A few weeks ago, I had the opportunity to speak on a graduate panel. I had been asked to do so by one of my professors in Educational Administration. I will receive my second master’s degree in education next week.
Back in November, I was in his class the night of the congressional hearings on autism. For the first time ever, I kept my phone out and peeked at the emails and texts coming in from friends who were there. I could hardly pay attention, and at one point, I did one of those weird silent “YEAH!” moves with my fist pumped at the most inopportune time. One of my classmates looked at me like I was nuts.
My professor made a comment that night. Something to the effect of never being able to Google his name, and how he could care less. He told us that if we really wanted to get into administration we’d better be ready to be disliked, to take a stand, and to fight for what we believe is right.
I snickered. Been there, done that, I thought.
Our task that night was to write about it, and so I did. I told the whole sorted tale of the last ten years of my life. How it happened, what I did about it, and where I am today. And then I submitted it hoping I wouldn’t get dropped from the class. You just never know what people are going to think.
When we got our papers back, he asked to speak with me privately.
Oh. Crap. Here it comes.
But I was wrong. He wanted to meet me for coffee and learn more.
I’ve long thought about the coincidences of autism. In fact, my very first editorial to my local newspaper back in 2005 was entitled just that, “An Unfortunate Coincidence”.
I called it that because that is how Harvey Fineberg, then president of the IOM, referred to it when he met with David Kirby on Meet the Press that year. Per his perspective, vaccines were nothing more than “unfortunate coincidence” when it came to autism.
I went through all of those coincidences in detail.
It was an “unfortunate coincidence” that autism settled in shortly after vaccination.
It was an “unfortunate coincidence” that parents noticed it at that time and not earlier.
It was an “unfortunate coincidence” that the symptoms of mercury poisoning and autism were identical.
It was an “unfortunate coincidence” that autism affects four times as many boys as girls knowing that mercury and testosterone are synergistic.
The rise in numbers. Simpsonwood. The IOM report. The Lily Rider. The improvement of symptoms when treated medically. The eyewitness testimony of parents. Leo Kanner. Donald Triplett. The list went on.
All of it.
Absolutely all of it was an “unfortunate coincidence”.
A recent post on The Thinking Mom’s reminded me about the roles grandparents play in the autism epidemic. I believe in many cases they are the unsung heroes of much of what we’ve been able to accomplish in the pursuit of health, truth, and justice. I know for me personally, there’s no way I could have saved my daughter, kept my sanity, and found time to advocate were it not for my parents on both sides. No way.
Thinking about them actually brings tears to my eyes, especially when I remember my mother making an honest, quiet comment to someone in a conversation years ago. I don’t remember it word for word, but I do remember the gist of it: how hard it was not only to watch your grandchild suffer, but your own child as well, and mostly how helpless and painful that felt.
A recent post on The Thinking Mom’s reminded me about the roles grandparents play in the autism epidemic. I believe in many cases they are the unsung heroes of much of what we’ve been able to accomplish in the pursuit of health, truth, and justice. I know for me personally, there’s no way I could have saved my daughter, kept my sanity, and found time to advocate were it not for my parents on both sides. No way.
Thinking about them actually brings tears to my eyes, especially when I remember my mother making an honest, quiet comment to someone in a conversation years ago. I don’t remember it word for word, but I do remember the gist of it: how hard it was not only to watch your grandchild suffer, but your own child as well, and mostly how helpless and painful that felt.
The thought stopped me in my tracks. For so long I had been completely wrapped up in my own pain. It had never crossed my mind to think about how she felt, or how my father felt, or how my in-laws felt. I was completely focused on my daughter and myself, oblivious to the toll this was taking on them.
I thought about it then. What was it like for her, watching me in so much pain? Was she walking on eggshells around me? Of course she was. Truth be told, I’m not the easiest person to deal with when I’m on a mission. No one knows that better than my mother.
On a few occasions we came to blows. As always, she was right. I was out of control, taking on more than I should. Forgetting to take care of my other children and relationships with the same intensity. Trying to save the world, but not making time for a nice meal with my family.
As I mentioned in my very first post, when I first thought about recovery from autism, I thought of it as something with a definitive end. Like the last chapter in a long, emotional, roller-coaster-of-a-book, I could turn the final page and be done with it.
That’s what I thought. That’s what I hoped. I didn’t realize, however, that autism would forever change me, and that frankly, that would be impossible.
None-the-less, in practical terms, I did believe it would at least be the end to a few things. No more IEPs. No more weekend rounds of ALA. No more carrying a cooler around in the back of the mini-van.
The supplement cabinet would be cleaned out. I would stop planning my Memorial Day weekend around Autism One. I could get off the computer. I could relax. And most important, we could eat…like a normal family.
Out of all the things I hated regarding autism recovery, I have to admit the thing I hated the most was the diet. Not only were there very few choices for us at that time, it was more than that. It was the way not participating in our culture in a social way made me feel even more isolated than I already did. Food is not only a form of love; it is also a form of socialization. It felt like I was depriving our family of both.
Every day, it seemed, I was on patrol as the food police. I had to battle family members who didn’t buy in and thought a slip of an M-&-M here or there was no big deal. I had to plan days, sometimes weeks ahead of time for a simple family birthday party to make sure we would not have an infraction, and would have an alternative to that piece of cake or cupcake everyone else was having.
Is there milk in that? Did you bring the enzymes? Where did she get that cracker?!
Sitting in the waiting area of the barbershop, I grabbed the March issue of Chicago Magazine to read. The cover boasts a list of the top 100 most powerful Chicagoans with Mayor Rahm Emanuel on the front. My husband just had a luncheon with the mayor last week (along with several hundred other people), so I thought I’d take a look to see who else made the list and ask him if they were there too.
I never saw it.
Not a few pages in, I came across a feature titled “When Autistic Children are Children No More” that stopped me from flipping further. It was a lengthy profile of the plight of three Chicago area families now trying desperately to provide services for their children with autism aging out of the school system.
A summary of the story is provided on the Chicago Magazine website.
When Autistic Children Are Children No More - Across the country, an estimated 300,000 kids with autism will hit adulthood in the next decade. It’s a social crisis in the making, with few resources currently available to help autistic adults become self-sufficient after they age out of government-funded services. Only about 6 percent of adults with autism work full-time and many lack the skills to live alone, so the burden falls on parents and grandparents to find adequate support services for their loved ones. We look at three pioneering Chicago-area families who are rolling up their sleeves to create a better future for developmentally disabled adults.
Not only was it remarkable to see this kind of reporting, it was also remarkable to read the way the problem was being described, “a social crisis” and “looming tsunami” being a few. It’s unusual for a mainstream magazine to refer to the impending catastrophe as such; for a while, I kept checking that Anne Dachel wasn’t quoted somewhere within it. She very well could have been the author.
Most profound, I believe, was the large table provided for the reader entitled, “A Looming Tsunami”. Going back a few decades and forward one more, it demonstrates irrefutably what the past, present, and future look like in terms of people with autism needing services. Suffice it to say it’s startling, and even more startling perhaps, that the author warns the reader these aren’t even the real numbers. Children in private school settings were not included.
So, last time we looked at the definition of recovery. As I suspected, there is no singular definition. Likewise, I have found, there is no singular way to explain it.
If you’re like me, trying to explain what happened to your recovered child is not easy. Well, okay, yes, it is easy…to us. Sick child got better. Simple enough.
But when people (who aren’t us and don’t understand) want to know why she was sick and how she got better, it usually and inevitably goes something like this:
First, I take a deep breath, purse my lips to the side, and raise my right eyebrow in a face that says, “Oh dear God, how do I put this?”
Second, I quickly size up the situation. Who is this person? How well do we know each other? In what context do we know each other? Is it safe?
I have to ask myself these questions because the answers matter. A lot. If this is a new co-worker, for example, I’m giving a very vanilla, polite explanation. I don’t know them; they don’t know me, and this is not how we are going to start things off.
If it is a fellow mother in the Whole Foods buying gf/cf foods, for example; however, I’m more likely going all out.
That said, over the years, I’ve become less and less inclined to sugarcoat things. I just don’t have time for that anymore. Plus, my need to do so really bothered me. I felt like I was betraying my daughter in some way by not just hitting people over the head with it. This happened. This is her truth.
“She was injured by her mercury and her vaccines, which in her case, when used in combination with too much medication, resulted in brain damage. Happens to lots of kids actually. You have probably heard it called Autism, ADHD, and any number of other things plaguing children today. It’s all the same.”
But, I found that put a lot of people off. They didn’t really know how to process something so blunt, and often I found they immediately wanted to change the subject. As a teacher, I hate when teachable moments are lost.
So then I would try the gentler way.
“Well, you see, she got mercury poisoning. And then that led to a whole host of other problems. But really the mercury, for her, was the biggest problem, and thankfully, that is very treatable when treated expeditiously. Sadly, we didn’t know what it was for a few years, so she suffered a long time and ended up with some (what seems to be) permanent damage. However, she did get better when treated, and she’s doing awesome today.”
But even that doesn’t always work. The follow up to that usually is, “Mercury? From where?”
And now I’m back where I would have been if I had been blunt in the first place.
In my inaugural post for this column, I think it’s important to first tackle the definition of “recovery”. What recovery looks like for one person may not be what it looks like to another. Can we all be right? Is there a definition?
Honestly, I don’t know if I ever sat down and defined what recovery meant for us, but I will say, I definitely knew what it didn’t look like: what we were living at the time. I think I initially thought of it in terms of what would be absent from our lives, not necessarily what would be present.
For example, not if, but when we recovered, I would think, I could finally clean off the biomed counter and clean out the biomed cabinet. The liquid supplements taking up a full lower cabinet and the solid supplements taking up a full upper one would be a thing of the past. I could open the door for a bandage perhaps, and not be overpowered by the smell of vitamins or get smacked in the head by a falling bottle of enzymes.
And the cooler we kept in the back of the van for those emergency food times, I would imagine…packed with gluten-casein-sugar-soy-dye-and-taste free foods…could go back on the garage shelf. (This was 2005, people. Dietary pickings were slim.)
Oh, and yes, I would gleefully think, I would no longer spend another weekend getting up every 3 to 4 hours around the clock. After about 100 of those, I was growing weary.
And there was more. The spreadsheet for morning, afternoon, and bedtime diet and supplements could be filed away forever. The prescription antibiotics for ear infection after ear infection would cease. The binder of medical EOBs and bills would get stashed away forever in the autism closet. In fact, there would be no more autism closet! (Do you have one of those?)
The patches of eczema in her elbow and knee creases would disappear. The intense examination of every bowel movement could end. Interviews for therapists and tutors would stop. Oh yes, I would imagine, it would be the absence of all of this!
I haven’t written a lot this year. Frankly, I haven’t had a whole lot of time. Between grad school, a new full time teaching position, and a family to take care of, writing has had to take a back seat.
But truth be told, there’s more to it than that.
For starters, I often feel like I’ve run out of anything new to say. I’ve been writing about Autism for almost eight years.
Furthermore, I’m a sensitive soul. Writing about it takes a thick skin, and honestly, sometimes I just want to cover up.
But there’s even more than that; sometimes I just don’t know where I fit in all of this anymore.
The thing is, I live in between two worlds. My daughter has recovered from Autism, yes. She does not qualify for a diagnosis any longer. And yet, my daughter has not totally escaped the residual effects of what it did to her. We still deal with our fair share of social and academic issues; medical and self care concerns, and more.
Make no mistake; I’m not complaining, just explaining.
It’s bizarre, really, one foot in the non-affected world, one foot in the affected. I am never completely in one or the other. A strange state of simultaneous gratitude, relief, sadness, guilt, obligation, responsibility, anger, panic, elation, fear, and exhaustion lives inside me.
On any given day I am relating to the crises so many of my friends are experiencing, trying my best to help them, and then closing my lap top and going to have a conversation with my daughter about her day.
And so it has been with great caution I have tried to share our experience. On the one hand, I want everyone to know recovery is possible! We are living proof! It’s so important my child’s experience make a difference. I also want to share our hardships and lean on my friends.
But on the other hand, those problems pale, I mean pale, in comparison to what some are dealing with. It gives me great pause. Am I being insensitive by sharing my heartache and problems? Can they even compare?
“She’ll have a good life,” she said, reassuring me that everything was going to be okay.
The emphasis was on the good, not in a way that stressed “awesome” “great” or “fantastic”, but in a way that expressed “satisfactory”, “acceptable”, or “decent”.
It was meant to be helpful, I know. It was meant to remind me that things could be so much worse. It was meant to make me feel better.
It didn’t. In fact, it just made me angry…and then sad.
When I look back on my life thus far, I’m relieved to find that my feelings about it are overwhelmingly those of joy and gratitude. I have had a great life, I believe. In fact, I feel like one of the most blessed people on the planet. I really mean that.
It’s only when I really start to think about the tragedy that befell my daughter and our family that I begin to question it.
My child was poisoned. Her brain and body irrevocably damaged. Her life’s potential stolen. Her suffering and experience denied by those who caused it, the same people needed to fix it. Betrayed by our country and our media. Our marriage fragmented. Our lives cracked in half. The pain coming this close to breaking us. Breaking me.
Great life? Really?
And yet, the answer to that is still the same, beyond any shadow of a doubt. Yes, I’ve had a great life. One of the greatest I know.
For I have lived in Spain and danced in the fountains of Madrid and on the shores of Ibiza at midnight.
I have celebrated in Wembley Stadium with over 100,000 people singing in unison…including Prince William.
I have completed a marathon…in Alaska…while pregnant. And I swear I’m not making that up.
I have married and stayed married to the most perfect man on the planet for me, twenty years together this November, teenagers when we met.
I have excelled in academics and have never really had to work hard for anything…until marriage…and then Autism…and then marriage again.
I have the most loving, supporting, amazing, and hilarious family anyone could ever ask for.
I have had the same best friends since I was 7 years old, and we are still as close, if not closer, than we ever were.
I live in Chicago.
I have been able to use my favorite creative outlet, writing, to actually make a difference.
I have marched on Washington for what I believe in. Thrice.
I have stroked my children’s hair while I have rocked them to sleep, breathed in the scent of them as newborns just placed in my arms, and in those moments, have repeatedly experienced true, unconditional love.
I have learned what it means to be willing to die for someone if it would mean an end to their suffering, no questions asked.
I’ve had the privilege of teaching at two of the best schools in the nation.
I’ve been healthy and active, running and exercising my whole life without injury or difficulty.
I’ve learned I’m stronger, smarter, and more powerful than I ever could have imagined. And I’ve been really frightened by the responsibility that brings.
I have seen my favorite band in concert five times, and once, I even got chosen from a crowd of tens of thousands of people to sit in the front row while they shot a video.
I have been honored by Oprah Winfrey as one of America’s best teachers, showered in her “Favorite Things” on television (only to come home hours later and receive a diagnosis that would change my life forever).
And most incredible…she recovered.
I sat in the ballroom scrolling through my phone. It was at least another twenty minutes before the keynote, but I was afraid if I got up, I wouldn’t get a good seat. Instead, I kept my butt planted where it was and re-read my notes from Dr. Martha Herbert’s presentation on the brain. I then picked up my phone.
“Autism is not a tragedy,” Dr. Herbert stated emphatically. “It’s a catastrophe.”
She emphasized “catastrophe” and repeated herself a few times. This was in response to an audience member’s question about ADHD and learning disabilities and all of the other things plaguing our children.
Her words struck me deeply. I clicked on my Facebook application and put them as my status. Here was a pediatric neurologist from Harvard telling us what we’ve done is catastrophic, and yet, some outspoken critics would have you believe everything is just fine. It was one of many head shaking moments over the weekend.
Not long after, I thought I saw someone staring at me. I was right.
“Are you Julie?” asked this bubbly, smiley, very pretty woman. She seemed a little embarrassed and then introduced herself.
“I swear I’m not a Facebook stalker!” She apologized. “I just recognized you from your picture and wanted to say hello!”
We greeted one another and she moved closer so we could catch up. Facebook, we agreed has created this new phenomena where you can really get to know someone virtually…all about their family, their life, their jobs…but pass them right up in the hallway. I’m sure I walked right by a number of people I correspond with daily.
For several minutes we talked about our kids. How old is your child? How is he/she doing? What have you tried? What doctor are you seeing? Is anything working? It’s the standard “get-to-know-you” conversation in the biomed world.
When Jenny came out, we finished our chat and she moved back to her seat. We hoped to see each other again and went about our day.
Sometime that night I saw a nasty article already on the Internet about Autism One. To start the conference, there was one slamming it and The Chicago Sun Times. Now to end it, there was one slamming it and the parents who attend.
A blogger, who hadn’t attended the conference, but instead was regurgitating another blogger (who hadn’t attended the conference either), wrote an entire article about the inability to “bleach” the Autism out of a child. She was referring to MMS, a treatment being used for gut problems in some children that hadn’t even been presented yet. It was on schedule for the next morning.
It struck me as really odd that something most people at the conference didn’t even know much about had already been completely scrutinized by people who seem loathe the mere idea of medically treating a child with Autism (with anything but pharmaceuticals, apparently). It seemed obsessive and premature, to say the least, and it was eerily reminiscent of what happened with other interventions in the past.
But mostly, the article irritated me for its tone. The author’s message was clear: parents who try these treatments are gullible, dangerous, and/or don’t love their children, and the people who pass them off are snake oil salesmen.
Things like this used to make me really angry. It’s so damn insulting. I would craft long, thoughtful responses only to end up in a comment war with some coward who won’t even use his/her own name. I don’t have the time or patience for that non-sense anymore, nor do I feel the desire to defend myself anymore. My child is recovered. The results speak for themselves.
By Julie Obradovic
As of this week, I now know five people my age who have been married to or are married to a man with a mental illness. Five. And that's only the ones I know about. Three of the five marriages have ended in divorce because of it. It's alarming to say the least.
The story is always the same, too. Right after they got married and started having children, something changed. For some, it was a subtle change or a pattern of behavior that took years to pin down. For others, it was an intense episode of mania or depression that required immediate psychiatric attention. The man these women had thought they married...who they insist they married...changed. He became selfish and immature, withdrawn and impulsive, irrational and reckless, depressed and sometimes suicidal. He was, in short, like a stranger.
The most common aspect is that it started right after a baby was born. For one, it was after she got sick. For another, the onset began pretty much immediately after saying their vows. One now sees the signs started in college, but didn't realize what it was. All of them agree, however, marriage and children exacerbated it.
For a long time, most of the women chalked it up to rebelling against being tied down. Suddenly, faced with the enormous responsibility of providing for a wife and family, they regressed into their childish ways, trying to live vicariously through their unmarried friends.
The men insisted that wasn't the case, however. They loved their wives and kids, they pleaded. They didn't know why they were doing these things. They begged for forgiveness, support and understanding.
These wives then made excuses for them. They blamed it on their husband's parents or siblings. They fought for them. Sought counseling. Prayed their hearts out. And eventually, got a diagnosis, bipolar being the most common.
Sadly, however, the diagnosis didn't fix anything. Yes, it put a name on it, and that was some relief. But managing such a condition proved very difficult. Finding the right medication and dose was painful at best. One husband literally went crazy when put on the wrong drug. He was hospitalized for it. He then became an unemployed, pot-head, video-gaming junkie, and she left him. This was a guy who graduated at the top of his class from a very competitive university. Who had never done drugs before. It was a stunning and tragic downfall. He was barely in his thirties.
Another husband feels good after the right medication is given, but only for a little while, and only to build up a tolerance. He constantly needs more. He has tried to go off, but his depression sets in almost instantly when he does. He is horrified at the thought of spending the rest of his life on medication. He too is in his thirties.
I've asked my parents if they knew this many people with mental illness when they were in their thirties. My dad knew one. My mom knew a few, but speculated there were more. She wondered if maybe no one talked about it then, making it less determinable. She also said many of them were Vietnam vets who had never been the same.
Fair enough, I agreed, but here's the thing. No one talks about it now either. These women that I happen to find out had a husband with a mental illness weren't exactly advertising it. And none of their husbands were in the military. They talk about it like it's a dark, awful secret, still trying to protect the reputation of the man this happened to...even the exes. There is still such a stigma attached to mental illness that most people only figure out it could be one after they have been a part of it. We don't exactly advertise the warning signs or anything.
Before I knew anything about Autism, I'm fairly confident I would have chalked up all this diagnosing to the pharmaceutical industry wanting to make more money. Many mental illnesses appear on the surface to be nothing more than a maturity-chip or responsibility-chip missing. "If they would just grow up..." many claim.
But I know these men. They are grown up. They were grown up. And something happened. Something changed. The familiarity in those sentences is haunting. It's just like regressive Autism. Something. Happened.
But what? I wondered. What could trigger all of this in so many young men these days?
I did some research and came across a few well-accepted components of their mood disorder. It often starts in the early twenties, and grows worse from 25-40. It is almost always triggered by a stressful event. There is no genetic explanation, although they believe there is a genetic susceptibility. And the environment, although they don't know how, is at play. It is lifelong. It can only be managed, not cured. And the treatment prognosis is actually not that good. All eerily similar, no?
Additional research, however, some that I've been doing to prepare for an annual Autism presentation I give, coincidentally just reminded me of the identification of the disorder. It was in The Age of Autism by our very own Olmsted and Blaxill. Emil Kraepelin, the German psychiatrist who met with Leo Kanner to look for native Americans with GPI (a form of neurosyphilis) in the 1920's, named the disorder in 1902. Throughout the 1800's, mental illness was exploding all over Europe, and Kraepelin made a career out of naming, describing, and categorizing them. He is literally the father of the DSM.
But something else was going on in the 1800's at that time. Men, women, and children were being doused in mercury. From mercuric chloride, used in some syphilis treatments, to mercurous chloride, used as a topical agent for cuts and wounds, there was no short amount of it anywhere. Add to that, the industrial revolution was underway, literally belching tons of it into the air to be sprinkled over everyone. Their book details these incidences in exhaustive and stunning detail.
Which made me think. Many mental illnesses, like bipolar disorder per se, weren't identified until only about 150 years ago. They sprang onto the scene at a time the world was being doused in mercury, medicinally and environmentally.
Today, we are still doused in mercury, especially environmentally, and still by means of our teeth and medicine. And in the mean time, three variations of biploar disorder have been added to the DSM, most of which reflect milder versions. Isn't it at least possible that our chemically saturated environment is triggering a mental break down in young men experiencing significant stress for the first time in their lives? Is it possible mercury, metals, andstress also combine synergistically? It certainly seems so.
Either way, I'm horrified by what I see and what I know. The destruction has become so catastrophic, and at times, completely overwhelming. It's not just our children, it seems. We are all at great risk for becoming or loving someone who is susceptible to becoming very, very neurologically sick these days....particularly our young men.
Julie Obradovic is a Contributing Editor to Age of Autism.
I remember the moments vividly and painfully. I have some of them on tape.
“Evie, what’s your favorite color? Evie. Evie? Evie, over here. Evie, look at mommy. I’m talking to you. Evie, listen. Evie? What’s your favorite color?” I asked repeatedly in my nicest mommy’s-on-video voice, my disappointment and impatience obvious anyway.
“Blah, blah, blah,” she finally replied looking at the camera but not in the camera. Literally that’s what she said. Blah, blah, blah.
“Blah? Blah? Blah?” I repeated confused and heart broken. “That’s your favorite color? No, it’s not. Come on, silly. What’s your favorite color?”
She never responded. Instead she turned her back on me to play with the staircase spindle, a favorite past time at the time. She was 3.
Eventually Eve learned the answer to that question was “red”. “Red” made mommy and everyone happy. But soon enough I was on to her.
“Evie?” I asked one day. “What’s your favorite color?”
“Red”, she replied automatically.
“Oh, yeah? And what’s your favorite food?”
“Red,” she replied again.
“Really? Okay, then. What’s your favorite book?”
“Red!” and this time she started laughing. She had no idea what I was asking her. She had simply learned that the word “favorite” should be followed by the word “red”. I was devastated all over again.
Over the years, I have had to wait a long time for her words to truly come. I am a language teacher by trade and it has been with incredible interest I have watched as she has learned her first language the way someone learns a foreign one. The difference is, however, she has nothing to compare it to, nothing to fall back on when she can’t find the word in her own language. I can only imagine her frustration.
By kindergarten we were mainstreamed without an aide, but we weren’t out of the woods. In that year as well as first grade, I almost gave up asking how her day was because it was too painful to hear the silence. “Good” became the new “red”. It stopped there.
But “good” wasn’t good enough for me. I wanted more. And soon I realized I could sort of get to the bottom of things by giving her questions to respond to that had a choice.
“Well, was it fun or boring?”
“Did you have gym or art today?”
As long as there were choices, she could respond authentically. Without them, however, she was stuck.
This method of communicating continued for years. By third grade, we were finally up to full responsive sentences. There were even appropriate gestures and voice inflections.
“It was fun! I really liked it!”
1. They believe there is an anti-vaccine movement.
This may surprise a lot of people, but there actually isn't an "anti-vaccine movement”. Although there are definitely people who believe no vaccine is a good vaccine, the controversy has never been solely about whether or not vaccines are good or bad; it's been about whether or not they are being used responsibly and have been properly investigated for their role in chronic health conditions.
The more appropriate term to describe people raising this important question would be consumer safety advocates, seeking informed consent, more research, product liability, and policy reform.
Only a few possibilities exist to explain why those who insist on using the "anti-vaccine" label anyway continue to do so: they erroneously assume anyone who questions a product's safety is automatically against it; they believe vaccines already are being used as responsibly as they possibly can be and have been properly investigated; or they choose to use a red herring label like "anti-vaccine" to manipulate people.
2. Anyone who disagrees with them is an idiot.
If the first line of attack doesn't work it will almost always be followed by an insult. Not only are people who disagree portrayed as dangerous lunatics who want to see the world explode in infectious disease, supposedly they are also "flat-earthers" who can't accept the world is round. Certain journalists have gone so far as to suggest it's no wonder their children have problems.
Such commentary is breathtaking in its insensitivity, entirely unnecessary, and most troublesome once again, not true. Even the CDC has recognized for years, most recently in a study on Hepatitis B uptake, that the most common demographic of a person who questions vaccine safety or refuses them is a highly educated mother with a master's degree.
When faced with this unpleasant fact, anti “anti-vaxxers” are left with little place to go. Some have started calling these parents “superstitious”, “defenders of pseudo-science”, or “conspiracy theorist” instead.
3. They blame Dr. Wakefield for everything.
Dr. Wakefield has now become the scapegoat for the whole controversy. Supposedly this man and his team of researchers, who had the audacity to suggest there might be a problem with the MMR that warranted further study, is single-handedly responsible for the plummeting vaccine uptake throughout the country.
The LA Times in their series on Autism last week referenced a British study that appeared to have found 1% of adults with the disorder, the equivalent to the rate among children right now, as a way to convince the public Autism really isn't an epidemic after all. Millions of adults with the disorder have been with us forever they tell us, unfortunately either misdiagnosed, in prison, or worse. The quest to find them has begun, and in Britain, they've already started.
I forgot about that study from 2007 and decided to go back today and look at what it found and how. I remembered it being pretty ridiculous, and sure enough, I was right.
Logic would dictate that if you were truly screening the adult population for Autism, you would subject them to the same DSM criteria children are, and that you would investigate as to whether or not they had those symptoms as children. Let's compare apples to apples, shall we? But no. That's not really what happened in this study. Instead, it starts with a survey, one that the adult answers themselves. (Think about that for a second.) Naturally, I decided to take it to see if I too would be flagged with possible Autism.
Here is the actual survey, called the AQ20, and here are my answers. (It's quite obvious the survey is strictly trying to identify people with Asperger's Syndrome. Muddying the waters to say 1% of adults with Asperger's is the same as 1% of children with Asperger's and Classic Autism is pretty neat trick, eh? And for what it's worth, over 5,000 of the 7,000 plus interviewees in this study qualified as possibly being Autistic based on it, making them initially eligible to move on to phase two. Seriously.)
Go ahead! Try it! Maybe you're Autistic too.
1. I prefer to do things over and over the same way. Yes. I like my laundry folded the same way all the time.
2. I often notice small sounds when others do not. Yes. Since being a mother, I can hear a whisper down the hall at midnight.
3. Other people often tell me what I've said is impolite, even though I think it is. Yes. When I talk about Autism with very little patience and creative curse words, this is usually the case.
4. I am fascinated by dates. Yes. I live my life by the calendar, no doubt.
5. I find social situations easy. Not always. Depends on the situation.
6. I tend to notice the details others do not. Yes. I was raised to.
7. I would rather go to a party than a library. Depends on the party.
8. I find myself drawn more strongly to people than things. Depends on the things. Depends on the people.
9. When I talk, it isn't always easy for others to get a word in edgeways. Often, yes. I'm an Irish-Catholic woman from the midwest. This is surprising?
10. When I'm reading a story, I find it difficult to work out the characters intentions. Depends on the writer. Some people are terrible story tellers.
11. I particularly enjoy reading fiction. Not lately.
12. I find it easy to make new friends. Yes, but harder as I've gotten older.
13. I know how to tell if someone listening to me is getting bored. Yes. This happens a lot with Autism talk.
14. I find it easy to do more than one thing at once. Easy? No. Can I? Yes.
15. When I talk on the phone, I'm not sure when it's my turn to speak. Cell phone? All the time. The delay kills me.
16. I find it easy to work out what someone is thinking or feeling just by looking at their face. Yes.
17. I like to collect information about categories of things (types of cars, etc.). Yes. I collect coffee mugs. And I really like coffee. Read a book about Starbucks.
18. I like to plan any activities I participate in carefully. Yes. I'm a control freak. Ask anyone.
19. I enjoy social occasions. Is my family there?
20. I am not very good at remembering people's date of birth. Thank goodness for Face Book.
Although this is sarcastic, the truth is that even without sarcasm, there were enough positive answers to move me to phase two. You?
Julie Obradovic is a Contributing Editor to Age of Autism.
A few weeks ago I attended the Freshman parent night for my eldest. He will be attending high school next year, and it was our opportunity to check out the school.
Thirteen years have gone by in a flash. It's been hard not to stop and stare at him just a little bit longer lately and think about how quickly he has grown up right before my eyes. My thoughts venture from t-ball games, piano lessons, soccer tournaments, Disney World, and so much more. It makes me teary, even though I am so excited about him moving on to the next stage of his life. As the mom of a child who has had a completely different experience than him, I, perhaps more so than many moms, do not take one ounce of his blessed abilities for granted. He's happy, kind, respectful, compassionate, smart, talented and has lots of really nice friends. The future will be whatever he wants it to be. It doesn't get any better than that.
My youngest is growing up just as quickly, if not more so. Seven going on seventeen, she has been like a tween-ager for the past three years. I don't know if that's how it is for all youngest children, but I just can't keep her from seeming much older than she actually is. She too is a blessed child, well-liked, brilliant, beautiful, athletic, and a real fireball. Passion and compassion run deep in her DNA. I don't take an ounce of her abilities for granted either.
It's painful to admit, but when I look at my middle child, who was not as lucky as her siblings, I don't have the same nostalgia for her youth as I do my others, or the same excitement for her future. The truth is, as I reflect on the last ten years of her life, my memories are overwhelmingly filled with anxiety, guilt, and pain. And as I look forward to the next ten, I am instantly shackled with sadness, fear, and worry. How horrible.
Strange then when I look through the photo albums of our family I see her adorable face beaming back at me. From them, no one could ever tell anything was ever wrong. She's smiling, happy, beautiful, and full of light. She's in Disney World, playing t-ball, swimming, making silly faces, ripping open birthday presents, and wrestling with her dad, exactly like her brother and sister. And yet, she was not like her brother and sister.
"She'll be a good worker," she said with a smile, not meaning to be insensitive in the slightest. I could tell she thought this was a good thing. "She'll be a really good worker."
She'll be a good worker?
My eyes fell to the table, the only place I could look, fixated on the phone in front of me. My husband had participated by phone. He had just hung up a minute before. Save me. Please save me. I sent telepathic thoughts through it to him. I've kept it together this long. I almost made it. Please, God. Not again. Not every year. Matt? Can you hear me? Save me.
He could not.
The typing on the lap top continued quietly, the shuffling of papers all around. I'm certain they were all still talking, although I could hear nothing.
She'll be a good worker?
Tears swelled in my eyes, my heart stuck in my throat. If I blinked, there would be no hiding it, so I didn't. I just stared at my phone, and then eventually pressed the weather app in the hopes it would distract me. For a moment it did. And then, a question.
"So I wanted to ask you something," the new speech therapist asked strangely. Instinctively, I knew what it was going to be. She was new to our case, new to me. This happens every time.
She thumbed through her case history and came upon the highlighted sentence. Pondering it, she looked at it, looked at me, and then looked back at it. I was right.
"It says here that Eve was evaluated in 2007," she paused now looking at me again, "and that they consider her 95% recovered from Autism?"
"Yes," I looked her dead in the eyes with a suggestion of "...and your point is?" I have gone from intense pain to intense pain-in-the-ass in ten seconds.
"I don't understand," she responded flatly.
"I don't understand what you don't understand," I carefully answered back. It was still hard to tell if she was being sincere or not. Knowing how defensive I was feeling, I chose to give her the benefit of the doubt.
"Well, explain to me what that means. Recover from Autism?" She was actually sincere.
A few Saturdays ago was my twentieth high school reunion. I had a ton of things to do that day, not the least of which was running three different children to three different activities before noon. After that was over, there were errands to run, and of course, time needed to get ready. The day was planned out carefully in advance, my parents being nice enough to help out.
My dad came into the house with his huge, "hell-OOOO" which sounds like "yell-OWWWW" and a smile. He's a busy man, my father, and often times when you are talking to him you get the feeling there's a mental clock ticking letting him know your time is almost up. You have to talk fast. I could tell from his demeanor this was one of those times. There was a checklist of items he needed to make sure he communicated before he would be out the door. After getting through the first few items or so, he remembered something not on the list. This has happened about, oh, ten times.
"Oh, yeah, so I wanted to tell you," he remembered suddenly. "I wore that pin the other day. I know I tell you this all the time, but man, any time I wear that pin, at least five people start a conversation with me about it. I ended up talking to a bunch of nice people, several whom want your web site and email address. Would you mind writing that down for me again? And you know," he continued, implying somehow this was my fault, "you should really have a card."
My father talks with easily thousands of people a year and has for over thirty years. The pin he is referring to is a blue Autism Speaks puzzle piece he puts on his suit lapel. No matter how many times I have told him I don't have a web site but that I write for Age of Autism, he doesn't remember. And no matter how many times I explain to him that I don't support the blue puzzle piece organization, he doesn't pay attention. He doesn't support them either, he says when I bust him,"but it always starts a conversation." Okay, whatever. Anyway, dad.
I wrote down the information and listened to him describe the same conversation he has had multiple times. I know because many of these people email me or friend me on facebook. This one's grandchild has Autism, and they want to make sure he's taken care of. This one was a teacher for forty years and never saw sick kids like her grandchildren. This one is a young couple that is trying to buy a house but just got the bad news and don't want one by a lake anymore. Regardless, it always ends the same. "You should really talk to my daughter..." And so they do.
We spoke briefly and soon he was back in check with his internal clock. Dad gave me a kiss, told me how proud he is of me, and yelled out a collective good bye that reverberated through the house so all the kids could hear. I love my dad dearly.
The day continued as planned, and by 5:30, I was ready to head out. One of my best friends picked me up right on time. We snapped photos like we were going to homecoming and giggled in excitement as we tore out of the driveway. We pulled up in time to help our other friend, the coordinator, finish up with the last minute touches. Shortly afterwards, our classmates began to come in. (All names have been changed.)
Hi, Jayson! How are you? It's so good to see you! Really? That's fantastic! Gosh, you look the same! Oh, thanks! No, really, thanks! You, too!
And so it went for the first half hour or so. It was genuinely good to see everyone doing so well. I had some wine and made my way around the room. There's Mike! Oh, gosh, I wonder what's up with him?
Hi, Mike! And then it started.
Mike got cancer last year. He had surgery and appears to be doing well.
No, they have no idea why it happened, but life is good and my two children are growing up fast. You have a child with special needs right, Julie? I thought I heard about that. Did you use Early Intervention Services? What did you think of them?...Well, no, they seem okay. One of mine has a pretty bad speech delay, and the other, well, he has this thing about insisting on walking on his toes. He has sensory, sensory, sensory something...Sensory Processing Disorder?...Yes! Sensory Processing Disorder, but they think his toe walking is just a habit now, not a real problem...Mike, it's a problem. You need to trust me on this...Oh, no, Julie, I'm making it sound worse than it is. It's fine....No, Mike, it's not fine.
By Julie Obradovic
More and more lately I have read articles and editorials that call for stricter vaccine mandates using the same analogies. It's almost as if someone issued talking points to the all-vaccines-are-always-good-for-everyone-at-all-times-no-exceptions brigade and unleashed them on the media. Maybe you have seen them too.
There's the car seat analogy. We have never done a double blind placebo study on car seats, and yet, we know they are safe and save lives. This is why we mandate them and why we should mandate vaccines too.
There's the smoking analogy. People can no longer smoke in public because it endangers the lives of others, ergo vaccines should be mandated too.
And there's the drinking and driving analogy. For similar reasons as smoking, we have strict laws about drinking and then driving, and we have very serious consequences (like jail time) for those who disobey them. Ergo again, vaccines should be mandated (and if not accepted, punishable by jail time).
Interestingly, I have seen all three of these analogies touted by people who boast their Harvard education. Harvard, we all know, is reserved for the elite, the best of the best; therefore, the label implies, if a Harvard graduate says it, it must have merit.
To be sure, I agree Harvard is an impressive institution. You do have to be pretty intelligent to go there, of that I have no doubt. But it is precisely for that reason that I am left wondering how these supposedly smart people do not recognize the error of their logic. Contrary to what they would like to believe, car seat mandates, public smoking bans, and drinking and driving laws are not analogous with vaccine mandates. Here's why.
When crafting legislation a law may fit into one of the following categories:
1. A law that forces an individual to take action to protect themselves or their children that has no impact on someone else and that has no potential to harm the individual by doing it.
An example of this would be mandating the use of motorcycle helmets, seat belts, or car seats. (A person may not like being forced to wear a helmet or use a seat belt or car seat, but no physical harm will come to them from doing so.)
2. A law that forces an individual to protect themselves or their children that could have an impact on someone else, but still has no potential to harm the individual by doing it.
An example of this would be establishing a minimum driving age. (A person may not like being forced to wait until they are 16 to be able to legally drive, but no physical harm will come to them from not driving until then, and more so, no physical harm can come to society by the delay. In fact, it likely prevents harm to the driver and others given the immaturity and lack of experience of a 16 year old.)
3. A law that prevents an individual from taking action that could harm themselves or their children that has no impact on someone else and that has no potential to harm the individual by not doing the activity.
By Julie Obradovic
As we learned last week, a new study released by the NIMH has determined that the environment plays a larger role than genetics in Autism than previously thought. Combined with a study released the same day that shows a correlation between anti-depressant usage among pregnant women and Autism diagnoses in their children, it's been a breath of fresh air.
That said, I can't exhale just yet.
The environment as a cause of Autism, although a welcome relief to a genetic one, leaves me nervous. Why? It is completely subject to interpretation, and I believe, leaves the door open to literally thousands, if not an infinite amount of possibilities of causation. We've already seen some examples of how researchers interpret it, and frankly, it's been more often than not less than helpful research.
There's the angle of the actual environment, like the climate, being the problem. One study showed us that Autism rates are higher where it rains more.
There's the angle of the environment of parental stimulation, like how a child is interacted with, being the problem. One study suggested parents who talk to their children less will more likely have a child with Autism.
Admittedly more helpful, there's the angle of the environment of pollution being the problem. One study showed Autism rates are higher near coal burning plants, and another showed living close to freeways having the same effect.
And then there's been the angle of the environment of contact, like what a child is touching in their own home. One study suggested pet shampoo may be implicated in Autism, and many speculate it could even be their flame retardant pajamas or household pesticides. Likewise, multiple studies have shown lead, which is unfortunately found in many of our children's toys in alarming amounts, can also lower IQ and cause developmental problems.
I suppose in the bigger picture, these do point us in a helpful direction: environmental toxins are a problem. But again, given there are an infinite amount of combinations of them, I'm concerned this area may quickly become another vast wasteland of time, money, and effort for our children. For me, it's imperative we define exactly what environmental research means moving forward, as well as how it needs to be prioritized, in order to most effectively and immediately help our kids. The good news? Our most promising research fits neatly under one umbrella.
By Julie Obradovic
In a slap yourself on the forehead, jaw-dropping, eye-popping, breath-taking, head-shaking, make-you-laugh-in-disgust hypocritical move, the American Academy of Pediatrics has issued a press release (HERE) accusing the U.S. of being too lax with managing and identifying the dangers of hazardous chemicals for children.
Yes. The AAP.
The same organization that I blogged about (HERE) that shared an internal email (HERE) among their leadership about how to handle the fact that they didn't realize there was more mercury being injected into kids than they thought (their words) (or how it manifested as poisoning, or how much of it actually caused poisoning, or how much of it could even be called "safe"), and rather than screaming from the roof-tops for an urgent recall and assessment of damage to the children overly exposed because of their oversight, decided to go along with the PHS (Public Health Service) and quietly try to get themselves out of the mess without hurting themselves, their doctors, or the vaccination program.
Yes. Them. That AAP. The people who put themselves and the vaccination program at more of a priority than the very children they serve. First, they threw them under the bus. Then they left them there. Then they failed to call an ambulance. Then they blamed more and more parents for not teaching their kids how to cross the street. And now they want the US Government to put up better road signs.
Are you kidding me?
If I weren't so disgusted by this hypocrisy, I would be thrilled. It is a good thing after all, that they find the toxic world in which are children are being raised a problem. It is a good thing after all, that they would like those with the authority to do something about it to do something. I suppose I should applaud.
But I can't. Because I think it takes a hell of a lot of nerve to accuse the US Government of failing to protect children from hazardous chemicals when they haven't even bothered yet to do the same thing themselves. (Chemicals, mind you, that they INJECT into children every day.) And given their track record of how they handled the situation when they had the opportunity to, they ought to be ashamed.
Now, don't get me wrong; I don't have the US government's back on this either. They failed and continue to fail our children equally. But perhaps the AAP would be better served by first assessing their own failure to protect our kids and take their own advice about how to do that. A bite of humble pie might serve them well.
For example, when they suggest to the US Government...
"The regulation of chemicals must be based on evidence, but decisions to ban chemicals should be based on reasonable levels of concern rather than demonstrated harm."... I'm curious. Why doesn't that apply to Thimerosal? Because to date, no one has banned this chemical for children or pregnant women, and there's a very reasonable level of concern that they should. See, it's poison. It's a neurotoxin. And no amount of it has ever been found safe. And the studies you site to try and tell us it is; they're all over the place. Some say it's good. Some say it's bad. Some say it makes you smart. Some imply it prevents Autism. (And now, some were done by a man indicted by the US Department of Justice for fraud (HERE.) Go ahead anyone reading this and look for yourselves (HERE). They're ridiculous! And yet, you still inject it into kids every day in combination with aluminum, the one thing it's not supposed to be combined with HERE (HERE).
Furthermore, AAP, not only have you not banned it based on a reasonable level of concern, you have actively fought parents who have tried! You have thwarted every effort on our behalf to do so! You're PREVENTING a mercury-based neurotoxin from being banned! Good God, AAP! Do you not see a problem here?
And when you suggest this to the US Government...
"Any testing of chemicals should include the impact on women and children, including potential effects on reproduction and development".... I'm also curious. Any chance you want to do those studies on Thimerosal? With BIOLOGICAL tests, not epidemiological ones that look backwards at selective populations and are subject to statistical manipulation?
And when you say,
"Chemicals should meet safety standards similar to those met by pharmaceuticals or pesticide residues on food."... Do you realize there is no safety standard for Thimerosal? That the FDA has never provided one, and that you have never demanded of them that they do?
And do you really mean it when you say,
Recent events surrounding the US indictment of researcher Poul Thorsen inspired me to revisit the time when he became involved in the effort to examine (and it appears, exonerate) the potential role of vaccines in Autism. An easy place to do so, and one I encourage everyone to visit, is the Put Children First website. It clearly documents the events that took place leading us to where we are today.
While navigating the site, I came across an old email written by Dr. Ruth Etzel that I had forgotten about. (See pdf of email here) It seems more appropriate than ever to share it now, as it accurately and eerily predicts what has happened to the public's confidence in the vaccine program. But to put it in the proper context, let's remind everybody about what was happening right before it was shared.
The FDA issued a directive called the FDA Modernization Act of 1997 to assess all mercury in food and drugs. This included vaccines, and in December of 1998 and April of 1999, vaccine manufacturers had no choice but to respond to their request for more information. Panic set in as it became obvious there was a serious oversight problem, (even though Merck knew back in 1991 there was a problem) and behind the scenes members of the different agencies of the Department of Health and Human Services, such as the FDA and CDC, joined forces with organizations like the AAP and Public Heath Service to come up with a plan. Collectively, however, they couldn't agree. To begin with, there were no specific guidelines for the safety for ethyl mercury (the kind used in vaccines). And as for coordinating a message to calm the American public? Well, there wasn't much agreement there either.
Think about it. They had to admit they had no idea what the definition of safety was for injected ethyl mercury exposure in children; that they had no idea how much of it was going into children anyway; that they had no idea what health consequences their oversight could have caused; and they had to find a way to still save the immunization program (as if any of them had any right to be in charge of it anymore anyway). Not exactly an easy task. And like I said, there was a lot of debate over how to do it.
As such, the AAP grew impatient, and on July 7, 1999 at 4:15 PM, a summer Friday afternoon when they hoped no one would be watching television or paying attention, a joint health statement between themselves and the Public Health Service was issued. In confusing and calming language that tried to be reassuring, they admitted to a potential problem that no one should worry about. Mercury was bad, but it wasn't. They forgot to assess the health risk, but it was fine. They would take precaution but not make a recall. You should be concerned, but not really. It was a mixed message to say the least, and not everyone behind the scenes thought it was a good idea. One of them was a doctor named Dr. Ruth Etzel.
On July 2, 1999 at 10:36 AM, she wrote these words to her colleagues:
"The Committee on Environmental Health and the Committee on Infectious Diseases may want to look at the way Johnson and Johnson handled the poisoned Tylenol affair in 1982. It followed three basic rules:
1. act quickly to recall the affected product
2. be open with consumers about what went wrong
3. show contrition
Seventeen years ago, when an extortionist tried to wring money out of Johnson & Johnson by lacing capsules of Tylenol with cyanide, 7 people died. While the government was still considering what to do (sound familiar?), and before the media had time to put the company on the defensive, Johnson & Johnson recalled all Tylenol products. That cost about $100-million and it lost short term sales. But it emerged from the episode with consumer confidence at a higher level than ever, and quickly regained its leadership of the painkiller market.
The AAP should be dedicated to promptly providing truthful information about this situation to pediatricians. We must follow the three basic rules:
Managing Editor's Note: We learned that Billy is back in the hospital, hobbled by his agonizing GI pain. Share your own story in the comments please. Or send us your submission to KimStagliano@gmail.com for review.
By Julie Obradovic
Over the last six years I have been privileged to meet some of the most outstanding human beings on the planet. One of them is a woman I'll call Jane Doe. Jane is a warrior mother in the truest form, a leader in the advocacy community and a parent of a severely affected child. No matter what comes her way, she faces it with grace, dignity, and love. I am lucky to call her a friend.
I have wanted to write about Jane and her son, Billy (not his real name), for a long time. Autism truly is a spectrum, and the severity with which it affects some children is often too casually dismissed. Billy is one of those children who is profoundly affected, now a teenager. Over the years since I have gotten to know Jane, her plight to help him has always hit me hard. I asked her to share a recent traumatic episode with Age of Autism to put a name and face on the children and parents who are fighting this fight everyday. To those of you going through the same thing, this story is also for you. To those of you in a position of power to do something about it, I beg you to do so. This is the reality of Autism for far too many families. Here is the story in Jane's own words....
The Medical Story
Billy is fifteen-years old and nonverbal with a long history of GI disease, immune deficiency, and more recently headaches. When not in pain, he is sweet, engaging and affectionate. He has not been doing very well since the end of September, mostly battling headaches on top of the usual GI issues. For the two weeks prior to this recent hospitalization, the topic of this story, Billy was very edgy, noncompliant, self injurious, and at times aggressive. In the last week before, he became more self injurious and aggressive; I was talking to his DAN physician or the staff almost every day.
Billy had a little congested cough (very unusual for him) in the two weeks prior, and when the cough ended, the aggression/self-injurious behavior increased. He kept biting/gnawing on his upper arms. He wanted me near him, but he wanted to dig his nails into me and scratch me almost constantly. At this point he would not wear clothes, and he would not get off the couch.
Billy has epic constipation (he is suppository dependent), reflux and chronic headaches. I know the behaviors associated with all of those things, and I know how to handle them and relieve his pain. This time I knew he was in pain; I just could not figure out what it was. Then he stopped drinking his elemental formula and water. So by Friday I knew there was no avoiding ER, because he was dehydrating.
We could not even get Billy to the car. He refused to dress and refused to leave the couch, let alone the house. I thought I'd never see anything more frightening than Billly's grand mal seizure in 2006, but this night was worse. The more I talked to him and explained to him that we had to get in the car and get help, the more upset and self injurious he became. He bit up his arms badly, and he gave himself two black eyes in the process.
I had to call 911. It took five paramedics to get him on a gurney, in restraints, and in an ambulance to get to our local hospital. At this point I thought the poor kid had appendicitis or something. I'd never seen him so out of control. The hospital got IV fluids going and ruled out a lot of things. CT scan finally showed that his small and large bowel were full of air, even though he did not look any more distended than usual. Soon after the CT scan, however, his belly grew very large and became very hard.
The local hospital transported us to Children's Memorial in Chicago, which is where we were for five days. Billy was in loose restraints Friday through mid-day Monday. He was just too aggressive and self injurious because of the pain in his belly. Diagnosis was ileus (bowel shut down) due to virus (the cold in the last two weeks).
Since Billy was not vomiting and began passing the air in his belly on his own, the hospital doctors decided not to intervene other than to give IV fluids and a little Tylenol for the pain. So you sit and wait for that air to pass; even with medication on board, it's pretty damn painful. Thankfully, the distention went down, and he seemed more comfortable on Sunday, but then suddenly his belly blew up again and we had to start over. That was pretty disheartening. The doctors at the hospital said that while passing all that air, another pocket of virus can open up in the intestine and cause you to distend again. By mid-day Monday Billy had a soft belly, was much calmer and back to drinking water and elemental formula again. So they took him out of restraints, and on Tuesday they removed his IV.
By Julie Obradovic
I read once the opposite of heat is not cold and the opposite of light is not dark, and that in fact, there actually is no such thing as either. Cold is what we call the absence of heat, and dark is what we call the absence of light. (Einstein even suggested evil was simply the absence of God.) I believe what we are witnessing with vaccine uptake fits more appropriately into the same argument. The overwhelming majority of parents foregoing vaccines are actually not anti-vaccinationists. They are more aptly described perhaps, as absent-vaccinationists. To be sure, absence of vaccination does not equal anti-vaccination. Without the issue being put into the proper context it may be difficult to effect change.
I will explore the reasons for the absence-of-vaccination phenomena as I see them shortly, but there is little doubt it is exacerbated by this flawed position that someone concerned about or critical of vaccines, particularly with regard to policy making, conflicts of interest, necessity, oversight, and safety, is against them entirely. Compounding the problem, these concerned people are then labeled impressionable conspiracy theorists who can't think clearly and should be dismissed from pediatric practices or have their insurance premiums raised. Even less helpful, and more recently, some have gone so far as to suggest they are irresponsible citizens of the world that should be held accountable for children's deaths.
Clearly this serves no one, fundamentally misrepresenting the issue at hand. While certainly there are extreme positions on either end of the spectrum...all vaccines are always good or no vaccine is ever good...I think it's fair to say the vast majority of people fall somewhere in between. Most people believe that vaccines are in fact a necessary component of individual and public health policies, but also believe, like any pharmaceutical product, it is necessary to scrutinize them, especially where children are concerned. The argument is actually over whether or not there is anything to be scrutinized anymore and who is qualified to do or say so.
Like many others, I have paid close attention to the hateful statements being made about people like myself who believe there remains much to be studied. Bullies in any capacity are not welcome in my life, and it has been with a heavy heart I have watched the bullying of our community. It's hurtful, yes, but most of all, it's concerning. Fanning the flames of anger, hurling ugly insults, and seeking to squash the conversation through threats and censorship is ridiculous. The message has been hijacked. Despite what some would have you believe, this is all there is to it:
Infectious disease is preventable. Autism is too. Vaccinate responsibly. (You could also insert the words "kills, harms, hurts, disables, endangers, is treatable" and "costs" for the words "is preventable".)
At the heart of the Autism controversy lies really only one explanation why vaccines don't cause Autism. Yes, widely accepted science says they don't, but that's not the real reason. Science is a process to find the truth, it is not the truth itself, and the truth it yields is dependent upon the integrity with which it is carried out. Research and design can be manipulated to generate specific outcomes. Necessary science can be left undone for fear of what it might find. Interpretations can be stretched to agree with specific theories. Undesirable results can be ridiculed and erased. Scientific results are truly only as good as the people who do it. The Medical Industry and the Government may be the ones held accountable for Autism which should dismiss them from investigating the issue and yet, we are willing to accept their version of science on this topic anyway. It begs the question, why?
Because there are just too many people involved for it to be anything but honest, relevant, thorough, and accurate, we're told. That's the explanation. That's why vaccines don't cause Autism. There are just too many people.
On some level, it's a compelling argument. Experience shows you simply can't have too many people involved when there's a big secret to be kept. Too many people would be tempted to tell someone or go public as a whistleblower. Too many people would be personally affected by the issue, friends, neighbors, family members and co-workers of victims. There's just no way a coordinated effort could be orchestrated and controlled on such a level, the thought of it preposterous, laughable, and desperate. People who believe such things are considered foolish conspiracy theorists.
Contrary to what my critics might believe, I agree keeping a secret among that many people is preposterous. Heck, it's hard enough to keep a secret between two people. But I do believe keeping a secret is quite different than perpetuating an untruth or manipulating an unpleasant one. We commonly refer to it as denial, and I know we can all point to some part of our life when we used masterful mental tricks to convince ourselves of something we really wanted to be true that wasn't (or vice versa), especially when we may have been the ones to cause the problem in the first place.
"Oh yes, she's fine. In a year, this will all be behind us, I know it."
Those were my words exactly. Perhaps Autism parents serve as experts in this area and is one of the reasons why we recognize it so easily. Denial is a powerful force.
Why bother to call attention to Dr. Paul Offit, the vaccine patent-holder who has led the attack on the idea that vaccines have anything to do with autism or any of the myriad of other ailments afflicting this generation of American children? Well, because other people are paying attention -- including the nation's pediatricians and the mainstream journalists who need to start calling him to account. Offit has a new book out -- "Deadly Choices: How the Anti-Vaccine Movement Threatens Us All." Here's the question doctors who recommend him to nervous parents, and parents unsure what to think, and journalists who interview him, need to ask: Why is Offit transparently opposed to ever studying the health outcomes of vaccinated versus unvaccinated Americans, even as he acknowledges that vaccines have a long history of causing serious side effects?
While his last book, "Autism's False Prophets," focused squarely on the disability now afflicting 1 in 100 children, Offit branches out here to deride those who have any concerns whatsoever about the safety of the current vaccine schedule. There is plenty of sympathy for parents of children who have died of infectious diseases, but perfunctory dismissal in cases where parents blame vaccines.
Thus Michael Belkin, whose daughter Lyla died after her hepatitis B shot, is treated as a gullible gadfly, goaded by Barbara Loe Fisher into heading "the Hepatitis B Vaccine Project at her National Vaccine information Center. Soon Belkin, a Wall Street financial adviser, was everywhere" -- everywhere being the CDC and Congress, which is exactly where he should have been as a citizen and parent who believes that Hep B is a dangerous and unnecessary childhood vaccine that killed his daughter. Sniffs Offit: "Despite Belkin's certainty that hepatitis B vaccine had caused his daughter's SIDS, study after study failed to support him."
Parents of girls who died after Gardasil vaccination get similar treatment. The idea that Gardasil is dangerous is "a contention refuted by careful study" and "established science."
And chickenpox vaccines are critically important because chickenpox can lead to shingles, "one of medicine's most debilitating diseases. Shingles is so painful that it has at times led to suicide. And shingles doesn't only affect the skin; sometimes when the virus reawakens it causes strokes, resulting in permanent paralysis. Chickenpox is a disease worth preventing." Absent is any acknowledgement of the evidence that the vaccine itself, by reducing cases of simple childhood chickenpox, has led to a big increase in shingles by removing the protective immunological "bump" those who already harbor the virus receive when they are re-exposed.
Hannah Poling and the government's $20 million concession that vaccines resulted in her autistic regression? Not mentioned. Billions paid out by vaccine court for all sorts of injuries over the past 20 years? Well, vaccine court is a strange place ...
Anyone concerned about any of these things fits Offit's definition of anti-vaccine, because vaccines don't cause any of them, because Paul Offit says so, a solipsism that is really quite breathtaking: "[B]ecause anti-vaccine activists today define safe as free from side effects such as autism, learning disabilities, attention deficit disorder, multiple sclerosis, diabetes, strokes, heart attacks, and blood clots -- conditions that aren't caused by vaccines -- safer vaccines, using their definition, can never be made."
Yet Offit himself yields an amazing amount of ground by describing unsafe vaccines -- including early polio shots and a rotavirus vaccine that was the immediate predecessor of his own. His technique is to situate all this as historical, part of the triumphant march of progress into the bright sunshine of vaccine safety. Here's a description I find especially astonishing: "When Barbara Loe Fisher burst onto the scene, several vaccines had serious side effects, every year causing allergic reactions, paralysis, or death. Public health officials and doctors didn't hide these problems. But they didn't do anything to correct them, either. And most parents had no idea they existed."
Public health officials did nothing to fix vaccine problems that led to paralysis and death? And parents didn't know about it? Is this not an indictment of the medical industry, and an unintentional endorsement advocates who have worked to remedy it? Does it not argue that at least some of the time parental observations may well be correct, an early warning system of the first order? Well, no, because apparently those things no longer happen -- to say otherwise, in Offit's parallel universe, would be anti-vaccine conspiratorial quackery.
Much of the book is a score-settling screed against anyone who's ever criticized him or vaccine safety surveillance, including Fisher, Jenny McCarthy and J.B. Handley. So it's no surprise that his "can't be done" argument against studying unvaccinated populations for any untoward outcomes arrives in the middle of an attack on Handley. Offit quotes J.B.'s comments on a Larry King segment in April 2009: "Larry, we have no idea what the combination risk of our vaccine schedule looks like. At the two-month visit, a child gets six vaccines in under fifteen minutes. The only way to test that properly would be to have a group of kids who get all six and a group of kids who got none and see what happens. They don't do that testing. They have no idea."
Offit's comment: "Handley was asking for a study of vaccinated and unvaccinated children. One result is certain: given recent outbreaks of Hib, measles, mumps, and pertussis, no vaccinated children would suffer and possibly die from preventable infections. It would be, of course, an entirely unethical experiment. No investigator could prospectively study children who are denied a potentially lifesaving medical product. And no university's or hospital's institutional review board worth its salt would ever approve such a study."
Offit goes on, outrageously, to compare Handley's proposal to the infamous Tuskegee experiment in which doctors withheld treatment from black males suffering from syphilis in order to study the natural course of the disease.
P-LEEZE. No one I know of is suggesting that a study of unvaccinated children deliberately withhold vaccination. Rather, there are growing numbers of never-vaccinated children in America -- a fact Offit acknowledges with dismay -- and plenty of families willing to participate in such a study. State governments have vaccine waivers on file for public school attendance that are another obvious source of non-life-threatening data.
The real problem for Offit is not an ethical one; the real problem is that any such study would trump all the self-interested industry and CDC studies that never manage to include never-vaccinated chldren as a control group. Informal efforts to do that -- by myself, J.B.'s Generation Rescue and others -- have pointed toward less autism and asthma, and been met by the medical establishment and its sycophantic sock puppets with an absolute frenzy of denial and misdirection.
In our book, "The Age of Autism -- Mercury, Medicine, and a Man-made Epidemic," Mark Blaxill and I discuss this aversion to doing the obvious. "A very simple test goes right to the heart of the vaccine controversy: What is the difference in total health outcomes, including autism, between vaccinated and unvaccinated populations? We would argue that we've uncovered a number of natural experiments in human populations that suggest we should be seriously concerned over the ever-increasing load of childhood vaccinations, especially in the United States. ... Oddly, when it comes to doing such studies in human populations, and studying the autism levels in the Amish, the homeschooled, or philosophical objectors, vaccine industry proponents resist mightily. Conducting human vax/unvax studies in existing unvaccinated groups would be so fraught with methodological problems that they are 'retrospectively impossible.' As for controlled studies, they would be so burdened with permission problems that they would be 'prospectively unethical.' In short, the resistance to the proposal to do vax/unvax work has not only taken the attitude that 'we already know the answers,' but 'we should not seek to know.' It's pretty hard to make scientific progress in the face of this kind of epistemological nihilism."
I am begging, on bended knee, that pediatricians quit putting Offit on a pedestal, and that mainstream journalists do their job and ask him why he is so averse to any study that involves the health of never-vaccinated children. Don't let him call you "anti-vaccine," and don't let him change the subject to the quite thoroughly separate issue of preventing deadly disease. That's an important topic, but there is room at the table for both effective public health policies against disease AND a fearless examination of whether today's vaccine schedule contributes to chronic health problems -- whether Paul Offit denies it or not.
Dan Olmsted is Editor of Age of Autism
Last week I had the privilege of introducing Dan Olmsted and Mark Blaxill as they stopped by Naperville, IL on their book tour. As I've mentioned before, their book had a profound impact on me; it's not every day you befriend individuals who will truly change the world and the course of humanity for the better. Granted, if there has been any bright spot in this Autism experience, it is that I have met many of those people, but these two gentlemen in particular have a special place among them. (Photo Mark Blaxill, Julie Obradovic, Dan Olmsted, Teresa Conrick.)
I don't think the significance of what they have uncovered can be over-stated. I have told them since the moment I finished reading The Age of Autism that I am humbled to know them. Perhaps it will be a while before people can come to terms with what they've written, but there is no doubt in my mind the day will come they are recognized for their triumphant achievement: bringing to light and beginning the end of The Age of Mercury. Nobel Prize. Pulitzer Prize. Either or both would be appropriate.
Unsure of how to express that in only the few minutes I had to introduce them, I tossed around some ideas of what I would say. Maybe I would share how I met them, or how they asked me to join the team here at Age of Autism. Maybe I would talk about our own experience and how grateful I am to Mark and the other original warrior parents. Maybe I would talk about blasting every article Dan wrote for his series to every person in my address book. I had a few ideas and decided it would be best to shoot from the hip with no script, just speaking from the heart.
About an hour before I left, I thought I'd try it out. No matter how hard I tried though, I just kept rambling, and as the time approached for me to go, I started freaking out. This wasn't good. No matter what I tried to say, I couldn't get across what I wanted. And then it hit me, just like that. I'll share it with you now.
In my "other" life as I sometimes refer to it, I am a teacher. I teach World Language (the new term to replace Foreign Language) at the high school level, primarily to very high achieving, highly motivated, college bound kids. Disciplinary problems are rare, and the parental support is stellar. I consider myself blessed, even if this group of students can present a different set of challenges than expected.
High achieving kids are tough in their own way. They are extremely hard on themselves and on their teachers. Many of them will tell you right to your face what they think of you, and they take a certain pleasure in catching you making a mistake. In the event you happen to make one, you can be sure you will hear about it. And if one thing holds true, they don't like being told when they do.
In the not so distant past, I have taken some criticism, and perhaps rightfully so, for commenting on scientific papers without a scientific background. My response to that has always been the same. What does it say about the science that someone without that level of expertise can clearly see the problems that those who consider themselves experts can not? None the less, I am not a scientific expert, I agree. I am, however, an expert at a few things. Teaching is one of them. It is my job to teach students how to pay attention to detail and how to reflect upon their work so they can grow. I believe I do it well.
In a short while, a new book by Dr. Paul Offit will be released. The title alone makes me shake my head in disbelief: Dangerous Choices: How the Anti-Vaccine Movement Threatens Us All. An honored guest, he shared this message with the American Academy of Pediatrics as a speaker at their conference this month. I'm sure we can expect to see him making the media rounds shortly. It’s hard to imagine highly educated, professional adults have allowed this debate to be hijacked to such an extent. Perhaps I’m naïve, but I truly am shocked that the leadership charged with children’s health has failed to stand up against this ridiculous fear monger-er and take back the integrity of their calling. Instead, they have chosen to make him their champion.
When Dr. Bernadine Healy spoke about the lack of studies existing to close the door on the causal relationship between vaccines and Autism, I remember feeling such relief. It wasn’t as much that she was well respected and was reiterating what we have been saying, but rather that she gave me hope there still were honorable professionals working for all of us and our children. If she could so calmly and rationally frame the debate in such a mature context (which is simply whether or not relevant and objective science has answered the question), perhaps there was hope we could move forward in civility. Alas it seems, no.
In addition to the fact Dr. Healy pointed out that the proper science had not yet been conducted, she quietly hit the nail on the head for why that is. There is a very real belief that the American public is too stupid to handle it, to which she countered, “I believe the American public is smarter than that.” We all need to reiterate this loudly and clearly so everyone finally gets it: The mainstream medical community wants to squash the conversation on vaccine safety because not only do they believe there are no safety concerns (they've studied themselves and found themselves not guilty over oversight failure), but more important, because they firmly believe any conversation that challenges that group-think will result in catastrophe; therefore, by deduction, the only way to prevent that from happening is not to allow a conversation at all. In other words, debating vaccine safety equals dead children.
The problem is, everyone is having that conversation anyway. And with the internet, coupled with the explosion in children’s chronic health problems for which they offer few answers and little help, information abounds for the curious parent, grandparent and caregiver to form their own opinion. Admittedly, 1 in 4 parents has real concerns.
By Julie Obradovic
Cleaning the basement last weekend I came across my college psychology book. Simply named "Psychology", the second edition had a copyright of 1991 and was written by four of the leading professors at my alma mater, The University of Illinois at Urbana-Champaign. That year I took Psychology 101 with one of them.
As I always do whenever I find old medical books, I immediately look for Autism. I wonder what they had to say at the time the book was published and if they can shed any light on it. As I mentioned in a post not that long ago, I have a 700 page book published in 1994 by the American Academy of Pediatrics referred to as the authoritative guide on all things developmental, birth to age 5, that doesn't even have the word in it. Apparently, they didn't think Autism was an important developmental problem at the time, in spite of the fact they changed the criteria to supposedly make it more encompassing that very year. (That's what we're told anyway.)
Interestingly however, my psychology book published 3 years earlier did indeed mention Autism. That's the picture of page 618 (click image to enlarge) and this is what it says:
"Autistic disorder is rare, occurring in fewer than five children per ten thousand births, but with few exceptions (Lovaas, 1987), it leads to a life of marginal adjustment, often within an institution."
Ten years after the publication of these very words, ten years after my eyes read over them and highlighted them in yellow, my baby became 1 in 100. Not rare. Not life long. No institution needed.
Julie Obradovic is a Contributing Editor to Age of Autism.
By Julie Obradovic
The first time I heard that someone had killed their child with Autism was several years ago. I was actually surprised there weren't more murder-suicides by that point in time, but I was certainly thankful there weren't. As I thought about the incredible stress so many people found themselves under, how isolated and desperate they were, and how completely overwhelmed and exhausted they were, it seemed almost inevitable that someone would lose it. Unfortunately, it has been inevitable. Parents are indeed killing their children with Autism.
I realize these murders induce tremendously strong feelings. Many people believe that absolutely under no circumstance is there any excuse for such behavior, and the perpetrators of these heinous crimes deserve not an ounce of pity or sympathy. Children by no means come with any guarantees, and at no point do we simply get to kill them because things didn't go according to plan. I get that mentality, I do. But I also have a deep desire to understand this behavior so that we can start to prevent it more effectively, if that's even possible. I'm afraid that if we simply shame or condemn parents who are having such violent thoughts they may be more reluctant to reach out for help. It's the most unnatural behavior in the world to kill your child. Clearly, clearly, something else is going on here.
One thing I have noticed about these acts is that they always fall into one of two categories: a planned murder-suicide that either kills them both or almost kills the parent; or a sudden, horribly violent attack with no attempt on the parents' life, but one that leaves them in a comatose and suicidal state anyway. This tells me that the parents are not acting out of selfishness, but rather agony and a very distraught state of mind. In a planned murder-suicide, the parent appears to feel obligated to also end his/her own life. They aren't murdering the child to run off to Mexico or go and finish grad school to further their career. They simply want the pain to stop for both their child and themselves and see no other way out. It's total and complete desperation. And in the instance of the violent attack, such as the recent stabbing, there's perhaps no thought what-so-ever. They just snapped.
Now, don't get me wrong, I'm not privileged to these peoples' state of mind, and I'm no doubt speculating. But as a mom who has suffered from depression, one thing I do know is that this was the hardest part of the Autism experience to share with anyone. I never felt comfortable talking to anyone about my feelings, especially since I feared I would be perceived as extremely selfish. There was no time for focusing on me, and really, I didn't have any idea how to manage the intense and profound sadness I was feeling anyway. It was better just not to deal with it at all than let it come spilling out messily with no way to clean it up. I always said I'd deal with it later. But funny thing, later always came out as anger and being ashamed of that only made the feelings worse, the perpetual cycle of guilt, shame, and pain accelerating in my own private hell. Thankfully, I never spent too long in one of those horrible places, but still, I remember that pain well. It was all consuming.
Stupid is a bad word in my house. Although I have to admit I can have a potty mouth at times, this is the one word that I just don't use, and if I do, you know I'm mad. I have never liked the word for so many reasons, but I'm especially sensitive to it now that I have a child with special needs. So for me to use the word in a post I wrote last week was a big deal. I called it, "Stupid is as Stupid Says" referring to the doctor-speak being used to describe the Hannah Poling reward. Trying to split hairs between whether or not vaccines cause Autism or just result in them is desperation at it's finest. No wait, it's stupid.
I was about to send it off the be published when low and behold, something else that struck me as pretty stupid happened. The Pediatrics journal published a study that's been hanging in the balance for oh, 9 years now, on the day sandwiched between the Poling reward and the release of The Age of Autism book. Talk about a genius marketing move. Not so stupid after all. But their PR campaign was not exactly what I was thinking of when I was speaking of the second stupid thing happening. It was the study they were marketing as more evidence thimerosal doesn't cause Autism that I found pretty stupid.
Over the next several days I tried to wrap my head around what was happening. The same week that the government was awarding an astronomical sum to a little girl for her vaccine injury that "resulted" in "Autism-like symptoms", the government, pharmaceutical industry, and medical community were promoting a study that told us once again vaccines, and specifically thimerosal, have nothing to do with Autism. Even worse, it was another study in the long line of mercury-apology studies that claims mercury is not only safe, but that it is protective against Autism. Sounds pretty stupid to me
Now, admittedly, the study doesn't come out and say, "Hey, guess what? Mercury prevents Autism!", but that is indeed what it implies.
By Julie Obradovic
When I started eating a lot of tuna while breastfeeding my daughter, I had no idea that I was possibly poisoning her. At that time, there was no mention of mercury toxicity and certainly no alarm bell being rung over how very dangerous this particular food was. Crazy enough, I don't even like tuna (adding tremendous insult to injury), but I was getting ready to be in a wedding and wanted to get my pre-pregnancy body back a little faster than normal. Not wanting to hurt myself or my baby knowing I was breastfeeding though, I tried to pick the most nutritious foods I could find. Over and over and over again, tuna showed up as a healthy choice, a responsible high-protein alternative to chicken. And so I ate it, even though I hated it, several times a week for many weeks.
It absolutely floors me that I took every precaution known at that time to protect my baby during and after pregnancy, and yet one of the most dangerous things I could do was completely unknown to me. I didn't start working out until she was 2 months old, well after the 6 week mark they make you wait for. I didn't smoke or stay around people who did. I didn't drink, and even when I had a glass of wine at the wedding, I tossed the milk out for days. I had the house baby-proofed with locks and outlet covers. There were gates on all of the stairs. My stroller had the safest reputation. My car seat was top of the line. I bought a mini-van with a 5 star safety rating. I washed all of the clothes in the gentlest detergent. I never missed a doctor's appointment; if she needed to be there at 2 months of age, we were there on the exact 2 month date. I read to her and talked to her all day long. The list goes on. You name it. I did it. Anything for the safety and healthy development of my child.
Kids still asleep. Coffee in hand. Open shades and a window. Beautiful day in Chicago. Pop on the TV to see what's happening in the world. Good Morning America. George Stephanopolous. Like him. Tune in.
What's this? A new study of a bunch of studies shows cholesterol medication may actually not be necessary, helpful, and perhaps even dangerous in people who don't have heart disease? You mean not everyone should be taking cholesterol medication no matter what? Dr. Richard Besser, GMA's go-to medical professional, weighs in. My coffee spits out.
Besser: "...We don't have experience looking at this in people over decades, which is really what we should do (comparing those who have heart disease and those who don't)....There are definitely side effects...We want to make sure they are only used in people who are going to benefit....Over time, more and more drug trials are sponsored by industry. And it's been clearly shown that industry sponsored trials are more likely to show a positive result....Not only are trials being sponsored by industry, the data are being collected by industry, they are being analyzed by industry, and written up by industry. For many trials....the lead author doesn't even get to see the primary data. They see the results tables and write up and sign their name on it."
Stephanopolous: "How do we trust all this?"
Besser: "Well, I am very skeptical, and I think people need to be very skeptical about this. You need to see a number of different trials. You need to understand who did these trials, and do they have a vested interest, a financial interest in the results."
Stephanopolous: "Should people stop taking their medications?"
Besser: "....Talk to your doctor if you have questions...diet, exercise, and stop smoking. Those are the things that stop heart disease! It's clear!"
Why doesn't this same logic apply to vaccines? In the land of unicorns and fairies, vaccines are portrayed as essentially benign. No side effects, only extremely-rare-well-worth-it ones that are probably only coincidence anyway. Industry being involved in the studies that say so is considered good science, not a conflict. Question that and you are a conspiracy theorist. Suggest that the government or medical institution is really no more objective given their ties to the industry, their role in the problem, the huge foreign policy and political ramifications they could face, the fact we're primarily talking about harming children and how emotional and defensive that makes people, and well my friend, you are not only a conspiracy theorist, you're a dangerous nut job.
I am growing increasingly tired of the real reasons there is such controversy regarding vaccines and Autism being misconstrued to make me look pathetic. Alison Singer's attempted explanation at Yale earlier this month (HERE) is a perfect example.
Contrary to what she suggests, our differences are not due to the internet. They are not due to desperation or the traumatization of having a child with Autism coupled with the need to blame someone. They are not due the media or the anti-establishment-toxic-earth movement. They are not due to the dismissive attitude of society and physicians who for years believed bad parenting was to blame.They are not due to an inability to simply accept clear science. They are not due to lack of an education or ability to think rationally. They are not due to being taken advantage of. They are not due to the cult of celebrity.
Wrong. Sorry. Not even close.
Turns out, the real difference is not quite so superficial and insulting. It is simply this:
1. You believe the government (the Department of Health and Human Services) has the legally protected right to research, develop, patent, license, supervise, judge, approve, recommend, mandate, and profit from a product (vaccines) that they produce in partnership with a private entity (the pharmaceutical industry). You further believe they have the right to simultaneously oversee the quality, safety and efficacy of this product, and that they objectively do so. You even further believe that they have the right to fund and conduct studies used to defend their product and policy in a court that they serve as judge and jury over in the event you are harmed by it; and moreover, that if they do find in your favor, they have the right to award you compensation at their discretion using money that was secured by a tax you paid on the product when you purchased it and/or were mandated to use it. And finally, you believe this should be protected by law; that neither the government nor the private entity should be held criminally or financially responsible for negligence in the event it maims or kills you.
Recent estimates are that up to 40% of parents are choosing to selectively vaccinate or avoiding vaccinating their children altogether. As a response, the public can soon expect to be exposed to a campaign to "vaccinate a wary public".
The strategy appears to consist of using fear, imagery, and insults as a way to gain greater compliance. Forthcoming Public Service Announcements with infectious disease victims. Conferences guiding physicians linguistically through tiresome conversations with seemingly misguided parents. Referring to concerned parents as anti-scientific. Censorship by the media at the government's request.
Predictably this strategy will fail miserably and likely only make the situation worse. Why? It misses the point of why parents actually aren't vaccinating.
Parents aren't opting out of vaccinating because they are too young to remember infectious disease. It isn't because they take the threat of infectious disease lightly and want their children to get it. It isn't because they are misinformed by the internet and media.
No, the real reasons parents aren't complying with recommended vaccination schedule are because:
1. Having a child with Autism far outweighs the risk of having or dying from any infectious disease right now, and anything that could possibly be contributing to the development of Autism, even if it means risking infectious disease, will be considered riskier.
2. They don't trust the denial of the role of vaccines in the development of Autism by the medical community or government because they are biased; they will be the entities held accountable for Autism if it is proven vaccines are indeed causal factors. Furthermore, they are both closely tied to the pharmaceutical industry that repeatedly puts profit over safety and has to have products recalled because of it.
3. Their reality is vastly different than what these groups are trying to convince them (that Autism always was this prevalent and problematic). A condition that was unheard of only 25 years ago is now the number one issue facing a generation of children and the only explanation offered for any of it is coincidence. Further, 1 in 20 families now has an affected child, with neighbors, grandparents, relatives and friends being eye witnesses to the regression and recovery of these children.
By Julie Obradovic
Not that anyone has noticed, but I've been underground for a little while over the last 10 months. In my life outside of advocacy I embarked on a professional growth project that required almost all of my little free time. Thankfully it is almost complete, as it has been one of the most intense endeavors I have ever undertaken. I'm anxious to be able to dedicate more time to Autism.
For those who don't know, I am a teacher. The process I underwent was to enhance my expertise, and I am confident is has. Centered on the framework of reflection, I spent literally months analyzing what I'm doing, why I'm doing it, and how I know if it is working or not. I was forced to analyze the effectiveness of everything from my materials to the physical setting of my room to the rate of my speech and so much more.
Perhaps the most frequent question I had to respond to was how I knew or not that my teaching was having a significant impact on student learning and finding the evidence to support that. That's a lot harder than it sounds, and like I said, the process forced me to dig deep. Likewise, I had to explain in great detail what I was doing to address the various learning styles and academic needs of my students. In the educational world, we call this "differentiated instruction".
Which really got me thinking.
I have an average of almost 25 students in all of my classes. Although I teach an elective that often does not see many children with special needs passing through (something I'm working to change), I do see a wide variety of learning styles, abilities, and needs on a daily basis. And although I use the same syllabus to guide me through the school year and approach the content I need to cover, my biggest goal is always ensuring the success of as many of my students as possible. The speed of covering the content never takes precedent over the process in which we do.
In one class, for example, I may have to address 15 different things in just one aspect of one lesson. Suzie can't hear well out of her right ear so I have to make sure to stand where she can. Johnny doesn't do well without paper and pencil tasks, so I have to make sure to modify whatever we're doing to meet his needs. Peter is visually sensitive to print on stark white paper so I have to make sure I used colored paper when making copies.
By Julie Obradovic
In light of the recent Vaccine Court ruling I thought I would again highlight for readers precisely what has and has not been studied with regard to Thimerosal.
The fact is, it is impossible, absolutely, positively impossible to exonerate vaccines and/or Thimerosal in Autism based on the current science. Honest, ethical, and responsible people have no choice but to concede that in good faith.
Remember, only 1 ingredient (thimerosal) and 1 injection (the MMR) have been studied for their relationship to Autism. No study exists on the combination of vaccines given to children in a real world setting, with or without additional environmental insults such as antibiotics, or with regard to genetic susceptibilities.
No study has looked at the possible effect of the synergistic toxicity of aluminum and thimerosal, which are never supposed to be used in combination (according to the Manufacturer Safety Data Sheet (MSDS) for thimerosal ) and are indeed combined in many shots (according to the Vaccine Excipient Summary from the CDC).
And no controlled study, not one, exists on the effect of low dose ethyl mercury toxicity in humans (a statement made by study author Anders Hviid himself below on p.1765).
Furthermore, the studies are overwhelmingly population based which is widely accepted as incapable of ruling out causation. The authors repeatedly fail to identify or seek out vulnerable populations.
And last but not least, there are the tremendous conflicts of interest presented by the authors, more often than not witnesses for the government in vaccine injury cases, vaccine patent holders, and/or employees of pharmaceutical companies that produce vaccines.
Almost a decade ago Steven Speilberg directed an Academy Award winning film most remember well: Saving Private Ryan. The story was simple and powerful. The government, having realized one family, and specifically one mother, had lost several of her boys in combat during the Second World War, felt obligated to protect her from losing another. They felt so obligated in fact, that they delegated an entire group of soldiers to change course, risk their lives and pursue nothing other than securing his safety. Some of those men died as a result.
Think about that for a second.
It was during a war, not just any war, but arguably one of the most gruesome, horrific, and dangerous wars mankind has ever faced, with everything at stake. In perhaps an unprecedented point in history, the world was truly faced with the potential of changing permanent course and not for the better. The human loss was staggering.
It was a scary, scary time. The enemy was identifiable and fierce. Our country was united, prepared, and dedicated. Men were drafted to participate in the war, but more often than not, were happy to enlist out of a sense of duty, obligation, and morality. Women at home lined up to do their part for the same reasons. The “Greatest generation” was more than willing to do whatever needed to be done, to sacrifice whatever needed to be sacrificed for the greater good.
And yet….and yet, and yet, and yet….in spite of everything there was to lose, even they acknowledged there was a limit on what one person was expected to give. Even they acknowledged that sometimes certain sacrifices are too much to ask of certain people. Even they acknowledged, sometimes those who give all deserve an exception.
By Julie Obradovic
You know, I was wondering. Is the rate of pizza consumption in Chicago related to the rate of obesity in Boston?
Or, just what is the likelihood of being diagnosed with obesity in a hospital within 3 month intervals over several years after eating pizza in Finland back in the early 1980's?
Or, how likely is it that I will have evidence in my gut of having eaten pizza that made me sick 12 years ago, but not by actually looking at my gut?
Or, in Japan, when nobody ate pizza with sausage, pepperoni, and mushrooms for a little while, but still ate pizza with either sausage or mushrooms, any chance the obesity rate dropped?
Or, what about the chance that if we looked at a whole bunch of people in the US who ate pizza that all gained weight afterwards, the pizza had something to do with it if only a significant amount of them developed obesity?
Or how about the likelihood that if you eat this pizza in the UK before you gain weight the higher the rate of obesity?
And finally, among those same people in the UK who eat this pizza, any evidence they are thin, then gain weight and then develop obesity in that order? And if a significant number of them don't, like say they were already gaining weight when they ate the pizza, nobody became obese from the pizza?
Oh, I'll stop. I'm just being silly. A little humor to introduce a really not so funny topic. And now I'm hungry.
What has been studied about the MMR?
By Julie Obradovic
Part 5 in the 14 Studies Series
I apologize. Originally this was going to be another nice, calmly written post like the others in this series, but given the recent H1N1 vaccine hysteria and imminent use of Thimerosal both there and in the seasonal flu shot (a total of 5 flu shots recommended for pregnant women and children), coupled with the US News and World Report article (HERE) with the AAP stating once again (yawn...) that there is no link between vaccines and Autism, that the science is qualitatively and quantitatively complete, and that it has been the most studied item regarding the cause of Autism, blah, blah, blah... I just had to write this angrily.
I have now presented the 14 studies on 3 occasions. Each and every time I do, I get more and more dismayed at the stupidity that is being called conclusive science. I used to be really polite, always professional, always giving the researchers and the nay-sayers the benefit of the doubt, but I just can't do that anymore. You have to willfully ignore and purposefully twist reality in so many directions to come to their conclusion, there's just no way to be nice about it.
So let's take a lookey, shall we? Let's copy and paste this to every yahoo group, every mommy blog, every facebook page. Let's look at what has actually been studied about Thimerosal and the context in which it has. Open the studies. Read them for yourselves. See what is being passed off as science these days.
I had the opportunity recently to spend some quality time with my college room-mates. Senior year we lived in a falling-down-stereotypical-college-campus-house, 8 of us total, all friends for the duration of our school days. They were some of the best days of my life.
As we all know too well, time moves on, adulthood settles in quietly, and before you know it, months, sometimes even years pass before you get a chance to see one another. Thank God for email which give you the chance to virtually keep up with all that is going on.
A few years ago we got tired of letting so much time pass, so we started scheduling annual girls’ nights or family barbeques. It was my turn this year to take the reigns, so I scheduled an overnight get-away to my parent’s lake house. We couldn’t wait.
At the last minute, a few of my friends had to back out, and slowly it became a small girl’s only get together rather than the big family bru-ha-ha I had intended. None-the-less, it was time well-spent.
After about 5 hours of catching up and 5 bottles of wine in the process, we started getting sentimental. Aren’t we so lucky to still have one another? Didn’t we have the best time together? Don’t you miss those days of having no responsibility? Yes, yes and yes.
But then someone said something that snapped me into sobriety.
“And aren’t we all so lucky otherwise? I mean, really, look at all of our lives. We’re all successful career women and moms. We’re happy and healthy. And granted, some of us have had a few bumps in the road, like you, Julie with Eve, but none of us have had anything really traumatic or awful happen to them. Really ,we’re so lucky.”
I didn’t know what to say. I sat there with my mouth open. A bump in the road?!
Part 4 in the 14 Studies Series
By Julie Obradovic
By now, I hope many of you have downloaded the studies from the 14 Studies website (HERE) , put them in a binder and have started to read them. If not, please consider doing so. This series is meant to prepare our community to best counter the common notion that “science has spoken” and vaccines have nothing to do with Autism. The more of us there are to do that, the more effectively we can change the trajectory of our children’s lives.
At this point we have established the true issue of the debate (should those who will be held accountable for Autism be able to investigate themselves); the context of the debate (the history of why and how they are allowed to); and the positions of those involved (whether or not Autism is a whole body disease with an environmental cause or a purely genetic disorder that is rooted in psychology, and what the implications of those positions mean for research).
We will now begin to examine the results of their internal investigation.
Part 3 in the 14 Studies Series
Okay, we’re almost ready to begin.
As you know, there are very distinct positions regarding Autism; what it is, what causes it, and whether or not it is treatable. If you are reading this, chances are pretty good you know what your position is.
But just as it was important to define the true issue of the debate (Part 1) and the context in which it is taking place (Part 2), it is equally important to clearly define the positions of the parties involved (Part 3). From there we will be able to analyze some of the research that has been done to support or discredit them.
Position 1: Autism is a Treatable, Medical Disease
People who take this position believe the first problem with Autism is its name. Autism by definition in one dictionary means “preference for fantasy over reality”, an inexplicable cluster of behaviors and symptoms that manifest for some unknown reason. (That particular definition makes it sound like it's even a choice.) It is categorized as a psychological disorder.
Please welcome Julie Obradovic and Katie Wright as our newest Contributing Editors. Julie is also the Education Outreach Coordinator for our sponsor Generation Rescue. Katie has elevated the discussion on vaccine safety to it's current, national level. We look forward to their continued contributions to Age of Autism.
By Julie Obradovic
Part 2 in a series on the "14 Studies." Read Part 1 HERE.
When I was getting my Master's Degree in Education a few years ago, I had to take a class on how to help students best develop their reading skills. Quite consistently we talked about the importance of making sure students are prepared to read by having the necessary background knowledge to understand it. Entire classes were dedicated to coming up with activities aimed at providing a decent backdrop for comprehension for students without the same world experience. In short, setting the scene and creating the context was and is considered vitally important.
This point has not been lost on me. As I mentioned in my first article, it is frustrating to read others that dismiss the connection between vaccines and Autism without citing the science they are using to make their claim.
Equally frustrating is the lack of background knowledge most of these articles give the reader. Autism and the controversy surrounding it is a complex issue to say the least. Without putting the controversy into the proper context, it leaves the reader more often than not with a biased and incomplete picture. To be sure, I actually can't think of many articles that ever do a good job of truly presenting the issue accurately.
That said, setting the scene for my series on the 14 studies will be the point. Dissecting the studies just yet is getting ahead of ourselves.
Autism One begins this week in Chicago. Dan, Mark and I look forward to meeting you. Our sponsor Generation Rescue is presenting their Fourteen Studies throughout the day on Saturday. Thanks to Julie Obradovic, Mother Warrior herself, for her time.
Many people and organizations claim the "science" published thus far allegedly looking at the relationship between vaccines and autism is both qualitatively and quantitatively conclusive. Often the studies to which they refer are cited in books, articles, and medical literature as proof that vaccines don't cause autism, and they are used as an excuse for why research money would be better spent elsewhere. A closer look at this "science" and the authors behind it, however, demonstrates profound conflicts of interest, a substantially inadequate methodology for identifying susceptible subgroups, and a complete lack of an authentic control group. Has the issue been investigated in an honest, objective, and thorough manner? This presentation will simply put forth the facts and let you decide. For anyone who has ever faced an unpleasant pediatrician's meeting when presented with methodologically flawed studies or those who would like to be prepared in advance, this presentation is for you.
Speaker: Julie Obradovic
Time: 60 minutes, throughout the day Saturday
Location: Wells Room, Lower Level