Since 2004, autism research has shifted away from looking directly at the population affected, with targeted research. This may sound odd considering how often we hear people or the media state, "Autism is genetic."
How could they determine it's genetic, if they didn't look directly at the population? Right?
The problem is related to what researchers are allowed to study. The Institute of Medicine determined that, in a 2004 report titled, Immunization Safety Review.
Marcella Piper-Terry explains this report very well in a lecture she gave. Who is she? In a facebook post, she explained her credentials by saying:
I want to also say that if it had not been for the way things happened, I would most likely have been at the CDC, working as a researcher. That was my goal. I earned my masters (of science) in psychology (took a dual track in clinical and experimental) and graduated at the top of my class. I received the National Psychological Foundation's Graduate Research Scholarship Award in 1996, for my master's thesis research. I was told not to expect to win, since it was very rare for master's students to receive the award because most recipients are Ph.D. candidates and the awards are for doctoral dissertations. I won.
I was a research assistant throughout my master's program, and participated in the design and implementation of original research studies, and am published as an author on research in peer-reviewed journals.
I applied and was accepted to George Washington University as a Ph.D. student, with full funding and a teaching assistantship. Then my daughter had a serious vaccine-injury after her kindergarten shots. I also had a grand-daughter born to a drug-addicted mother, and I went to court to get custody of her because she was in a dangerous, abusive living environment. Due to those two factors, I had to pull out of the Ph.D. program because I couldn't take care of two children with serious medical and behavioral needs and be a full-time Ph.D. student AND carry a teaching load all at the same time. So I chose the kids.
That did not affect my ability to research or write.
That's why I do what I do. I have these skills for a reason, and the things that happened to my daughter happened for a reason.
I admit that makes me biased, but my bias comes from experience - not from financial influence. To me, that makes all the difference.
I provided that background of who Marcella is, because I will quote from her again over the coming years
Now, to get back to the 2004 IOM Immunization Safety Review. Marcella states that in the executive summary of this report, the conclusions made were that the focus of autism research must be:
Marcella explains that the significance of population studies is that these studies cannot prove causation.
Remember, in Ch4: Part 1 I quoted an article which said, “If you do not find kangaroos in Alabama, it does not mean that kangaroos do not exist. Perhaps it is a matter of looking in the right place. What concerns me is that researchers are not looking, unless they know the answer would be favorable to vaccines ahead of time.”
The IOM’s 2004 report provides a perfect example of this reality. Although those words, "conduct population studies only," are not explicitly stated, if you read between the lines, that message is the official position.
Here is one excerpt as an example (emphasis mine):
…While the committee strongly supports targeted research that focuses on better understanding the disease of autism, from a public health perspective the committee does not consider a significant investment in studies of the theoretical vaccine-autism connection to be useful at this time. The nature of the debate about vaccine safety now includes the theory by some that genetic susceptibility makes vaccinations risky for some people, which calls into question the appropriateness of a public health, or universal, vaccination strategy. However, the benefits of vaccination are proven and the hypothesis of susceptible populations is presently speculative. Using an unsubstantiated hypothesis to question the safety of vaccination and the ethical behavior of those governmental agencies and scientists who advocate for vaccination could lead to widespread rejection of vaccines and inevitable increases in incidences of serious infectious diseases like measles, whooping cough, and Hib bacterial meningitis. The committee encourages that research on autism focus more broadly on the disorders’ causes of and treatments for it.
Dr. Bernadine Healy was the former Director of the National Institute of Health (NIH). The NIH is a USA federal agency, within the USA department Health and Human Services. In 2008 Dr. Healy provided an extremely important interview about the conclusions and direction given within that IOM report. PLEASE watch her 6 minute interview. In it, she corroborates exactly what Marcella said. She explains that she was shocked that the government turned it's back on studying autistic children directly, refusing to look at susceptibilities within the group, susceptibilities that might make them at risk from vaccine(s) or vaccine ingredient(s). And she was equally disappointed that the Government has instructed that only population studies are to be conducted.
After reading through the Executive Summary in the IOM report, the following questions remain for me: How exactly do you conduct targeted research to better understand autism, IF you must focus more broadly for the sake of public health?
If the government agencies are unwilling to closely and specifically study those affected children, because they are too concerned that universal vaccination strategy might possibly be rejected through such scientific inquiry and discovery, then aren’t they very clearly stating that fear, NOT SCIENCE, is guiding public health policy.
Reflecting back on the kangaroo analogy again, of course it is important to not only look in the right place when conducting research, it’s also important to use the right methods during that investigation. Right now, the media and health authorities are saying, “The science is settled, kangaroos do not exist. We know because we’ve extended our search beyond Alabama. We’ve now searched the ENTIRE world extensively, multiple times now, and we’ve still found NO EVIDENCE of their existence." But what they didn't make clear to the public in such a statement, about those "extensive" kangaroo searches, is that those searches FOCUSED MORE BROADLY, and were conducted from an airplane flying at an altitude of at least 30,000 feet.
If you VALUE science, then you must advocate for the scientific discovery process, even when that process and that targeted work takes us into a scary unknown territory, a territory that might unravel our very core societal foundations and beliefs. The UNKNOWN is scary, sometimes absolutely terrifying, but once we are educated and the unknown becomes better understood or known, fear usually dissipates and options and solutions present themselves. Until we are educated though, there are no options, there are no solutions, and all that can remain is fear. That’s our current reality. It's impossible that good things will result from a combination of fear, procrastination, denial and avoidance. Therefore, it’s time that we change course, it’s time that we face our fears, and it’s time we start diving deeply into the work we’ve avoided doing for way too long now.
CONTINUE to the next article: Ch4: Part 4
Lecture by Marcella Here – she speaks about the IOM report at the 3:00 – 4:20 mark
MUST WATCH – 6 minute Interview Here with Dr. Bernadine Healy, former Director of the NIH (The interview is in English)
Executive Summary, 2004 IOM the Immunization Safety Review Committee Here
Internet Image of Dr. Bernadine Healy, former Director of the NIH