I have been trying to stay out of this one, but I think I am meant to write this, as it keeps “popping” 
back into my mind, so here goes. I think I understand both sides which I’ll explain. That is why I was really trying to stay out of it. I still am not going to give you a definite answer as to what you need to do. However, this week this debate caused two groups of otherwise intelligent, caring, autism advocates, to behave like two children in the sandbox fighting over a toy. One side resorted to an inappropriate posting of a picture on Facebook that further lead to more angry 
postings on both sides and some very inappropriate threatening posts. Thank God these were eventually removed. I am all about bully prevention and using technology appropriately, so I just cannot be quiet on this one. Otherwise, I would be the guilty bystander who does not speak up when they see bullying.
Let me start by explaining why I think I see the two sides clearly. First, I will explain why vaccines are important to me aside from the fact that I am a R.N. and my husband is a M.D. My oldest brother died when he was only thirteen months old of what was probably pneumococcal pneumonia. This deeply affected my mother and in some ways she never recovered. It was the second premature death of a loved one for her, as her father died when she was only sixteen of tuberculosis. Both of these diagnoses now have vaccines to help prevent them although the tuberculosis vaccine is not without side effects, so it is rarely given in the United States. My mother’s outlook on life might have been different if the vaccines had been available for my grandfather and older brother.
Now, I will explain why I understand the other side. I have personally taken two different prescription medications that have been pulled from the market, and I took both of them from the time they were newly on the market until they were removed from the market. Both might have put me at an increased risk for a stroke. Members of both sides of my family have died from strokes, so I am now a lot more cautious about taking medication that is new to the market. However, medication can and does save lives just like vaccines can and do save lives, so I do take medications when needed and I take my flu shot every year.
I believe in informed decisions and patient choices, but I also know that for vaccines to really be effective everyone needs to be vaccinated. However, I heard Jenny McCarthy talk on one of the morning shows a few months ago and I got the impression that she is not anti-vaccine. She is merely asking that the FDA really verify their safety and that vaccines for babies and young children be spaced out more. I can understand this especially given what I know of her son’s story. 
So, why is there bullying going on and why do we need a public service announcement at the movie theaters 
when this information has already been all over the news media and the internet? 
I really don’t get it, but I do get that bullying others only makes them angry and hurts your cause. It seems to me that we should all be on the same side. As parents, we also need to set good examples for our children.
Delightfully Different Life 
That first sentence should have said most parents of kids with Aspergers. I really need to get better about editing before I publish!
Not a problem! I think we all know about our brains and fingers not working together sometimes. 🙂
It is so interesting because most parents of kids with Autism I know say their kids seemed to be born with it…and most parents I know of the GI/seizure kids report normal development with regression….and most who report benefit with gfcf are in this second category. I think strong anecdote is foundational to good hypothesis, or should be. Yet, the most recent Autism/gfcf study excluded autistic kids with GI problems then concluded that special diets have no benefit in Autism. They used the entirely wrong population! That’s the danger in dismissing parental reporting as irrelevant. We end up with biased hypothesis. Then those results were all over the news and we for whose children gfcf is a dramatic lifesaver look at each other, hands in the air, saying, “huh?” This isn’t about ideology or wanting to be right. It is about after my husband and I die facilities not keeping our son on his medically necessary diet because “the studies” and him falling apart and being put on antipsychotics to treat a brain sensitivity to food. It is a very scary reality out there these days for those kids who have the more medical form of Autism.
Autism Mom Rising,
I understand what you are saying maybe more than some. When I finally got the right diagnosis for my daughter from a neuropsychologist, a psychiatrist asked me why I would want her to have Asperger’s when it couldn’t be treated with medication. Needless to say I was furious and we never saw him again. I get the parent frustration.
I suggest you find someone who you trust to advocate for your child and designate them to be your child’s guardian when you are gone. Both of my children are still under age so we asked two wonderful friends to do this, and I wrote a detailed letter along with the designation to help them through this if it is ever necessary. We are fortunate in that our daughter is high enough on the spectrum that she should be able to function as her own guardian when she is older. She is already learning to do this.
You should always follow your heart where your child is concerned and if enough people can get through to a reputable researcher you might be able to get them to do another study on the GI problems, but more importantly find a physician for your child who will listen to your concerns. My other thought is the vaccine issue has gotten mixed in with the GI issue and this has caused it to be a hot issue. People feel strongly that they do not want childhood illnesses to increase because of a small group who have scared people into not vaccinating their children. Unfortunately, diet issues are not a high priority for researchers and funding for research is limited. That doesn’t mean you can’t still protect your child. Best Wishes!
Sue
You are welcome and thank you for sharing your views. It is time both sides stopped fighting and really listened to each other. I attended Tony Attwood’s conference in October, and even he thinks regression autism needs to be studied more. He agreed that it is real. God Bless!
I think part of the anger is caused by the rise in childhood diseases. I know many are asking that vaccines be spaced out more and I for one could support this. I don’t believe vaccines caused my child’s Asperger’s, but who am I to say what caused someone else’s autism?
D.S…..thank you so much for this piece. It is truly a balm to my soul after these past few weeks. I share you concern about the slipping quality of evaluations for pharmaceuticals, as I too have a relative that took one of the meds that was later pulled. And recently there was an article about newer drugs being testing on indigent people in foreign countries where the rules are less stringent and some of some have died:
http://www.vanityfair.com/politics/features/2011/01/deadly-medicine-201101
Many Drugs For U.S. Kids Tested in Poor Countries:
http://www.reuters.com/article/idUSTRE67M1VO20100823
As for Jenny McCarthy, she has never changed her story regarding her son. If anyone can find a direct quote where she said her son has Landau Kleffner Syndrome I’d love to see it. That was a rumor started by a doctor who never treated Jenny’s child and the media picked it up. Besides, forms of Landau Kleffner can and do appear comorbid to Autism, as in my son’s cause.
I’m tired of all the fighting over this as well..It is ugly and mean and serves no purpose..I do however believe that Jenny McCarthy has done a lot of damage though. She has changed her sons story numerous times-and as for vaccines-she gives out misinformation. I wish celebrities would not take on causes like this..*sigh*
http://www.time.com/time/health/article/0,8599,1888718,00.html
Kathleen,
Thanks for stopping by. I think people need to realize that celebrities for the most part are just voicing their opinions. Unfortunately, too many people listen without doing their own research. Plus, I’m afraid medications that were pushed through the FDA without sufficient testing have not helped to instill confidence in the American people. This makes it easy for people to question the medical community and to listen to those who twist the facts.
I just hope people will stop being so angry and mean about their point of view. I want them to realize they are setting bad examples for our children when they resort to attacking others. Of course they aren’t the only ones to do this. All you have to do is look at the November elections to see our politicians do the same thing.
Sue,
I just saw it. Thanks for sharing it.
Here is the story
Researchers Discover Test That May Identify Autism Patients « CBS …
Dec 2, 2010 … Researchers from Harvard and McLean Hospital have developed the first biological test that uses MRI’s to measure differences in the brain’s …
boston.cbslocal.com/…/researchers-discover-test-that-may-identify-autism-patients/
Did you see that there is a test for autism on the news out of Boston?
Maybe they will actually find out the exact cause.
Sue,
I couldn’t agree more. The debate was related to autism spectrum parents who believe their children’s diagnoses were caused by vaccines. There was a group that convinced movie theaters to run a public service announcement about the danger of mercury from the vaccines causing autism. Another group convinced the theaters to cancel showing the announcements. The bullying began from there.
I should clarify the above statement. Not all parents, myself included, of children on the spectrum believe vaccinations caused their child’s autism spectrum.
As an Rn taking care of a very compromised child, I do my best by getting vaccinated so I do not endanger him…that included H1N1 last year. It is a personal choice, but also consider those you come in contact with…and risks to them when not vaccinating.
I find when there are two opposing sides to a debate …all are entitled to their opinion, but not to attack them personally…that is where the debate is lost. One can be steadfast in their convictions without being bullies.