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Over this past week, a journalistic investigation has for many, dropped the final bomb in a long and bitter war. It was a war against the drug companies. Vaccines were thought by many to be the cause of autism. The original research which started this claim, was unscientific to the point of being fraudulent. Perhaps the controvery made vaccines safer and made doctors more aware of secondary consequences, but we did not find the cause of autism. But it also directed research in the wrong direction and made steadfast adherents to a sceintific fraud.
There are a number of troubling questions that come out of this affair. Why was such misleading work done in the first place? Why did the medical profession not catch this fraud in the peer review process? Why, when it was becoming increasingly clear that it was fraudulent, did so many people have a vested emotional interest in not hearing the other side? Why did so many people need the vaccine blame story to be true?
I don’t have answers that are definitive, but I have some opinions and suspicions.
I think it is easier when dealing with a really difficult and painful situation to blame somebody, particularly a corporation. I remember at the time, commenting to my wife, after we had seen a televised debate between doctors and a certain Hollywood actress/model on Larry King Live. The bitterness, the absolute certainty, and the disdain the celebrity had for the scientists was palpable. It was not a debate at all, but rather an emotional rant. I turned to my wife and said, “I think it is hard for beautiful people, with everything going for them, to deal with the stark inconvenience of having an autistic child. This is not supposed to happen to beautiful and famous people. It is so unfair.”
But in fact it has happened to a lot of famous people, but only a minority seem to have taken such a public and bitter stand. It is clear that some people need to blame something for the injustice of autism.
Well, it is unfair. But if you can blame a company, it is easier than trying to understand why the cosmic roulette wheel fell randomly on your number, and not somebody elses. And heaven forbid, it is easier to blame others than face that it may be more than just a random act of nature, but in fact, possibly caused by your own genetic endowment.
I felt sorry for the woman, as she clearly was in pain. But, I think it is hard to come to grips with autism when you are filled with venom for a corporation and the medical profession.
Maybe even more is going on here. Such attacks serve certain other interests. The plaintiff bar certainly is to blame in many cases for affixing blame in order to win money from companies and governmental entities. On the heels of the autism news came studies that undermine the fury directed against Pacific Gas and Electric made famous in the film Erin Brockovich.
Lets face it: bad things are done on occasion by companies and governments and lawyers are needed. However, sometimes the system in the US lets lawyers go over board. As for Hollywood, it can’t seem to deal dispassionately with any scientific issue whether it be cancer clusters or nuclear power. Good science doesn’t make for dramatic presentation whether in the courtroom or on the silver screen. You need someone to blame to sue, and you need someone to blame for a film script. So, some people need the hysteria to get the money generated by the legal process or to make a good drama.
I think blaming identifiable entities also lends itself to collective action. It is hard to raise money unless you can gin up a degree of hate, generate conspiracy theories , and or allege malfeasance. It is easier to ask a large donor for money, or ask members of a group to demonstrate, if the action can be directed against someone or something evil. Imagine trying to form an organization to battle cosmic injustice. Who would you sue? Who would you demonstrate against? What remedy is to be sought if the cause really is just plain random luck? Don’t we all ask at some point “why me’?
If you can’t answer that question it is hard to form an organization to fight whatever " it" was that caused this condition to happen to you.
Finally, I think walking around with a constant internalized anger, and agenda to build a movement distracts from the most vital task at hand. At present, we don’t know what causes autism. I know, I don’t know. Why did so many people need to know for sure somebody caused this to happen to their child?
At some point, I realized that that I did not know what caused my son's condition and that he would not be the son I expected, and that our family and lives would be irrevocably affected by his condition. I hurt, I cried, and anguished at the injustice.
Then, I decided, yes decided, that I did not have the answers to these cosmic questions. The only thing I could control was my reaction to these circumstances. I was not going to leave my wife, I was not going to leave my life. I had to learn to live with it without knowing the reason I was selected for this challenge.
One thought I have had, that is totally unscientific, is God selected Me because He knew I could deal with it. I take it that if He has confidence in Me, then I need confidence in Me.
You just have to decide you will do everything you can do, you will dig as deep as you can, and decide to be happy. Incidentally, this is a process many people go through, who experience a wide range of issues beyond autism. We are not alone. As Abraham Lincoln, who was surrounded by personal and collective misery put it , “A man is as happy as he chooses to be.”
I am not an expert in this process. And I do know from personal experience how difficult it is. Hopefully my wife’s writings are of help to each of you. I just know that building up a lather of hate, and finding some external entity to blame, distracts the individual from “the happiness process.”
For a moment , just think if the claims were true? Let us suppose that as an unintended consequence of mixing propellants for vaccines for whooping cough, an unknown side effect was discovered that hurts a small fragile population. The practice is stopped and fewer cases develop from this believed source.
Well, you still have the autistic child to deal with, don’t you? Will your rage against the companies that did this serve you in your long journey to love and care for this child? Will your rage help your marriage or will it contribute to its dissolution? Exactly how would this rage serve your personal struggle at all?
Perhaps we should deal with autism as a condition with unknown causes and focus on doing all that we reasonably can for our children while working on making our own lives as happy as possible. Wouldn't that be our goal if we did not have an autistic child?
Neland Nobel, guest blogger, Gayle's husband
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