Tag Archives: antibiotics

Everything Is Wrong

Posted on by findingmykid
3

These past six or seven months have probably been the most challenging since we began biomedical recovery eight years ago. Martin has “tanked” before—but never so dramatically, or for so long.

That’s not why I haven’t been posting to my blog. I promised honesty about the disasters as well as the pinnacles, and I’ve followed through on that promise. No, I haven’t been posting because I started a new position in August (if you’re keeping track, now I have two jobs, both part-time), and that combined with meeting Martin’s needs (the cooking! all that cooking!) has kept me awfully busy.

Yes, I’m “doing too much.” Yes, that’s part of who I am. But I love both of the positions in which I’m working. My only worry is whether I have time to meet Martin’s needs. On that point, I must be scrupulous.

The troubles began last summer, in Costa Rica. Martin started feeling like he had to pee constantly. He might finish going to the bathroom, wash his hands, and return five minutes later. He sometimes required three trips to the bathroom before we could leave the house for camp. When I asked whether he really needed to go, he might reply that he thought he needed to, or that he wanted to “adjust” his privates. Clearly, some irritation was plaguing Martin.

Next came the physical tics. The first tic was thrusting his index fingers into his nose and then his mouth. Not picking or fiddling, thank heavens, but thrusting. Often. By the time we returned to the States and Martin started fourth grade, he had added eye rubbing. He pushed his knuckles roughly into eyes, then moved his palms in circles on his eye lids. His eyes looked red and sore.

The nose-mouth tic faded, only to be replaced by a need to touch his genitals and then his backside, almost ritually. You can imagine what this did to all those fledgling friendships Martin had been assembling toward the end of third grade.

Desperate, I allowed Martin’s New York doctor to put him on antibiotics. I had to hit desperation before we tried antibiotics, because antibiotics are destructive to gut health, and poor gut health has been one of Martin’s toughest health issues. Long-term antibiotic use, however, is known as an effective treatment for PANS. We believe Martin is suffering a PANS flare, and when you see your 10-year-old constantly frustrated because he feels compelled to touch his private parts, even in front of other kids—let’s just say you’ll try almost anything.

The self-touching did fade, thank heavens, only to be replaced by a verbal tic. Beginning in December, Martin lost control of his mouth and, in response to the slightest frustration, blurted inappropriate phrases. I mean really inappropriate. It’s no longer limited to, “I hate you,” or, “Stupid!” He’s called his teacher, and me, “bitch.” He told his classroom aide, “Die, scumbag!” His classmates are “idiots,” whom he informs, “I have a girlfriend in second grade. We’re having sex.” (“Please believe me that these are not phrases that are used in our home,” I begged his teacher one day, unable to account for the behavior.) Often, after Martin says such things, he becomes upset and apologizes: “I don’t know why I said that! I knew it was coming out, but I couldn’t stop it in time!”

As is characteristic, Martin’s skin has been a mess since this ordeal started. He claws at his arms and legs, which are marked with bloody spots and recent scars. Mornings and evenings we massage him with CBD oil. The CBD oil helps but doesn’t resolve the irritation, which originates from within.

Martin’s school team—his teacher, his classroom aide (shared with another student), and his behaviorist—are terrific. They understand that the behaviors are out of Martin’s control, so he is not punished, not even for the most egregious name calling and acting out. (If I were a teacher, being called the b-word in front of other pupils, I might not have had the same self-control.) They’ve come up with a incentive-based rating system: Every day we receive a sheet rating Martin’s behavior from one-to-five stars, with a number of categories (“Did I keep my hands to myself in the hallways?” “Did I use kind words during recess?”) and a space for comments. Evenings, Adrian and I discuss the report with Martin in the least threatening way possible, and strategize for how he might do better.

Last week, Thursday and Friday, Martin finally had two five-star school days, with no inappropriate language. Saturday, my brother Eddie took Martin to the City for one of their “big adventures” and reported excellent behavior. Saturday evening Martin vomited his dinner and went to bed early. Throughout Saturday night and Sunday morning, he vomited. Sunday he voluntarily spent the day in bed, without complaining. By Sunday evening he felt better enough to start eating again, and he asked me not to cancel a pre-planned playdate Monday morning—it was the Martin Luther King, Jr. holiday, so the kids were off from school—with Ryan, a boy from last-year’s social skills playgroup.

The playdate went really well. Ryan is a year younger than Martin, with corresponding developmental delays. The two conversed fluidly, albeit about unusual topics. They were, for example, both incensed with the school district’s decision to have classes the day before Thanksgiving 2018, when that day was off in 2017; this gave them 10 minutes’ conversation or more. After a while, Martin wanted to fall back onto his standby, screen time. He asked whether Ryan wanted to play Fortnite. “I’m not allowed to play Fortnite,” Ryan replied. To my relief (I was eavesdropping from the kitchen), Martin said okay and suggested LEGO instead. They played LEGO.

Could we finally have turned a corner? I asked myself. Two five-star days at school, taking care of himself while sick, and now a successful playdate?

Hope is a train I shouldn’t always board. It sets me up for deflation.

Tuesday, Wednesday, and Thursday this week were three-star days, or worse. On several occasions Martin tried to hit other kids. To hit other kids.He’s never been a hitter. And he was throwing the word “idiot” around.

Here’s the summary of right now: Martin has been on antibiotics eight weeks. The constant bathroom-going and most of the physical tics have ceased, though not soon enough; he has lost virtually all the friends he gained last year, when he had such a tremendous spring semester. His state of being cycles from anxiety to meltdown to uncontrolled silliness. He loses control over what comes out of his mouth.

I’m trying to focus on what’s happening on a deeper level. Martin is conversant, much more than he used to be. He is self-aware, and sorry for the consequences of his behaviors. His inference skill has improved, and with it, his reading comprehension. He had such a good weekend that I’m starting to believe we might be getting close to leaving the PANS, or whatever it is, behind.

And he’s trying.

But today he told his teacher he’s going to “blow up the school.”

Here we are.

Cuddly Black-and-White Bears, or Blood Sucking Worms?

Posted on by findingmykid
4

“PANDAS. I have a gut feeling. It sounds like PANDAS,” said my friend Stacey.

“But he’s never been a PANDAS kid,” I replied. “Plus, it didn’t come on that fast. The doctor thinks it’s parasite-related, thinks he picked up something new in Costa Rica. He’s always been susceptible to parasites.”

“Doctors can get stuck on one idea and want to make you fit that box. All I’m saying is to make sure you also look into PANDAS.”

“I hear you,” I said. “Can you get me the info on which tests to run for PANDAS? I’ll see if I can get them done before our appointment.”

This discussion, which could only have taken place between biomed parents, was about what’s been going on with Martin. Poor Martin is not in a good place. The troubles (the exciting new troubles, atop the quotidian troubles) started in Costa Rica, maybe halfway through July. I began to notice that Martin wanted to go to the bathroom all the time. Sometimes he would go to the bathroom, brush his teeth to leave, then need the bathroom again before we could get out the door. He started spending a long time on sitting on the toilet, too. Near the end of July he developed a tic: He thrusts one index finger simultaneously into each nostril—briefly, with no rooting around or picking, thank heavens—and then immediately puts his fingers into his mouth. The whole action is over within a couple seconds, but it’s noticeable, and recurring, and out of Martin’s control. Next came the eye rubbing. Since our return to the States, Martin has been rubbing his eyes compulsively. He asks, “Why is this happening? Why can’t I stop rubbing my eyes?” As we made our way into September, he started night-waking, and having trouble getting to sleep.

None of the symptoms dissipated as the new ones arose. As of today, Martin is sleeping poorly, rubbing his eyes till they look red and sore, patterning his index fingers into his nose and mouth constantly, and using the restroom multiple times per hour, sometimes staying in there 10 minutes or more.

Wait—did I mention touching his private parts? Now he’s doing that, too. If we gently remind him to watch his hands, he complains that it is hard.

I’ve already received several reports from school. Martin seems distracted (even more than usual, I assume). Martin walked into a wall. (Yes. That was one report.) Martin is signing out of the classroom to go to the bathroom several times an hour.

When the bathroom issues and first tic arose, in Costa Rica, I thought that oxalate sensitivity might be at play. I reduced oxalates in his diet, which was not easy, as he loves potatoes and sweet potatoes, and making a meal for the whole family (I’m vegan) usually means using some nuts, or legumes. A few weeks of reduced oxalates brought no change, unless you count a worsening of the symptoms.

Back in the States, I brought Martin to his pediatrician, to rule out a UTI. His urine showed no trace of problems. The pediatrician thought Martin might be constipated, which can cause frequent urination, so I worked prunes and pears into his daily diet. No change.

Martin is prone to parasites, so I gave him a course of Alinia, which has worked in the past. No change.

I called Martin’s primary doctor for autism issues. She suspected parasites also. Together, we decided to move Martin’s previously scheduled appointment from the end of October to this coming Monday.

Then I went out to dinner with Stacey, and we had the conversation with which I began this post. I agreed to get testing done for PANDAS, but to be honest, I was skeptical. Martin has never been a PANS or PANDAS kid. I can’t recall flares, or his behavior changing those few times when he’s been on antibiotics. Later Stacey texted me a link to basic information on PANDAS and wrote: “Seriously please read this because it does state urinary frequency as a sign of PANS and/or PANDAS. I would really look into this as a potential cause. I could be totally off base but I have just a gut feeling.” I opened the link, and one specific reported symptom of PANDAS struck me: poor handwriting.

Though I hadn’t thought much about it, or connected it to the urination and tics (probably because I’m bone-headed), I’ve noticed that Martin’s handwriting has been abysmal since he returned to school. Not just shaky or unplanned, as his handwriting usually is, but truly abysmal. Almost illegible.

PANDAS? Stacey’s gut feelings tend to be reliable.

Parasites? Martin’s doctor for autism issues knows him pretty well.

His mother’s opinion? Confused.

Del Sur V: Manifesto

Posted on by findingmykid
6

“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
5

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.