It is time for the deadly bullying in this country to end

He started college, likely met his roommate on an early day of the semester. Little did he know that the fates that brought them together would lead to his leaping to his death from a bridge a mere few weeks later. Why? Because that roommate that entered his life decided to intrude on his most private moments, unbeknownst to him, filming and live streaming his intimacy with another person for all the world to see.

He was, by all accounts, gentle, quiet, a virtuoso violinist. Now, he is dead. And he's not alone in the factors that drove him to that direst, most irreversible of decisions. There is the Irish girl who hanged herself, bullied literally to death by her peers, who targeted her via text message and Facebook, in addition to torturing her in person. There is 13-year-old Asher Brown, who just this week shot himself after merciless and endless bullying from his peers. A boy whose parents find themselves in that age-old "We said, they said" with the district--the parents stating that they repeatedly complained, the district claiming utter ignorance. And there is Seth Walsh, another 13-year-old, who hanged himself in anguish over being bullied with taunts that he was homosexual and died nine days later.

These accounts have much in common. Quiet children. Sweet children. Sometimes homosexual children or children who are being taunted for presumed homosexuality. Parents who complain and whose complaints fall on deaf ears. And when parents do take matters into their own hands, they are arrested, assured that had they only complained to the proper authorities, those authorities would've done something. Right.

Who is raising these mean, vicious children? What kind of parent, for example, gets upset to the point of tears on learning that her child has been threatened by a father for bullying his daughter with cerebral palsy? For mercilessly bullying her? The parent, rather than expressing anguish that her child would do such a thing, is near tears because someone yelled at her son for doing it.

Who are these adults in the school districts who ignore parental complaints of bullying? Maybe I'd be skeptical of such stories if (a) we hadn't experienced exactly that with our own son, and (b) I hadn't just heard from many other parents stories strikingly and heartbreakingly similar to our own.

This has got to stop. At the very least, school districts should be required to address the bullies, to ensure that bullying at school or on the bus gets stopped cold. There should be a zero tolerance policy, and not a flimsy one that no one enforces, but a real one. Even for children who don't take the ultimate way out, the effects of bullying can last a lifetime.

Ah, you say. No one's going to make a school district do that. Parents have always made these complaints, and districts have always ignored them. True. Let's change that, shall we? After all, we are the special needs parents, are we not? We're the ones who really understand the importance of documentation. Of getting it in writing. Of time stamps and date stamps. Of even documenting radio silence.

It might surprise you to learn that the United States does not have an advocacy group for children who are bullied or an ombudsman-type service for families to turn to when districts are ignoring them. I am processing the concept in my mind and on paper right now, but I would like to establish such a service. It doesn't have to be big. It just needs to be there, for families who need it, who don't know how to document or get a district's attention. I think what we have here, dearest readers, is a group of people who know how to do exactly that.

I'd be interested in your input, your ideas, offers of help, avenues of exploration, formats, interfaces. Let's do this thing before more mean people unleash their hell on a sweet child who sees no way out but death.

Hi. My name is Emily. I'm having a mid-life crisis, & it sucks

Before you read on, I want to make clear that I didn't write this post in the hopes that people would give me hugs or enumerate all of my achievements, large and small, or try to make me feel better. Please don't feel compelled to do that. I know what I've done in my life that's good. Some days, a dark mood shadows and diminishes my achievements, while on other days, they shine with the promise of future success. I would, however, be interested in how other women of, ahem, a certain age might be feeling in the context of what I write below.

I've always been an ambitious woman. I don't think I'd've done too well in any age or society that might have suffocated my ambition or my intellect. It would have chafed me to death to be unable to pursue answers to all of my many questions, to have been unable to continue my never-ending quest for more and more knowledge, to have somebody tell me that I can't do something because--and only because--of my sex. Gaah.

My ambition goes back a long way, most of my 42 years. I can clearly remember resolving one day in my parents' living room, when I was about six, that my overarching goal for my life was to learn everything. And I really meant everything. Obviously, I didn't know much at the time, or I'd've known better than to set such an unattainable goal. Upon later and wiser reflection, I've modified it to learning as much as I can.

But that's not where my ambition ends. I want to write books about what I've learned, teach people what I've learned, learn from the people I teach, be an Author with a capital A, a teacher with...well, the lowercase there is fine. I'm not trying to be the Dalai Lama here, just...someone who, in my way, makes a difference in the world for the better.

And, as Cousin Charlotte might say in A Room with a View, in my own small way, I have made some differences in the world. When I was teaching, I referred to myself as sometimes changing the world one neuron at a time. I thought about what I was doing in science in my own peculiarly lingering liberal arts lingo, working on my own two inches of ivory, doing things in my own small way.

I earned, with a bit of travail, an advanced degree, along with more than 30 peer-reviewed scientific publications. But I love writing and teaching more than EDTA and thermocyclers, so I shifted to writing full time. I wrote a book, a trade sort of book but one that was all mine, teaching biology to college students in the way that I wanted to teach it. It's great to go to Amazon and see that book there, rising and falling (often falling) in the sales numbers, to see that one five-star review. But what does that book really do? Help a desperate student here and there, perhaps. Changing a few neurons at a time, possibly.

My ambitions, in short, lie unfulfilled. I am not an Author, I am a writer and an editor and have written a trade book that sells maybe a couple of copies a week. We're not talking gorgeous prose or even the tight, dense yet poetic prose of which, in my literary moments, I am capable.

And I'm freaking out a bit. I'm middle aged now. Officially. No way to equivocate, to claim that 40 is the new 30 or that I've got decades ahead, blah blah blah. I have to admit: I am feeling my age. I hate reading Vanity Fair's Bright Young Things entries and being reminded of how much I wasted my own youth wallowing in irresponsibility and 12 packs of bad beer instead of really doing something to make a difference in the world. I detest on reflection what a waste I made of my youth in so many ways and look at my age and wonder: How did I fall so far behind?

Yes. I am a woman having a mid-life crisis. I don't feel a terrible urge to go purchase a Porsche (although that'd be pretty cool) or take up with a man half my age (are you kidding? 21? They're still boys, for God's sake). But I have a strange and palpable urgency hanging over my head at all times. To sit and write the book--the literary book, not the trade science book--that I know is in me (really, there are several, I'm convinced). To get on board with nonprofits that make a difference, to write for them and use words to convince others to make their own differences in the world. To Be Somebody Who Makes a Difference.

Why do I not do these things? I'm a mother. I have three children, all young. I homeschool one of them and ferry the others around constantly. I'm with them literally 24 hours a day. I can edit and write about science and do the other jobs I do for my steady clients while war breaks out around me in my office, complete with light sabers and Lego swords. But I cannot be an Author or make excursions to a nonprofit somewhere and be what I think I've always wanted to be. Not now, anyway.

Instead, I work on these children, one neuron at a time. Only my three. Not making a huge difference there, but I had them on purpose and intend to do my best by them. I do not resent them in the slightest because it's my own damn fault that I frittered away my 20s in hops and hopelessness, and I owe it to them to be the best mother I can be, mid-life crisis, middle-aged mopes, and a couple of decades of regret notwithstanding. In general, I don't wallow in my regrets because I'm happy--doesn't sound like it from this, I know, but I am--and I know that all of my past was prologue to all the love I have in my life today.

Still, these regrets haunt me and the urgency whips me from behind, driving me to frustration. Even so, the world turns all around me, and indeed, neurons change every day. Perhaps my role in making change in the world isn't a large one. Instead, perhaps my destiny is to be a life of lingering frustration with a success that is more indirect, fine-grained, so fine as to be intangible. For some people, that's fine. For me, it galls, and I'm not mature enough to mentally soothe my way out of the irritation, to attain the wisdom of appreciating a life well lived but lived quietly.

I fear I am not alone in that.

The other evening, one of our little packs of neurons made an announcement to us. The pack of neurons in question was TH. Earlier in the day, we'd been discussing what his future occupations might be, and he enumerated a few, including entomologist, marine biologist, or failing those, mailman. He'd clearly been thinking about it throughout the day because that night, as we were watching Top Chef, he made his announcement.

"You know what," he said, "I don't really know what exactly what I want to be when I grow up, but I do know one thing I want to do."

"What's that?" I queried.

"I just know that when I grow up, I want to make a difference in the world."

You and me both, kid.

Bullying on the bus: One dad takes matters into his own hands

His daughter is disabled with cerebral palsy. On the bus that day, teenagers--around 13 years old, boys--had put open condoms on her head and otherwise taunted and abused her. She told her father. He got on the bus and unleashed verbally on the perpetrators and the bus driver. He's apologized but insists that he had to do something, there, in that moment because there was "nothing else" he could do. The entire incident was captured by the bus video system. (Funny how that works. When my son was accused of bus behaviors, suddenly, they couldn't find the associated videos that would have backed up his story. Of course.)

One of the boy's parents was angry about the father's tirade. She was so upset, she said, she wanted to cry.

Welcome to the club, lady.

I'm sorry that a grown man got on a school bus and scared the shit out of a couple of teenage boys who were mercilessly bullying a disabled girl. I don't think he did the "right" thing under the cool gaze of the law or appropriate social behavior. But did he do the right thing by his child? I'm thinking so, and here's why.

For whatever reason, school buses are like a brief transit through hell for children with special needs/disabilities. It's open season in those yellow tin cans, and the presumed adult driving the bus is--nationwide, it would appear--incapable of doing one single thing to stop it. Indeed, sometimes, the adults are the ones doing the bullying.

My oldest son experienced bus bullying from his first days riding, and no one seemed to be able to do anything about it. In fact, some children accused him of bullying when, in reality, it was the same old story: special needs kid gets bullied--including acts that leave fingernail marks on his body and spit in his ear--special needs kid retaliates, special needs kid is the one who gets in trouble for defending himself. Had I not seen this happen repeatedly with my own eyes, I'd be skeptical, too, but...that's really how it goes down.

So, some people probably are going to think that this father was out of line. I think he was out of line, especially with the language and using, in his turn, his size and his anger to intimidate these boys. But in spite of that cool assessment on my part, there's a hot little core inside of me that supports his behavior fully, right down to the f-bombs. Why? Because if he didn't scare the shit out of these boys--likely ensuring that they'll at least think twice about doing something like that again--who will? Certainly not the adults in charge. What kills me is that the county sheriff's department says the father, who is facing charges, should've called them. Right. How much time and effort do you think they'd've put into investigating that? News reports say that the father had, in fact, tried to report incidents to county school administrators previously, to no avail. Big shock, that. The bullying, according to reports, had been going on since school started.

By the way, according to reports, the girl had to be hospitalized as a result of the stress of the confrontation.

So...what do you think? What would you have done had your child gotten off the bus--after weeks of being bullied--and reported an experience like this one? Personally, and it's not something I'd be proud of, I think I'd've gotten on that bus and expressed some anger, too.

Donald Triplett: What his story might tell us

If you haven't read the story about Donald Triplett, the first person diagnosed with autism (note: not the first person to have autism), you should read it. All of it. There's also a video worth viewing.

Having read it myself, I had a few take-home messages from it.

The details of Triplett's life story overturn several assumptions about autism, from how it manifests from birth to death to how autistic people view the world. There's one tale (and I won't spoil the punchline) that provides insight into both Triplett's ability to be a tad tricksy (but autistic people can't lie!) and into his natural inclination to have people like him. Oh, it's true. Autistic people might actually want people to like them. Shocking, isn't it?

Then there are the families. Anyone who's watched the Temple Grandin biopic or read her book will have an understanding of how large her mother's role was in her success. There are commonalities in these two stories that go beyond the shocker of "Hey, these adult autistic people exist!" and "Hey, these adult autistic people are living fulfilled lives, on their terms!" These commonalities include an extraordinarily supportive and accepting family background. Parents who wouldn't take "no" for a response from either their autistic children or the authorities who wanted them institutionalized and marginalized.

I have to note that their stories also include a wealthy family background, one that facilitated much of what the family in each case was able to do for their child. As someone notes in the piece, "In a small southern town, if you're odd and poor, you're crazy; if you're odd and rich, all you are is a little eccentric." I cannot help but to extrapolate that to the world at large. Money takes things a long way. What we need here is similar societal strength and support for autistic people and their families when they do not have the money to go to these extraordinary measures for their children.

Triplett and Grandin also stand out in that they each have savant capacities and in Triplett's case, an interesting number-related kind of synesthesia. Obviously underlying their savant abilities is a powerful native intelligence. Yes, Triplett is happy, and Grandin is successful. But as hopeful as their stories are, I know that they likely aren't representative of most or many or all autistic people. The question is, Is that because of huge intrinsic differences, or because of those external differences that involved strong family (and thus social) support and the filial wealth to do what was needed for them? Money and power are often so much more determinative for us than our own specific neural constructs.

That said, there is one thread of real optimism to grasp here, one that might weave through the lives of any autistic person, and that is the question of developmental milestones. We all think of these typically in terms of childhood, and any autism parent knows that an autistic child often does not meet these pediatric milestones. Well, guess what? We continue to meet milestones beyond childhood. Development doesn't stop when you're 18 years old. In fact, I'd hazard a guess that anyone here who knows a man knows that that man, unless he was preternaturally mature, was not quite...a man..at age 18. Or age 20. Or age 22. Or even later.

I know from my own experience that there were certain skills I didn't acquire or gain clarity about until I was in my late 20s. Studying effectively--didn't pick it up until grad school. Organizing my time, understanding what responsibility really means. Grasping a large number of social interaction rules, some of which I didn't quite get until my mid-30s, and I'm still learning. We do not stop developing, possibly our entire lives, and autistic people are no different. Indeed, as the story points out, Triplett reached a few remarkable milestones in his own life at the ages of 23, 27, and 36. Bottom line? Wherever your child is now, wherever you are now, the developmental road will rise in the future, and your child and/or you will rise with it.

Donald's story is one of a life well lived, but it's not a typical life. It probably isn't the kind of life a neurotypical would seek, one devoid of a lifelong companion or intense social interactions. But just as I've got my own ideas about what would make me happy--some of them quite, well, in the absence of riches, I'll have to call 'em crazy--so does any other individual. I think it's important to realize, for our children and others, that our personal definition of fulfillment or happiness will always differ, sometimes in grand, mystifying ways, from the definition of the person next to us, whether that person is autistic or not.

No, he's NOT sleepy, you mind-blind fool

I wonder if other parents find themselves in this situation. You bring your child into a scenario involving adults. Adults, being what they are, speak to your child. I'm assuming these adults are neurotypical, but I guess I could be wrong. Your child, who is not neurotypical, responds, but quietly and monosyllabically, without looking up. It's clear to you that your child is almost paralyzed with anxiety at having been spoken to by a complete stranger or by the fact that they're at the dentist or at the bus stop surrounded by children and grownups they do not know...but...

...it's apparently not clear to the neurotypical adult. And I'd need more fingers and toes to be able to use my own digits to count the number of times lately we've been in that situation, and after my child *responds*, the adult says, to me or to the Viking, "Oh, he's still not quite awake yet, huh?"

Why? Why do they feel like it's OK (1) to talk about my child in the third person in front of my child, and (2) to comment on his social interaction in that way? My children may be socially disadvantaged, but they know when an adult is commenting in a backhanded, negative way on their behavior. We, the parents, have both gotten so sick of it that we simply now answer, "No. He's wide awake and has been for hours. He's just painfully shy."

Just this week, at a pediatric dentist, the hygienist pulled this with Dubya. After hassling me, of course, about the amount of tartar on his teeth. I have twice in the last three months gone into that child's mouth myself with dental instruments and removed the tartar. There are reasons people don't like to go to the dentist, and it's not all about the pain. While we're at it, please stop calling me "Mom" as though it were my name. It's not, and no one else on Earth calls me that.

Oops. Sorry. Got derailed there. Back to the topic at hand. The big question bugging me about these adult-child interactions is, If these are supposed to be the neurotypicals, how is it that they have so little insight into what's really going on in that exchange?

Pediatrics study finds no link between thimerosal exposure via vaccines and autism

"This study revealed no increased risk of ASD associated with receipt of thimerosal-containing vaccines. No increased risk was found for subtypes of ASD, including ASD with regression, and prenatal exposure was not associated with a risk of ASD."

This latest study, available via open access, is published in Pediatrics. It's a much-anticipated, CDC-funded study that ought to put the lid once and for all on the vaccine-autism scare. No, I don't think that's really going to happen, but certainly, the results will soothe some fears.

As for those results, it's really pretty much as straightforward as the opening quote implies. This study was a case control, meaning that they matched children with ASD (n =256) and children without (n = 752) based on various demographic characteristics, including age, sex, and birth year. The children were born between 1994 and 1999. The authors determined thimerosal exposures by examination of patient charts and electronic registries and by performing parent interviews so that there isn't a whole lot of question about what exposures each child received. The case-control design helps to remove a number of potential confounding variables, while the reliance on charts for vaccine information provides a solid foundation for a pretty accurate measure of thimerosal exposure.

Further, they looked at separate categories of autism disorder: (1) autism spectrum disorder; (2) a category they term "autistic disorder"; and (3) the type that involved reported regression, termed "ASD with regression." In addition, they evaluated prenatal exposure as well as exposure from birth through 20 months.

In other words, this was a pretty comprehensive study design. Didn't involve rats or mice. Involved a thousand children. On-target with stating the hypothesis and relying on a study design that addresses that hypothesis as directly as possible. To determine whether or not a relationship exists between autism of any type and thimerosal exposure, they performed logistic regression analysis covering several overlapping time frames.

Their results are clear. Odds ratios were frankly in no way indicative of a relationship between thimerosal exposure up to age 20 months and the presence of ASD of any kind.

Of course, these numbers and these findings will do little to assuage anti-vax true believers. I have taken a stab at looking at this paper from the perspective of someone who believes in a big pharma-CDC conspiracy. From that perspective, here a few points I'd anticipate such a person would make:

First, there's the conflict of interest (COI). There's a financial disclosure statement in the paper (of course) in which these potential COIs are given:

Dr Marcy received honoraria for speaking for Merck and GlaxoSmithKline within the last 5 yearsGlaxoSmithKline within the last 5 years and grant support for studies on Gardasil and ProQuad from Merck within the last 5 years; Mr Lewis received grant support from Medimmune, Sanofi Pasteur, Chiron, Wyeth, Merck, and GlaxoSmithKline; and Dr Bernal received research funding from the CDC, the National Institute of Mental Health, Health Resources and Service Administration, and Autism Speaks. The other authors have no financial relationships relevant to this article to disclose.

Clearly, Big Pharma names are plastered all over this, as are the names of the other "conspirators," NIMH, the CDC, et al. Autism Speaks, which continues to mislead about a vaccine-autism link on its Website, is also listed here, and I'm not entirely sure how they'd fit into such a conspiracy.

So, of the 14 authors on this paper, three have financial disclosures to make, and none of these three is a lead or senior author on the paper. Not feeling a huge conspiracy here, but that's difficult for me anyway.

Then, I checked some of the data. Table 2 shows the average mercury exposures for the controls and the ASD children. They are all quite close in value with the exception of prenatal exposures in the ASD with regression group. (As an aside, I note that these values do not come close to the alleged "relevant" exposures used in the questionable Majewska rat study. Even the highest cumulative dose--accumulated over the course of 20 months--does not approach what they cumulatively gave the rats in the lowest-dose group in that study).

Table 3 shows the ORs derived from their analyses. Odds ratios show how much the odds might be decreased or increased with a given interaction of variables. An OR of around 1 means no difference in odds between the groups. Indeed, in Table 3, few ORs exceed 1 and none of them significantly, while several of them are well below one, indicating reduced odds. A companion technical paper is available to people who would like to examine all of the data and results in detail.

As the authors note:

In the covariate adjusted models, we found that an increase in ethylmercury exposure in 2 of the 4 exposure time periods evaluated was associated with decreased risk of each of the 3 ASD outcomes. We are not aware of a biological mechanism that would lead to this result. Analyses to explore potential explanations are presented in the technical re port.10,11 For example, there were no significant differences between case-children and controls in the numbers of vaccines received up to ages 7 or 20 months. Case-children were more likely to have received thimerosal-free or combined Hib vaccines than con- trols and more likely to have received thimerosal-free hepatitis B vaccines, resulting in the slightly lower cumulative exposure amounts.

This isn't the first time researchers have found a negative association between thimerosal exposure and autism.

Further, and this is interesting, they state in the discussion, "We found no evidence that the results were sensitive to extreme exposure amounts, extreme residual values, or were being driven by a few unusual individuals." They also performed an analysis to check for self-selection bias, given their low response rate, and found no indication of such a bias. Their use of charts as a double-check of parental recall also reduced the chances of squirrelly exposure data. I'm not seeing a conspiracy here, although I'm trying to find one.

Another thing alone that would militate against a conspiracy here is the lengthy acknowledgments section. There are dozens of people listed who were involved in several aspects of this work, from different representative organizations. Further, the cases came from three separate managed care organizations, which would be expected to help smooth any glaring single-source differences.

Finally, I note the description of how the study protocol was developed, which seems to have been done with even more than usual care, probably in anticipation of various negative responses:

"The study protocol was developed before data collection in consultation with a panel of external consultants that included autism advocates and experts in autism, child development, toxicology, epidemiology, biostatistics, and vaccine safety. All subgroup analyses and interaction tests were specified in the study protocol before data collection." In other words, there was a large group effort here with more inclusion than I can ever recall having seen on such a study before. They specified how all of the analyses would be done before embarking on data collection and adhered to that protocol. This inclusive, open approach ought to be the final nail in the coffin of a conspiracy theory, the final decomposition of the dead horse, the...well, insert your own hackneyed metaphor here.

The authors end their discussion with the following conclusion:

"The results of our study ... do not support the hypothesis that ethylmercury exposure from TCIs (thimerosal-containing injections) administered prenatally or during infancy is related to increased risk of ASDs."

I know this isn't the end of the question in the minds of some people, but I hope and genuinely also believe that it will lay to rest for many people their concerns about vaccines and autism.

Figeater beetles and executive function

I came online to type a sweet blog post about how my oldest son just did a kind thing for littlest brother that involved planning, executive function skills, and a wee bit of typing. Before coming to my own blog, I stopped by another blog, one whose author does not view me with a favorable eye, to a post that a friend had pointed out to me. There, I've learned that I'm "homely" and likely a "hermit" who's an "oddball" and a "phony" and who "might be" autistic myself. And that I'm on a "laughable crusade" to let the world know that I am an expert because of my "huge" background in science. There even seems to be some question about what my real name might be.

Heh. I guess those grapes are pretty sour. I'm not gonna apologize for being an attractive, genuine gal named Emily Willingham who has a terminal degree in biology, many dear and lovely friends, a beautiful life, a quirky way about me, and a compulsion to type about it all. It also seems the the entire city of Boston is sadly misled when it comes to autism. Boston, I hope you can recover.

Anyway, our youngest came home from school Friday with an assignment of sorts, involving acquisition of items of nature--skulls, snakeskins, bugs, and such--for display in the classroom. We have many such things lying around our home--inside and out--and there was much discussion about what we might choose. Dubya, who is the principal owner of much of this collection, was a bit loath to let any of it go. After some fervent bargaining, we still had not reached much of an agreement about what Little could take to school on Monday.

Saturday morning, TH came to me, an object in his hand. It was a small plastic container, sort of like the ones you get from vending machines that have tiny toys in them. Inside of it was a well-preserved, dead beetle. There was a label carefully typed out and taped to it that read, "Figeater beatle."

Turns out that he'd awakened fairly early, gone outside and harvested this beetle (or beatle), come inside and googled beetles until he'd gotten an image match, typed up the label, printed it, cut it out, and taped it to the "specimen container." All for his baby brother.

I'll just leave it at that. Those of you who know, know what a big deal this is. A genuine, beautiful, lovely, thoughtful deal.

Asking an Aspie the cure question

You've wondered it or been asked or even taken a stand on it: If there were a cure available for autism, would you want it for yourself if you're autistic or for your autistic child?

This question drives me nuts. In some ways, it's like asking someone born brunette if they want a cure for it. Obviously, some brunettes do want a cure for their terrible malady, and they address it by dyeing their hair a different color. Other brunettes--I'm in this camp--are perfectly fine with their hair, thank you, and leave it as-is.

How about a cure for tiny boobies? Yes, some women deal with their less-endowed parts by endowing them with silicone or saline or wearing those uncomfortable-looking push-up bras, while others just leave things as-is, possibly even enjoying the fact that they don't have to spend thirty bucks a pop on some wired, unbreathable, tight contraption designed to hold their mammaries in place. I'm in neither of these camps, simply observing here.

Just like hair or breast size, autism and cure would be individual decisions, based on individual circumstances, needs, severity, and goals. Which takes me to the next thing about this question that drives me nuts: That "would be" part. Unlike hair dye and breast implants, cures for autism do not exist. Why are we asking this question? Just so people can argue about it?

I've blogged this before, sometime in my dark, bloggy past. I ended my musings then with a question, using the nom d' blog I'd stupidly chosen for TH at the time, "Edison." My question was, "What would (TH) want to do?" At that stage, he wasn't in a place where I could ask him that question and get a rational or sensible response. Today, I think he is. I'm actually going to ask him in a minute, but before that, I need to explain why I'm expanding on this topic in the first place, given how firmly I dislike it.

Yesterday, I read something about cure and autism, and my reaction to it surprised me. A vision came into my mind of a child, someone whom I don't know but who looks like TH. A boy with a straight spine and upright posture, who runs smoothly and with grace. A boy who completes homework on his own, legibly, with a tripod grasp, who zips his pants, understands the rules of football, and can talk to other children at recess, play on the monkey bars, swing on his own. A boy who goes through his day in relative silence, hands to his side, face in alignment, features regular and even. A boy who can stride boldly into a room of strangers, smile courteously, and tender greetings with outstretched hand and full eye contact. A boy who answers questions with sentences rather than with Eeeeee.

This boy does not come to me in the night for comfort or compulsively visit me in the mornings. He does not hang on my arm as we walk together because we hardly ever walk together--he's got his own things going. This boy's room is not littered with Pokemon cards and acorns but with more sophisticated nine-year-old trappings. He's in there a lot, away from us, not that eager to share his every thought. And his thoughts are not the same. He doesn't talk to me, to us, about acorns or bugs or Mario or Pokemon or sharks. He's frankly gotten too cool now as a 4th grader to engage with us much at all. He whispers often with his friends but shares little with us. Already, we feel like we hardly know him.

Who is that boy? All I know is, He's not my son.

As I placed this imaginary, "cured" version of TH next to the TH I know and love, who's like this boy in some ways but so very, very different, I came to a clear decision: I rejected that "cured" version of my son. He bored me, and we had no understanding of each other. I did not know him, and he wasn't terribly interested in knowing me. My decision on cure is clear: My son, the way he is now, is my son. I'm not interested in changing him, even if I could. Would I feel this way if, for example, epic meltdowns returned or TH became miserable because of his autism? I can't say because that's no more our reality than is the possibility of a cure.

Other parents with different circumstances, different children, will have a different conclusion. They might embrace the "cured" version of their child for compelling reasons, reasons like wanting to hear their child's voice, see their child feel calm and peace, know that their child has a chance at an independent life. But I do not because that's not how my boy on the spectrum is.

Does what I think matter? Not in reality, where there is no cure, anyway. Does what TH thinks matter? Only for the same reason my opinion might be relevant: a "no" to the cure question might indicate a certain level of acceptance of who he is, just as my response indicates my embrace of all that is my son. This acceptance from an autistic child who's aware enough to know he's different, who's aware enough to feel other's opinions of him, who's aware enough to feel an autistic identity, is significant for him.

So, let's ask TH what he thinks. Red pill or blue pill? (Yes, I did this as I composed the post, summoning TH at the moment of writing this sentence).

Me: "TH, if someone made a pill that would make your Asperger's go away so that you'd be like a 'regular' person (here, I cited one of his very regular former classmates), would you take it?"

TH gave me a classic TH response, complete with double take: "Wait, there's a pill for that?"

Me: "No, but if there were, would you want to take it?"

TH, thinking for a bit. "No."

Me: "Why?"

TH: "Because I like myself the way I am."

Sweet baby. That's easy for him to say. He's got blond hair.

On anti-vaxers, science, and sticks of butter

It's a love-hate thing between the two, the anti-vax coven and science. Science has no feelings about it at all, while the anti-vaxers hate science unless, of course, they've found some "science" that they can take and twist and spin and contort until it fits into the mold that they've formed around their ability to think.

Right now, for the anti-vax crowd, they're really feelin' the luv for the sciency types. Check out Age of Autism and the latest spin on what they view as "support" for the mercury-autism link. No, I double-dog dare you. You can do it. Just get a bucket first.

The study that has them falling in luv all over again comes to us courtesy of the journal Neurochemistry Research. You can find the full-text paper here. (Edited to add: I also have found this conference PDF in which the senior author of this study, Maria Majewska, lays out her argument for pursuing the vaccine-autism connection. If you're wondering what their dog is in this hunt, you'll hear some barking here. It appears that the senior author on this study has a history that includes signing a petition in support of Andrew Wakefield and denying that H1N1 was a pandemic).

Naturally, I have a few points to make.

1. The entire hypothesis of the study relies on a set of papers that are suspect at best.

The authors state that, "Early life exposure to mercurials, including (thimerosal), is suspected to be a pathogenic factor in several neurodevelopmental disorders." I read that and thought to myself, "Really? What are the citations for that?" Well, here they are from the paper, citations 7 through 10; note the authors, journals, and type of publication, and draw your own conclusions:

Bernard S, Enayati A, Redwood L, Roger H, Binstock T (2001) Autism: a novel form of mercury poisoning. Med Hypotheses 56: 462–471

Geier MR, Geier DA (2003) Neurodevelopmental disorders after thimerosal-containing vaccines: a brief communication. Exp Biol Med 228:660–664

Mutter J, Naumann J, Schneider R, Walach H, Haley B (2005) Mercury and autism: accelerating evidence? Neuroendocrinol Lett 26:439–446

Young H, Geier D, Geier M (2008) Thimerosal exposure in infants and neurodevelopmental disorders: an assessment of computerized medical records in the vaccine safety datalink.

J Neurol Sci 271:110–118

In other words, the hypothesis, from a scientific viewpoint, is dead in the water. These citations offer little to prop it up. There goes any reason for doing the study.

2. The core of the study design is the claim that the authors are using relevant Hg/thimerosal exposures. The citation for the concentration used is...their own previous paper. Red flag.

The authors rely on what they aver are relevant doses of thimerosal, giving 12 mcg of Hg/kg as the exposure that would reflect what children receive "in some countries." I checked the citation they offered up to support that assertion. Guess what? It's one of their own papers. Reference 11--see for yourself. Self-citing for the core of your study design? Not a great idea.

3. The doses of thimerosal are claimed to be representative of real exposures. They are not.

The FDA has this to say about thimerosal in vaccines: "When thimerosal is used as a preservative in vaccines, it is present in concentrations up to 0.01%. A vaccine containing 0.1 thimerosal as a preservative contains 50 mcg of thimerosal per 0.5 ml dose, or approximately 25 mcg of mercury per 0.5 ml dose."

Look at this table. It shows the per 0.5 ml concentration of thimerosal in current vaccines. One thing you may note is how few vaccines contain or ever have contained thimerosal. As you can see, the injectable flu vaccine contains the highest concentration of actual Hg, at 25 mcg/0.5 ml. This vaccine is not used in children under age 6 months. The average 6-month old child is about 15 lbs (mine are bigger, so this is conservative for us). That's about 6.8 kg. A child receiving this flu shot right at age 6 months would thus receive about 3.7 mcg of Hg/kg. Got that? 3.7 mcg/kg.

In their study, the authors don't specifically use thimerosal concentrations but instead refer to the concentration of Hg in the thimerosal they use. The lowest concentration of Hg the authors used in their study, one they claim is relevant and applicable for "many countries," based on their self-cited reference, is 12 mcg/kg. In other words, that dose of Hg is 3.2 x what a 6-month old would receive in one of the few remaining shots that contains thimerosal or ever has contained it.

Their starting dose is at least 3.2 times the relevant exposure of Hg. But they're not finished. They don't use that dose once. They use it four times, injecting the newborn rats on days 7, 9, 11, and 15 of life, each time with 3.2 times the actual relevant exposure of Hg, for a total of 48 mcg of Hg/kg in a little over a week. Indeed, even if 12 mcg were the relevant exposure, they're dosing their animals with it four times within a week, give or take, giving us ~13 fold the relevant exposure.

Bottom line: Their alleged "relevant" lowest exposure dose is waaaay too much for a real-world model--by an order of magnitude.

4. They find no significant results with their lowest dose, the one that's supposed to be a real-life model and is not.

In fact, any significance they do find is with these enormous exposures, the highest of which adds up to a total of 12,000 mcg of Hg/kg over the week dosing period. Yes, that comes out to 12 mg of Hg for every kilogram of baby rat. For a 6-month old human baby weighing 15 pounds, that would be 8.16 g of mercury. In everyday terms, that's 0.02 pounds, or nice spoonful's worth of mercury, about the size of a pat of butter.

So, no surprise that with those higher doses, they got some results. Look at their tables, 1-3. You'll find that there is no report of that lowest, allegedly relevant dose having a significant effect. Only their huge doses had any effect.

5. They get away with saying this in the Discussion:

"The effect was clearly noticeable already at the lowest dose of thimerosal (12 mcg Hg/kg), equivalent to those used in pediatric vaccines, although at this dose it did not reach statistical significance."

Aaargh. They get away with saying this about a fairly subjective assessment involving cell/molecular staining, which can be notoriously difficult to quantify. No decent reviewer would have let this sentence get by. You're not "supposed" to bring up non-significant data unless there is some shadow of clinical application that might make it worth mentioning.

6. The Discussion itself is one long string of speculation.

Again, something a reviewer of decent stripe would have reined in.

7. They cite a Medical Veritas paper in the references:

Haley BE (2005) Mercury toxicity: genetic susceptibility and synergistic effects. Med Veritas 2:535–542

Geiers? Med Veritas? Self citation? The foundations of this work are shaky indeed, and the results? They tell us...hey, guess what...butter-pat-sized doses of mercury in young mammals can kinda affect some neurological stuff.

Not terribly useful in the end, is it? Doesn't autism deserve better? Without the spoonful of mercury?

NB: Math, schmath. Needed to move a decimal over and have. Doesn't change any of the critique, just my butter analogy.