Thursday, May 27, 2010

And they shall call him Teacher

TH wrapped up his little professor stint with the kindergarten class at school. He taught them four times, about insects, sharks, reptiles, and dinosaurs, this last being his self-proclaimed "grand finale." With each experience, he gained more and more confidence, let his quirky and goofy sense of humor break through his monotone professorial demeanor a little more each time. By the dinosaur presentation, he was working the audience like a pro, anticipating their questions, guiding them, asking them to hold questions until the end, and having them in stitches with his funny asides. He was still as odd as he could be, but in a way that was endearing and engaging, a way that didn't make the children wary.

We owe a huge debt of gratitude to the woman who made this possible, his kindergarten teacher, Mrs. L. She has always shown a deep understanding of our son, not only tolerating him but also really loving and appreciating him. It was her idea to have him do this, something she suggested to him just after he left the school to start homeschooling. She had confidence in him that he could do it, that it was something he'd enjoy, and she was right. Yes, it took a Pokemon card bribe to get him into the room that first time, but the next three times? He did it with no extrinsic incentive whatsoever, and he did it with anticipation and enthusiasm.

Four years ago, when he was in that classroom, when I was in there with him every day, together struggling even to get halfway through a little art project, there's no way I could have predicted what he'd be able to do at age nine. If someone had come to me and said that my checked-out, socially confused, academically behind, full-time aide-supported son whom most of the kindergarten kids detested would be sitting in a room full of kindergarteners in four years, lecturing knowledgeably and mostly accurately on a variety of fauna across geologic time, I wouldn't have believed them.

And I certainly wouldn't have believed them if they'd said that the kindergarteners would mob him, worshipfully touching him, asking him questions, desperate for answers from TH, the Font of Knowledge. That one little girl would come up to him after his reptile presentation and say, "You're the awesomest!" This is the woman I want my son to marry someday.

I told Mrs. L as we left the grand finale lecture that day that what she had done here was life-changing for TH. He's discovered that he has a talent, and that talent is absorbing information like a sponge and then teaching it to others in ways that reach them. She opened the door on that realization for him, and it wasn't only because she gave him this chance to prove himself. There was something more.

Every year at this school, each student receives what is called a "character rock," a river stone painted with a word that characterizes the student. TH's rocks in the past have said, "honest" and "curious" and "logical." All of these are true. But this year, he's not in the school any more, and he won't be there on that last class day to receive a character rock. Mrs. L., on top of things as usual, had that taken care of, too.

When TH wrapped up his grand finale, she sat next to him in front of the class and thanked him for coming there for the fourth time to present to them. And then, she reached out and handed him a large, smooth stone. His character rock. On it, she had painted the word, "Teacher." Even as I was trying to recover from the emotion of that moment, TH did yet another surprising thing. If you had told me only the day before that he'd do this thing, I wouldn't have believed you. Obviously, I need to have more faith in my son and more faith in the power of ongoing development.

He turned directly to Mrs. L. and said, without self consciousness, with all sincerity, with grace and naturalness, "Thank you so much. This means a lot to me." And he reached out, just a little, as though to touch her arm, almost as though he were going to hug her. It was something that maybe parents of neurotypical children might not even have noticed. But Mrs. L. noticed it, and so did I. It was like watching a flower bloom.

And so, our little Teacher ended the first semester of his career. These four life-changing moments in his first year of homeschool have done much for his character, teaching him--and his clearly skeptical mother--many lessons. Lessons that in this case are carved in--well, painted on--stone.

Wednesday, May 26, 2010

Empty your wallet for ANDY one more time!

I've come across the following plea in the autismosphere, and thought I'd share it here, with commentary (in red), of course:

THE PLEA
-------------------------------------------------------
Can you PLEAAAASEEEEE do me a very big favor? Go on line today and buy Andy Wakefield's book, Callous Disregard.... (at least the title is accurate).

And, you need to do this TODAY (please). We're trying to get this book to the top of the list and today counts. After being out only one day it's currently at #24 at Amazon.com. We want to see this on the NYT Bestseller List.(I've never seen a plea quite like this before. Do self-respecting authors actually countenance begging people to make their books bestsellers? Ewww.).

Not that you need any encouragement to help someone who helped us like Andy helped our family - and has paid a huge personal and professional price for helping our autistic children everywhere (yes, everywhere, and with huge fiscal recompense, I might add. Let's help him out, folks!) - but Andy is exposing the politics and corruption within medical science and national policymaking which are making it impossible to sort out what drugs help which people (Really? All that stuff on PubMed can't be parsed, can't be sorted out? Only Andy the Demigod can do it?) and are costing people everywhere a lot of money for possibly nothing good (I'll just let this one stand all by itself as irony meters worldwide explode). It's a serious problem that affects us all (this is a statement I can get behind).

Please get out your wallet and send a message (Yes, get out those wallets for Andy, again). We're tired of the politics in medicine and public health (so are we) - and the conflicts of interest (there go some more meters) - and the back room deals which are hurting our children (that sound you just heard was the explosion of any remaining irony meters). Plus you can get the FREE BONUS GIFTS listed in the announcement below (OK...I've also NEVER seen this before--a free "bonus" gift for buying a book? WTF?). (Boldface courtesy of me)

And PLEASE - forward this note - and send out to the biggest email list you can (I'm just posting it here on my blog; hope that counts). If you know someone with autism, they will benefit from having this book (Really? An autistic person will benefit from Wakefield's book? I thought this was all about the parents...and Andy). Let's make a splash (in a cesspool of misinformation). We need to send a message! (Message received. Ad nauseam) We might be the little people but add us up, and we can make lots of noise!!! (This, I acknowledge wholeheartedly. Depressing, but there it is).

Buy Dr. Andrew Wakefield's book today! (No. I'd rather undergo seven hours of torture being forced to read a dozen romance novels. The level of realism is likely about the same anyway.)

As a valued member of our community, we ("we" is the valued member of our community?) have an important recommendation for you - Callous Disregard by Dr. Andrew Wakefield. For the first time, Dr. Wakefield reveals the inside story of the vaccine-autism connection (because doing so when his career and license were on the line before the General Medical Council would, apparently, have been the height of stupidity).

As you probably know, the number of children with autism has grown exponentially in the last 20 years (that'd likely be the number of diagnosed cases, rather than increase in autism) and Dr. Wakefield has dedicated his professional career to helping those affected and to saving children from becoming part of this pandemic (and also creating a vaccine, drawing blood at a birthday party, being found guilty of a long list of charges, violating research ethics six different ways from Sunday, writing a book and allowing offers of bribes of free gifts to make it a bestseller, and switching hypotheses around willy nilly).

We need your help to make Callous Disregard a bestseller, and for Dr. Wakefield's message to be heard by as many parents as possible. Please forward this email message to all of your friends and family to urge them to purchase Callous Disregard TODAY. (No.)

Buy the book TODAY to get the following exclusive bonuses: (Is this the Home Shopping Network or what?)

• An exclusive opportunity to participate in a FREE tele-seminar hosted by Dr. Wakefield to ask any questions you like. (I need this monitor and would prefer not to vomit on it).

• Free chapters from Cutting-Edge Therapies for Autism and recipes of sweet treats and fun snacks from Autism Cookbook, published by Skyhorse. (Free chapters?)

• Free chapters from Stop Raising Einstein, in which Tara Kennedy-Kline shares her experience raising autistic child (We appear to have lost track of both our definite and indefinite articles at this point). In addition,Tara will host a FREE tele-seminar to share the benefits of writing journals with autistic children. (What is wrong, exactly, with raising Einstein? He seems to have done OK.His mother probably thought raising him was all right.)

• Free audio Finding the Gluten-Free Diet That Works for Your Family & Budget from Holistic Autism Consultant Sunshine Boatright. She will host a FREE tele-seminar to help with questions you may have after listening to the audio. (I'm just leaving this one for you to read and enjoy).

Callous Disregard is a great book not only for yourself, but for anyone who cares about children and the safety of vaccines. (No. And I care deeply about children and the safety of vaccines.)

Steps to take TODAY (ALL CAPS, people. This is SERIOUS):

One: Order from SafeMinds Amazon store here. (No. Shan't.)
Just click on Callous Disregard: Autism and Vaccines: The Truth Behind a Tragedy (I think Wakefield is the tragedy, but I'm betting that's not what that means).

Two: Forward a copy of your order receipt/confirmation email
to anniejody@... to receive access to your FREE Bonus Gifts and Dr. Wakefield's tele-seminar.

Three: Retrieve your FREE Bonus Gifts! (On The Autism Home Shopping Network! Then, click your heels together three times and say, "There's no demigod like Andy. There's no demigod like Andy.")

Here's what Jenny McCarthy has to say about this book: (This would be the parent whose son was first an Indigo Child, then autistic and vaccine injured, then "cured" of his autism, then...never autistic in the first place? Clearly, this forward contains the words of an expert.)

"I'm so glad Andy Wakefield finally has the chance to tell his story (because doing that before the GMC would have been sheer folly.). Perhaps no debate on the planet right now is more confusing, more conflicting (Middle East, anyone?), or more maddening for parents (She's got me there.) than the debate over the causes and treatments of autism... For hundreds of thousands of parents around the world (Where the hell does she get these huge numbers? I'm assuming from the same places she gets her "data". What Google U course imparted that information?), myself included, Andy Wakefield is a symbol of strength and conviction that all parents of children with autism (which her child does not have) can use to fight for truth and the best lives possible for their kids." (Or not, because we just use our own strength and conviction, which works a lot better for us than symbols).

There you have it kids. Reach into that pocket ONE MORE TIME FOR ANDY!

Or...not.

That's it. Tomorrow, I take this blog back to its regularly scheduled, fairly snark- and Wakefield-free posting. I've got a sweet story about my autistic son and a huge success he's had lately, and we did it all without...oh, nevermind.

Monday, May 24, 2010

Adding to the anti-Wakefield conspiracy

Edited to add: Are you a fan of science? Do you rely on scientific data in your decision making? Don't let science be the loser here. Vote in the Today Show "Moms" (why only moms? Dads? Do you not count?) poll asking if vaccines are related to autism. Why? Because as of this posting, almost 55% of respondents to this admittedly unscientific poll are answering in the affirmative. Sigh.

These items just in--surely this can't be a coincidence!

First of all, the doctor is now OUT. The General Medical Council has seen fit to strip Wakefield of the ability to practice medicine in the UK. Not that he was doing that anyway, what with all the vaccine development he was busy with and guiding other practitioners in the finer points of unnecessary colonoscopies and spinal taps for defenseless children. Oh, and undermining global public health, too. Busy fella. Probably won't miss that whole "license to practice" anyway, what with the book tour and all.

From today's GMC ruling: The panel concluded that it is the only sanction that is appropriate to protect patients and is in the wider public interest, including the maintenance of public trust and confidence in the profession, and is proportionate to the serious and wide-ranging findings made against him.

Reminder: Guilty of more than 30 charges and "serious professional misconduct."

In what is no doubt part of the global conspiracy against Herr Doktor, an association study just appeared in Pediatrics reporting two interesting outcomes. The study addressed whether or not children who had been vaccinated according to the standard vaccination schedule differed in neuropsychological outcomes from children who either were delayed in getting vaccines or received no vaccines at all. It's a great question to ask, for obvious reasons, and longitudinal (long-term) investigations like this are crucial. The authors examined 42 neuropsychological parameters and used data from the Vaccine Safety Datalink resource. Oh, yes. "People" have, in fact, been "looking" at these things all along, like, say, since about 1990?

The first interesting finding is that on-schedule infant vaccinations were not associated with adverse effects on neuropsychological outcomes 7 to 10 years later. The second interesting finding is that being fully vaccinated was, in fact, associated with better outcomes on at least two performance parameters, a finding that held up under multivariate analysis. The less-vaccinated and unvaccinated children fared better on none of the parameters.

The results of this study hammer more nails into the coffins of two already dying or dead hypotheses. First, it knocks down any association between vaccines and adverse neuropsychological outcomes. In other words, it's yet another study finding no link between getting vaccinated and having "brain problems." Second, it fails to support the idiotic and unsupportable hypothesis that vaccines need to be spread out because infant immune systems "just can't handle that much challenge," that these vaccines in such "abundance" will cause harm, specifically neurological harm. Guess not. At least, not based on these findings.

So, it's not that the scientific community has ignored the cries of a link between vaccines and autism. Far far from it. In fact, it's not Wakefield but the scientific community that has set up the database that makes information for such studies available. Have you noticed Wakefield calling for such comprehensive databases in the UK? Have you ever heard of Wakefield putting his robust shoulder to the grindstone of actual research that takes a hypothesis, formulates the best, most ethical, most objective way of addressing it, and then addresses it? Wouldn't someone as fervently engaged in this kind as research as he putatively is have been coining his high profile to call loudly for such databases worldwide, the very data--like that of the Danish registries--that could answer such questions for us. For him? Wouldn't someone so fervent in his faith in his own hypotheses be using the existing databases for this work?

What has Wakefield actually done with his high profile (and his cottage industry proceeds)? Bought him a big ol' house and done Wakefield the Martyr interviews. Oh, and he wrote that book, of course.

You probably haven't seen Wakefield put that large shoulder to that scientific grindstone or do any other of the myriad rational things a dedicated researcher with his putative interests would have done--because he hasn't. Actions may not genuinely speak louder than words, but they ought to.

Saturday, May 22, 2010

Mapping the conspiracy against Wakefield

I've been made aware of the following announcement, distributed via the Autism Action Coalition. I'm providing it here in its entirety, but you can also find the original on their Website. For ease of discussion, I've highlighted in boldface some relevant phrasing.
Support Andrew Wakefield, Mon., May 24, 8 am NYC
Please join Dr. Andrew Wakefield in a show of support on Monday, May 24 at 8 am at 30 Rockefeller Center (30 Rock) in New York, NY in front of the NBC Studios on 49th St. between 5th and 6th Ave. Shortly after 8 am, Wakefield will be interviewed by Matt Lauer on the Today show. Immediately following the Lauer interview Wakefield will rejoin our gathering outside the studio, hopefully for further media interviews. Your attendance is requested; please bring signs supporting Dr. Wakefield.
Dr. Wakefield believes the General Medical Council in Britain will issue a decision that morning that will deprive Dr. Wakefield of his ability to practice medicine in the UK. The decision will be the culmination of a four-year show trial in the UK of Wakefield and two of his colleagues, Dr. Simon Murch and Dr. John Walker Smith, who have been prosecuted for trumped up charges to punish them for a 1998 paper that suggested a possible connection between autism, bowel disease and the measles, mumps rubella vaccine.
The significance of their finding has been overshadowed by a concerted systematic effort to discredit the work and the researchers. This effort and an intense desire to subvert the inquiry into the issues of vaccine safety, and legal redress for vaccine damage, has culminated in the longest running and most expensive fitness to practice case ever in the UK, and serves as a totalitarian warning to other researchers who might consider questioning vaccine safety.

It accuses, by implication, all of the following (I've noted the origin of each conspiratorial group in red boldface for easier mapping). This is just the short-list of the vast conspiracy to persecute Dr. Wakefield, those who have colluded in this "totalitarian warning" to "subvert the inquiry" into vaccine safety and to "discredit the work and the researchers," including orchestrating a "show trial" based on "trumped-up" charges.
All of the authors of the following papers and the associated journals and any peer reviewers (many links courtesy of the Autism Science Foundation) and many more not listed here:

This is huge, my friends. Clearly global, encompassing countries from the United States to Denmark to Japan to Australia and pretty much any organization, national or global, interested in public health.

What self-respecting scientist would allow this kind of histrionic verbiage to be disseminated on his behalf? Oh, perhaps one who would tweet the following to his followers. Clearly, he's here to help them...help him.
Andy Wakefield (@DrWakefield)
5/20/10 14:24
@TannersDad Would you help spreading the word? Buy my book from (link removed) on 25th to get free bonus and help it become bestseller
Please. Do what you can to help. Because first, you get that free bonus, and second, you'll counter that totalitarian warning that all of the conspirators above have sent via a show trial with trumped-up charges to punish Dr. Wakefield via a concerted and systematic effort. One thing that I just can't figure out: How do they all keep in touch to keep the conspiracy rolling? Do they have a Yahoo group, or what?

-------------------------------------
Brian Deer writes, anticipating tomorrow's ruling from the GMC that will revoke Wakefield's credentials to practice medicine in the UK. A parent whose child was one of the dozen in the retracted Lancet study has written to Deer: "'Please let me know if Andrew W has his doctor’s licence revoked,' emailed the father of Child 11. 'His misrepresentation of my son in his research paper is inexcusable. His motives for this, I may never know.'”

Friday, May 21, 2010

Clomid and autism

A recent spate of news stories has reported in glaring headlines that researchers have linked the use of fertility drugs like Clomid with autism. "Studies Link Fertility Treatments to Autism," "IVF, Infertility Drugs Might Boost Autism Risk," and "Infertility Drugs Raise Autism Risk?"

Gaaaaah. Et tu, News Media, otra vez? Was the MMR-autism debacle not a lesson learned?

There are two studies involved here, both presented at the IMFAR conference, neither yet published. The first is based on the Nurses' Health Study II and involves a large cohort of women, 3,985 of them, 111 of whom responded on a questionnaire that they have a child with autism. I'll leave out for now what one could infer about autism prevalence (at least among the children of nurses) from these data and just address some issues. The Time.com article delves into caveats about the study--in the sixth paragraph. But these caveats are significant.

For anyone who's reading this who's a woman who took Clomid or any other infertility drug and had a child with autism, please take heart in the following and try to avoid any self flagellation. For any woman who is taking Clomid right now or using other infertility therapies, please read this and take heart. You're using these therapies. You know the risks. Presumably, you accept them. Try not to add to your worry.

1. This study was based on answers to questionnaires. The answers, given retrospectively, were not confirmed with clinical data. They're just what the respondents recall or state for the record. These types of data are notoriously unreliable.

2. The absence of clinical information--and apparently related questions on the questionnaires--means that the researchers also had no data on the many potential confounding variables that could form a link to autism. That indeed have been shown to be linked to it: preterm birth, multiple birth (maybe), and low birth weight.

3. These data are from a paper presented at a conference. They are not published. That means they have yet to be peer reviewed. For public consumption, that also ought to mean that they don't exist yet, or, at the very least, the caveats need to be given earlier than the sixth graf. Like maybe in the lede graf?

4. I don't see any mention of inclusion of other potential effective variables possibly associated with infertility treatment in the data, including the age of the father, which has been linked to autism, as well.

In other words, a large number of variables known to be associated with infertility and infertility treatments were not considered in this analysis. All it shows is that there was an increased rate of autism among women who took fertility drugs. It does NOT demonstrate that fertility drugs are the cause of that increase. The researchers themselves are aware of this, and it is not their fault that the data they've justifiably presented at a conference have been transmogrified into a howl of alarm for public consumption. In the Time.com article, the commentary from the lead epidemiologist on the study clarifying the situation occurred about 10 paragraphs down:
Epidemiologist Kristen Lyall, who led the Harvard study, cautions that even if further research should confirm a link between infertility drugs and autism, any additional treatment-related risk appears to be small: among women whose average age was 35 when they had their first child, there was a 4% risk of having a child with autism for those who had taken fertility drugs, compared with 2% for those with no drug exposure. The increase in risk was even smaller among a younger subset of women.
Note that the correlation they identified was relatively decreased in younger women. That points, in my mind, to factors other than the infertility drugs themselves being involved here.

At the same conference a team from Israel reported a correlation between in vitro fertilization (IVF) and autism. Again, what they're talking about here is the finding that with the presence of one, the presence of the other increased. These data are described in one news media report as "even more preliminary" than the Harvard data. This report describes low birth weight and IVF as being more common among the histories of children with autism vs. their non-autistic peers.

Correlation is always problematic and inferences from it can be quite iffy. The rate of West Nile virus infection and the rate of ice cream consumption both increase during the hotter months. That doesn't mean that ice cream consumption causes West Nile. But the two phenomena do share other factors in common, including warming temperatures that drive both. IVF and the use of infertility drugs also have factors in common, including higher rates of multiple births, early births, and low birth weight. In the absence of consideration of these strongly relevant factors, the associations identified here between infertility therapies and autism are as relevant as that between ice cream and West Nile.

Correlation, as many of us often hear, does not mean causation.

Back to the news media. I wonder how many women they just scared shitless, drove into a guilt-induced slump with those headlines? Women who right now are using these therapies probably felt ill on reading those headlines, and not from the Clomid for once. Women who used these therapies before conceiving children later diagnosed with autism likely resurrected those "what did I do wrong?" self-questionings that seem to haunt parents of children with developmental differences.

What would have been better, more accurate? How about "Hint at link between autism and fertility treatments, but cause is unknown" or "Unpublished findings hint at autism-infertility treatment link, cause not known"? I know. Those aren't nearly as clickable as "Hey! That fertility drug you took before you had that autistic kid may have done that to him!"

Come on, news media. Remember the Wakefield paper! Viva la verite!

When autism parents collide

It happens to me in my community whenever I meet another autism parent. One of the first questions is invariably, "Are you doing GFCF?"--asked with an assumption that my answer will be positive. It's not. We haven't tried that diet because TH hasn't ever shown a need for it. The next question (and these may often come in reverse order) is, "You're working with Thoughtful House, right?" And, of course, I respond, "No." Funny thing is, when we were moving back here in 2006, I looked for autism resources in our community and came across Thoughtful House. One look at the folks in charge there, and I immediately canceled any plans to get in touch.

Another odd thing is, all I do is say, "No, we've not tried that. He's doing fine." Blandly. Without attitude (I think. You never know. But I'm Southern, and we have a lot of practice with this kind of thing). But what invariably follows is, at the very least, a "tut tut," as in, "Oh, well, clearly you're failing your child by not doing all of these things that everyone else is doing to ameliorate his autism-related problems." I'd feel some of that implied (or is it applied?) guilt were it not the case that my son is an almost preternaturally happy child who's thriving in the environment we've created for him. Which includes the purchase of about seven gallons of organic milk and three loaves of whole wheat bread every week. That child is full of casein and gluten. And just about the healthiest person I know.

It's hard for me to know how much to say in these situations, especially when the questions drift into "don't you think vaccines did this to your son" territory. It's going to sound condescending, but the fact is, I'm trained. I just am. Possibly hypertrained because I not only have the training, eddymacation, and bona fides as a (now former) scientist, I critique and edit about eight original medical or scientific research papers every week across every imaginable discipline. I can parse scientific findings in my sleep. And when it comes to autism, I read the original papers, always. I've read everything related to both Krigsman and Wakefield and the charges against them, all that the courts (vaccine in the US, GMC in the UK) had to say about the minutiae...all of it. And my training sets off alarm bells so loud in my mind that I almost move to cover my ears. These are not people with whom you want to hitch your wagon if you're a researcher.

And my problem isn't with the loving, passionate parents, it's with them, the demi-gods of the autism movement. The Sky Daddies (and Warrior Mommies like Jenny McCarthy) who promise miracles, who put themselves out there and facilitate a cottage industry of expensive and dangerous interventions and set off public health debacles and...you know, big stuff. Oh, and write books that are coming out soon and open up a "clinic" of their own where one will continue to practice "medicine" while the other will continue to do "research." The words I read in that linked article make me shudder. Public health...you're under threat yet again.

As I explained in a recent encounter, I don't take my training and knowledge and use it to judge any parent--any parent--for the choices they make for their children that aren't objectively tantamount to abuse. I'm a total libertarian when it comes to other parents and how they parent their children. My training and knowledge aren't enough for me to know their lives or their children--that's their expertise. If they get good results from their choices, that's great. I'd hope that they return the libertarian feeling, but I don't really find that to be the case. I feel the waves of judgment that emanate, sometimes manifested as open commentary, which makes me feel attacked. It's clear to me that to them, I'm a blind fool who haplessly fell into the clutches of the medical establishment and who cannot think for myself. Their pity is clear. I can live with differences--I'm a blue girl in a red state with many deeply conservative friends--but not when that criticism comes wafting down on me even as the sleeping giant of my own judgment lies undisturbed.

I've thought about the dichotomy between someone like me and someone like the other parents I meet in such situations. I've considered the words that we use. When we talk, my mind goes straight into data acquisition mode, and all I can do with each conversational exchange is to helplessly acquire more data that marshal an argument against what I know to be misinformation. I don't use the data in the conversation. There's no point. But I also don't talk emotion, and if I'm feeling any emotion, it's mostly just extreme discomfort at once again being embroiled in a tense discussion that will benefit no one and that forces me to keep sealed my bursting trove of counterpoints. What I have to say isn't for discussion at the individual level with caring parents who are doing their best for their children. It's broader than that, and these parent-to-parent conversations simply aren't the place for it. We've got friendlier stuff to talk about, right? Our children are autistic. We have that in common. How we got there doesn't matter in our moment together. The past is only prologue.

And I notice, even in my blanked state, that the other parent to whom I'm speaking usually uses a lot of emotional words and emotional gestures. Big faces, big hand movements. Strong words with great power, horror over vaccines, love, passion, urgency, fear, indignation, sometimes anger, and fervent proselytizing. I admit it: I have a problem with big emotion, and it just makes me all the more uncomfortable, adding to my feeling of being on the defensive.

In review, I see these encounters in real life (and in the blogosphere, too) as a clash of approach between people who rely heavily on attachment and emotion and people who...what? Don't feel? Don't attach? Ironically, even as I'm feeling fairly emotionless--an alleged autistic trait, yes?--they seem to be ignoring my social cues indicating that I don't want to talk more about this. Regardless, there's no way for someone like me, no matter what facts I marshal to defense of science and rationality, to counter attachment and belief and passion with that armory. It's like fighting fog with a sword. And I sort of like fog, anyway. It adds atmosphere.

But these differences don't mean that as parents to parents, we can't get along. We just need to agree not to talk politics, religion, or autism causation and cure, like civilized people should. My fight is at a different level. I keep my mouthing off in a different venue, beyond these individual encounters. The question is, Can we all do that?

Thursday, May 20, 2010

Who are the real villains here?

On the one hand, I bring you vaccines. There's a litany of unproven accusations about vaccines. There's all kinds of stuff in vaccines with long names or terms that people will naturally fear if they've not investigated further (formaldehyde comes to mind), but I urge you...strongly...to check each accusation against vaccines from a reputable source before you succumb to the fear factor associated with words like "mercury" and "formaldehyde" and "pig virus." Try to set emotion aside and just read.

And look into the published--peer-reviewed, published--research about vaccines and autism. Please. Read it. If you don't have time, a good read can be found here. And also read that vaccines have been exonerated again and again by entities as different and far flung as Danish scientists, the US vaccine court, and the CDC. Ask yourself...is it possible, is it humanly possible, for hundreds of thousands of scientists, doctors, drug company researchers, public health officials, and parents to collude in a vast conspiracy to undermine the public health, overlook alleged links with developmental disorders, and "ruin" your child just to funnel money to drug companies? Is that rational? No.

And if you continue to fear vaccines and fear the big, scary-sounding stuff that's in them, I'd suggest you get up off your couch, stop walking on your carpet, and go naked. And stop eating, while you're at it. Because what's probably far scarier than any vaccine is soaked into many things that you wear and sit on and much of what you eat. You're full of this stuff. Could these things I'm talking about be linked to developmental disorders? Why, yes, as a matter of fact. Indeed, one recent study just reported a clear correlation, and there are many other similar studies available. There's abundant research pointing to an influence of these compounds during embryonic development and beyond on neuroendocrine systems. And the list of scary-sounding chemicals is far longer--and demonstrably more threatening--than anything you'll find in a vaccine. And we're exposed to them Every. Single. Day. But hey...why pay attention to those screaming data when you can continue to freak out about vaccines and demand more research when, as I've said before, that horse is dead. Dead. Stop beating on the poor thing.

Once you've done all that reading and digested the information, I bring for your consideration the demigods of the anti-vaccine movement, Wakefield and Krigsman. I once wrote what I thought would be my last post about Andrew Wakefield, but the man is like a hydra and warrants more commentary, especially given the latest news coming from that quarter. Read everything you can about him. Start with the paper that started it all. Please. Consider that the "anti-vaccine" movement has hitched its wagon to a retracted paper based on a "study" of a dozen children who, as it turns out, were largely hand picked and that the entire thing was one long series of ethics violations and lies. So much so that the UK General Medical Council (GMC) produced a report on their investigation of Wakefield in which they scathingly indicted him as having "acted dishonestly" and having been "misleading" and showing a "callous disregard." Should we add the GMC to the list of people involved in a vast conspiracy to undermine public health, overlook alleged links with developmental disorders, and ruin your child just to funnel money to drug companies?

Read it. Read it all. Please. I invite you to imbibe every single word. The record here is wide open. There is nothing to hide.

When you're finished reading everything you can find about Wakefield (he's got a book coming out in which he promises to reveal the "truth"; why he didn't go ahead and do that while testifying before the GMC, I do not know), I invite you to read these documents about Krigsman.


Allow me to quote a bit from the Texas Medical Board document:
"...moved to recommend to the full board that the applicant (NB: Krigsman) be allowed to withdraw the application for licensure, then reapply for licensure and pay a $5,000 fine, due to disciplinary action by Lenox Hill Hospital, falsification of application regarding non-disciplinary citation by Florida, and misrepresentation regarding entitlement to practice medicine. Factors contributing to this recommendation include: one or more violations that involve more than one patient, repeated or recurring acts, attempted concealment of the act constituting a violation (action by Florida Board)."

Two men. A trail that does far more than hint at a pattern of lies, unethical practices, and deceit. There are only two of them. They've left behind nothing that qualifies as evidence of their claims. Nothing. In fact, everything they've tried to claim has been roundly and soundly debunked.

So. Please. Read and consider. Think about what's reasonable, what's rational here. Is it reasonable to believe that your pediatrician, with her or his eight years of post-graduate training and education and everyone else's pediatricians, along with researchers all over the world with a similar abundance of training, folks at the CDC and WHO who see people die every day from preventable disease, public health officials worldwide, drug company researchers (who, I am sure, are the very incubi every anti-vax loudmouth takes them to be)...is it remotely rational to think that these groups, adding up literally to hundreds of thousands of people, are involved in a huge conspiracy to bilk you out of money at risk to your child just for drug companies?

Or, does it make more sense that two people with a clearly demonstrated self interest that, while always fiscal now goes well beyond, might be capable of interacting (with a significant boost from a gullible and desperate news media) to produce one of the greatest sleights of hand ever to threaten global public health? Oh, and by the way, they're planning to join forces and wreak some more of their magic on parents willing to pay for it. Will it be your pocket that they empty? I only hope that the research money that's been funneled into studies based on that tissue of lies can now be targeted to real research based on real hypotheses. Meanwhile, please. Read. And think, too.

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While you're reading and thinking, please go read what Shannon (a.k.a. Squid) has written in What Are You Thinking? Part II: On Autism and Vaccines, contrasting the verbal approaches of Alison Singer of the Autism Science Foundation and J.B. Handley of Age of Autism. The attitudes and words are striking in contrast. Also, please check out her initial post in that pair, What Are You Thinking?, in which she urges readers to do what we all should do: Be skeptical.

Wednesday, May 19, 2010

Seasons and rhythms

When we began homeschooling, TH and I also began sticking to a pretty good exercise program that consists mainly of walking almost every day a three-mile loop on a central-city hike-and-bike trail. This trail skirts what some people call our local "jewel," a lake created by the damming of the Colorado River. Even though it's urban, much of it remains wild, and TH and I have enjoyed watching the seasons (such as they are) change on an almost daily basis from January to almost the end of May.

We've seen a lot. When we began, the trees were bare except for overwintering loons lingering on their branches. Skies were often grey, and other wintering waterfowl didn't hesitate to home in on us from all over the lake when we stood on the banks making our offerings of bread. Turtles were scarce, and the swans, majestic and slow, were childless.

Spring came, with a fall of catkins from the oaks, startlingly green baby leaves bursting out, butterflies suddenly everywhere, and a shaggy carpeting of every kind of wildflower Texas has to offer. We noticed, one week in mid-spring, that a huge agave--it must be 25 years old, at least--was putting out an ever-lengthening stalk. For weeks, as we rounded a certain turn in the trail, we watched for the sight of this stalk, measuring its length, monitoring as it stretched for the skies. And then, just last week, after reaching a height of about 20 feet, it suddenly started to put out lateral branches. And then, those branches budded. I think we're lucky enough to have witnessed, unfolding over many weeks, an agave engaging in a rare manifestation of flowering. And it's been lovely.

As spring grew warmer, the turtles emerged again. Usually, they're just standard-issue sliders and river cooters. But one day, we saw not one, but two snapping turtles. Large ones. Then, as the days went by and we saw them again and again, we noticed that one of the elderly turtles--their size indicated an advanced age--had a cataract or something obscuring one of his eyes with an opaque blue. We monitored him, along with some juvenile snappers that also had suddenly turned up at the bread-feeding bank where we always stop to feed whatever animals are there. Except grackles. We hate grackles.

And there was that one day, just the one, when the waters near our banks simply boiled with the activity of thousands of huge fish, just suddenly turned up, churning in the shallows. They were all about two feet long, sliding and spinning around one another. We were amazed and couldn't wait to come back the next day to see more of them. But the next day...they had vanished. We've never seen them again.

The trail these last few days is almost a moving, prickly blanket of caterpillars. We mourn the hapless insect juveniles who've been crushed by bikes and feet and dogs and strollers, and we celebrate the ones that hustle across the trail, achieving whatever their caterpillar goal is on the other side. Occasionally, they poop, which is indeed thrilling.

The swans now glide over the lake with four babies in tow. And life continues on with these seasons, even as, sometimes, it ends, as with the caterpillars. And with the old, large snapping turtle with the opaque blue eye. Today, we found him on the banks of the lake, dead. I don't know why he died. There was no sign of trauma, no indication that a person had done it. Maybe he was just old, maybe the fact that we were seeing him so close to the bank was an indicator that he was not altogether healthy.

TH, seeing the dead turtle, felt a compulsion to hold an impromptu celebration of the turtle's life, right there. He praised the turtle and its long life and hoped that it was now doing well in turtle heaven where, TH suggested, there would be no end to "turtle food resources." He tossed some plant debris into the water near him as a final gesture of respect, and then we walked on, continuing our observations of the rhythms and changes, the lives and deaths, the passing of the seasons...with a fairly continuous background narration on every minutiae imaginable having to do with extinct reptiles and Pokemon cards.

Friday, May 14, 2010

Would your child like what they read on your blog?

I did a reading yesterday of my essay from Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum. The venue was our local library, and while many in the audience were family and friends, there were also a few attendees who were not in those categories. TH was there but in another room, doing his schoolwork.

The reading went nicely, although I was surprised to see much of the audience in tears. I was worried that I would be the one struggling with the emotion, but I hit only a couple of bumps with it, which I managed pretty well with a short pause. Let's just say, though, that in the audience, tissues were being passed. It's weird to see the power of words, especially my own words, have that effect. Of course, many of them know TH and know him well, so that was a big influence and facilitated the waterworks.

After the reading, I did a little Q&A session, and one of the non-family/friend attendees asked me what I think is a significant and important question: What would TH think about all the things I say and write about him?

This question was not that hard for me to answer because I've thought about it a lot. TH knows that I write about him and that the reading yesterday focused on an essay that was, essentially, all about him. In fact, he knows what the essay says because he's heard me practicing it, and I've told him that it is, above all, a love letter to him. He's aware of my blog. In fact, he's often sitting right next to me as I write posts, ostensibly doing schoolwork. I think that because we're so open about everything in our family, there's not a feeling of needing to hide lights under a bushel in what I write. It's hard to express just how very open we are around here about our SIFOs (standard-issue family oddities), but let's just say we wear them as freely and as naturally as our eye color.

That's not to say, as I explained yesterday, that I bare all wounds. I don't tell everything here about TH or his brothers. There are some things that, when they're older, they'd probably not be pleased to learn were broadcast to their mother's (small) reading audience. As with any family, we have certain experiences that best remain in the family circle.

But, as I also explained yesterday, the blogging and the writing serve a number of purposes, all of which I consider to be beneficial to TH, either directly or indirectly. For me, his mother, it's first and foremost a catharsis. I start writing these things in my head, and if I can't tap-tap them out on a keyboard, my brain just keeps writing them, over and over. They must emerge somewhere. So, yes, I am a compulsive writer, but I do have a filter, and I think it's very sensitive to what absolutely cannot be discussed in a public forum. And I don't know if anyone's ever noticed it, but there's a reason my husband is only "The Viking" and that I rarely mention anything personal about this extraordinarily private man.

And as important as my own catharsis is the fact that other parents and autistic people read what I write and comment. They give me ideas, suggestions, support, and advice. I think that without this world of people who get it even if their experiences differ in substance, I'd've felt unmoored and alone through some of our darker moments with autism or just with parenting in general. That wouldn't have been good for us or for our children.

Finally, it's a chronicle that I hope my children will read someday when they're interested in doing so. They'll find here an honest recounting, done in real time, of some of the events--highs and lows--of their childhood. They'll find that out there in that virtual world, there was (still will be?) a host of people who took the time to come by their mother's blog and read about them. Learn about them. Care about them. Sympathize and celebrate with them. And I hope that when TH and Dubya and Little reach that point, they come away with the conviction that everything here was done with honesty, truth, and love, all woven through with respect for them as individuals.

So, I turn my audience member's question to you, parent bloggers. Do you think that your children will someday read what you've written about them? And how do you think they will feel about it?

Monday, May 10, 2010

A unique child with special needs

After a few phone calls and some gentle reminders that seven weeks is longer than four to six weeks, we got Dubya's neuropsych report back. Given the time and expenditure, I have to say that there's not a whole lot there that's any kind of shocking payoff to us. His alphabet soup of diagnoses is ADHD, OCD, and "provisional" Aspergers. The report says that he's "highly gifted" and that it's likely that this high level of intelligence confounds any other diagnosis.

Should we infer from this that highly gifted people are, simply put, weird? So weird that they might seem OCD or ADHD or autistic, but it's really just their giftedness? The show "Parenthood" recently had an episode in which parents confounded giftedness and autism, with the child ultimately being "diagnosed" as gifted, not autistic. Relief and intrafamilial awkwardness ensued, and this and the implied dichotomy annoyed me. Based on our oldest child, clearly evaluated as both, I'm assuming a child can carry them simultaneously, in addition to being one or the other. In fact, aren't we all, in the end, a seamless symphony of traits like this?

What do we do with this information? I asked myself as I read the report, "Does this help us at all?" And there are a couple of things in there that are helping us coalesce our next steps for our son. First, there is the question of whether or not his attentional and impulsive behavior problems require medication. As it turns out, I just finished editing a monograph on ADHD from which I learned that the sole longitudinal study of medication and therapy approaches found that after about eight years, there's no difference in outcomes based on approach. No. Difference.

That says to me that the decision about medication must rely on whether or not the risks and tradeoffs of it are worth whatever benefits we derive in the short term. Dubya scored very low on self esteem, again not a huge surprise. The neuropsychologist suggested that because these feelings likely stem from his being constantly corrected, especially at school, drugs might help ameliorate it by reducing his impulsive behaviors. But, the report also noted that given his "complex" array of differences, any choice to medicate must accompany close watchfulness. That OCD, those tics? His anxiety, duly noted in the findings? Not something to fool around with.

My take-home from this report was this summary statement: "Dubya is a very unique child with special needs." The neuropsych also noted that while our son is in a "great" public school, they may be unable to meet his needs. My translation of all of this is, It's time to homeschool Dubya, too.

What do we do with a diagnosis of "provisional" Aspergers? I don't think we're going to do anything. I'm not really interested in pursuing it further one way or the other. We're not collecting autism diagnoses around here, we're just trying to determine with some cold hard numbers what makes our complex middle son tick. And maybe, what makes him tic, too. We've got 10 pages of cold hard numbers now, and I'm already looking at this complicated little boy with new eyes.

In fact, for some reason, those magic words "highly gifted" have helped me set aside some of my intense anxieties about him and led me (foolishly, no doubt) to craft some pretty mighty castle-like structures in the air, all with a big fat "W" on the ramparts. And possibly with "MIT," rampant on a field of maroon, as his standard. My thoughts have often flown to MIT, but previously for other reasons. One of our children (ahem, TH) has a habit of putting on white athletic socks pulled to their fullest extent about two-thirds up the calf. He wears this with large, dark Merrill mocs. I, the mother, have a habit of calling these his "MIT socks." Dubya has never styled his socks in this way, but now, thanks to this glowing report of his active little mind, I've taken to calling him "MIT" and am fighting an urge to move to Massachusetts for exploratory purposes. Yes, even Spocks dream.

And dream. We all sat around last week on our Friday night "movie night," entranced by David Attenborough's Life in Cold Blood (the DVD set was a birthday present for TH), and I fielded questions from Dubya and TH and Little that were insightful and sometimes a tad awkward (e.g., "What's a sperm sac?"). As I looked over my engaged and rapt offspring, unable to take their eyes off of the breathless saga of insect reproduction, I realized that regardless of the letters or the labels, there's one thing that's clear about every single one of us, something that, in my eyes, makes my children some of the most wonderful people I know. In the immortal words of one of my favorite bloggers and women, Shannon Rosa, "We're here, we're quirky, get used to it." I think that with this report, with data and facts and the new, softly glowing light now figuratively shining on my middle son, I might just be able to get used to this whole "bright, quirky child" thing. And understand him better, too.