Metamorphosis Can Really Tire You Out

Yesterday’s Pathophilia reviews a group of studies (two by Mark and David Geier) about testosterone levels in autistic children. Pathophilia finds that testoterone is not increased in autistic children.

The Cambridge-based Autism Research Centre is also researching hormones in autistic individuals. The Foetal testosterone Longitudinal Study seeks to find out whether elevated levels of foetal testosterone are associated with a later diagnosis of autism spectrum conditions. The Current hormones Project is looking at whether current hormone levels might also be atypical in autism and Asperger Syndrome. And another project is looking specifically at puberty.

Yes, as you may have guessed, I’ve got puberty—so to speak—on my mind.

Charlie’s 11 (and five months, to be precise) and he has definitely entered this new stage of development. He must have shot up some 3 inches over the summer; no pair of long pants really seems to fit him, and Jim’s trying to figure out the best moment to use the electric shaver. Charlie is in middle school—-6th grade, as he IEP notes—-and he is the youngest student in his class, and the tallest. Growth spurts, growing pains, the whole puberty thing. I tend to read most about autism and special needs and neurological disorders and the like, but lately I’ve been throwing in a lot more reading about adolescence in boys.

The mornings have become chilly and it’s still dark when the alarm goes off. Consequently, getting out from under the cocoon warmth of a big fleece blanket has been less and less easy for Charlie, and more and more jarring. Charlie usually snoozes off on the bus and then has to go through a second wake-up and, some days, he’s fallen asleep at school and just can’t wake up.

My very mundane guess about this is that adolescence, with its physical and so many other changes, is proving to be hard and laborious for Charlie. I’m not surprised—when Charlie was a baby, it seemed always to take some sort of extra effort for him to roll over, sit up, scoot, stand. He was nearing 16 months when he started to walk. Talking—and much else—-started ever so slowly for Charlie.

And it’s looking like his passage through the stages of adolescence will be equally slow, full of one setback after another, and just so hard. I still remember when Charlie was about 15 months in daycare and trying, trying, to get on his feet. He didn’t talk at all then and Jim and I felt both a strange wonder mixed with misgiving to hear a girl who was not yet three speak in paragraphs, it seemed, and every other child run, skip, and hurry around, while Charlie carefully made his way across the floor.

Charlie has been quite aware of his own tiredness. For the past few notes he has, on his own initiative, taken himself to bed just after 8.30pm. He still takes melatonin (he tends to get hyper at night) and he usually does not fall asleep for a half-hour plus. These past two nights, I’ve sensed that he just wants to go lie down with his blankets and Leapsters in bed and, I don’t know, stare at the ceiling. He still tucks his hands behind his head for comfort, just how his hands and arms were when he was born. Saturday and Sunday, we’ve been glad that Charlie has no activities he needs to wake up for, and he sometimes wakes up around 7.30 and then is back to sleep till 11.30.

If you could see what a lean, lanky, leggy “long tall drink of water” as Jim sometimes says, that Charlie is growing into, it doesn’t seem surprising that he would be so fatigued. All that growing seems to be consuming vast amounts of Charlie’s energy. Coupled with the greater demands of being in middle school, it’s been a whole new world.

I have been reading Ovid’s Metamorphoses with my mythology class. Ovid opens his long poem by writing of “forms changed into new bodies“: In story after story about the nymph Daphne turned into the laurel tree, of Echo become only her voice among the rocks and Narcissus a flower, of Philomela turned into the nightingale, Ovid subtly make clear, metamorphosis hurts. Daphne’s skin becomes bark, her hair twigs and leaves, her feet grow down into the ground. All is changed and, it’s hoped, some new beauty is born.

And the growing pains—it’s hoped they rise and fade, and rise and ebb.

Autism Shots

September 17, 2008 by Kristina Chew, PhD  
Filed under Charlisms, Classics, Myth, New Jersey, Vaccines, Work

No, not that kind of shot. I mean “shot” in the sense of taking a photo—a snapshot—of a moment, of something you wanted to remember.

3 autism shots from Tuesday, September 16th, in reverse chronological order.

First shot. Pulling out of the parking lot of Target after the purchase of overly mundane items with a Target card from my sister and making our way through more parking lots to the actual exit of a mega-suburban shopping complex, a car putts, pauses, and zooms by us on the right. I see a wall of white stuffed animals in the back window and two autism magnets like this.

Shot the second. Charlie and I go for a walk down the condo-lined boulevard that we live off of. He’s scrunching up his shirt and running ahead and humming; cooler day; we’re happy. I sight a girl around Charlie’s age, beside a red wagon filled with cups and a plastic pitcher and a sign and a box. I had seen her yesterday when the sign (”LEMONADE”) was set up and I’d seen her in the summer at the condo complex’s pool. Then, I met her mother and found out she’s on the spectrum.

She looks right at Charlie as he hurries happily past. She looks at me.

“Hi,” she says.

“Hi,” I say.

Final autism shot of Tuesday the 16th of September takes place as my mythology class is ending. We’re talking about myth and science in fifth and fourth century BC Greece, and also superstition, and do we see these all today in ourselves? I mention various myths about AIDS and a students says “and there’s this theory that says that vaccines cause autism and all the science says no……”

No, I did not think my student was going to say that—the student and the whole class looked a little surprised when I said, well, I kind of write about that topic a lot.

Maybe more than kind of.

We Go to the Met

April 20, 2008 by Kristina Chew, PhD  
Filed under Art, Classics, Parenting, Travel, Videos, new york

metbalcony.jpg
Charlie and I went to the Metropolitan Museum of Art on Saturday. We had a fabulous time, and that includes the anxious moments, which were expected. It was a brand new experience for Charlie—-the first time he has gone to an art museum and to one that is not a designated children’s museum—and, of course, Jim was still out of town. There was some hollering and the usual looks: We just kept moving on.

(And later, as we waited on the platform for the PATH train near where the WTC once stood, I noted that Charlie’s fingers were red and that he was bending over to pick up a tiny white object: He had just lost a tooth and that must have been bothering him all day.)
metstatusgk.jpg
We got into New York City and walked east to catch the #6 subway (another new thing) and then got off at 77th street (a dog got on). Then to the Met, where I haven’t been in years: We did a rather fast tour of the galleries of Greek, Roman, Egyptian and Near Eastern art, with me pointing out some of the myths, noting that an ancient Greek cuirass looked like it might fit Charlie, and dragging Charlie over to admire the restored interior of a rich Roman’s house. We rode the elevator a few times after Charlie found it and lingered in a gallery of Rodins (Orpheus and Eurydice……Cupid and Psyche) and walked through an exhibit of Jasper Johns. Yes, it was more of a walk-through than a leisurely gallery tour, but Charlie stopped when I called him so I could examine a painting, and he probably would have walked through a few more galleries but I thought it enough for a first visit.

Because I think we’ll be going back.
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The “Subpopulation” of Mitochondrial Autism

April 11, 2008 by Kristina Chew, PhD  
Filed under Health, Myth, Science, Vaccines

From an op-ed in today’s Atlanta Journal-Constitution by neurologist Jon S. Poling, the father of Hannah Poling, with a proposal for more research in the “mitochondrial autism”:

Emerging evidence suggests that mitochondrial dysfunction may not be rare at all among children with autism. In the only population-based study of its kind, Portuguese researchers confirmed that at least 7.2 percent, and perhaps as many as 20 percent, of autistic children exhibit mitochondrial dysfunction. While we do not yet know a precise U.S. rate, 7.2 percent to 20 percent of children does not qualify as “rare.” In fact, mitochondrial dysfunction may be the most common medical condition associated with autism.
……
Although unlikely, if the Portuguese studies are incorrect and mitochondrial dysfunction were found to be a rarity occurring in less than 1 percent of all autism, it would still impact up to 10,000 children (250,000 worldwide), based on current estimates that 1 million people in the U.S. (25 million worldwide) have autism. If, on the other hand, the research showing that 7.2 percent to 20 percent of children with autism have mitochondrial dysfunction is correct, then the implications are both staggering and urgent.

Autism researchers do not currently understand whether mitochondrial dysfunction causes autism or is simply a secondary biological marker. Autism clearly has many different causes, and should really be separated into multiple autism(s). I propose that we clearly identify and research the subpopulation term of “mitochondrial autism,” which is distinguished by its unique biological, but not genetic, markers.

Dr. Poling also calls on the CDC and the American Academy of Pediatrics to reaccess the current schedule of vaccines being given to children, and notes that the government’s concession in the case of his daughter Hannah has opened up a sort of “Pandora’s Box” of questions and concerns about the safety of that current vaccine schedule, and of a causal link to autism.

From a statement issued by the United Mitochondrial Disease Foundation on the connection between mitochondrial disease and autism:

“Recent published reports about the potential links between mitochondrial disorders and autism demonstrate the urgent need for more research into mitochondrial disease, a devastating and often fatal illness.

“Mitochondrial dysfunction has also been implicated in Alzheimer’s Dementia, Parkinson’s disease, Huntington’s disease, heart disease and diabetes.

“Mitochondrial disease is not rare. Researchers estimate that every 15 minutes a child is born with mitochondrial disease or will be diagnosed with mitochondrial disease by the age of 10. Most affected children do not live beyond their teenage years.

While my son Charlie has struggled to talk and communicate and with his academics and behavior, it has never seemed that he had some sort of “fatal illness,” or that he would not make it into his teenage years. We have repeatedly asked Charlie’s pediatric neurologist about the possibility of him having seizures and, so far, Charlie does not seem to have these. Our concern has been about how to help Charlie achieve his full potential into his teenage years and beyond—-because whatever the causes of autism, and whatever questions (or woes, or evils, in keeping with the Greek myth) unleashed by the case of Hannah Poling, there is always hope about what our children can do and learn as they grow up.

Because, in the myth, that’s what is at the bottom of Pandora’s Box: Hope, and hope thanks to our kids themselves.


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