My middle child is a sweet child

A story my middle son wrote, inspired by the image of a snowflake:

On a snowy winter day, there was a little log cabin with a fence around it and some logs and a snowman in the yard. Some kids next door were having a snowball fight. And one of the snowballs hit the window of the little cabin. A man stepped out. He was a kind man, known as Mr. Clack. He kindly said, "May you please watch your snowballs?" The children said, "Yes, sir!"

But as the years went by, the man aged older and older, and finally, he died! Everyone he helped--which was pretty much every one he ever saw--was there. But the man never truly died because part of him still lay in everyone.

THE END

He's a sweetie, that complicated middle child of mine. Clearly, he's inherited that from his father, the rarely seen, elusive "Sweetie Viking."

Decemberists' new album: buy it

Music is a matter of personal taste, I know. And this one really suits my personal tastes: The Decemberists' new release, The King Is Dead. I've already listened to this so much that my pores are probably blasting it right back out at this point.

Of interest to many readers here, lead singer Colin Meloy has a son, Henry (Hank) Meloy, who has autism. And if you drop track 3, "Rise to Me," on whatever you use to play music these days, you'll find much in this song to breach your defenses if you're an autism parent. Maybe it breaches the defenses of parents of neurotypical children, but I've never been one of those, so I wouldn't know. Meloy has described writing this song about his son and his and his wife's challenges as autism parents. God, but it is beautiful.

I'd launch into music critic territory at this point, waxing on tracks about the brute work of granite miners as a metaphor for life's drudgery or waning about how I now can't get "the old main drag" refrain unwedged from its tracks in my brain, but...just listen for yourself. Like I said, music--what you like, what you hate--is a matter of personal taste. And in this case, it's very, very personal.

Mitochondria and autism: the behemoth review

Some of you may have seen yesterday's report of a paper addressing links between mitochondrial disorder and autism. I've parsed that review here, so feel free to take a look. I'm interested in people's personal experiences with some of what the authors found.

What defines good communication skills?

I was talking with my insightful brother last night about social communication and David Brooks' piece in which Brooks asserts that "mastering" social skills is at the essence of achievement. In a blog post, I took issue with Brooks' blanket assertion, arguing--perhaps not with the best communication skills--that not everyone defines achievement, skills, or even communication in the same way. As my brother and I discussed it, I mentioned that I'd been wondering since then about different communication milieus and how a certain kind of communicator can be perfectly effective in one group but an abject failure in another. My brother offered that what it comes down to is being an effective social tactician within one's specific milieu. That, he suggested might be the real core of what many agree is achievement.

Bright young man, is he not?

He encapsulates what I had been turning over in my brain since reading Brooks' piece. What works as social communication with one group or type or sort of people can be a failure in another. As an example, take scientists. From my experience, they're a direct bunch, taking down one's statements if they detect a flaw or weakness, bluntly critiquing, whether it's the paper you're submitting for peer review or your assertion over a fifth beer that REM's newer work is favorably comparable to their early albums.

Take that kind of communication into another scenario I know pretty well--elementary school teachers--and you know what? It's not a great fit. Not at all. The set of skills required to do well among most elementary school teachers differs considerably from the communication skills that gain you an ear--and respect and acceptance--among a group of scientists.

In other words, social communication is not a one-size-fits-all kind of thing. And one would have to be a true social chameleon to transfer their own particular suite of skills and tactics from one circle to another. One would need to be a politician to pull that off, a good one, or be someone like my brother, one of the most socially capable people I know. Having left a trail of nonplussed people in my wake through a lifetime of encounters in which my flat affect and low voice belied my perfectly well-intended social interactions, I can say that I will never be that social chameleon. And that's OK. I'm a scientist. I can just study chameleons instead and then speak bluntly and without preamble to other scientists about them. In terms of extrinsic achievement, the world would view my brother the social adept and me as equals, in spite of our differing abilities as tacticians.

My children's therapists have often referenced circles of communication, indicating that a circle closes when a child reciprocates a social overture, but those have always seemed more like two-way communication highways to me. Perhaps to distinguish, what I'm talking about here are communication circles in which the skills required to be successful--to achieve--can vary, even though the circles may overlap like a Venn diagram. A truly apt communicator within one's best-fit circle is the tactician of which my brother spoke, and an accountant's circle may be one that scarcely brushes against that of, say, a stage actress.

That's not to assert that we don't have to try to communicate within other circles. We do. But you may have noticed that as you moved from childhood to adulthood, your circle became a much more self-selected entity, one you guide to some extent, rather than a construct of the Fates. How many of you find, in review, that your self-selection is based in large part on a reciprocal recognition of kindred communication spirits? In its way, it is a reverse form of natural selection: if you're lucky, you find the environment that's best fit for your adaptations.

This observation may be something that communication experts have long known, but I've not seen it discussed anywhere. I'm curious to know from therapists or other knowledgeable ones who read here what the literature has to say on this idea.

I've written here before about how TH, in spite of his clear deficits in "typical" communication, seems to find his own kind, others from "France," as we call it (lifted from the lovely Susan Etlinger and her apt lexicon), and communicate just fine with them. In his social skills classes, the children hail each other as though recognizing and rejoicing in those ineffable signals that yes, they each belong there, understood. When I was young, I was completely inept among a bunch of 14-year-old rich girls in a dormitory, but I did great at a summer camp with other girls who loved to ride horses, wander around outside looking for snakes, and sleep under the stars as I did. Well, some of the other girls. In other words, we found our kindred spirits, we understood one another's communication beautifully, and we connected because of a million little spoken and unspoken tokens of commonality.

A study has just come out indicating an interesting--but not firm--association between people who share similar mutations in specific genes. The results, the media have blared, suggest that birds of a feather flock together, although for some critics, the study doesn't stand up to much parsing. Whether those results eventually lead to other, less-equivocal findings, I think the hypothesis itself remains worth considering. Birds of a feather do seem to flock best together, and the question remains: Why?

Speaking of wild animals, Amy Chua's Tiger Mother approach has been dissected to death. I've noted here that my own parenting efforts are more along the lines of "extremely not extreme" (or, as my sister-in-law put it last night, I'm a "Panda Mom." My sister-in-law is also a smarty pants, like her husband). Chua's efforts to control her children will ultimately fail for any number of reasons. But whatever time she should have allowed for enhancing their social communication would likely have succeeded or failed based more on each daughter's intrinsic affinities than some ultimate goal of "achievement." Like so many of us, from Trekkies to Trappists, her daughters will find their communication circles. I'm not entirely sure how much attending slumber parties would ultimately have helped them, except possibly as a process of exclusion.

And I still think Brooks has it wrong. Mastering social communication in a general way, as my brother seems to have done, is not necessarily at the "very essence of achievement." I think certainly an aspect of achievement may be finding and joining the communication circle in which you best belong and doing your best within it. I probably was articulating something like that when I reminded myself that I should rarely get off the boat, the place where I'm most comfortable, most effective, and best understood. The place where, as my brother put it so well, I'm at my most able as a social tactician.

Are you an extreme parent? I think I'm just extremely lazy

I came across this article this morning courtesy of a tweet from PKIDs (if you haven't visited them, helped them out, please do): Are you an extreme parent? It's a good question, and I bet it's one that autism parents ask themselves a lot. How much is too much? When it comes to parenting, especially parenting a special needs child, when do you let go, how do you know the When has come? When do you let your not-so-good-at-free-ranging child go free range?

The primary reason I'm not an extreme parent is that I'm too lazy. For me, "When" has arrived when I'm still lying in bed and one of my children can't find their underpants. I make them find their underpants, rationalizing that it's helping them to be more independent, more able...but the reality is that I just don't want to get out of bed and find those tiny, Batman underpants myself. Dammit.

Same thing applies in most other situations. My children can climb down from almost anything by themselves because I'm too lazy to help them climb down myself. They can get their own cereal, flatware, napkins, placemats, and milk because you know what? I can't do everything around here, and if you get hungry enough, you learn pretty quickly where the flatware drawer is. My youngest was an expert food forager by the time he was two, thanks to my laziness--er, fantastic parenting skilz--and I think he could now, at age 4, survive in a forest alone for at least a week.

The article lists a few examples of extreme parenting. You might recognize that you're an extreme parent if you do your child's math problems for them. Hmmm. What if instead, every single day you rewrite and re-review your child's math mnemonics and walk through one problem before cutting him loose to complete four more on his own? Does that count as extreme?

If you take a trip to school to deliver your child's forgotten homework, you might be an extreme parent. Well, I homeschool one of my children--I guess that's the extremest of the extreme right there--but what about the maneuver I pulled yesterday? My youngest had "Pajama Day" at school. We hate those around here because our kids think that pajamas are for wearing at home, in bed. One does not wear pajamas at school, and any suggestion to do so is, simply, bizarre and the fruit of the mind of irrational people who think pajamas are fun. So...my youngest went to school in pajamas...to the door of his classroom. At which point he had a conniption fit and a meltdown, and his teacher literally had to peel his tiny little four-year-old hands off of me so I could leave. All because of wearing pajamas in the wrong place, at the wrong time. So what did I do? I dropped off some other clothes for him. Yep. Extreme.

Amy Chua is likely the most prominent current example of extreme parenting, and I'd like to offer myself up as a much lower-profile, counter example of extremely not extreme parenting. I let my children run around my yard with sticks. They fall off of everything, every day, sometimes just flopping over while standing on the floor. Yesterday, one of them dropped an entire roll of toilet paper in the toilet within 5 minutes of arriving home from school. A day does not go by that someone doesn't draw blood somewhere, and we're single-handedly keeping Band-Aid and the people who make hydrogen peroxide in business. We've knocked out half-teeth, sustained hematomas the size of ostrich eggs, sliced gums, and fallen out of trees, and only yesterday, my oldest stepped on a bona fide rusty nail.

Yes, he is up-to-date on his vaccines.

Yet, I'm with these people 24 hours a day, seven days a week. I know their every move, I can predict their thoughts and responses (I saw that Pajama Day meltdown coming from days away, but hey...we tried), and I know what truly hurts them and what truly makes them happy. In spite of my boasting about being lazy, I do purposely arrange untethered experiments in independence, sending TH across the store for a forgotten grocery item (sometimes successful, oftentimes not), cutting them loose to find and explore on their own within reasonable bounds. Leaving them to navigate their way through occasionally dangerous territory in which the possibility of minor injury might be high but serious injury is highly unlikely.

All of these incremental freedoms are the product of an impenetrable maternal calculus that I practice every moment of every day. We all probably do it, so what makes the outcome of the equation so different for some? Why do some of us reach extreme decisions while others release our children to go forth and...step on nails?

The article describes parenting perspectives as falling into two basic categories. Either you're someone who sees your child as fully in your control and fully a reflection of you, a vessel that you fill or, you're someone who's guiding another complete, separate individual, trying to light a path without having them at the end of a leash at all times (that, my friends, was a whopper of a mixed metaphor. If you teach writing, feel free to use it as an example). I learned from the birth of my first child that the word "control" and the word "child" do not mix. That's a person there, not a car.

Folks who read the article may be asking themselves if they are extreme parents. Those who read this may be asking themselves if their parenting just comes down to sheer laziness, as mine seems to. But what about you as Guide? What do you do that guides--rather than controls--your children? If you have a special needs child, how does that change your perception about "extreme" versus "guiding"? Do special needs parents almost have to be extreme sometimes?

Tiger mothers and David Brooks: Are social skills the "essence of achievement"?

David Brooks writes today in the New York Times about Amy Chua and her tome on parenting the "Chinese way." While many people have taken issue with her hard core, cold-ass, mean parenting practices, Brooks sees her parenting as soft on one thing: social skills. Sure, he says, it's one thing to sit at a piano for four solid hours, banging away repeatedly at the same five measures, seeking perfection. It's another thing entirely to negotiate, for example, a slumber party with a lot of 14-year-old girls. Chua, it seems, did not let her children do that sort of silly thing.

Even though I am (probably bluntly) honest with my children and give them straightforward critiques of their efforts, I obviously do not agree with Chua's extreme parenting tactics. I want to know my children, I want them to trust me to be honest but fair with them, to know my unconditional love for them--not to be their bestest ever friend, but to be someone in whom they can believe and turn to with trust. Brutalizing their psyches for the sake of extrinsic success is not the way to achieve that.

I knew, quite well, a girl whose Chinese parents drove her in this way, scarcely ever letting her out of the house for social interaction, having her practice SAT problems all through lunch when she didn't "perform" well enough on the test, having to wear a block on her teeth at night because she ground them so much from stress. Stress is an ugly thing that wears out the body and soul, and that young woman was one of the most stressed people I knew, weighed down on the inside as heavily as she was on the outside by her ever full pair of bookbags.

But she also attended school, engaged with people at all of our local piano competitions--in which I also participated--was involved in several extracurricular activities (likely for the purposes of college applications less than for the fun of it), and you know what? In spite of never attending a slumber party and rarely being able to go to a movie, she did just swell socially. She was quiet, but she was sharp, and her interactions were absolutely fine. She was certainly not the "odd one" in our school.

In what seems to me like a gambit to shock more than anything else, Brooks accuses Chua of being soft on her kids by not forcing them to socialize with other children, and he cites studies suggesting that recognizing social cues is strongly associated with one's success in life. I'm assuming Chua's children encountered other people in their travels through their mother's experiment in parenting. You don't participate in music competitions or math competitions or hard-core school activities without engaging with other people, probably the other smartest people in the room. You don't develop the poise to perform at Carnegie Hall at age 14 by being socially inept.

In addition to suggesting that Brooks may have overlooked the intense socialization that occurs in the situations of these girls' lives, I submit that these studies Brooks cites are irrelevant if your tendency to social skills is on the red side of the balance sheet. Plenty of us out there have experienced some form of what Chua--and Brooks--describe. And there are plenty of us for whom the most in-depth socialization experiences are ineffectual. I lived in a girls' dormitory at a boarding school my freshman year in high school, when I was 13. Being neck deep in the 24-7 social skills development of one long, tortuous slumber party didn't do a damned thing for me, and it didn't make me any more or less a team player. Some of us who are inclined to formal learning and isolation are rather impervious to immersion in social skills practice, it would seem.

Chua's children may not have spent a lot of time at slumber parties, but they've been around people. If they've got a native tendency to understand human interaction, they're doing just fine, thanks. If they don't, then attending a slumber party every week wouldn't have done them any good. The world of competition is an insular place where everyone who's anyone knows the other anyones. Schools require all manner of project development within a team these days, working in pairs, in groups. These girls haven't done well in school in a vacuum--there's been some kind of yardstick against which they were measured--besides their mother's--and that yardstick was other people. I submit that not having attended slumber parties does not somehow negate their exposure to social experience, and when it comes to social skills, you've either got it--or you don't. That friend of mine from 25 years back? She's a highly respected MD researcher at a top medical school. Her siblings are similarly successful.

Brooks asserts that mastering social skills is the "very essence of achievement." I take issue with that assertion, and not only because I can conjure in my mind a lengthy list of fairly socially inept people who have done quite well by most standards of what "achievement" is. I also take issue with it because it negates the potential of a large group of people--not only autistic people whose very descriptive implies social deficits--but also any of us who succeed on our own, without this "essence of achievement." The world would be empty of PhDs, especially in the sciences, if social skills were the very essence of achievement.

We can achieve, thank you, even if we, as Brooks puts it, lack "the ability to trust people outside your kinship circle, read intonations and moods, understand how the psychological pieces each person brings to the room can and cannot fit together." There are many of us out there who duck the team interaction, work alone, like it alone, and succeed alone. We are successful, and we are legion--at least in the natural sciences.

Why do autistic people do stims and self regs?

As I was making the Web rounds, reading about oxytocin, I came across a February 2010 interview in Newsweek with Eric Hollander, director of the compulsive, impulsive, and autism spectrum disorders program at the Montefiore Medical Center in New York. A lot of it involves linking autism to neuroimaging and oxytocin study findings, but one part of it in particular gave me pause. I need pause, so I didn't take that personally, but what it said made me kind of nuts, and I do not need more of that.

In the interview, which I'm sure I read at the time and have forgotten, Hollander says:

There is a group of behaviors that are self-stimulatory. When patients with autism are bored, they start to do things like hand-flapping or rocking back and forth to get up to their optimal level of stimulation. You actually see this in other species if you restrict input of sensory signals—if you put a tiger in a small cage, for instance, it will start to pace back and forth.

When I read that "bored" association, I think I said, "WTF" out loud, alone, to my computer. Why? Because I've never really had the impression that autistic people stim solely out of boredom. From our personal observations, the stims and self-regs show up in moments of anxiety or excitement, not in moments of boredom. I'm not saying that boredom might not be a trigger--sure, OK--but to give it this unequivocally? I'm curious to hear from autistic people about their reasons for stims and self-regs.

I know what TH would say, because he's explained it before. In a post of my interview with him, he explains that he does these things to "get his energy out" when he's "excited." And I know from 9+ years of living with him that he also does these things when facing--and diffusing--anxiety. Honestly, I don't really know what TH does when he's bored because he never seems to be bored.

What further confused me was this comparison to a sensory-deprived tiger. I've always thought that these behaviors were as associated with too much sensory input as with too little. Our son, for example, will fill any silence with his vocalizations and echolalia, I think to quell the noises in his own head, but he also ramps up his behaviors when the stimulation is overwhelming. Indeed, he's more likely to rock because of anxiety or too much aural input than under any other conditions.

Anyone reading this interview--either what Hollander says or Newsweek's "translations" of what he says--will likely find a lot to bother them, depending on perspective. You may find yourself shaking your head, talking to your computer, taking issue with terms like "illness" and "patients" and comparisons to "other species." It must be odd to be discussed so clinically and distantly, and I'm interested also in responses of readers to these aspects of the interview. But mostly, I'd like to know: Why do you--or your child--stim and self reg?

Never get out of the boat

Just a few blog posts ago, I was doing a bit of boasting about how I take my social skills out for exercise to try to work them out, like a muscle, even if I'm not that crazy about the exercise. You know what? These things are so out of shape, so atrophied, I don't think there's a workout left in them.

I just returned from a conference. I haven't been this excited about a conference in years. My previous conference experiences were scientific conferences in which one ran from room to room, listened intently or just tried to stay awake, depending on speaker and content, took notes or doodled, depending on ditto, came up with sparky new ideas for hypotheses and research, and drank beer in the evenings. Usually, there were others there as super-freaky-geeky as you, as engaged in your field's esoterica as you, allowing you the rare indulgence of sitting around in the evening, parsing the finer points of the various types of estrogen receptor.

Those were OK. But this science-writing conference was one that I was geeked out excited to attend, in part because there were actual authors of actual books I'd actually read and actually enjoyed a whole hell of a lot, and I just wanted to see them, see what these people who write real, cool science books look like and act like. And I hoped, as someone who writes about science not because I want to be a science writer rockstar but because I compulsively must write and am compulsively a scientist--I hoped I'd meet others of my kind, that maybe we'd herd together and geek out perhaps on the finer points of explaining the Krebs cycle without sending our readers into a coma.

That's not exactly what happened. Yes, I geeked. For the first time in my entire life, I approached two complete strangers whose work I just loved and, in my own way, gushed. That translated into an introduction (Hi, I'm Emily) and a comment: "I loved your work." The End. But it was cool to be able to do that.

And then, I wandered, especially during the social times, glass of wine in hand, trying to become a part of a conversation here, learn something new there. But I just couldn't get my social skills mojo up, and went from feeling hopeful in those first hours to feeling completely inept by the end. It was quite a roller coaster in many ways, from finding a couple of people who had big, brash, beautiful personalities and who spoke brashly and bigly about Things That Matter but that many people don't address. Loved meeting them, listening to them. Then there was the student on the bus who was clearly not happy to have ended up with my book in the book grab--brown-paper-wrapped books each attendee just blindly received--and made that pretty obvious to me. I understood, rationally--he's at the end of a four-year science degree and doesn't need a college biology book--but at the same time, of course, I wanted to crawl under the nearest table and hide the rest of the evening.

After contemplating my utter social failure--I'm talking about approaching people, engaging or initiating a conversation, and then seeing their backs within seconds--I realized the one thing that was lacking here for me (besides youth) compared to my previous forays into loud, buzzing, busy, crowded, overwhelming interactions with strangers: Alcohol. Back in the day, that social lubricant probably served two purposes: (1) I could barge in on any conversation and put myself in it, thanks to the suppression of my usual reluctance to do that sort of thing, and (2) if I pissed someone off by doing so, the alcohol probably suppressed my ability to recognize that.

Now...I drink a glass of wine or have a beer and instead get these two things: (1) I may as well have taken a Quaalude, given the level of overwhelming tiredness that overtakes me, and (2) my ability to speak or speak fluidly or remember words is compromised even as my ability to grasp an unwelcome reception remains intact.

I learned things at this conference in the (very overcrowded) meeting rooms from the personable, smart, knowledgeable people who spoke. But I also learned--or reaffirmed or re-realized--where my place is, where I need to stay, where I belong. As I embarked on my 12-hour trip home--flight cancelled, four hour delay of my arrival (thanks, Delta!)--a mantra got stuck in my head, courtesy of one of my favorite movies, and it's one I think I'll harken to more faithfully from now on: "Never get out of the boat. Absolutely goddamned right."

The sib-spacing and autism study: two commentaries

Once again, there's a choice!

I've got a layperson-ish version up over at BlogHer and a similar but sciencier version over at The Biology Files. Before you're overwhelmed with guilt or feeling blamed, as the first couple of commenters at BlogHer were, please read the last paragraph. Happy reading.

Is it OK to grieve when your child or you receives an autism diagnosis?

Is it OK to grieve when your child or you receives an autism diagnosis? It's a question that for many parents has kind of a "duh" answer but that for some who are autistic resonates with a sense of implied failure on their parts for not being the people their parents--or society--wanted them to be. In our own family, I didn't do a ton of grieving because I saw it coming, while the Viking grieved considerably in those early months. Even now, six years later, we still experience moments of sadness when we see certain aspects of how society perceives our son and feel that they may never change. Our grief in those moments isn't as much about his autism as it is about how the world sees his autism.

The fact is, all forms of grief are acceptable. Pain is relative, intertwined irrevocably with emotion and context. Some parents grieve over the fact that their child doesn't make a college football team, for God's sake, so why wouldn't anyone give parents the room to grieve for what they thought--hoped, dreamed--might be as they adjust to what is? For some parents, like us, our autistic child can, in some way, share our struggles with awareness. But for other parents, all of the awareness of the struggle lies directly on their shoulders, and a burden like that is going to bring some sadness.

Dreams are funny things, and they don't get any stranger than the ones parents can build around their children. Before a child is born, imagination is your playground, the possibilities stretching to the horizon. After you have your child, realizations set in. Those endless horizons start forming limits, the sky lowers, the world closes in. Sometimes, the entire thing crashes to the ground with a diagnosis like autism. Not because the parents now detest their child or resent their child for what he or she is not but because any change that big, that life-determining, requires adjustment. During the process of picking up those pieces and rebuilding a new, unrecognizable world, there will be grief.

Grief is all relative, as is loss, but nonetheless real enough in the experience. TH received unequivocal confirmation before Christmas this year that Santa Claus isn't real. He'd suspected it for quite a long time. We'd never introduced Santa as a real entity to him--pop culture did that for us. Whenever he asked, we'd respond, "What do you think?" because we felt he wasn't quite ready for the answer. When he was ready, or seemed ready, he pressed, and I laid it out. No. Santa is not real.

It took him days to process. He expressed, in his way, his difficulty readjusting his entire belief system, his feelings about Christmas and Christmas Eve and the magic of Christmas. For him, this realization--this reality replacing that magical dream--was an enormous process of change, mentally and emotionally. In the end, he processed it and rebuilt his world, and now our big goal is to keep him from blowing it for every small child he meets.

Santa's just...Santa. But your child? Whether we like it or not, they're our future, and we invest in them, load them with baggage, things we won't do that were done to us, things we will do that weren't done for us, things they'll do that we didn't, things they won't do that we did. It's helpless imagining. I've blogged before about how little I dream on behalf of my children, having determined to take this parenting thing one day at a time. But that doesn't mean that I don't lapse on an hourly basis into some kind of vision of success for my children before I shake it off and face the present again.

Take the average parental hope--happiness, health, long life, some sort of success--just the average, and imagine the day that you're told that your child's chances of at least half of those hopes may be severely compromised because of a developmental difference called autism. You're learning it for the first time. You're not immersed in a blog world full of autism parents with sage advice, warm support, vast experience. You don't know about the active autistic adults out there in the world who might be able to assuage some of your fears. All you know is what the average parent might know. And all you know is that average dream you might have had for your child just vanished in a flash of the realities of development, genetics, environment, and life. For some parents, this moment might be the first true realization of how little control they have over...anything.

And a punch in the gut like that--one that won't go away, won't resolve easily or at all, requires massive changes in outlook, how the family spends its time, future plans for school, love, work, life--that kind of change requires a grieving process. And like any grief, yes, it will dissipate over time. Like any grief, it doesn't efface the deep, real love a parent feels for a child. And, like any grief, it can pop back up again, punch you in the gut again as you watch your autistic child struggle in ways that the child may not understand entirely, but that you do. You carry the burden of that autism because you are the parent. While there are many joys with an autistic child--as with any child--there are also those moments of grief that ambush your emotions. That doesn't mean that autistic people are horrible or tragic. It just means that parenting is hard, scary, unpredictable, and deeply emotional.

Feeling grief about an enormous change like having your child diagnosed with a developmental difference does not imply any stance one way or the other about that difference. It means you have dreams, plans, hopes for your child, and that you're reprocessing and modifying them. It means you're human. It means you're a parent.

There were two other non-retracting authors on the Wakefield MMR paper. Where are they now?

[A note to say that I've joined a science blogging network, Field of Science--woohoo!--and have also posted this on my blog for that network, The Biology Files. Click on over for all two posts that are currently available.]

A question that keeps rising to the surface as I read Andrew Wakefield's name over and over again since yesterday's revelation of a scathing indictment of him in BMJ is, "What happened to those other two authors who DID NOT join in the retraction of the original Lancet paper linking MMR and autism?" Peter Harvey and John Linnell were the other two authors, one actively declining to retract, the other simply gone AWOL.

Of course, we have initially their own words, joined with Wakefield's now apparent lies, published in the Lancet as a response to the retraction. There also is Peter Harvey's 2004 letter to the Lancet just preceding the retraction, in which he wrote (ironically, in retrospect):

"Much is made of the epidemiological studies that have failed to show an association between MMR and autism. However, these studies are open to serious criticism."

Harvey then writes:

I examined the original cohort of children, and they had no physical neurological abnormalities. I have recently seen one of them again. His behaviour is much worse, at times being uncontrollable. He has developed epilepsy and bilateral extensor plantar responses.

From investigative journalist Brian Deer's Website, we find this about Harvey, a tidbit published in The Sunday Times:

Another author, Dr Peter Harvey, a board member of Visceral, a registered charity set up to support Wakefield, spoke out in his defence. Harvey said he did not think the funding was relevant and he would have still have put his name to the study if he had known. "I don't think there was any conflict of interest," he said.

Who is Peter Harvey? Why do we not see his name coupled more with Wakefield's in this debacle, as he asserts above that he was involved in examining the children and states here, in this letter, for the record, that they "had no physical neurological abnormalities"? Why is this self-decribed "adult neurologist" examining children for a study in the first place? His moral compass for conflicts of interest, as described in the Times, appears to be on par with Wakefield's.

I've done a Google search on a variety of terms, including Peter Harvey with and without autism, MMR, Brian Deer, General Medical Council, neurologist...and all I find is that Peter Harvey's put his name to a retracted paper and to two letters defending the retracted paper. Yet...his culpability in this "deliberate fraud" must at least be given serious consideration.

That leaves us with John Linnell, the last of the three authors on that debacle of a paper who didn't participate in its retraction. It appears that the reason he didn't participate is that the other 10 authors involved could not find him. I wonder if they looked at the Chelsea & Westminster Hospital in London for him. And unless he's taken to studying carnivores in Norway, his only publications are the MMR-autism-related ones, although his name turns up consistently on biomed-autism/ADHD sites in this form:

Elevated urinary methylmalonic acid and early reports of response to oral B12 from John Linnell, research director at The Children's Medical Charity, U.K. Some reports of response to B12 shots.

This report or whatever it is appears to be quite popular among the DAN! sorts, although it does not appear on PubMed.

Wakefield didn't commit this fraud alone. Ten of his co-authors acknowledged the faults of the original paper and withdrew their names from it. One of his co-authors appears to have vanished, while the other has steadfastly refused to retract and has solidly associated himself with some of the misrepresentations involved in the paper's case histories. Harvey, it seems, has ended up as Wallace to Wakefield's Darwin, except, you know, for the lying and cheating and all that.

Peter Harvey and John Linnell...where are you now?

What does it take for autistic women and girls to "pass"?

There's an interesting comment thread-within-a-thread going on with the NPR/Allen Frances piece I posted a few days ago. The subthread is focused on how autistic women perceive the world and how the world perceives them. I've decided to make it a post-post because what the women who are posting are saying is valuable to anyone who is an autistic woman or girl or to their families and friends.

I myself can relate to much of what they say. A few weeks ago, I confided to a group of autism parents from our church that even sitting there, talking to them, took a great deal of effort on my part as I worked to focus on what not to say, when to keep my mouth shut, when not to ask impertinent questions or spout off with a blunt truth, when to express sympathy (that I really feel) while trying not to be awkward about it, when to make eye contact, when not to make eye contact, when to smile or use my facial muscles for some other emotional expression, when to notice and how to interpret their own expressions, especially when they don't seem to match their words, when to avoid getting distracted by some minuscule feature of their face or clothing so that I can continue to pay attention to their words. Even my brief mention of how hard I was working (I didn't go into the above detail) felt like a misstep to me, and I only said it as an example of how hard our children with autism might be working in a similar situation.

That's not to say that I think I have autism. I'm clearly of the square peg variety in a world full of round holes and was that way as a child. I learned a long time ago to start keeping my catalogue of social algorithms, much like this one, adding to and modifying them based on my observations of "socially able" people. For me, social interaction is not and never has been a natural process, but with my accumulated algorithms, it's become an easier one. That said, after an intense interaction like that group meeting with autism parents at my church, I need some serious downtime to regroup. It's just exhausting.

But women are complicated, are we not? I can walk into a room full of students and teach, no problem. Sure, I'm worn out afterward, but who isn't? I can walk into a party and stand there, alone, no problem, or try to talk to people, no problem. I don't particularly care which one I'm doing. With the latter, I'm working a lot harder, latching onto conversational bits that would make the exchange more interesting, trying not to overtalk or overstare. But I can do it. I'm not shy and never have been. I just like to be alone, and I always have. And even though I can engage in such situations, I'm never entirely sure that I'm "doing it right." Indeed, based on reactions even from friends, perhaps not.

Socializing is, for me, a form of exercise, like taking a run. I have always done it and will continue to do so because it wears out my socializing muscles in the way a 10-mile run might work out one's legs. But the recovery is lengthy, and the mileage I can do is limited. I'm not one of these people who can travel with associates and hang out together 24-7. I have to have my time alone, or the cranky, edgy side of me starts to emerge, like a rumbling volcano. I wonder how many women on the spectrum have similar experiences. I also wonder how many men differ, possibly not being as able as women--or so it has been said--at covering their differences.

I've often noted here and in real life that my children come by their abilities and talents and deficits and quirks honestly. They're fruit of a couple of introverted, loner trees. That's not to say that either of us, the parents, are autistic, but at least we have an understanding in many ways of where our children come from. And since my spouse is male and I'm female, even our understanding and our experiences, while inwardly similar, have manifested outwardly in very, very different ways. Based on what I've been reading, the same applies for autistic people, but because of the presumed male bias in autism, the males have been getting the bulk of the attention and analysis.

Females on the spectrum. Let's hear more about them. Let's read more about them. Let's hear from them, too.