By Barbara Frischkin
February 19, 2009
As an Autism Mom, I spent last week with my head spinning. Ultimately though, I could see that the events - in a conflicted American court, a decimated American home and a misguided British newspaper - were all connected, albeit in a deep, unsettling manner. But one that also illuminates that the debate is far from over.
In America last week, our Vaccine Court very curiously threw a hearty dose of cold water over the widely reported connection between autism and vaccines. I use this phrase -- widely reported-- to emphasize that the connection between autism and vaccines has been spotted by multitudes of front line participants and observers -- parents and physicians who have seen children and patients fall apart after being vaccinated. Ignoring these eyewitness accounts is akin to dismissing testimonies from soldiers until those testimonies are "peer reviewed" by scientists who may have no first hand experience in war zones.
There is, of course, also the issue of conflict of interest. Or, as Jay Gordon, a California pediatrician with plenty of front line autism experience, put it in a recent newsletter: "The pharmaceutical industry controls which research gets into journals and which does not. This creates public perception of vaccine risks and benefits which may be at odds with what is actually observed in the medical community."
The Vaccine Court's decision, like so many complicated matters can be obscured by too much information and, alternately, clarified with a dose of simplicity. So here goes: This year the Vaccine Court, in looking at three specific cases, ruled that, in effect, vaccines and/or their ancillary, toxic ingredients do not cause autism. But last year - with evidence produced by a neurologist father and a mother who is a nurse and an attorney - the court ruled that, in effect vaccines could cause autism. Thousands more cases are pending which it why I believe this matter is far from settled. Ask any bookie: Second guessing an outcome with as many variables as this one is risky business.
As this was happening in the United States, in England a journalist reported that a certain gastroenterologist who treats children with autism - and whose license over there is under intense judicial scrutiny -- fabricated his data. There are, not surprisingly, counter allegations that the journalist strategically created some of the controversy himself so that his story would get more play. This does not surprise me.
As a journalist for more than thirty years myself, I never really believed, even in the pre-blogger days that any journalist was purely objective. Like those scientists about whom I just griped, we all bring some baggage to the table, overt and otherwise. What concerns me more in this case is not the lack of objectivity on the part of that journalist as much as the lack of common sense. After accuracy, common sense is what I emphasize with my college journalism students. You can't report out any field - be it battlefield or baseball field - without common sense.
Here's how that British journalist let common sense fly out the window in his quest for a sensational story: He questioned the gastroenterologist's accounts of parents who said their children had adverse reactions to the measles, mumps and rubella vaccination. Those accounts, the journalist wrote, did not jive with the supposedly confidential and protected medical records of other physicians.
Well, I had to slap my knee on that one. Did I read this correctly? How many times have any of us been to the doctor and reported symptoms which were never actually written down on medical records either because the recording physician was too busy, too tired - or simply didn't believe us? That this should be one of the bases of a heralded piece of "investigative reporting" downright astounds me.
Probably, it shouldn't astound me. The history of getting to the bottom of what causes autism has been littered with these lapses of common sense. In coming up with his long-discredited "refrigerator mother" theory Bruno Bettelheim's researchers asked mothers if they had hugged their babies. The mothers replied that they had tried but the children couldn't tolerate it; what we now identify as sensory defensiveness and a recognized symptom of autism. The researchers, though, simply noted that these mothers did not hug their babies and from there it was extrapolated that the moms were cold fish who had damaged their offspring. The mothers were sent to see shrinks. The kids were not treated for what ailed them and in many cases sent to Willowbrook or similar hell holes - and the science of autism was delayed for decades.
Complicating this British matter even more is the amazing allegation that the gastroenterologist in question, Dr. Andrew Wakefield, single handedly caused the return of measles by writing about his findings on only 12 children, 8 of whom did present with symptoms of autism soon after receiving the vaccine. Yes, there were more cases of measles reported after Dr. Wakefield's findings were publicized. But some of those children had been vaccinated against measles. And the numbers, heartbreaking though they may be, still paled with the autism epidemic and the heartbreak and yes, the deaths, it has caused.
My take on this: Fleet Street made Dr. Wakefield into a hero. And then -- because Fleet Street loves to taken away what it bestows, loves the movement inherent in that - it made that physician into a villain.
I'd say he is neither. I'd say that Andrew Wakefield is part of a cadre of hard working, well-qualified, learned, physicians and scientists who are responsibly trying to quell the autism epidemic by finding what has caused it. Vaccines are part of what they are exploring. But it is not all they are exploring. Dr. Gordon is in that cadre as is my son's physician Dr. Michael Elice of Woodbury, New York. Often, these physicians are at odds with the medical establishment, even though they can go mano-to-mano with any number of doctors when it comes to credentials.
I think what they'd rather do is find the right medicines to prevent events like the one in Ohio last week. A political science professor from Kent State died after sustaining injuries inflicted by her son with autism. I know many autism parents who have imagined this happening to them. I have. My beloved older son Dan is more than six feet tall and he weights more than 200 pounds. He is glorious in his strength but he is also tortured by his autism. Often, when he was younger, I would speak to him frankly even before a trip to the supermarket. "Dan," I would say. "We are going to do this and get home alive." There were times I wasn't sure if we would.
For years Dan was on Haldol, also known as Haloperidol, an anti-psychotic which ultimately can have serious side effects, particularly in the long term. But it was a one of those nightmarish kinds of balancing acts autism parents do all the time. Haldol enabled us to keep Dan living at home; to keep him and the people around him safe. But we knew that we couldn't, for the sake of his health, keep him on Haldol much longer. In recent weeks, Dr. Elice has helped us to take Dan off of this drug, replacing it with bio-medical interventions that deal with problems in his immune system rather than his brain. After more than a decade on Haldol, Dan is off if and he is sleeping well, going to his work sites - and smiling at his mother.
I know that the dead professor's son smiled at her. I know too that the doctors who are working to find a cure for autism -- the doctors whom the powers-that-be love to malign-- have these smiles from our kids in mind as a long term goal.
I don't think that is subversive. With the memory of that dead mother in mind, I hope in my heart in soul that the Vaccine Court, in its next ruling, agrees with me and that the court in Britain does as well. What happens in those courtrooms could have a chilling effect on research. Alternately, it could help our doctors to find a cure.