Tag Archives: vaccines

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

Posted on by findingmykid
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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 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.

I Am That Person. I Am That Mom

Posted on by findingmykid
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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:

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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?:

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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 schema, and 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.”

Del Sur V: Manifesto

Posted on by findingmykid
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“Do you know?—maybe it’s possible that he never had autism?”

These words were spoken innocently, by a sympathetic party, and (I suspect) without forethought. It was late evening in South America. Martin was asleep. My mother-in-law and I sat in her kitchen, chatting, I with a glass of white wine, she with her pisco sour. We were discussing Martin and his progress; I mentioned that his official diagnosis had changed from ASD to ADHD with social/pragmatic language delay. My mother-in-law responded, “Do you know?—maybe it’s possible that he never had autism?”

My mother-in-law supports everything we do for Martin, and does her best to accommodate; we arrived from New York to find her fridge stocked with organic produce (still hard to procure in her area) and a cow knuckle and vegetables simmering on her stove, for Martin’s broth. That being said, I’m not sure she fully understands biomed, or our start point and desired endpoint. This is no criticism of my mother-in-law. I’m not convinced that anyone outside the thick of recovering a child understands autism or what healing requires. I’m not even convinced that I understand autism or what healing requires; I’m just a few paces farther down that road than others are.

Still, when my mother-in-law offhandedly suggested that maybe Martin never had autism, I bristled. I bristled because I think I will hear that suggestion a lot, as Martin continues to become more typical. Already I hear hints. A friend who has a mostly nonverbal seven-year-old and does not do biomed remarked recently about how “maturity” is resolving a lot of Martin’s issues. The friend meant no harm; in her mind, biomed doesn’t work, so she needs something else to explain Martin’s emergence from autism. (I didn’t pursue the issue further. I’m cautious, with other autism parents. We’re all doing what we think we can.) And remember the neurodevelopmental psychiatrist’s words? According to her, Martin developed functional language because he was “not destined to be a child with receptive or expressive language problems.” It’s not biomedical interventions. It’s destiny!

I know, from other blogs and on-line communities, that parents who manage to recover their kids from autism face skepticism that their children ever had autism. You may ask, why should they care? The opinion of naysayers doesn’t affect their children’s recovery. Why should I care if another autism parent wants to chalk Martin’s ongoing recovery up to “maturity,” or a doctor implicates destiny over hard work?

Well, I care, we care, everyone should care, because denying biomed has far greater implications than just adhering to ingrained misconceptions about autism.

It is possible to recover from autism. Not to learn to live with autism’s symptoms, which is what behavioral therapies teach, but to eradicate autism by treating the disorder’s underlying medical causes. I know this to be true, because my son is recovering from autism. I’m not deluded. I have the blood work and urinalysis evincing his medical issues. I have the series of neurodevelopmental psychiatric reports describing his detachment, his lack of language, his emotional instability. I witnessed too well his lethargy and physical discomfort. I endured his sleeplessness. I have watched, over five years, as his medical issues alleviated and the autism symptoms improved in tandem.

Every case of autism is different. Yet there are commonalities. The presence of autism points to an immune disorder rooted in the gut, where 70% of the immune system resides. A healthy gut biome has plenty of good bacteria to keep germs and infections at bay. When something depletes the good bacteria—say, antibiotics, or glyphosate—the bad guys start to party. Any further insult, like insufficient vaccine absorption or exposure to environmental toxins, can cause the whole immune system to jump its rails. When you’ve got no properly functioning immune system, you can find yourself with a host of secondary problems, like neuroinflammation, excess propionic acid, a struggling thyroid, glutathione depletion and methylation troubles, opportunistic infections, an inability to secrete heavy metals. And then? Neuron misfires. The endgame that manifests in autism.

Autism rates are on the rise. Stunningly. Think of those graphs that represent worldwide human population: Autism’s growth is similarly exponential, even according to conservative CDC figures. The epidemic is not the result of greater awareness, or expanded diagnoses; if it were, we would expect to see most cases clustered at the mild, almost debatable, end of the spectrum, where the merely “quirky” kids reside. Instead, new autism diagnoses litter the entire spectrum. Non-verbal, acutely affected autism is on the rise just like Asperger’s. Those who deny the rising autism rates are the willful ignoramuses and the irrational optimists. I am out of patience for either.

We don’t know, yet, what “causes” autism, though every day we learn more about factors that may contribute to the development of autism. I mentioned a few above: overuse of antibiotics, unsafe vaccinations, pesticides. Activists speculate about the role of pollution, about electromagnetic fields, about C-section births (or not) and the newborn’s chance to benefit from the vaginal biome. Genetics also play a role, such as the MTHFR mutation or UBE3A mutation.

(Note this: Accepting that genetics play a role in development of autism is not saying that we “can’t do anything about” the autism epidemic. The genetic predisposition to autism has probably been around many generations; only now do new environmental triggers spur the subsequent development of the disorder. Plus, more and more we have to speak not of genetics proper, but of epigenetics, mutations with the capacity to arise or dissipate between generations, or even within a single generation.)

Which brings me to many people’s resistance to accepting the notion of biomed. If we accept that we can reverse autism by resolving the factors that caused it in the first instance—then we admit that something is causing autism. Based on the exploding autism numbers, whatever is causing autism is getting worse. In an over-hygienic world devoted to unlimited consumption, exploitation of animals and the environment, a pill for every ailment, and the temple of convenience, we are doing something wrong. Disastrously wrong. In that regard, progress has stopped. Unless we change course, each successive generation will pay a higher bill for our abandonment of what is natural.

Unfortunately, almost no one seems to want to change course. So people deny that autism is on the rise, or that autism has causes, or that autism can be treated.

This is why I bristle to hear that maybe my son never had autism, or that he’s moving off the autism spectrum because of something other than biomed. It is also why I do not support the “neurodiversity” movement. Don’t get me wrong: I support the goal of inclusion and accommodation for persons living with autism. Did someone insult or exclude your family member with autism? Call me. I will gladly rush over and go Brooklyn on the jerk. But do not hand me acceptance of autism itself as a policy for dealing with skyrocketing autism rates. Do not tell me that autism is “just how some people are” and should not be addressed, because I will respond that schizophrenia and depression—other disorders with medical underpinnings—are also “just how some people are,” and give lie to how misguided neurodiversity is. People with autism should be accepted. Autism itself can, and should, be fought.

We can learn to live with just about anything. City dwellers learn to live with constant light and noise pollution. Our world may be on the verge of learning to live with catastrophic climate change. This ability to adapt does not mean that we should fail to recognize and correct our own mistakes.

My son had autism. My son still has ADHD. One day my son will be neurotypical. Treating his disorder biomedically has made this progress possible.

Full stop.

Money

Posted on by findingmykid
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I call myself a fiscal conservative and social libertarian. I support capitalism. I think that, ultimately, the self-interest that capitalism engenders moves “the group whole” forward. Capitalism isn’t an ideal system, but we don’t live in an ideal world. Altruism, community spirit, and a peaceful life unfortunately don’t provide sufficient motivation. Instead, we—we humans—like to compete. A properly regulated and administrated capitalist system should enable workers to choose how they want to profit: financially, with free time, through notoriety or renown, in job satisfaction or altruism, &c. A properly regulated and administrated capitalist system, I think, functions best on the shoulders of an educated populace, and a profit engine that responds to its demands.

I’ve said before: I’m wildly simplifying. A blog post allows only so much depth.

One particularly American notion that I like is the marketplace of ideas. An arena for vigorous debate enables participants to consider and reject, to separate the (non-glyphosate, organic) wheat from the chaff, to ponder what makes stupidity stupid.

Congress shall make no law . . . abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances. Boo-yah.

I also believe that what’s happening to our health, to the immune systems of our children, to the neural functioning of our elderly, results from profit motivation. From greed. Glyphosate, genetically modified organisms, inadequately scrutinized vaccines, a world blanketed in electromagnetic radiation—some part of these developments might arise from a desire to feed the world or protect health or push us forward, but the greater instigator is financial advantage. (Don’t go all frenetic on my implicating this partial list of immunity bandits. I’ve admitted that I don’t science. I’m figuring out what I can, from the resources I have. I’m working on a blog post that lays out my own understanding of glyphosate and its role in autism rates.) Profit-seeking is running amok and trampling the vulnerable. Not the traditional vulnerable, like the poor and migrants. The newly vulnerable victims of our own success.

Run Away from Autism Recovery! It’s Like the Plague!

Last month I invested ten minutes reading a blog post titled “Autism: Whom to Trust, and Whom to Run from Like the Plague.” The author’s thesis is that autism is not treatable biomedically, and that any organization that supports treatment of autism is suspect. More than suspect, actually. TACA, AutismOne, Generation Rescue, they are all really, really bad. Like, plague bad.

The blogger implicates even Autism Speaks, which is a gigantic and wealthy organization that does not advocate biomedical treatment of autism. Autism Speaks concerns itself with raising money and “awareness,” as if, with ASD rates what they are, we need “awareness” more than research. The blogger’s beef with Autism Speaks is that “Only recently, Autism Speaks reversed its stated position on vaccines. For two years prior, they claimed that there was a connection between vaccines and autism.” In a move that marks the blogger as a likely outsider to the autism community, she mis-cites the slogan “Autism Speaks doesn’t speak for me.” She apparently attributes that slogan to (1) “actual autism advocates” who are angry that Autism Speaks, once, mildly, gently, suggested that vaccines may play a role in the development of ASD symptoms, or (2) persons on the spectrum who self-advocate against treatment. Quite the contrary: “Autism Speaks doesn’t speak for me” comes from families like mine, the ones who are angry that Autism Speaks raises the lion’s share of resources but doesn’t address health or cure.

The blog I’m talking about is called Dawn’s Brain and written by “Dawn Pedersen,” who describes herself as “a science advocate, web designer, educator, artist, and mommy.” Her qualifications are “a BA in fine art, an MA in education,” and “an AS in biology” that she will “complete . . . this fall.” As you know, I’m not a medical professional or an autism authority. Still, I (Martin’s mom) am, um, a “science advocate” (when it comes to the science behind immune disorders that manifest as autism), an “educator” (when it comes to addressing the immune disorders that manifest as autism), a lawyer (no asterisk; I just am), and a mommy. I have several impressive-sounding, albeit functionally limited, degrees: a B.A. in religion, magazine writing, and German literature; a master’s in religious studies; an M.F.A. in writing. I have a somewhat-more-useful juris doctorate, and have passed more than one bar exam. Plus, even though I don’t science well, I am smack in the middle of a Ph.D. in autism recovery studies from the University of Martin and His Doctors. I therefore declare myself even more qualified than Dawn Pedersen to talk about autism.

We Are Polarized

Given that Dawn Pedersen seems to be an outsider to the autism community, whose major qualification for assessing that state of autism research is working toward an associate’s degree in biology, it is fair to ask what’s motivating her to deride promoters of biomedical recovery.

I read through the comments to the “Avoid Like the Plague” post. Consider—

Comment from a Reader Named Carmen:

I’m sorry, whoever in the world does not think that gluten/dairy are inflammatory foods that in turn have a negative neurological effect on humans in general but even more so on Autistic people [is] in denial and not looking at the evidence. . . . My 3 year old is autistic and I have seen [LEAPS] and bounds improvement with his overall happiness with these diet changes. . . . Maybe it doesn’t work for every kid/person and it certainly doesn’t “cure” autism but it absolutely eases some of the undesirable (for my son) symptoms. I could go on and on. I guess you’re also saying that refined sugar, chemicals in our food, dyes and gmos don’t make things worse[—]asinine!

Reply from Dawn Pedersen:

All our foods are made of chemicals. Refined sugar breaks down into glucose in our digestive system like any other carbohydrate. There is nothing wrong and everything right about genetically modified foods.

Do you have a plausible explanation for how nutrients can travel backwards in time, to reverse differences in cognitive development in the womb?

You are promoting the very nonscientific explanations I am decrying. You’re promoting ideas that are victim-blaming, and without evidentiary merit or plausible mechanism.

More comments pile on, criticizing Dawn Pedersen for dismissing the experience of an actual autism parent, asking Dawn Pedersen if she’s heard of the CDC’s William Thompson, thanking Dawn Pedersen for her list of organizations to avoid like the plague because it actually provides a handy chart of good resources. To these comments, Dawn Pedersen doesn’t respond.

Her blog, it seems to be, represents a trend: polarization through outright dismissal of any view that isn’t our own.

Polarization: No Open Exchange, No Transparency

Polarization is the opposite of transparency and open exchange of information and ideas. I heard a commentary on NPR opining that it is dangerous and unnecessary even to present vaccine-safety concerns, because the CDC’s vaccine views have no valid counterpoint. NPR is wading into paternalistic reporting, discerning what Americans need to hear and disregarding the rest. (Sorry to pick on NPR. Every mainstream outlet does an abysmal job covering vaccine safety. Investigative journalism? Not. There is even a TED talk arguing, in part, that parents with vaccine concerns should not be heard.) According to recent polling, 52% of American adults are unsure whether vaccines can result in autism, and another 6% say that vaccines can result in autism. If 58% of Americans believed that or were unsure whether the earth was flat, I would want to hear their views. I’m pretty sure they wouldn’t win me over, but I would listen. Today, any journalist who dares mention that Gardasil seems to be leading to injuries and deaths, or that unvaccinated children might enjoy better health overall, or that the Vaccine Injury Compensation Program does compensate children who develop autism faces public excoriation. We’ve left open exchange in the dust.

What about transparency? What motivates Dawn Pedersen? Is she just really, really fired up about quashing any hope of autism recovery, even though she doesn’t seem to have a child on the spectrum? A SeaWorld employee was recently found to be posing, for years, as an animal-rights activist and trying to incite violence within peaceful protests, to make the activists seem dangerous. Monsanto evidently has a behind-the-scenes department devoted to “debunking” science that suggests glyphosate or GMOs are harmful. With all the subterfuge in our world, I wonder what is guiding Dawn Pedersen.

Is it just advertising revenue? The advertisements that popped up when I visited Dawn’s Brain included OceanSpray, Fairmont Hotels, Walks of New York, WayFair.com, intuit QuickBooks, Lexus, University of Phoenix, Hedwig and the Angry Inch on Broadway, and RoyalCarribean International. That’s an impressive list. Dawn Pedersen must be able to show plenty of hits to Dawn’s Brain for ad revenue like that. (And here I come with my little post, stirring even more traffic. Sigh.) Dawn Pedersen, “science advocate,” also has other sites like Kids Busy Book and Draw to Learn, which she promotes on Dawn’s Brain. So she has the motivation to draw visitors to those sites, too.

It’s apparent, at least, that Dawn Pedersen gets a lot of web traffic by promoting the mainstream. By insulting those who peek beneath the surface. She has her sights set on easy targets, like parents trying to recover their children or fighting for healthier foods. Because why? Views are mainstream when most people accept them. People like to hear their views confirmed. People reassure themselves by insulting those disagree with them. People enjoy reading blogs that promote their own opinions. (If you stick with Finding My Kid, it’s a fair bet you think autism recovery is a good idea.) There is much to be gained through dismissing alternative ideas, and I wager Dawn Pedersen is happy to be profiting by doing so.

Always Figure in the Profit Motivation

Don’t get me wrong. I’m no Pollyanna. Dawn Pedersen not the only one profiting off, in this instance, autism. Autism recovery, while achievable in many cases, is so complicated to navigate, and autism can be so devastating for families, that desperation is running rampant. Desperation invites charlatans. One walk through the sponsor corridor of an autism-recovery conference shows as much. Remember what I posted about AutismOne? The guy with magic salts and vibrating machines? He’s not the only one. Vendors hawk antioxidant sweeteners, nutritional shakes, bracelets and amulets to block electromagnetic fields, CD’s of brain-calming sounds, pressure-point stimulators, you name it. Conference sponsors pay for their spot on the floor, and they want to recoup that investment. Parents who’ve found nothing that helps will buy anything.

It is easy to see why some families choose to write off the field of autism recovery altogether.

Beyond the snake-oil salesmen are practitioners making money off what actually works. Take hyperbaric oxygen therapy (HbOT), for example. I believe (despite lack of mainstream confirmation) that it can improve cognition and neural function in children with autism. But it is very expensive, and the gains sometimes don’t seem to stick after the child stops using the HbOT chamber. Thus, although HbOT “works,” it may not justify the tremendous expense (up to $10,000 for a series of 40 dives). Likewise are the controversial ionic footbaths, said to help detoxify the body. They really do seem to help, a little. But they can cost thousands of dollars, and similar results might be achievable through clay or Epsom-salt-and-baking-soda baths. Rest assured, we have no shortage of entrepreneurs ready to sell you an expensive footbath or HbOT therapy. Autism families will pay dearly for any help: vitamin B12 shots, signaling devises to find children who bolt, special combinations of vitamin supplements.

How can you ever be sure? You can’t. Here I will wade into controversy (ha! as if I usually don’t): I never trusted the late Dr. Jeff Bradstreet. He is such a big name in the autism-recovery movement, and many parents insist that Dr. Bradstreet was everything to their children’s healing. Still, Dr. Bradstreet rubbed me the wrong way. At an AutismOne talk this spring, he said that parents “owe it to their kids” to try MRT for at least a week, because it’s “not much money”—only $1,000 in MRT fees, several hundred dollars for a consult with him, travel expenses to Atlanta, and a week’s worth of hotel lodging and eating out, all for a treatment that, by his own (optimistic, it seems to me) prediction, might help 50% of kids. He said “not much money” to a roomful of autism caregivers, many of whom had probably blown their families’ vacation budgets for the year on getting to the AutismOne conference. I wanted to raise my hand and say, “Thank you for your work and research, Dr. Bradstreet, but please don’t advise these parents to give you their last dime on a wing and a prayer, and don’t tell them they ‘owe’ that to their kids.”

I am, however, and of course, grieving that Dr. Bradsteet is among the many alternative health practitioners (many rumored to be proponents of GcMAF) who’ve recently gone missing or died under questionable circumstances. I haven’t looked into this issue much. I’m suspicious about Dr. Bradstreet committing suicide. I mean, who wades into a river to shoot himself in the chest?

For me, any high-profile doctor presents a dilemma. On the one hand, I don’t want to penalize anyone for his/her success. If a doctor is helping children recover and earning plenty, good for him/her. On the other hand, becoming high-profile often requires more self-promotion than attention to individual patients, and sometimes involves selling miracles, like Dr. Bradstreet with his Bravo yogurt or Dr. Zach Bush with his Restore supplement. For me, for my own peace of mind, I prefer lesser-known doctors and practitioners to treat Martin. Otherwise it’s too easy to get lost in hype and lose perspective when it comes to evaluating results. As a biomed parent, I already feel like I have to take a stand against the mainstream world every day. If every other biomed parent says Dr. X or Dr. Y is the super-best, and I end up in disagreement, do I trust myself enough to stand against the biomed world, too?

I Say: Let Everyone Speak, and Prod Them to Reveal Their True Motivations

My husband’s employer has a generous foundation that matches charitable donations. The foundation recently announced a new policy: It will no longer match contributions to organizations that oppose marriage equality or full rights for LGBTQ persons. I, personally, would not donate to any organization that opposes marriage equality or full rights for LGBTQ persons. I, personally, support marriage equality and full rights for LGBTQ persons. Let’s face it—I’ve got bigger concerns in life than your gender or whom you love. Nevertheless, I can’t say that I approve of the foundation’s new policy. The policy quashes debate. It says, “This issue is so settled that we won’t listen to the other side.” When it comes to LGBTQ rights, I think the issue should be settled. I think. Others disagree. I wouldn’t silence their voices.

Decades ago, when I was deciding where to attend law school, I visited Yale Law School and asked about its Career Options Assistance Program. COAP repays the student loans of graduates who choose lower-paying jobs; the law school is expensive and doesn’t offer scholarships, so unless they get some help, its graduates are likely to funnel into big law firms or other high-paying jobs. At the time of my visit, I was smarting from being told, by another school, that I didn’t qualify for a public-interest scholarship because I wanted to work in animal protection, and animal protection isn’t “public interest.” At the Yale roundtable, I asked a dean whether availability of COAP funds depended on the type of work a graduate performed, as opposed to just the amount of money s/he earned.

“No,” the dean answered. “COAP is based strictly on income. We have no interest in dictating which fields our graduates enter.”

That’s the way it should be. We should encourage advocates to get out there and fight for their viewpoint, regardless of whether we agree. There is no value in not bothering even to engage minority positions. There is no value in browbeating others into silence. There is no value in hiding who is (or what funds are) really behind that browbeating. I shouldn’t have to wonder what motivates Dawn Pedersen to decry autism recovery, whether she is just driving traffic to her site, or whether some sponsor is buying her keystrokes.

I have no issue with money used to promote a viewpoint, especially when the source of the funds is acknowledged. I take issue with money used to pretend there is no counter-viewpoint, especially when the source of the funds is not acknowledged.

Does Progress End?

I launched this overblown post by stating, “I think that, ultimately, the self-interest that capitalism motivates moves everyone forward.” In the alternative universe of autism recovery, I find myself rethinking whether we’re still moving forward. We made it to a pretty good place here in these United States. The standard of living is high, chronic hunger affects few (though still too many), the stores are stocked, most everyone can read. We have labor laws to protect our children and zoning to neaten our urban spaces. We have choices.

But we’re chronically sick. Our marketplace demands cheap food, so we skimp on production. Our fertilization methods deplete the soil biome. As a result, the crops are less nutrient-varied. Then we compound the problem by processing the food. We meet the demand for over-consumption of meat by abusing animals on an industrial scale, in ways even our bear-baiting ancestors couldn’t have envisioned. Intensive confinement of animals requires such reliance on antibiotics that many are losing their value.

Even by official statistics, rates of asthma and allergies are increasing. That’s on top of the skyrocketing rates of autism, ADD, ADHD, and other childhood health problems that result in behavioral challenges. We’re raising the first American generation expected die younger than their parents do.

Dawn Pedersen, “science advocate,” might believe, or might profit from asserting, that we’re headed the right direction. As for me, the direction that we are heading is enough to make this capitalist wonder if she’d prefer to move off the grid.

No sponsors were involved in the creation of this post. None of my many degrees includes the art of self-promotion to advertisers. Of course, if you’d like to send me a check, whoever you are, I’ll take it! Party on, autism warriors.

Good Medical Care

Posted on by findingmykid
1

Without any real statistics to show, I am going to assert that most of us in the biomed community have MAPS doctors for our kids. “MAPS” stands for Medical Academy of Pediatric Special Needs and is the successor term to DAN!, or Defeat Autism Now! MAPS doctors are trained and certified in the treatment of chronic conditions like autism. They help our children with the process of recovering from autism/autoimmune disorder, and with associated issues like epilepsy or food allergies. They’re kind of like general practitioners for children affected by autism.

Then we have other doctors, the host of professionals who accompany childhood, plus (because autism is the symptoms of sickness) assorted specialists. Neurologists, geneticists, ophthalmologists, audiologists, endocrinologists, allergists.

One challenge prevalent for biomed families is finding “other doctors” who respect their MAPS doctors’ efforts. You can imagine the potential conflicts. When we first started biomed, for example, Martin had constant skin rashes, so itchy that he would scratch his legs bloody. We took him to a dermatologist, who diagnosed “sensitive skin” and suggested using Cetaphil “gentle” cleansing and moisturizing products. Our MAPS doctor, recognizing candida overgrowth, asked us to substitute natural products for Cetaphil and work on balancing gut flora to bring yeast under control. (We went with the MAPS suggestion, healing Martin from inside.)

The elephant in a room occupied by both MAPS and non-MAPS physicians is vaccines. MAPS doctors may urge caution when it comes to vaccinating, especially for kids with a history of reactions to vaccines, while non-MAPS doctors may push vaccinations “on schedule” for all kids. Some pediatricians won’t even accept patients whose families feel they cannot vaccinate.

So there are challenges, navigating the biomed path accompanied by non-MAPS healthcare professionals.

When we moved to the suburbs last year, I took the opportunity to find a Martin new pediatrician and dentist. Our practitioners in the City were adequate but traditional. The dentist made me sign forms stating that I had “refused” routine X-rays against her recommendations, and once she applied fluoride to Martin’s teeth even though I had stated at the beginning of our relationship that I didn’t want any fluoride, ever. Our pediatrician was perhaps more conscientious; I had a positive experience when one of her partners took an interest in our biomed approach, and the practice gave us a vaccination exemption of indefinite duration after Martin reacted poorly to the H1N1 shot. Despite those perks, however, the doctors weren’t worth venturing back to the City.

I found a new pediatrician through conversations with other biomed moms. This doctor, though not a MAPS doctor, is knowledgeable about autism recovery. She stocks her office with papers like “The Autism-Gut Connection” and “SIBO Symptoms and Treatments.” I believe she can be a second set of eyes on our biomed protocol, which is a good thing.

The dentist I found on-line. I searched for dentists who have experience working with special-needs kids, and then I followed up with phone calls about whether the doctor minds if we opt out of fluoride treatments. Martin’s first check-up there, six months ago, took place on a weekday morning, when few kids were present. The hygienist wasn’t great with him. When Martin became upset, she tried being noisy and distracting. I had to stop her and explain that, with Martin, the best approach is quiet explanation of what is happening. We were more successful with the rest of the visit. The dentist was able to get a good look at Martin’s teeth despite his protests, and no one gave me any trouble about fluoride.

Unfortunately, both the new pediatrician and the new dentist are far from our home. Last week, as I drove more than 45 minutes for Martin’s next check-up, I questioned whether the dentist was worth the fuss. As Martin’s appointment time passed, and we were still stuck in morning traffic, I thought, No more. This is the last visit to this dentist. Surely I can find someone in our own town who doesn’t push fluoride and is good with special needs.

When we finally arrived, the office was sleepy, with only one other patient waiting. This time I told the hygienist (a different one than last time) up front that Martin responds best to calm words. She understood immediately. When Martin declared that we would get a check-up but would not lie down, the hygienist responded, “Of course not. Here, I will just recline the chair a little bit so you can see the television on the ceiling, if you want.” Martin went for that.

We had a different dentist, too, a man. He began by remarking that he saw on our information card that Martin follows the GAPS diet, and asking how that was working for us. (A dentist! Asking how GAPS is working for us!) I told him, in general terms because Martin was in earshot, about our experience. The dentist responded, “It’s remarkable, isn’t it? My friend with MS made similar dietary changes, and his symptoms have really responded.” Then the hygienist said, “I know someone who has been able to stop taking fibromyalgia medication since she went on a diet like that.” Then both the dentist and the hygienist started discussing their own emphasis on fresh, whole, organic foods.

Martin, meanwhile, behaved like a champion. He let the dentist recline his chair a little more and complete a full examination plus cleaning. He interrupted the procedure only to point to the ceiling television and say, “That’s Nick Jr.!”

When the dentist was finished with Martin, he said, “Martin’s teeth look great. Not having refined sugar is obviously helpful, and you’re doing a solid job with brushing and flossing. As to the fluoride, substituting xylitol is a good choice. More and more of our parents are moving that direction.”

This dentist gives out balloons. Martin requested a yellow balloon.

I, now oblivious to the nearly hour-long drive that had aggravated me, reported to the front desk to schedule our next appointment.

I don’t mind questioning or challenges regarding Martin’s care, as long as the questioner/challenger acts with an open mind, has a stake in Martin’s well-being, and isn’t just playing Devil’s advocate.

But at the same time, it is hard to overstate the relief I feel when everyone is on the same page.

[Note: I know biomed families have mixed feelings about xylitol. I will blog about that at a later date.]

More Civility

Posted on by findingmykid
1

Last year I took Martin to a friend’s sixth-birthday party. I talked to the birthday boy’s mom in advance and knew they were serving pizza. For Martin I brought homemade GFCFSF pizza and cookies.

I thought Martin would be happy with those choices. With the pizza, he was. I heated it in the hostess’s oven and served it on a party plate, just like the other kids’ pizza. Unfortunately, the situation went south when cake time rolled around. Martin didn’t want just any treat. He wanted the cake. And when he didn’t get cake, he went into meltdown mode.

I might give in to something like a non-organic apple. But I don’t concede gluten-, dairy-, and sugar-laden cake. I picked up my screaming kid and moved to another room, where I held Martin on my lap and tried to calm him with promises of a special cupcake when we got home. (I would gladly have stopped at blessed Babycakes, which sells cupcakes that are free from gluten, dairy, corn, soy, and refined sugar.)

Martin was having none of my peacemaking. He cried and wheezed, inconsolable. At this point, another mother, whom I never had met, entered the room and asked, “What’s the problem?”

“My son is upset because it isn’t a cake he can eat,” I replied.

The stranger came closer and said, directly into my ear, “Just tell him you’re taking his piece home for him to eat there. By the time you get home, he’ll forget about it.”

I had a child on my lap near hyperventilation. This was not the time to explain that I don’t follow lie-now-and-hope-he-forgets approach to parenting. So I replied, “I wish I could, but he remembers everything.”

This woman was not to be deterred, neither by my blow-off attempt nor by Martin’s tears. “What is he, gluten-free?” she asked. “Why don’t you give him some of the ice cream?”

Her voice was loud so I could hear her over the racket, and her tone was sharp so I would know that she didn’t approve of a gluten-free diet.

“It’s harder than that,” I said, trying to sound sheepish so she would leave and let me return my attention to Martin. “He doesn’t eat gluten or dairy or refined sugar.”

I didn’t bother adding soy, corn, starches, most carbohydrates and fruits, non-organic or processed foods, or preservatives to the list of what Martin doesn’t eat. No matter. Apparently gluten, dairy, and refined sugar were enough to earn this stranger’s condemnation. She said, “Oh my God.” Then she rolled her eyes, turned her back to me, and walked away.

So I got what I wanted: She left us alone, letting me return to comforting Martin.

The rudeness I could have done without. Also, the particular phrase she chose, which is offensive to me.

Most of the children attending the birthday party had special needs. Later, after Martin calmed down, I saw this woman with her son. He wore ankle braces and hearing aids, and he engaged in atypical behaviors. Our conversation had been special-needs-parent-to-special-needs-parent, but it sure didn’t feel that way.

What went wrong at the birthday party? First, it was a terrible time to discuss anything. Martin was in full meltdown mode. The stranger could have said, “You have the most intriguing eyes I’ve ever seen, and I would kill for a figure like yours,” and still I probably would have tried to blow her off. Second, she was plainly unwilling to think outside her own box. Really, I don’t even think she wanted to help. She wanted to judge.

Let’s compare to a conversation in which I found myself a few weeks later. This one happened after a meeting of our district’s special-education PTA, when parents were hanging around to mingle. I ended up talking with a woman who introduced herself as the mother of an 11-year-old with Asperger’s. When she asked about Martin, I said that he has made enough progress that I’m not sure whether to say “autism,” “high-functioning autism,” “Asperger’s,” or something else. She asked about what therapies have helped the most. I replied that we do biomedical and homeopathic interventions, and that those, combined with a restricted diet, seem to have made the difference.

We talked some about Martin’s diet. Then the mother said, “I think a lot of so-called autism remedies are snake oil, people trading on hope and desperation.”

I replied that she has a point. Even after years on the biomedical path, I find it hard to distinguish between legitimate interventions and unsupported promises. I try not to let it get me down. I hire and rely on experienced doctors, and I do as much research as I can manage.

The mother asked, “Do you do the dangerous stuff, like chelation?”

I replied that we haven’t chelated yet but plan to; that from what I know, chelation is safe if done properly; and that, in terms of which interventions have relieved autistic symptoms, chelation rates highest in parental reports.

She said, “I hear what you’re saying. But people who say you can treat autism are the same people who say vaccines cause autism. Do you believe that?”

I replied that I think the strict cause-effect narrative has undermined legitimate debate about vaccines. Everyone knows that vaccines are dangerous for a child with a compromised immune system—that’s why parents are told not to bring a child for shots when she has, for example, a cold or an infection, and why a child undergoing chemotherapy cannot be vaccinated. Autism, I said, is the symptoms of an underlying immune disorder, often with a genetic component. The immune disorder may exist before the symptoms manifest. If a child is asymptomatic, his parents and doctors may not recognize the immuno-problems, and they may therefore go ahead and vaccinate. The vaccine, in turn, causes the already compromised immune system to go haywire, and then the symptoms manifest. In such a scenario, the vaccine didn’t “cause” the autism, but it did exacerbate the pre-existing immune disorder and cause the symptoms (i.e., the autism) to appear.

The Asperger’s mother listened to my entire monologue. When I finished, she boosted my ego a little by saying, “You know, you’re the first person who’s ever told me about a link between autism and vaccines without sounding insane.”

We talked for 20 or 30 minutes, this mother and I. Don’t worry! It wasn’t all me rambling on. She knew tons about navigating the special-education system, and I grilled her for tips. We ended up exchanging numbers and thanking each other for the shared insight.

Did I convince this mother to begin biomed with her 11-year-old? Probably not. Did we have a positive interaction? Definitely. Unlike at the birthday party, the special-education PTA event was the right time to discuss helping our children, and the mother I met was curious and open-minded.

Civility is out there.

Even if it doesn’t always seem that way.

Civility

Posted on by findingmykid
4

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.

Vaccinations. I’m Ready for the Hate Mail

Posted on by findingmykid
8

A couple weeks ago, a message came across my Twitter feed (@findingmykid) telling parents of kids with autism not to blame themselves, because there is no single contributor to autism—no specific action they should or should not have undertaken. I was grateful for the reminder. I do have a tendency to blame myself for Martin’s autism. We had our kitchen rebuilt, clouding the apartment with construction dust, while I was pregnant. I let myself be bullied into induced labor, leading to epidural anesthetic, Martin’s loss of oxygen, and a C-section birth. I fed Martin foods I now know to trigger digestive difficulties. When we had new window guards installed, I put him to bed thinking the paint had dried, only to open the door three hours later and find his bedroom filled with fumes.

And—I chose to have Martin vaccinated. I started out wary of vaccines, from personal experience: I myself was fully vaccinated as a child, including against the measles, and yet at age 12 I contracted measles. Even the health department visited to find out why I’d caught the contagious and life-threatening disease. That experience has always given me pause about the efficacy of vaccination. So when Martin came along, I tried to educate myself. I attended two seminars (these billed themselves as neutral but turned out to be very pro-vaccination), perused some articles, and read the Dr. Sears book. In the end, after talking with Martin’s pediatrician, I decided to vaccinate Martin, but on the Dr. Sears “alternative” schedule, which skips some shots and spreads others apart. I reviewed the ingredients of available vaccines—they were non-vegan and generally disgusting—and requested them by brand, paying especial attention to aluminum content and to the combination of vaccines (I never allowed more than two) given on a single visit.

Still, I had misgivings, long before Martin was diagnosed with autism. I was uneasy with the idea of injecting, into my son, foreign matter including metals, Guinea pig embryo cells, cow blood serum. Are human bodies really designed to deal with that kind of intrusion, particularly by injection instead of ingestion? Each time Martin received a vaccination I left the doctor’s office feeling vaguely unsettled, even if I was unsure why.

It was mother’s instinct, I now suspect.

In 1998, Andrew Wakefield published a paper in The Lancet linking the MMR vaccine to digestive disorders associated with autism. The Lancet subsequently retracted that paper, and last April the BMJ published an article aimed at discrediting Wakefield’s study. That BMJ article was widely reported, and I recall a Facebook friend—damn you, social media—posting a link to one such report, with a tagline something like, “GET OVER IT, MORONS! VACCINES DIDN’T GIVE YOUR KIDS AUTISM!!!”

Yes, it was written in all-caps, the hallmark of any thoughtful sentiment.

I try not to take umbrage to Facebook posts. This one got to me. I think it would have got to me even without Martin’s condition. Facebook does not represent the best platform for discussing controversial ideas. (For example, have Facebook snippets persuaded anyone, ever, to change a political position?) Worse, the words, written by a mother of several neurotypicals, were inconsiderately harsh for someone not facing the realities of parenting a child on the spectrum.

More than the inappropriate forum or lack of empathy, though, was my belief that this Facebook friend was too cavalier.

I’m not going to say that I think vaccines “cause” autism. I’m sure many readers are horrified enough that I acknowledge a possible link between vaccines and ASD, at all; when I told a college friend that we were undertaking autism recovery, her first question was, “Are you going to be like that actress who went crazy and said vaccines made her son get autism?”

I’m not going crazy (and neither was Jenny McCarthy), and I’m not using the word “cause.” But after reading more, and from a wider variety of sources, I think this: Children who are prone to ASD, for whatever reason, share a sensitivity to certain food triggers, to electro-magnetic fields, to chemicals and heavy metals, and in general to foreign substances. And those children, when their sensitive systems are invaded with the gunk that comprises vaccines, react with increased neuro-divergence. Vaccines, therefore, in my entirely un-scientific opinion, do more harm than good to children who already have, or may develop, autism. I also think that some of the highly touted successes of vaccines may stem, in part if not primarily, from general advances in hygiene and health care; that is, bell curves appear to show that some diseases we vaccinate against have decreased at rates similar to diseases we don’t vaccinate against, because we’ve got better at caring for ourselves.

Be warned—here comes the lawyer in me. I am not advising anyone not to vaccinate his or her child, on the spectrum or otherwise. I would never give that advice. I am not a scientist. I freely admit that I do not fully understand all of what I read on topics like the effects of vaccines, and that I do not have the background to discern among competing sources of information. Thinking more globally, I have no reason to assert that, say, malaria vaccinations in Africa or polio vaccinations in South Asian are not a good thing. I have only my own conclusions, for me, for my family.

My law-school roommate asked me if she should stop giving her (neurotypical) children the fluoride tablets their dentist recommended. I answered honestly: I don’t know. I filter Martin’s water for fluoride. I think fluoride is bad for his condition. That’s not definitive. I may not even have the best or newest information. But from what I’ve got, no fluoride for Martin.

I regret, now, that I allowed Martin to be vaccinated. I particularly regret falling prey to the 2009 H1N1 hysteria and getting Martin that vaccine, because it was so wholly unnecessary, and because that was the single instance that I can remember in which my son seemed different after the injection than before. (I don’t have any specifics for that last comment; I can only say that Martin, who was not yet diagnosed on the spectrum, seemed pretty kooky for a day or two afterwards.) After consulting with Martin’s Track Two doctor and Martin’s pediatrician’s practice, Adrian and I have decided to forego any further vaccinations, at least for the time being. I feel far less threatened by hepatitis B than by further neurological damage to our son.