Two controversies are swirling in the autism world. The first is over the safety of vaccines as they may relate to the cause/onset of this life altering disorder. The recent airing of ABC's Eli Stone episode about a woman who sued a pharmaceutical company (and won) on behalf of her autistic son brought the vaccine Hatfields and McCoy's roaring into the headlines, even as the American Academy of Pediatricians demanded the program's censorship. (You can read about that HERE in David Kirby's Huffington Post piece.) The second is the whether or not there is any epidemic at all, brought up by Dr. Nancy Minshew, who runs the Center for Excellence in Autism Research at Pitt.
The media reports almost daily that drug companies have misreported clinical trial results, marketed ineffective drugs, and lied to doctors and consumers alike about their products' efficacy and safety. And yet we're expected to believe that the dozens of vaccines administered to infants and toddlers are 100% safe, 100% of the time, for 100% of children, and have absolutely no connection to autism. Man, that's harder to swallow than one of those horse sized prenatal vitamins the OB's dole out along with that mercury laden flu shot.
When I write about vaccines and autism and the desire for better safety testing, I often get the same response from people: "Do you want Polio back?" My instinct is to slap them. Such a stupid question. No one wants Polio back. But that question has led me to the question, "What if autism were contagious?" Would the response to the 1 in 150 rate of diagnosis change from, "Oh my, what a shame. We'd better learn how to diagnose it earlier." to "We'd better figure out the cause and come up with treatments immediately!" Would we go into attack mode as we did for AIDS, which in 30 years has seen great improvement in prevention and treatment?
If you think the photos of the old Polio wards are frightening, take a day off and go visit a classroom for children on the severe end of the autism spectrum. You'll see children who are ambulatory and yet cannot care for their most basic needs. They will require a lifetime of care. Can you tell me that these children are not as disabled as those who contracted Polio?
Then there's the "epidemic" question. It's as if someone at the top decided, "It's time to make autism appear to be less of a threat." following that Eli Stone episode. Dr. Nancy Minshew, who heads up a center devoted to autism, has changed her mind about the epidemic. She is quoted in an article in the Pittsburgh Post Gazette, "I used to think there were more cases [than in past years], but I don't think so any more." She is now convinced that the higher numbers are "not an increase in the number of cases, but are an improvement in recognition." (Is she kidding? I'm thinking of inviting her over for dinner so she can see the epidemic in action.)
Poof! Thanks to her words, the worry over autism has disappeared like Bruce Willis' hair. Whoopee! She also had the gall to say that autism used to be diagnosed as schizophrenia and that accounts for some of the diagnostic substitution. Oh? I wish I'd known so I could have named my girls Sybil, Sybil and Sybil.
Dr. Minshew happens to be on the Autism Speaks' Scientific Advisory Board. Autism Speaks was founded by Bob and Suzanne Wright in response to the crisis in rising autism numbers. Suddenly one of their top scientists says there is no crisis. Boy, autism sure looks like a crisis in my house. And at my kids' schools, where there are entire classrooms devoted to teaching kids on the spectrum. And at Barnes and Noble where books pop up like zits on prom night about all things autism.
Please tell me why our doctors and national institutions and even charities have abandoned children with autism, instead of setting out to conquer this neurological crippler. What if autism were contagious? Would our kids matter then?
Kim Stagliano is Managing Editor of AgeofAutism.com, a writer and the mother of three daughters with autism. She lives in CT with her husband Mark and the girls. She blogs at KimStagliano.
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Kim as usual, you are right on target and got a laugh in too. Thanks for hanging in there for our kids
That people try to dismiss the increase in autism burns me up. The increase cannot be due to misdiagnosis and other studies have shown this. As a parent to both typical children and an autistic child, I agree, Kim, that autism looks and sounds unmistakable. Even as adults, lots of people with autism are recognizable because of their mannerisms and behaviors, not to mention communication or lack thereof.
So, Autism Speaks is either doing exactly what they should - delivering an unbiased view and scientifically sound data - or they are being swayed. It's a tough call. But where is the plan for the kids who are living with this everyday? Why is there so little quantifiable research about what works? Why are there no advances in helping these people? What do we do when our kids become adults (or, god help us, we die?)??
Kim
Great post.
And you are absolutely right about classrooms with kids with autism. They are filled with children who are trying very hard to overcome very severe disabilities. There is an epidemic afoot and these kids are not getting the support from the mainstream scientific community that they so desperately need. Instead they and their parents and teachers are going it alone.
RE "we're expected to believe that the dozens of vaccines administered to infants and toddlers are 100% safe, 100% of the time, for 100% of children ..."
Actually, no one has said this is true. That's why the National Vaccine Injury Compensation Program (VICP) exists in the first place. Vaccines can have serious adverse effects in some (rare) cases. It's just that autism has not been shown to be among those effects. Pretty simple distinction.
Re "I could have named my girls Sybil, Sybil and Sybil."
Actually, multiple personality disorder is entirely different from schizophrenia. Again, pretty simple distinction. (Either way, i'm sure people suffering from those disorders appreciate the compassion in the name of a lame joke.)
RE "What if autism were contagious?"
It's not. So what's your point, exactly?
RE "we're expected to believe that the dozens of vaccines administered to infants and toddlers are 100% safe"
Actually, no one has said this is true... Vaccines can have serious adverse effects in some (rare) cases.
-----------------------------
Perhaps you can explain recent FDA warning that parents avoid giving children under ten, popular, over the counter, infant cough and cold medications?
The FDA warning was in response to a CDC study that identified 7,100 children A YEAR, received emergency room treatments for adverse reactions to cold and cough medications that have been in use for 30 years. The CDC also found 1,500 children, under two, received emergency room treatments between 2004-2005, with three recorded deaths.
What was the "cause" of death given the parents of those unfortunate children who died? What diagnosis were the parents given when their child received emergency room treatment?
I highly suspect the parents were not told their child suffered an "adverse reaction" to the medications.
"Whoopee! She also had the gall to say that autism used to be diagnosed as schizophrenia and that accounts for some of the diagnostic substitution. Oh? I wish I'd known so I could have named my girls Sybil, Sybil and Sybil."
Was this really necessary? Seems really cruel and insensitive to those dealing with this disorder. I'm sort of surprised you don't get that...
To learn more about schizophrenia visit
http://www.nimh.nih.gov/health/topics/schizophrenia/index.shtml
Great post Kim! Maybe there would be some urgency for treatment. For most of the focus is on denial, denial of a crisis, denial of it being a physical condition, denial of any cause. The question of infection is not be so far from the truth since it is an autoimmune condition, a whole body condition, maybe not contagious but definitely infections of yeast, bacteria, viruses and heavy metals are involved. But with all of the arguments of the word epidemic and fear of cause, no one is actually looking at treatment. Wake up people this is not a drill, it's real and way too many children are affected and their health being ignored. Unfortunately there are no real actions being taken and the urgency is ignored.
Sumocat
The genetic predisposition and all of the studies of genetics currently show well over 100 MUTATED genes that in most cases the parents DON'T carry! How is that purely genetic? They aren't getting it from their parents in this case, they're getting it by something causing mutation to their genes. I'd say all of the current genetic testing is showing us just how much autism is environmentally caused....
I never said it wasn't genetic.
Multiple possible variables always complicate finding the root cause of a condition or disease. It might be a better use of resources to focus more attention on therapies or cures.
Via modern computer-assisted imaging, look at what has seemed to work to re-route and re-wire brain circuits in the very young diagnosed with autism spectrum conditions, and people with brain damage resulting in autistic-like function.
I suspect television-watching to be one of the culprits. Crucial brain circuitry wired in the first three years of life is greatly affected by the amount of time spent in front of a TV screen. Whether it's the TV experience itself, or the replacement by TV watching of other common brain-building experiences (interacting with adults, watching adults & older children interact with each other, eating a meal around a table with the family, playing games...), who knows?
More studies in these directions, please...
luziannagirl, my infant sure must have been watching a lot of TV before he regressed into severe autism at age 8 months after getting a flu shot booster! Nope, sorry, no TV. He was a breastfed, attachment-parented baby with a stay-at-home mom, doting dad, and lots of social interactions and "brain-building" experiences, but unfortunately he was also getting some brain-destroying experiences in the form of regular vaccine shots.
I'm also wondering how TV exposure accounts for all the mercury, lead, arsenic, antimony, and aluminum that he tested sky high for? That must be one toxic TV set. Funny how the more metals we chelate out of him, the less autistic he becomes. Which funny enough has actually made him interested in TV for the first time. No, researching the TV habits of babies won't get us anywhere. Figuring out where all these toxins and metals are coming from will.
Dear readers,
I have presented evidence that autism results from maternal transmission of brain damaging viruses. The viruses evade elimination by the immune system through the deletion (or mutation) of the few critical components normally targeted by anti-viral lymphocytes. I have used the term "stealth adapted" for such viruses. Additional information on stealth adapted viruses causing autism is available at www.s3support.com
Fortunately, the body is not solely dependent upon the immune system for its anti-viral defenses. It can also utilize an alternative cellular energy (ACE) pathway to help overcome the cell damaging effects of both stealth adapted and conventional viruses.
A simple protocol has been devised that expedites the healing of skin lesions caused by herpes simplex virus (HSV) and herpes zoster virus (HZV). It also greatly reduces the frequency of future outbreaks of herpes virus infections. The studies are being conducted in a Progressive Medicine research clinic in Fort Smith, Arkansas.
The protocol was recently tested on three autistic children with very encouraging results. Parents of children with autism may wish to contact me via e-mail at s3support@mail.com for further details of this trial.
I am also interested in addressing the misinformation on autism that has been propagated, possibly inadvertantly, by both the Government and many of the major autism advocacy groups. When the available data are objectively considered, it is clear that Kim is actually correct: Autism does have a cotageous component. More importantly, this insight may help motivate those at risk for having an autistic child to take strong preventative actions. Kind regards, W. John Martin, MD, PhD. Institute of Progressive Medicine.
Great post Kim,since the CDC and the IOM do not know what causes autism perhaps we could get some attention and funding if we publicly ask the question: Is autism contagious? Let the government prove it is not.
Autism IS contagious. It's all part of the conspiracy.
Straw man argument anyone? The vast number of studies that seem to show no connection between childhood vaccines and autism are not the same sort as the drug safety studies you cite, nor are they mostly paid for by drug companies.
Here's my real question. Isn't this constant directing of the spotlight away from the likely genetic cause of autism impeding research that might help the autistic? Why are families so intent to diminish the evidence that autism is largely genetic? Your bio states you have 3 daughters with autism yourself. Doesn't that by itself suggest a genetic cause?
Do you get the impossibility of a genetic epidemic. Evolution does NOT hapen that fast. And yes there is an epidemic. My son is 30 with autism. When he was diagnosed, the #s were 4 in 10,000. I hardly ever saw another little child like my son. Now I see children like my son was ALL the time. And if you really want to get scared, think of those kids at 30, like my son, needing almost total support for the activities of daily living. If the thought of that much waste of human potential does not devastate your heart perhaps the cost of it will devastate your wallet enough to wake you up
"Why are families so intent to diminish the evidence that autism is largely genetic?" -- Perhaps because there is so much anecdotal evidence that points to the vaccines, and people are more inclined to believe what they see in person than what they read in a study. The experts dismiss anecdotal evidence because it lacks scientific controls. But if your kid is giggling and happy before receiving a vaccine, then stoic and glazed after getting it, the anecdote wins.
There are absolutely NO safety studies on the cummulative effects of administering so many vaccines to our babies. And can you name even one vaccine safety study that wasn't funded by pharmaceutical companies or someone with financial ties to them?
If autism is solely genetic and growing exponentially, we should all be running scared. At this rate, the time will come very soon when all of us will be affected. So don't fool yourself into letting the gene argument make you feel safe. Something terrible is happening to our children.
And please stop worrying about impeding genetic resarch by exploring environmental factors. Genetics research has received nearly all of the available funding for decades now, and we are no closer to the answers we need. It's time to change our tack and find out what's triggering this national crisis.
Genetic pre-disposition to environmental factors which trigger autism do exist. There was a body of study done by Mady Hornig at Columbia University turning on and off the gene in mice. Those mice had thimerosal introduced in proportion to mirror childhood immunization schedules. Presto! Autism like behavior in the group of mice whose genetic predisposition was controlled by said gene.
This isn't about bad luck. It's all about no care taken putting poison in the bodies of children.
The Federal government has the resources and the duty to bring us to the "whole truth." They refuse to do so because they already know what parents who were present at the crime already know.
The Courts will one day to force this outcome. Sadly, many, many lives have been ruined.
You will never ever know the pain of having a child who cannot function, or even know what day it is. Or, to live in a society which glady puts your loved one in a "warehouse", then you'll get it.
Kim is quite right. If autism were contagious it would be different.
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Posted February 11, 2008 | 10:10 PM (EST)