It’s Not my Fault This Issue Won’t Go Away. At Least, Not Only My Fault

Trigger warning: This post is about vaccines.

I start with a trigger warning because the post may affect you in either of two ways:

  1. You may believe your child was injured by one or more vaccines, and reading about the issue may evoke memories, regrets, guilt, even rage; or
  2. You may reject the idea that vaccine injury is widespread or connected to autism, and even reading the suggestion may cause anger and disillusionment with this blogger.

Better news: This post is not about whether vaccines are connected to autism. If you’re dying to know my opinion on that subject, click here.

This post is about perception of the vaccine issue and why, whatever the truth behind vaccine science, I think the tide will continue to turn against mandatory vaccination, at least until changes are made in drug approval, the liability scheme, and the way we discuss the whole matter.

“I Know Someone”

Let’s start with someone who likely falls within category 1, above—“You may believe your child was injured by one or more vaccines, and reading about the issue may evoke memories, regrets, guilt, even rage.” Earlier this year, in California for a doctor appointment, Martin and I decided to expend some energy at a trampoline park. We did not realize that we had happened upon a designated “special needs jump night.” The place was pretty empty, but apparently most of the kids who were there had some form of disability or sensory challenges.

Martin ran off to bounce. I sat on a bench with two other moms. They were discussing IEP’s and, soon, so was I. When one of the moms left, I continued chatting with the other. By then I knew that her four-year-old son was non-verbal and diagnosed ASD. She asked where we lived and what we were doing in California. I explained that my son had also been on the spectrum but now was getting better, and that we were in California to see the doctor who treats the medical aspects of my son’s condition.

That’s usually sufficient to end a conversation, or at least steer it in another direction. I find that ASD parents either reject biomed as impossible based on mainstream advice they’ve received, or else reject biomed because they are too overwhelmed even to consider dietary or lifestyle changes. Either way, they don’t jump to discuss. I thought this trampoline-place mom would fall into the second category; during the IEP portion of our conversation, she mentioned that she was a single parent, that her son’s father was entirely absent, and that she had trouble getting to IEP meetings and other school events. How could she want to add special diets and supplements to her agenda?

God bless her. I can’t fathom the strength needed to walk this path alone.

I was mistaken. She asked to hear more about what treatments we do, and about Martin’s diet. I tried to speak in gentle terms and be encouraging. As I was in the midst of saying that autism has an immune component, the mom interrupted me and blurted, “It was the shots, wasn’t it?”

I asked what she meant. She said, “Something happened to my boy. He got a bad fever after a shot and he wouldn’t stop crying. The doctor said it was normal, but my boy wasn’t the same after that. He didn’t talk anymore. And the doctor told me the shot didn’t hurt him, and that I had to keep giving him shots to stay in Medicaid, so I did, and I saw that he got worse every time.” With tears in her eyes, the woman looked at me and asked again, “It was the shots, wasn’t it?”

Readers, I was at a loss. I hadn’t said a word about vaccinations and did not expect the discussion to move in this direction. What could I say? From the few details the mom offered, it sounded like vaccine injury could be an issue—but no way would I share that suspicion with her. I felt like remorse and desperation had gathered themselves into human form and were sitting next to me.

The mom’s sudden response reminded me of a gym trainer I had two years ago. Training can involve a lot of chatting, and eventually we bumped into the topic of what I do for Martin, and his recovery process. “What do you think causes autism?” the trainer asked. I said genetics and environmental factors. He asked what environmental factors. I implicated unsafe food supply, overreliance on antibiotics, pesticides and pollution, disruption by electromagnetic fields, maybe a few others. The trainer asked, “What else?” I said Caesarian-section births weren’t doing us any favors. The trainer asked, “And what else?” I talked about sterile environments and lack of access to dirt and earth. The trainer asked, “And what else?” I relented and said, “Some people think vaccines are involved.” The trainer leaned close and whispered, “I know. I know all about it. My wife has a friend whose baby was injured. So my wife won’t let us vaccinate our kids.”

I know. I know all about it”—this came from a random 26-year-old suburban New York sports trainer who prides himself on “not reading too much.”

Why the vaccine debate won’t die, exhibit one: Too many people know someone they believe to be vaccine-injured.

“Nope. Forget it.”

On to someone who falls within category 2—“You may reject the idea that vaccine injury is widespread or connected to autism, and even reading the suggestion may cause anger and disillusionment with this blogger.”

This summer, I made a friend, an ex-pat North American already living a dozen years in Nicaragua. She knew about Martin’s challenges, at least his current challenges. (Think social awkwardness and emotional fragility, instead of screaming meltdowns and lack of functional language.) She knew that we follow a restrictive diet and have done various therapies. She did not know about the supplements, antimicrobials, enzymes, probiotics, mitochondrial support, homeopathy, neurofeedback, vision exercises, &c. Those details are reserved for the innermost circle of confidents. Still, I consider this ex-pat a reasonably close friend, and we speak openly with each other about the universe of matters not related to autism recovery.

One evening toward the end of summer, when Adrian already had returned to Nicaragua, he and I went out to dinner with this friend. The conversation was lively; Adrian is opinionated, and so is my friend. The talk turned to politics, and to subjects on which Adrian can see both sides of an issue versus subjects on which he sees no room for debate. (The dinner followed close upon a group of white nationalists parading clownishly around Charlottesville, which is I think how we arrived at the topic of “no room for debate.”) By way of intro, Adrian said something like, “You can debate a lot of things. How to stop global climate change, whether to pacify North Korea, late-term abortion, all the vaccinations—.”

Adrian mentioned vaccinations innocently, perhaps even Pollyannish-ly; his exposure to the topic comes mostly from his autism-obsessed wife, so he may just have been thinking, “Reasonable people can disagree on this one.” But upon the very mention of “all the vaccinations,” my friend exclaimed, “Nope! Not the anti-vaccination people. They are lunatics. [Expletive] lunatics.” No one had said anything about anti-vaccination. Adrian had suggested space for debate around the panoply of vaccinations currently recommended. My friend heard “vaccinations.” That sufficed to evoke immediate condemnation. No room, there, for debate.

Twenty years ago, one of my cats, Linsey, suffered a vaccine-induced fibrosarcoma. She developed a large tumor at the site of a rabies vaccination. I was a law student at the time. I paid for surgery to remove the tumor and then, having expended my savings, borrowed $5,000 from my brother Rudy and flew Linsey to Colorado State University in Fort Collins, where the Veterinary Teaching Hospital was one of the few institutions using electron-beam radiation therapy to prevent tumor return. (This was important because the Linsey’s tumor was adjacent to her lungs, so I didn’t want the radiation reaching beyond the tumor site.) After returning to Connecticut, where I was studying, I drove Linsey every few weeks to Angell Animal Medical Center in Boston for chemotherapy. Miraculously, Linsey survived this ordeal, only to succumb two-and-a-half years later to an unrelated carcinoma. Some cats have all the luck.

Throughout the entire course of these events, no one questioned that Linsey was vaccine-injured. The treating veterinarian, who first found the tumor, said immediately that it was vaccine-related: “I’ve seen a few of these, always at the site of injection.” I was asked to submit Linsey’s vaccination records to track the batch that had induced the tumor. Colorado State made her part of a study on treating these particular tumors. The doctor at Angell talked to me extensively about vaccine injury in cats and special precautions to take going forward. Five or six years after these treatments, long after Linsey had died, a researcher from Colorado State phoned me to track her outcome, for their records.

Of course, Linsey’s experience made me wary of vaccinating my cats. I asked a lot of questions, and veterinarians always took the time to discuss pros and cons with me, like whether exclusively indoor cats really need vaccines, the risks of vaccinating versus developing FeLV, or steps that had been taken to replace the adjuvants suspected in causing sarcomas like Linsey’s.

And when Martin came along, I tried to ask questions about vaccinating him, too. I attended presentations on vaccination, read books and articles. I formulated specific questions, like, “I looked up the contents of each brand of DTaP vaccine, and they all have at least 150 micrograms aluminum. One has more than 600 micrograms. I can’t locate any study indicating that those levels of aluminum injection are safe for a child of my son’s size. Have you seen any?”, or, “It’s hard to get statistics, but from what I have found, the rate of serious adverse reactions to the varicella vaccine might be higher than the chances of a serious reaction to the virus itself. Are we vaccinating in order to eliminate the virus in the general population, or are we seeking protection more particularized to my son?”

Martin’s pediatrician, to the extent she could, dismissed my questions without answer. Though she halfheartedly indulged my decision to do Martin’s vaccinations on a delayed schedule, she showed no interest in my reasoning or research. Instead, she served the usual banquet of platitudes: Vaccines are safe. Vaccine injury is a one-in-a-million occurrence. All theories linking vaccines to autism have been discredited. Until we started biomed, no one involved in Martin’s healthcare agreed to have a realistic conversation with me about vaccinations. A ten-minute conversation with my cat’s veterinarian over whether yearly rabies vaccines are worth the risk? No problem. Even a single disinterested, well-founded response to concerns about my own child? Wasn’t going to happen.

Why the vaccine debate won’t die, exhibit two: You’re not allowed to express a contrary opinion, or even a diversified opinion. You aren’t really allowed even to ask questions.

I Guess I Went to Law School for Some Reason.

In the United States, we have a (much-criticized, and sometimes justifiably so) system of tort law designed to shift resources among private parties in order to compensate victims of injury. If you are hurt—financially, physically, or otherwise—by a private party such as a corporation or a neighbor, you have a right to sue that party and ask to be “made whole.” Example: If your water heater explodes and you suffer burns, you can seek compensation from the company that sold the water heater, on the theory that the product never should have been put into commerce. Example: If your uncle drunkenly rams his car into your garage door, you can sue him for the cost of a new garage door.

In the late 1980s, vaccines were removed from this liability scheme. A law known as the National Childhood Vaccine Injury Act of 1986 established a National Vaccine Injury Compensation Program, or the “VICP.” (The citation is Pub. L. No. 99-660, 100 Stat. 3755 (1986), codified at 42 U.S.C. § 300aa-10 through -34.) Under the Act, the family of a vaccine-injured child no longer gets to proceed directly to a lawsuit (as would a person injured by, say, a pain medication or a statin). Instead, that family must file in the U.S. Court of Federal Claims, against the Secretary of the Department of Health and Human Services. Attorneys within the Office of Vaccine Litigation defend the Secretary.

After some 5,000 cases were filed under the Act seeking compensation for development of autism (this doesn’t surprise me) following vaccination, the Office of Special Masters within the VICP created an Omnibus Autism Proceeding, or “OAP.” The cases consolidated into the OAP ruled against the test-case families and held that vaccines cannot provoke the development of autism (nor does this surprise me).

A family dissatisfied by the outcome of a VICP proceeding may reject the determination and file thereafter in a federal court. In practice, a court is likely to accept a VICP determination of “no injury” as heavily persuasive, if not conclusive. Editorial note: I have no link to back up the foregoing statement about persuasiveness of VICP determinations in subsequent proceedings. The statement is based on my own years of legal practice in cases involving some form of prior adjudication, whether administrative or otherwise. Therefore, the possibility of litigating a court case to verdict and recovery barely exists. Moreover, as to the VICP itself, successful claims, as well as administrative costs of the program, are paid from a trust, which is funded not by vaccine manufacturers but by an excise tax for each dose sold of an included vaccine. Vaccine manufacturers are thereby insulated from just about any form of liability for injuries caused by their products.

Since the 1986 Act, the Centers for Disease Control has “recommended” ever-more vaccine doses. I use quotes around “recommended” because, in a growing number of states, failure to adhere to every recommendation precludes school attendance, military service, even some private-sector jobs. In the past five years, for example, California (with more than 12% of the nation’s population) eliminated personal-belief (including religious) exemptions from school vaccination requirements, joining West Virginia and Mississippi as states that don’t allow any non-medical exemptions. New York (with an additional 6% of the nation’s population) has been adding required vaccines for school, limiting the availability of medical exemptions, getting rid of personal-belief exemptions, and challenging religious exemptions.

The U.S. Department of Justice credits the VICP for virtual cessation of lawsuits against vaccine manufacturers:

A significant, positive result of the Program is that costly litigation against drug manufacturers and health care professionals who administer vaccines has virtually ceased. Although an individual who is dissatisfied with the Court’s final judgment can reject it and file a lawsuit in State or Federal court, very few lawsuits have been filed since the Program began. The supply of vaccines in the U.S. has stabilized, and the development of new vaccines has markedly increased.

Although I searched the CDC website (and the DOJ website, though it would be an odd location for such information), I found no mention of how we determine where, whether, or how many new vaccines are needed, or any gauge for evaluating the benefits of this marked increase in the development of new vaccines.

Why the vaccine debate won’t die, exhibit three: Instead of trusting families to make their own decisions regarding vaccination, our system forces them to vaccinate, creating an overflow market for vaccine products while also absolving the manufacturers from liability if their products prove unsafe. The incentives are—I’ll speak technically here—out of whack.

Our Own Personal Proof?

After Martin was diagnosed with autism and I began to recognize his immune troubles, I fought to keep him in school without further vaccinations. I had his blood drawn for titer tests to establish that he did not need the second MMR shot required for school. Martin’s regular pediatrician wasn’t available, so another doctor from the practice met with me to review the results. A measles (rubeola) titer is considered immune if the IgG exceeds 0.70. Martin’s level was 1.25. A mumps antibody titer is considered immune if the IgG exceeds 0.50. Martin’s level was 3.57. A rubella antibody titer is considered immune if the IgG exceeds 10. Martin’s level was 67.2. Look again at those numbers. Martin’s titers, even without the required “booster” shot, were 179-714% of the levels that establish immunity. The first MMR shot had sent his immune system into a frenzied hyper-response. What would a second shot have done?

“Oh,” said the substitute doctor as he examined the results. “Ah. I think, if you want, um, I think, would you like me to write an exemption from vaccinations for the time being?”

Why, yes, I responded. Yes, that would be nice.

From that day until we moved out of New York City, the substitute doctor became Martin’s regular pediatrician.

Why the vaccine debate won’t die, exhibit four: I still have something to say about it.

On Food and Genetics, and Judgment

Time to elaborate again on a comment response I made recently.

In response to my post about Martin’s golden week, I received this comment from a reader:

We are not on a biomed path as our son’s extremely restrictive food choices preclude this. Also his autism is visible throughout our family tree and heritable traits probably can’t be eliminated entirely by an altered diet. However our son’s behaviour varies considerably depending on who is looking after him and how secure he feels. Not all sides are helpful . . . while low-sal may well be helping don’t ignore the effect of his environment out of hand. There’s a lovely book called Uniquely Human about this sort of thing [that] might be worth a look. Thanks for writing—we are on a path much more to do with movement than food due to our family’s ASD presentation but we have the same burden of analysis and choices as you seem to! Bonne Chance

This was my response:

Thanks for reading! A few thoughts on your comment: I agree that environment is also relevant, and we pay a great deal of attention to environment and behavioral assists. But seldom (in my experience, never) do they yield an immediate effect; a substitute aide does not make a great day, or week—though a new aide certainly can change the course of the year. In terms of the biomed path, I don’t know of any child whose autism was corrected entirely by an altered diet. Diet is only the foundation of the healing path. Moving along that path requires supplementation, methylation assistance, detoxification, etc., specific to the child.

Genetic and inheritable traits also play a great role in my son’s condition. I would be naïve to think otherwise. Both my brothers have immune disorders, and psychological/psychiatric conditions (which I now would call health conditions) are endemic in my family. That does not mean my son’s autism cannot be lessened, if not resolved, through biomed. Epigenetics, neuroplasticity, and all that I know about the science of healing suggest otherwise.

In terms of your son having extremely restrictive food choices—well, that brings me to a paradox. In my experience working with biomed families, children who restrict their food choices are usually the biggest beneficiaries of biomed, once it gets going. The food aversions, which often have underlying digestive causes, tend to disappear once the irritants are removed from the diet. I would encourage you to give it a try!

But even if it’s not right for your family, that’s okay too. It sounds like you are doing a lot for your son in any event, and I hope it will get him where he needs to be. Whatever approach we take, we are all in this together.

These are the three points I’d like to discuss further:

  1. Picky eating is a reason to pursue biomed and dietary changes, not a reason to discount them.
  2. Genetics don’t always get to write a child’s future, at least not every aspect of the future.
  3. If picky eating or genetics are keeping you from pursuing biomed and/or dietary changes, that’s okay.

As to point 1—“There is no way I could do a gluten-free or dairy-free diet, because my son will eat only cheese tortellini, breaded chicken nuggets, and pretzels.” “I tried a special diet once, and she didn’t eat for three days. Literally. Finally I gave in because she would pass out otherwise.” I hear these statements frequently when other special-needs parents find out that we do biomed. I also hear their corollary, the failure-to-thrive argument: “My son is so skinny and small for his age, even though he eats a ton. I have to give him milkshakes constantly just to keep his weight up.”

Years ago, I attended a presentation by Dr. Arthur Krigsman. (Yes, I know Dr. Krigsman is controversial. At this point, I find that many doctors doing research and providing non-pharmaceutical medical treatment to children with autism are called quacks. I’ve had to get past that and start making my own decisions.) Although biomed parents (as far as I could tell) filled much of the audience, Dr. Krigsman was speaking as part of a panel discussion aimed primarily at physicians, and therefore much of what he said went over my head. I think I understood him to say that many children on the spectrum exhibit lesions and inflammation throughout the digestive tract, including in the esophagus and stomach. Dr. Krigsman calls this condition “autistic enterocolitis.” These lesions, like so much of what affects our children, originate from unbalanced immune response to normal gastrointestinal action. Picky eating, or food aversions, might be a sign of pain from such digestive troubles: Kids express their hurt by avoiding the foods that exacerbate that hurt. In such a scenario, a kid who is not eating, or is severely restricting his own diet, needs biomed. Like, really, really needs biomed, or some form of medical intervention to begin healing the digestive tract.

Speaking from my own experience, when Martin was young, before we started biomed, he “postured”: He would bend forward with his stomach tight and his fists clenched at his side. He also slept with “elevator butt.” (I stole that term from one of my law school classmates, who used to scratch the base of my cat’s tail, then yell “elevator butt!” when the kitty straightened only her back legs.) Martin frequently slept with his face smashed into the mattress and his butt in the air, as if to relieve pressure on his gut. Both the posturing and the elevator butt ceased within a few months of dietary changes. Whether he actually had enterocolitis, or just some lesser form of irritation, I don’t know. But he was in pain, and a restricted diet relieved that pain.

During Dr. Krigsman’s presentation, I couldn’t help but think of “Jonas,” a boy I know with undiagnosed behavioral issues that resemble seizure-related oppositional defiant disorder. At the time, Jonas would eat nothing but processed yogurt drinks or green shakes. I searched for a way to raise the issue of entrocolitis with his mother, a single woman constantly overwhelmed with managing Jonas’s behaviors and shuttling him to various therapies, including eating therapy. I never found the right moment, or non-threatening way, to bring it up. I consider that a shortcoming.

I don’t believe that “autistic enterocolitis” is the only reason a kid on the spectrum might avoid foods. Martin’s friend Bobby, who is on a GFCFSF diet, limits himself even further because of taste and texture issues. He will not eat soft or chewy foods. Martin himself would be happy to repeat his two or three favorite foods every meal. I consider that a form of perseverative behavior. Again, these are issues best addressed (in my world view) through biomedical intervention, to resolve what’s causing the aversions or perseveration—although I don’t discount the complimentary role of behavioral therapy, such as RDI.

As to the child who allegedly needs milkshakes to put on weight, if a boy eats and eats but cannot gain weight or grow taller, plainly he has a health problem that is not being addressed. His body is not processing the food’s nutrition adequately, which means he probably isn’t getting the foods that his body can process. Which brings me to dietary changes . . . .

As to point 2—I have heard from parents who say they don’t have any reason to bother with biomed because genetic mutations are to blame for their child’s autism. I get that. I really do. Once you discover what havoc genes can wreck, it can feel almost pointless to try altering the course. Even without the genetic component, it can feel almost pointless. I’ve been at this six years, and we aren’t “there” yet, wherever the heck “there” is. But consider two factors. First, genetics are often a predisposition, not a path certain. Genetics might set the stage, but environmental factors often raise the curtain. You know my favorite environmental villains: processed foods, glyphosate, pesticides, C-sections, antibiotics, vaccines (gulp! I said it again), pollution. Carrying the silly set-the-stage analogy further—if environmental factors raise the curtain, then altering the environmental factors can change lower it again. Even if, for example, a vaccine activates an MTHFR mutation, interventions to restore the immune system can calm the mutation.

As I wrote in response to the blog comment above, I recognize the role Martin’s genetics played in his development of autism. Without going into too much detail (even though FindingMyKid is written anonymously, I feel icky about compromising privacy), my family has genetic gifts—for example, we are “book smart” and breeze through standardized exams, and we are not prone to obesity—and shortcomings. Both my brothers have immune disorders. The elder suffers from a wide range of food and environmental allergies, plus eczema and chronic bronchitis. The younger has environmental allergies. Long before I produced Martin, I myself fell victim to depression, a disease also prevalent in my husband’s family. There’s addiction on both sides of the family tree. So when it comes to immune and related disorders, genetics were not in Martin’s favor. Genetic testing has confirmed the existence of mutations that make him susceptible to autism.

As I understand the history, decades ago we might have been advised against vaccinating Martin at all, based on immune disorder in the immediate family. Let’s add that Martin’s vaccinations followed Pitocin, loss of heart rate during labor, an unplanned C-section, antibiotics in the NICU, and plenty of immune insults I don’t need to repeat again.

The way that I look at it, Martin’s genetic predisposition to immune disorder made him vulnerable to the effects of environmental factors, and now makes our path to recovery more arduous. But it is no reason to abandon him to (perceived) fate.

Then there’s the matter of epigenetics. According to this helpful webpage, epigenetics is “the study of potentially heritable changes in gene expression (active versus inactive genes) that does not involve changes to the underlying DNA sequence—a change in phenotype without a change in genotype—which in turn affects how cells read the genes.” That means that environmental circumstances can cause genes to be silenced or expressed over time. We can influence which genes express themselves, and how. I’d like to seize that power, to whatever extent I manage.

As to point 3—I’ve said this from time to time, and it bears repeating: You don’t need to approach autism biomedically to be my friend. Doesn’t that sound ridiculous? Because this is a blog about biomedical recovery from autism, and because I unabashedly favor biomed, I worry that I must come off as an intolerant person. Since FindingMyKid is written anonymously, I have to ask you to take my word for this: My blog personality and my live personality are different. By now, a large percentage of my acquaintance comprises families affected by autism. Half of those families, I estimate, are pursuing biomedical recovery. The others are not. It’s like having friends who don’t love the New York Rangers, or even hockey in general. I prattle about the Rangers, they listen kindly, and then we find connection in whatever petty topics non-hockey people enjoy. When it comes to friends who have children on the spectrum but don’t pursue biomed, I answer questions (when asked) about what we are up to, I ask what they are up to, and we find connection in the stuff we both know, like sleepless nights, IEP meetings, adaptive sports.

I had the advantage of implementing dietary changes when Martin was just two years old, when he was more malleable. Maybe you don’t want to change your child’s diet because he’s picky, or underweight, or you’re skeptical about biomed. Or maybe dietary changes are too much to manage with a large family, or small budget, or unsupportive co-parent. Maybe knowing your child’s genetic make-up has convinced you that biomed interventions would be fruitless. Maybe you are making satisfactory progress with behavioral therapies. That is totally fine.

Judgment does not become us.

I Am That Person. I Am That Mom

Social media. Ah, social media.

I made my first post about my uneasy relationship with social media five years ago, explaining why I blog anonymously. Two years ago, I posted again, bemoaning the lack of civility on-line, even among acquaintances.

I love Facebook, for the connections to old friends and my autism recovery groups. I also recognize the wisdom of keeping my mouth shut on controversial topics: Social media rarely allow for productive and thought-provoking exchange; users prefer to post dumbed-down memes and wait for comments that support their opinion.

What I need to get past, these days, is feeling personally attacked by others’ posts. Take, for example, this sketch that appeared recently on my Facebook wall:

IMG_3702

The implication? That a mother whose child eats only organic, homemade food doesn’t “live[] in the real world.” But I live in the real world. And my child eats only organic, homemade food, except for a few commercial, raw snacks and occasional meals at pre-approved restaurants.

Or how about this post?:

FullSizeRender

Indeed! It’s me! I eat seedless (organic!) grapes and complain that GMOs are unnatural! I know the difference between selective breeding and genetic modification. Selective breeding is vertical genetic transmutation within a given species. Genetic modification is transmutation of genes horizontally, across species. Totally different.

I don’t respond. Why waste thoughtfulness?

I’m sure you can imagine how I felt when a friend posted a link to an article purportedly tying a measles outbreak to “anti-vaxx” parents and asked, “Who are these medieval people???”

Me again! Not only as the parent of an immune-compromised child, but also as an attorney, I have concerns about the current vaccination regime. We’ve exempted these potent pharmaceuticals from the usual liability schemaand the safety assessment protocol lends itself to manipulation as vaccine after vaccine after vaccine is pushed onto the recommended schedule. At the same time, legislatures are seeking to move these injections from “recommended” to mandatory, i.e., to restrict even exemptions that are based on valid health concerns. The whole pharma-driven plan invites rising vaccine injury rates, and I hope to witness more Constitutionally based challenges.

 

The list of Facebook zingers is long. I resist the urge to respond, “I’m glad you asked. I am that person.” I resist because I will end up only frustrated, and because fighting those virtual battles can sap energy from the real task at hand, Martin’s recovery.

But as usual, I am conflicted. Many of these types of Facebook “status updates” come from acquaintances who, I think, respect me and/or my professional competence. They come from law school classmates and from co-workers, from the siblings of childhood friends and from distant relatives. If I were to argue almost any valid opinion face-to-face, they would probably take note. I might even sway them.

If I am a person who may have influence over pro-vaccine, organic-bashing lovers of genetic modification, maybe I have a responsibility to speak. Or maybe—if I speak against pro-vaccine, organic-bashing lovers of genetic modification, I will lose whatever influence I have to command.

A conundrum.

A conundrum not limited to Facebook. An older relative, for no apparent reason other than knocking a chip from my shoulder, told me he was getting a Zostavax shot against shingles. I suggested that he might want to weigh the side effects, and that Zostavax is counter-indicated for people who’ve been treated for cancer (as he has). He blew off my concerns (which was likely his intent from the moment he brought up vaccination out of the blue). He said: “I believe in science.”

Science? What did you read before reaching this decision? I can show you the studies I’ve reviewed. I understand your concerns about shingles. On the other hand . . . wait. You haven’t done any research whatsoever? You saw a commercial that said a shot would protect you, so you’re going for it, no more information necessary? Good call.

Waste of breath.

When I started this blog years ago, Martin’s biomed doctor said, approvingly: “We have parents telling everyone they know that recovery is possible, and no one listens. You’re an Ivy-League-educated lawyer who can write, and a stickler for facts. Maybe they’ll listen to you.”

Maybe they won’t.

In my blog, I speak freely, When it comes to social medial, I’m better off trying to find points of agreement. Let’s go back to “Deborah,” who “loses her s**t daily & knows every honest mother does too”:

At least I can admit that I’m an “honest mother.”

Civility

I know that I should stay off social media, other than maybe the autism-recovery groups I enjoy.

I definitely know that I should refrain from taking the bait when people post uninformed opinions on topics about which I have, well, more informed opinions.

If you read this blog, you probably have thoughts about vaccines. I do. I’ve posted about the link that I think exists between vaccines and the symptoms of autoimmune disorders, symptoms like “autism.” It’s such a controversial topic. I try to read as much about vaccines, on both sides of the issue, as my schedule allows.

Which makes me ripe for a bad Facebook experience. I made the mistake of responding to a post by a guy I knew well in college and now know only through Facebook.

This Facebooker, the guy I know, posted an opinion piece deriding “anti-vaxx” celebrities. (“Anti-vaxx” was used in the posted piece. It’s not my term. I don’t think raising efficacy or complications concerns, or questioning ingredients, is necessarily “anti-” vaccinations). Beneath the link to the opinion piece, the Facebooker said something like, “It is a sad commentary on our society when people are willing to accept celebrity ‘opinion’ over scientific fact.” He then went on to compare “anti-vaxxers” to people who deny evolution or global climate change.

Within the comment thread under his post, the Facebooker asserted, without citation, that “any link between vaccines and autism has been scientifically disproven.”

Best course for me to take in such a situation: turn off Facebook and walk away.

Course I did take, this one time: I commented. I wrote:

“Can you point me to the study that you are referencing? I’m not advocating one way or the other. I am aware of studies suggesting the absence of a link, and of studies noting that vaccinations can cause neuro-disruptions. But I’m not aware of any study that compares autism rates in vaccinated versus unvaccinated populations.”

Then, lest anyone think I have a connection to autism (we’re not public about Martin’s diagnosis), I added:

“I am concerned about this topic because at age 12 I was very sick with measles, despite having been twice vaccinated against it.”

What did I want to achieve by commenting? I don’t know. I was frustrated. The Facebooker’s comment made no sense, empirically or otherwise. We cannot “scientifically disprove” a link between any two occurrences; the most we can do is, while attempting to control for other variables, demonstrate that the occurrences arise no more often in conjunction than they do independently. In the case of autism and vaccines, I know, that rigorous work has not been done. This Facebooker was carelessly spouting an untruth.

In seconds, without thought or ceremony, he responded: “There. Is. No. Fucking. LINK. NONE. STOP.”

And I, shocked, wrote: “Um, okay. That sounds scientific.”

Most of this is likely not verbatim. I recall, exactly, his comment, “There. Is. No. Fucking. LINK. NONE. STOP”—periods, explicative, and all. As for the rest, I am recreating the conversation. Immediately after I wrote, “Um, okay. That sounds scientific,” the Facebooker deleted the link and the comment thread, and replaced it with this status update:

“You’re not going to spoil my happy today. Period.”

Under that “spoil my happy” status came this comment thread:

Random commentator: “Oh, see now… someone’s going to try!”

Facebooker I know: “Already has. Why do you think I posted it? What it comes down to is this. To the world: As much as you are obviously in love with your own opinions, I DON’T CARE!!!!!! You may not care about my opinions either. That’s fine. No skin off my nose. BUT I DON’T CARE!!!!!!!!!”

Random commentator: “Ah, see, I almost had a sarcastic comment for your last post.”

Facebooker I know: “I swear to God, you could post that 1+1=2 and there’s going to be someone who argues with you. Not having it.”

Wow, right? This Facebooker, as I said, is a guy I knew in college. I’ve seen him once since college, when he was in New York a year or two ago, and we had a nice lunch to catch up. No prior animosity. Nothing. That explosive reaction resulted, as far as I know, 100% from my question about “scientific disproof” of a connection between vaccines and autism.

I commented no more. Instead, I took my boldest Facebook action ever. I stopped “following” the guy. I didn’t go so far as to unfriend him. Unfriending just isn’t in my nature. But now that I’ve stopped following him, his posts no longer appear in my news feed.

It’s justified. Around when Demi Moore was separating from Ashton Kutcher, this Facebooker posted a picture purporting to show cellulite on Demi’s legs and chastising her for not spending enough time on a treadmill. As if women don’t have enough trouble with body image! Demi Moore weighs, like, 70 pounds. Then, during the 2012 NFL referee lockout, when the league used less-experienced substitutes, this Facebooker complained about a game by posting something like, “These replacement refs are really ‘special,’ and I don’t mean that in a good way.” You see the problem there: He’s implying that the referees have special needs, which is “bad” and appropriate for ridicule. The way I see it, the vaccine incident was strike three, and this Facebooker is out. Or at least un-followed.

There’s a real shame in this story. In the original “anti-vaxxers” link and comments—the thread that the Facebooker deleted because he was “not having” any “argument”—there was a comment from a third-party who self-identified as a person with autism. She wrote something like, “Even if there were a link between vaccines and autism, people who abstain are suggesting that they would rather lose a child to preventable disease than have a child like me.” I would have appreciated the opportunity to follow up and engage that person further.

No such luck. Some topics, it seems, are just no longer available for discussion.