, defensive, and possibly litigious person.
For the short part that has been written about me, namely that I am using a specific doctor's protocol and part of the testing was carried out at Johns Hopkins I have a few comments. In her initial article (of which she sent only the portion pertaining to my comments) she had me claiming not only that the testing was done at Johns Hopkins, but that it was the "Hopkins protocol". My e-mail back to her made clear I did not consider this to be true and if I'd made that impression I was truly sorry. This assertion did not appear in the final article and for that I am thankful.
What she did not change though was her assertion that what I was doing was risky and ill-advised. When her e-mail made me aware of the general tenor of the piece I felt it was incumbent upon me to inform her that I'd had the protocol reviewed by my daughter's neurologist (head of neurology for northern California Kaiser) for safety. My daughter's neurologist did not have any safety concerns for the protocol although she did not think it would work. My neurologist has actively assisted me in providing sedatives for the IV procedure.
Was this information not provided in the Tsouderos and Callahan article because it flies in the face of their narrative that we are attempting risky and unsafe treatments for our children?I'd like to think that coverage of such contentious issues as the cause of autism and its possible treatments would be balanced and fair. In this instance it seems the press has failed in this basic duty.
Kent Heckenlively is Legal editor of Age of Autism
A copy of my e-mail to Ms. Tsouderos is contained below.
Dear Trine:From what I've read of your article I think it's fine to take the approach you're doing, but it's unfortunate that there isn't more curiosity about the cause of the disorder and what some very high-profile people like Dr. Bernadine Healy have been saying about the lack of interest in TESTING the theory of a vaccine contribution to autism. These types of tests would involve biological testing on animals to understand how these viruses and toxins are working in living organisms. I have sent you some examples of research in this area.
On one point I must take issue with is my saying that the Hopkins researchers "have a protocol." If I did that was a terrible misstatement on my part. I have never believed that this was a "Hopkins protocol", simply that it was based on findings from the Hopkins laboratory.
As for the issue of safety, I ran this protocol through my daughter's neurologist, Dr. Jean Hayward of Kaiser, Northern California. I believe Dr. Hayward is well-respected in the community and it's my recollection that she was or is the head of neurology for Kaiser in northern California. After reading the literature on this subject she said she did not believe it would work, but had no objections to my trying the protocol.
I have to note a little question which should probably pop into your head about the inflammation found by the Hopkins researchers. I think you'd be hard-pressed to find a neurologist who would say that neural inflammation is good. It's been my experience that what researchers say privately to somebody like me varies greatly from what they may say in academic papers or to members of the press.
I hope you will continue your investigations of autism so that we may all know the answer to this vexing question.
All the best,