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CHAPTER 5
Doubts....
Having outlined the signs my own son exhibited, and reading through my son’s medical files as I prepared to write this book, I now looked back and wondered…how could so many signs have been missed…and by so many?
Interestingly, Fred had told me that about a year earlier, when he had suspected something was wrong with Zachary, he had actually mentioned the word “autism” during a couple of visits to the pediatrician, visits I had not gone to since I worked in downtown Chicago and the pediatrician was only a block or so from Fred’s work location. He told me how on one occasion, the pediatrician just gave him a funny look and just kept talking, as if the “word” had not even been mentioned. He did not acknowledge the word “autism” had even been uttered, did not go into any conversation about autism, did not come out and say: “what makes you think he is autistic?”... nor did he say: “no, he does not show any signs of autism from what I can see in his chart” – nothing, not a word!!! On another visit, again Fred had raised concerns. He was “reassured” that “boys were slower” and that there probably was nothing to worry about. I requested a copy of Zachary’s medical records. NOWHERE in Zachary’s entire medical file was the term “autism” noted. I would think that any COMPETENT doctor would have made a notation to that effect if a parent even suggested a possibility of autism existed. But, no....NOTHING!!!... and Zachary’s FIRST BLOOD TEST (the one taken at his birth) WASN’T THERE EITHER!!!
Sadly, I truly wondered whether Zachary’s clinic suspected autism but wanted to force our family to go somewhere else because we were “costing them too much money”. After all, they were part of this PPO/HMO program and only made so much money per child each year, regardless of whether or not they saw the child. The fewer times they saw a child, the less testing needed, the more profitable that child was for the clinic. Zachary was always there. Had they seen the problem but just never admitted it? I truly wondered. Fred was probably right. When you wanted the “real answer”, look for how the “almighty buck” fit in and you would probably find it. That, in too many situations in life, was what it usually boiled down to. Doctors were expected to turn a profit… their employers have stockholders and kids like Zachary did not bring in the bucks, they just showed up on the expense side of the balance sheet.
The fact was that Zachary’s chart, when taken altogether, screamed of signs of autism. Instead, the pediatrician successfully lulled Fred and me into thinking there was nothing wrong, that boys were often just slower. You would think that any competent doctor would have at least documented the fact that a parent suspected autism and requested screening for autism be done. After all, there was a developmental test that could be given to eighteen month olds to screen for such problems.
Yet, that screening was not offered... nor was it even mentioned. Special tests and “all that good stuff” would obviously have further diminished clinic profits. I only learned about that test after we had figured out Zachary was autistic and we researched autism on our own.
As we began to question things, our suspicions were further aroused. Certain things in both Zachary and Anika’s medical records confused both Fred and me as we read their files. And, why had it taken three weeks to get a copy of our children’s records? The clinic’s answer to us when questioned about this was that they were “understaffed”, yet, when we offered to come in and photocopy the records ourselves, they said that was not allowed. Why not? They were my children’s records. I had a right to see them. And if they were so understaffed, why could I not come and copy them myself?
Although I had no way of proving this, it was my suspicion that the reason it took three weeks to obtain Zachary’s file was because the clinic went through the file before it was released to a parent to remove any “damaging” information or “white wash” the file as I called it. When we received the file, nowhere in it was there any mention of Fred using the word “autism” in his questioning the pediatrician. There was one comment in the file that Fred and I both caught and neither of us remembered such a discussion even taking place. It was a comment to the effect that the pediatrician had asked us to “count” Zachary’s words and get back to him in a few weeks. Later in the file, there was a comment that we “never got back to the pediatrician” with the count. Fred and I absolutely did not ever remember such a conversation...and, had one occurred, why would the pediatrician not have brought it up again and again with each passing visit? “Patient File White-Washing” was the only answer I could come up with. That conversation never took place. Given our concerns, we certainly would have remembered it!
But again, how could I prove any of this? I could not, nor did I have the time or the energy to do that. Looking to blame someone, to scream “incompetence” or to yell to the pediatricians “you knew it all along” was not going to change my situation. I had to focus on Zachary. I learned from this experience though. In the future, I would NEVER take it for granted that my children’s medical records accurately reflected my concerns. I would request copies of records whenever something critical came up. That is the lesson to all parents here.
If a doctor were not willing to provide my child’s file within a few days, I would go with another doctor. It did not take three weeks to run off a file copy…not unless someone had to “review it” prior to sending it on to a parent!
As I researched autism on the Internet, I found more stories of parents who discovered the same situation for their children when it came to the notation of parents’ concerns in a child’s records. Parents whose healthy children had died within ten to thirty six hours of receiving vaccinations, for example, were told there was no connection and nothing had been recorded about the parents’ suspicions of a “link” in the child’s records. Parents whose children seemed to suffer all kinds of adverse effects after vaccinations were told that there was no connection. Parents whose perfectly healthy children had died up to ten days after receiving vaccinations and who had seen rashes on their children shortly after the shots were told by medical examiners their children died from “undetermined causes”. Parents whose child had died at nine weeks of age received autopsy reports showing their child to be only five weeks of age (thus, the child would have received fewer vaccinations, at least in theory). Parents whose children had died from what they believed were causes related to vaccinations who were told their children had died from SIDS. The Internet was polluted with such tragic stories.
Of those parents whose children were diagnosed with autism, many felt that the symptoms surfaced right around the time of vaccinations, some within days, others within a week or two. I had never believed that vaccinations were the actual cause of Zachary’s autism, but perhaps, for some of these children, they were. I had always believed Zachary must have had a genetic predisposition to autism, but I certainly understood the suspicions of other parents.
I did more reading on vaccinations, in general, and I found something very troubling. The “rubella” part of the MMR2 (Measles, Mumps, Rubella) vaccine a child received around the age of eighteen months was made from the cells of an aborted fetus, a strain of cells that had been kept alive in labs for over thirty five years. The child from whom the cells were taken to produce the “rubella” vaccine had been aborted in 1964. I could not believe what I was reading. No one had EVER informed me of this. Did people even realize this?
I called the manufacturer of the MMR2 vaccine at their National Service Center (800-672-6372) on November 29th, 2001 and asked them to confirm this information... Merck’s Service Center did that...they confirmed this was indeed true. I asked that the information on the MMR2 (the current vaccine given to children) be sent to me in writing. In addition, I asked how long this particular vaccine had been in production. The representative stated that MMR1 (the first form of the vaccine) had stopped being produced in 1981, twenty years ago! The second, MMR2 had come out after that. It was recommended the vaccine be given to children ages twelve to fifteen months and again prior to entering elementary school. I asked if the vaccine was available in “single doses” so that parents did not have to give all three (measles, mumps and rubella) to their child at once. I was informed that the vaccines could be given in single doses but that currently, those supplies had been depleted and had to be re-stocked. The representative could not tell me when the “single dose” would again be available nor could he tell me why doctors did not even mention the vaccine was available in three doses. When I inquired as to what had changed in the list of ingredients between the MMR1 and MMR2, nothing was mentioned about the “human cell” factor of the “rubella” part of the MMR2. Yet, on the Internet I found several references to the fact that the MMR vaccine (including the “rubella part”) had previously been made from chicken cells. I asked for a list of ingredients for the old MMR vaccine but was told that it had been out of production for so long, that the list was no longer available!
Interestingly, the new smallpox vaccine, made by another company, was also now made from an aborted human child (it used to be made from calf cells)... and the government was planning on possibly making it mandatory (they are still debating that)! It was also my understanding from having researched this also on the Internet that little research on humans had been done with regard to the new smallpox vaccine. There was recently talk of having a smallpox vaccine made of non-human cells. If two versions of the smallpox vaccine were eventually made, one would have to know to ask for either the “human cell based” or “non-human cell based” (if available) vaccine. Morally, I must admit that I had a big issue with not being told that a vaccine came from the cells of an aborted fetus. I guess it was like everything else... “buyer beware”!
For those who cared to read more about the subject of vaccinations, their unproven effectiveness, etc., a valuable book on the subject was that of Dr. Neil Z. Miller, Vaccines: Are they Really Safe and Effective? New Atlantean Press, P.O. Box 9638, Santa Fe, NM 87504.
Needless to say, there were literally hundreds of web sites on the subjects of autism, learning difficulties and vaccinations on the Internet.
My intent in this book was not to go into every theory as to the causes of autism, but rather, to make people aware of some of the very critical issues surrounding this illness.
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