We are always encouraged to go ahead and just do it- that one person can make a difference in the world. “Indeed,” as Margaret Mead noted, “It’s the only thing that has.” Margaret Mead was one person who changed our views of culture. Einstein changed our views on space and time. J. Craig Venter is changing our view on the definition of life. Terman changed our view of intelligence. Newton changed our view of gravity. All movements forward that lead to greater and greater understandings. All who added to the knowledge that was then further developed.
And sometimes, one person can have a whole lot of…impact. Paris Hilton has changed our view of fame to… just showing up. McDonalds changed our view of food to… fast. Edward Bernays changed our view of psychology to one of… public relations and advertising.
Andrew Wakefield has, almost single-handedly, changed the conception of autism.
As almost everyone in the autism field knows, and many, many parents are aware of, Andrew Wakefield was a physician in England looking for reasons for the skyrocketing rates of autism. He, and 12 others, issued a paper in 1998 in the medical journal The Lancet that looked at laboratory results of 12 children with autism. It is enlightening to read the original paper. Although no definitive linkages between the MMR shot were found, they documented the memories of 8 of the parents’ concerns regarding the timing of the children’s onset of autism and stated that it appeared to occur near the same time as immunization, or after a fever that occurred at the same time of the shots. The group also noted that gastrointesinal issues appeared to occur at the same time for 11 of the children, and that there was a possible linkage between the shot, the autism, and gastrointestinal issues. Dr. Wakefield and his co-authors then recommended that the triple MMR shot be given in three separate doses spread out over time, rather than the single dosage and that further study be done on the impacts of the triple shot. They did not, at any time, recommend withholding immunizations completely.
And all hell broke loose in the autism world.
The government in England flatly refused to consider breaking up the shot, stating that there was more possibility of outbreak in the intervening time than any issues associated with autism. Families around the world seized on immunizations as a way of controlling autism and rates of immunizations decreased sharply, even as the rates of autism-and probably not coincidentally, measles- continued to rise. Hysteria on both sides rose, as the medical field dug their heels in and refused to consider any changes in the immunization schedules and the conspiracy theorists for autism claimed it was all a government plot.
I am amazed at the hysteria on both sides, particularly when, as a researcher myself, I know the level of scrutiny that I have to pass and the level of ethics that I have to follow.
Just the facts are damning. The twelve children’s medical records from their previous doctors did not match the medical records presented by the lab. Before his study came out, Andrew Wakefield was paid £400,000, or something close to $600,000 by a law group who were in the process of suing the British government for negligence over the immunizations- and the 12 children’s parents were part of this law suit. In addition, his lab was in the process of formulating a single-dose immunization for measles. Finally, one of his own graduate students said that data from the children’s gastrointestinal tests that did not support his hypothesis were thrown out. There were clear violations of ethical and independent research standards.
I want you to think about this- all of this hysteria, the lawsuits, the fear around the world that has come out of flawed data from 12 children and one ethically-challenged researcher. Even if you think he was set up, even if the other researchers were pressured to change their views, even if the drug companies are in cohoots with the governments, even if he was right– all of this comes from one source. One source. One.
There have been, of course- because of the hysteria, efforts to replicate his findings. We have found some tremendous things as a result. There have been some evidence that seizures are related to autism. There is some evidence that the same protein that regulates brain development regulates gastrointestinal health, although not necessarily directly related to autism. There have been a number of studies in countries around the world dedicated to finding the same results, only to fail… All of these studies could not, did not, have not found a link between immunizations and autism. There has been a tremendous amount of research on autism over the last 10 years, and because of one person’s impact, a large amount of research has gone into dispelling people’s fears.
All of those questions- Does diet work? What is the role of mercury in the environment? What genetic triggers are there for autism? What are the environmental triggers? How does autism impact the other bodily systems? What are some effective treatments? How much could have been done if resources had gone into finding something productive, building on someone else’s research rather than trying to dispell findings from one study? One study.
It is also important to know that to most of these researchers, who are toiling away, and certainly not making $600,000 for a single study, autism is a very, very personal area of study. “Research is me-search” said Bob Sternberg, a very influential psychologist. Those faceless, nameless researchers in the field of autism are studying it because they care. Because they too, want to know. And their results- even the puzzling, conflicting ones- are, most of the time, small incremental steps towards fighting… towards curing … towards coping with this- this thing, this disease, this condition, this way of being.
A friend of mine who is an expert in so many things, notes that a virus hurts its host, not because of anything that the virus actually does, but because of the immune reaction that is produced by the host. In other worlds, it’s not the cold virus that makes you feel yucky, it’s your own body’s reaction to the presence of the virus. Your own body is what is hurting you, not the actual virus. The response is more important than the actual event.
I know that parents tell stories to each other of how their child was triggered by immunizations. I know that it makes sense. I know that experience makes a “truth” so much more than a research study with lots of numbers and formulas. I happen to believe that chiropracty made a difference in my child’s autism because I saw, I SAW the difference afterwards. But I do not tell everyone to go and try sacral-occipital therapy because it worked for my child. I would want them to gather data and make a decision that works for their child.
Because the power of one has to be balanced with the experiences of many.