Before we begin this review and debate, let's get my personal view on the issues forefront. I know without a doubt, Jadyne's autism has a genetic factor. My brother has PDD-NOS, my mother's brother spent his childhood bouncing in and out of hospitals for "problem behavior". The list goes down the line. I am very concerned of the genetic component to autism. I worry about my children's children. As far as environmental factors, and more specifically vaccines, I do NOT advocate that parents not vaccinate their children. However, I do find the debate relevant. I find the questions unanswered, the jury still out. Thus, I chose to be cautious vaccinating my last child, JJ. I delayed some of his vaccines in an alternative schedule. I do KNOW autism has a genetic component. I further believe strongly there is an environmental component unidentified as of yet. I do not know if vaccines is that element, but neither do the doctors or scientists! For that reason, the debate needs to continue, the research needs to continue, and parents need to remain informed and cautious with what toxins we introduce to our children's innocent systems. I choose to remain neutral and seek further investigation. My personal feeling is extremism towards either side would be disastrous be it the continuation of blindly vaccinating children without fully understanding the long-term effects of those vaccines or a pandemic of panic leading to a loss of our herd immunity from parents refusing vaccinations. Both will lead to the demise of our future generations. This is a very serious topic!
Staying in the middle isn't the popular approach. I've taken heat from one doctor but even more from other parents. Doctors frown upon their "expertise" being questioned. Some parents have made up their minds that these vaccines ARE the cause, and they discourage anyone vaccinating children. The bottom line is if the fact that I question doctors, that I demand more research, that I choose alternative solutions makes you think I'm a bad mother or don't care about my kids, well personally, I don't give a damn. I don't do this for your approval. Your approval won't make my daughter speak in sentences. Your approval won't ensure my neurotypical (to-date) son doesn't have a child with autism. Your approval or disapproval doesn't change this life for us at all. I do this for them, and as every parent out there, with or without a child with a disability, I do the best job I can with the information I have available.
On Thursday, February 17, 2011, The Dr. Oz Show aired a segment called "What Causes Autism?". The show did an amazing job of putting together a very diverse panel of physicians and scientists and parents. The result was a highly emotionally charged but very useful and informative debate. Even the audience itself was uniquely comprised half of parents of children with autism and half of parents that were concerned their child may have autism.
The audience led the most interesting part of the show. These parents aren't rolling over when they seek help and the door slams shut on them. No, these parents all still believe the answer is still out there, and they're fighting with everything they've got to find it. There was a sadness and an anger that resonated with each of the parents' statements. This disorder is damn tough on families! I don't know how it can ever truly be conveyed through words, blogs, videos, or any other form of media. No parent ever wants to hear their child even has strep throat, and those that have to hear their child has a lifelong condition are crushed. The news for autism is presented with even more devastating words, however.
"Your child has a lifelong condition. There is no cure. We don't know what causes it. We don't even really know what it is. It presents differently in each child, so we just call it a spectrum, but that makes it hard to even tell you what to expect. We can't. There is no medicine to help her. Some are being used to treat symptoms but no medicine has been developed for this disorder itself. Your child will live but will not have the ability to interact with the world we live, a permanent emotional vegetative state per se (so the doctors tell you, more on that in a bit!), and while we can't tell you what to expect in your child, we can state that statistics show an overwhelming probability that your relationships will end and you will be financially bankrupt."
I know when Jadyne was diagnosed with epilepsy, there was a different tone with the diagnostic team. They were confident, definitive, and they laid out a whole set of resources and solutions. I left the hospital with a bag filled with pamphlets, brochures, and even charts on epilepsy. Within a week of research, I would know all I needed to with what it was, how to treat it, and felt comfortable that treatment would ensure a normal life for Jadyne. This was not good news for Jadyne but the science was. There were answers. There were medicines, lots of different ones to try even. The insurance companies paid for the treatments. There was even a test to state without doubt this is what she has and this is the TYPE she has. Autism isn't like that. There is no test, there are no medicines, and the literature is minimal. In fact, the list is endless of parents just like me that are out there finding some medium to present this information because even just five years ago it was a struggle to find small answers. The parents are on the front lines, but they must have armor made of kryptonite because they don't go down, no matter how hard the blows are along the way. They stand and fight.
The professionals panel was diverse and very informative. I was excited to see Alison Tepper Singer, the founder of the Autism Science Foundation and mother of Jodi, a now 13 year old girl with autism. (We first met them on "Autism Everyday" when Jodi was eight.) Dr. Bob Sears, author of "The Autism Book" led the debate for the alternative treatment side. The audience cheered him in a few spots of the show. Dr. Ari Brown, spokesperson for the American Academy of Pediatrics, however, was met with let's say a less than welcome response. Dr. Irva Hertz-Picciotto from UC Davis spoke on possible environmental causes of autism. In addition, Dr. Oz had a team of pediatricians present for additional views.
Dr. Hertz-Picciotto's input was unimpressive to me. Yes, autism COULD be caused by mothers living close to the highway, or it COULD be caused by blow-drying our hair or eating bananas or skinny-dipping for all we know. I'm sure if you did a study on millions of things, your results would show an "increased chance" for autism in many brackets. I'm glad she realizes the cause of autism won't be one smoking gun, but her research just didn't have the wow factor I'd hope for with all the funding she receives from the National Institute of Health.
Dr. Ari Brown was definitely in an uncomfortable position. She was met full force with opposition by the emotionally charged audience. Honestly, though, my pity doesn't go far for her. This disorder does not need doctors and associations that have closed their minds to possibilities of the causes. Just because Dr. Wakefield's research has been proven fraudulent does not mean that vaccines still don't attribute to autism. One audience member made a great point by stating that mercury has been extensively researched, but what about aluminum? What about all the other things besides mercury in our vaccines? Dr. Bob Sears offered an alternative to parents of spreading out their child's vaccinations. Dr. Oz stated that he did this for his children. I will admit, I did this for JJ. Instead of him getting his shots on the standard schedule, after consultation with a pediatrician comfortable with alternatives, we chose to delay additional vaccinations until JJ was "out of the water" so to speak with an autism diagnosis. His doctor was comfortable with this, but warned before school-age we'd have to face the decision if the jury was still out regarding vaccines, but that this would at least give us some more time to "let the science catch up" as he said. I can't tell you if that's why he doesn't have autism and his sister does, but I can say I'm not sitting here wondering now if the vaccines caused his autism. No, we don't want to lose our herd immunity and not vaccinate any child. However, parents need to know the risks and have the ability to both ensure their child's safety from preventable diseases while not putting them at risk for a lifelong condition.
I don't care what you hear or read. I don't care how the APA or AAP fluffs it up.
THEY CAN NOT (and do not if you listen carefully) SAY WITH ANY GUARANTEE THAT VACCINATIONS DO NOT ATTRIBUTE TO THE RISE IN AUTISM
They can say Dr. Wakefield's research is fraudulent. They can say over 20 studies have stated that vaccines don't cause autism, but as Dr. Sears pointed out, 18 of those studies were conducted by pharmaceutical companies. I was irate at Dr. Brown's response to Dr. Oz's question when he pointed out there are studies and campaigns on newborn HIV and so many other things, so where is the effort into autism?! Her response was the dodging response of any politician. "It's there. We do care about kids." If it's there, why aren't you more specific? Truth is it's not there in any capacity that will have an impact for our kids. It's not financially reasonable for the medical industry to spend money on research for a disorder and then lose money if a cause is found not to be treatable with their medicines and worse yet if the cause if found to BE their medicines. My response to that is simple. I don't care about the medical industry's finances anymore than they care about the financial bankruptcy of all these families with autism. Fix it!
Dr. Bob Sears gives us all hope that some doctors still seek truth. He offers patients alternative vaccination schedules. He encourages a gluten-free/casein-free diet. I'd take any of my kids to him with confidence! I love doctors that say, "We just don't know." How about it? We just don't know. That's the truth. The truth is not a doctor trying to strong-arm a parent into a decision by stating results of studies that suit their viewpoint. The jury is still out. That's the truth. So while we continue research, let's err on the side of caution.
Alison Tepper Singer was my favorite part of the show. I can't say I disagree with one thing she said. She respects the science, studies the science, works for new science, and she also lives this life every single day. She has a unique position of seeing both sides of the debate with a clarity we could all only dream. I feel confident her research will lead to answers. I urge anyone to donate to the Autism Research Foundation.
Autism Speaks declined to go on the show because they wanted to talk about insurance reform and treatments for those that have autism. I will say, while I am tremendously grateful for Autism Speaks, I found this disturbing. I'd have to agree with Dr. Oz, "How do we get there unless we start here?" Autism Speaks's position reminded me of Jadyne's pediatrician when her tests results first started coming back, "Don't worry about why, just worry about treatment." If I had followed his advice, she still wouldn't have a diagnosis. Please understand the tremendous positive impact Autism Speaks has day in and day out. I in no way am bashing this amazing organization or their focus. However, I didn't find their response appropriate in this one instance. I believe Autism Speaks is a priceless resource for the Autism Community, and I would have liked to hear their part in this debate.
All in all, thank you Dr. Oz for leading this very balanced debate. The more exposure we have to these topics, the more people will care, the more people will act.