I was speaking last night to the director of the new YAI Autism Center, for which I’ve written two blogs. “Beautifully written,” the good doctor said of them, so naturally I thought he was a pretty sharp guy.

“I’m curious to see how the blog will develop,” he continued. “It seems that often when a center like ours has a blog, it finds itself having to take some stand. I was wondering what your views are?”

Oh. In the whole cause-of-autism thing? Yes.

I have no stand.  I usually answer that better minds than mine are working on this. Premature birth? Vaccines? Phases of the moon? All are good candidates. I’ve read up on the vaccine/mercury versus non-vaccine/mercury debate, most recently in Autism’s False Prophets, and I haven’t settled on either side. I am certain, however, that something’s responsible for Alex still liking “Elmo” and “Dragon Tales” at nearly age 11.

So I dredged what I could recall from Alex’s vaccination schedule from back when Bill Clinton was still president and Godzilla was the hot summer movie, but honestly, when your first baby lives in a plastic box and you must leave him in a hospital night after night and you still have what will be a full year ahead of you of more of the same, the shot slate doesn’t stick in your mind — especially if it’ll be a long time before you realize that slate’s potential importance.

I do know what side I fall on in the debate: on the side of not believing you have a lock on the whole truth, and not on the side of making death threats to those who publicly oppose your views. The unending ability of people in a terrifying situation to fragment, takes your breath away.

The doctor talked to me about the latest research and I agreed it sounded promising, and I assured him that if he stumbled across a cure I’d be one of the first in line. But, last I leaned on the crutch of the Layman Parent Writer:

“My opinion,” I said, ”is that I fear for Alex’s adulthood.” That certainly seemed to be something we agreed on.

***

Visit YAI’s Autism Center Community here.

“Toddler Brain Difference Linked to Autism,” from CNN.

Researchers find first common autism gene, from Reuters.

(Image: taoism.about.com)

Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

I would say I wrote a lot, and probably too much, about Jenny McCarthy in 2008 (and writing less about her, and about the whole vaccine-autism idea, is making its way higher and higher up onto my list of New Year’s resolutions).

Nonetheless, vaccines dominated discussions about autism in March in the wake of announcements about the case of Hannah Poling, whose “pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots” and led to symptoms of autism, as conceded by the U.S. Federal Court of Claims. A lot of debate followed about the Vaccine Court, to the point of general vaccine fixation.

Some mentions of birdsong and fish, and then, in the course of yet again saying it’ not the vaccines, some thoughts about why this is such a personal matter.

Also: Insurance coverage for autism “treatment” was regularly mentioned in 2008 and legislation put forward in many states: For what in particular? For how long?

And: Does your child know that she or he is autistic?

Seems a pity that, on seeing the words “top 10 unfounded health scares,” the first thing I thought about was……….vaccines and autism.

Many speak of a “debate” about an alleged vaccine-autism link and that there’s a “controversy” brewing here, but it’s a false controversy. 2008 saw the publication of more studies refuting a link, and yet there’s been a call for more studies—-among the $1 billion in research initiatives noted in the Strategic Plan of the IACC is an item about the “different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups”—so it’s not as if this particular topic is going to go away.

Sometimes, one starts to wonder, will this particular topic ever go away? How many studies will it take to convince those who believe so very much that there is a link, that there really isn’t one?

Of the 3,393 or so posts I’ve written here, hundreds and hundreds and hundreds have been on vaccines. In the course of writing those posts, and reading about vaccines, about autism, about vaccines and autism, and about what people think about vaccines and autism and about why people think there’s a connection between their child becoming autistic and vaccines, the one thing I’ve mostly been left with is a sense of need—-a sense of needing to know—-of searching for the one answer about why and how this happened—-of needing to do the right thing. In an age when every single step of child rearing, from pre-conception to pregnancy, from labor to birth, from infancy to the first birthday to toddlerhood, from preschool to elementary school to hitting the double digits (10 years old!) to (gasp) adolescence, is not only scrutinized—-is written about in books, magazines, and websites galore, parents seem more and more haunted by the need to get it right.

And when one’s child is disabled, that need seems only to get compounded, as parents (myself included) seek “the best,” or the “most appropriate,” or the “highest quality” services, teachers, therapists, and programs for their child. As much as you know—as I know—that you and I did everything we should and could have done for our child, still that worry nags and lingers, that maybe you and I could have done something different. On the one hand, I’ve gotten pretty good at ignoring stares from strangers; on the other hand, there’s always an unspoken fear that maybe I am doing something wrong; that I’m a bad parent. Why else did those “autism is just another excuse for rotten parenting of rotten kids” remarks by Michael Savage and Denis Leary earlier this year strike such a note earlier this year?

What if we really are such bad parents; what if the likes of Savage and Leary are right?

And it’s that voice-in-the-back-one one’s mind, it’s that twinge, that “maybe” that has something to do with why, scientific evidence to the contrary, the notion that vaccines are somehow linked to autism just won’t die.

So here’s a possible resolution for the new year: How can we detox ourselves from talking about the hypothetical vaccine-autism “link”?

There’s been studies about older parents, both fathers and mothers, being more “at risk” of having an autistic child, and especially if it’s their first-born child—-now, a study published in Oxford University’s Schizophrenia Journal is suggesting that being a younger dad means you’ll have healthier children. From today’s Science Daily:

“There is a growing body of data showing that an advanced age of parents puts their kids at risk for various illnesses,” says Dr. [Mark Weiser from Tel Aviv University’s Sackler School of Medicine]. “Some illnesses, such as schizophrenia, appear to be more common the older parents get. Doctors and psychologists are fascinated by this, but don’t really understand it. We want to know how it works.”

To explore this important question, Dr. Weiser looked at data collected by the Israeli army. Subjects included more than 450,000 male teens, aged 16 and 17. The teens were asked these questions: How many good friends do you have? Do you have a girlfriend? Do you generally prefer to be with or without a group of friends? How often do you go out on Friday evenings? Do you tend to be at the center of a party?

Controlling for the variables of IQ, mother’s age, socioeconomic status and birth order, the researchers found that the prevalence of poor social functioning increased by 50% in boys with fathers 45 years old and up.

Dr. Weiser does note that “‘many of the most dramatic effects in this study are driven by dads in their 50s’” and that “‘the difference in risk between someone who is 35 or 45 is so small that it’s irrelevant.’”  So how much of a difference does parental age make, and isn’t it also necessary to consider other factors, such as genetics?

The UC Davis-M.I.N.D. Institute’s MARBLES study ( Markers of Autism Risk in Babies’ Learning Early Signs) is following some 100 women who have a biological autistic child and who are pregnant, or who are planning on becoming pregnant, to investigate possible biological and environmental agents that children are exposed to prenatally and post-partum. It seems that maternal health during pregnancy—what expecting mothers do or do not do—will remain an area of scrutiny in the search for autism’s causes: A study published in the December Neurology shows that children whose mothers took Epilim, an anti-epileptic drug, during pregnancy were seven times more likely to develop autism, as compared with children whose mothers did not take such a drug, as reported in Reuters. Epilim is known generically as Valproate and is sold as Depakene in the US. Previous studies have reported an association between fetal valproate syndrome and autism.

Made it through Thanksgiving; did some holiday shopping from the comfort of home (and here’s some gift suggestions); time to get back on the school bus!

• Autism and Schizophrenia: The Same “Disease”?
  According to the latest theory, “an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways.”
• Girls and Getting a Diagnosis
  Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?
• Denis Leary Tries (Tries) to Defend Himself
  Contrary to what he said a few weeks ago, Denis Leary doesn’t seem to be so sorry after all about what he said
• Nicotine Addiction and Autism
  While studying drug abuse and addiction, researchers at the Ohio State University College of Medicine have found a link between nicotine addiction and autism.
• Mandatory Autism Registry in NJ Proposed
  NJ health care professionals will be required to report those diagnosed with autism at any time from the day they were born through their 21st birthday.
• Increased Use of Antipsychotics in Children (and Young Children) Criticized
  More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger.
• Teacher Suspended For Letting Students Vote Alex Barton Out of Her Class
  Florida teacher Wendy Portillo—who allowed her kindergarten class to vote on whether or not their classmate Alex Barton could remain in class—-has been suspended without pay for a year.
• Off to the IACC
  I attend a meeting of attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research.
• A Wish To Be in the Brownies
  In Wisconsin, after one visit to Girl Scout Brownie troop for girls with special needs in Oconomowoc, the troop’s leaders told 8-year-old Magi Klages’ parents not to bring her back.
• Looking For Autism’s Causes At Home
  MARBLES stands for Markers of Autism Risk in Babies—Learning Early Signs and investigates “biological and environmental triggers that children are exposed to prenatally and post-partum.”
• Refrigerator Mothers, Warrior Mothers: One and the Same?
  Is the “warrior mother” not—as proclaimed in the Warrior Mothers book put together by Jenny McCarthy—the opposite of the “refrigerator mother” of the previous generation, but rather her “distorted mirror image”?
• 28-year-old woman’s death under investigation
  The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent at the IACC—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.
• Something Else to Be Thankful For
  I’m thankful everyday to be Charlie’s mother.
• What’s In Your Library?
  What books about autism are in your library?
• Measles Aren’t Going Away, They’re On the Rise
  1049 cases of measles have been reported in England and Wales so far this year, the highest number in 13 years and exceeding the number on 2007, when there were 990 case

Earlier this year, reports that the US Federal Court of Claims had conceded that vaccines had contributed to the onset of autistic symptoms in the case of Hannah Poling led to much speculation and debate about (1) if mitochondrial disorders could be linked to autism and (2) how common mitochondrial disorders might be among autistic children. A number of experts on mitonchondrial disorders met in June to discuss the “controversial case” of Hannah Poling. An article in the November 26th PLoS One entitled Mitochondrial Disease in Autism Spectrum Disorder Patients: A Cohort Analysis investigates the medical records of 25 patients with a primary diagnosis of ASD by DSM-IV-TR criteria. These children were later determined to have “enzyme- or mutation-defined mitochondrial electron transport chain (ETC) dysfunction”; of these, 24 had “one or more major clinical abnormalities uncommon in idiopathic autism” and 21 had “histories of significant non-neurological medical problems.”

“Idiopathic autism” has “become somewhat of a catch-all phrase where a cause, most often genetic, is unknown,” according to the Not Mercury blog. The “non-neurological medical problems” noted in 21 of the 25 participants in the PLoS One  study were primarily gastroinesstinal dysfunction; some also had “pancreatic dysfunction or liver disease–gastrointestinal disorders that are rare in persons with ASD.” Indeed, the authors later state that “non-neurological disorders were nearly universal in our patients.” Also noted was an “increased frequency of prenatal and perinatal complications ….. in children with ASD” and a “high frequency of multiple gestation births.” And, while autism spectrum disorders are diagnosed at a much higher rate in males than in females, in the cohort studied in the PLoS One article, there was an equal number of males and females. In regard to a link between vaccines and mitochondrial disorders, only one of the 25 participants was reported as having “autism/neurodevelopmental deterioration appeared [following] vaccination,” but “such timing does not prove causation.”

Among the conclusions of the researchers was that “careful clinical and biochemical assessment identified clinical findings” in the 25 participants that differentiated them from children with idiopathic autism; accordingly, it is possible that a “disturbance of mitochondrial energy production as an underlying pathophysiological mechanism” might be found in a “subset” of autistic individuals. How common, indeed, are mitochondrial disorders among autistic individuals—are they widely prevalent or a subpopulation? Journalist David Kirby writes about the study in the Huffington Post and seeks to argue that they are not so rare.

Much of the energy fueling the past several months’ discussion about mitochondrial disorders and autism has stemmed from an ongoing interest in identifying a biological cause for autism. The researchers of the PLoS One article note that they found “diverse and complex developmental, neurological, and medical phenotypes of persons with mitochondrial autism”:

Although many children with ASD exhibit some degree of hypotonia, most attain their early gross motor milestones on time. In contrast, 64% of our patients were delayed in attaining early developmental milestones and 32% were five or more standard deviations later than the mean in walking independently. In addition, although regression has been reported to occur in approximately one third of autistic children, typically before age three years, 40% of our patients demonstrated unusual patterns of regression–either repeated regressions, regressions involving losses of gross motor function, and/or regressions after age three years.

I note this mention of hypotonia—decreased muscle tone—and regression. In accounts of the onset of autistic symptoms in Hannah Poling, it was noted that she “refused to walk” and that she “lost her ability to speak” and showed other signs of regression in her development. On a more personal note, my son Charlie was very delayed in meeting all of his gross motor milestones as an infant and toddler. He rolled over, sat up, and walked late—he was 15 months when he was able to walk. He never “regressed” as he often seemed to take a very long time to acquire skills that other children his age had long had. Charlie was often said to be hypotonic when he was younger.

I have to say “was” because it’s been a long time since I heard the word used in reference to Charlie. Charlie learned to swim at 6, around the same time that Jim got him going on his bike (with and soon without training wheels, Jim soon had Charlie pedaling all over the sidewalks and then into the street). Charlie walks for miles with us now, and bikes for even more, and probably would swim for miles in the ocean, if we let him (no we are not). Friday afternoon he pedaled so fast that Jim could barely keep up with him at some moments. Hypotonic no more, Charlie’s in shape.

The authors of the PLoS One study conclude:

Overall, our results demonstrate substantial clinical heterogeneity of individuals with co-occurring autism and defects of mitochondrial oxidative phosphorylation, nearly all of whom we found to be clinically distinct from children with idiopathic autism. The data do not exclude the possibility of persons with isolated autism having a disorder of oxidative phosphorylation–in fact, one of our patients did not have any major clinical features that distinguished her from typical autism. In addition, it is possible, if not likely, that a still broader clinical, biochemical and genetic spectrum of mitochondrial autism exists.

………………The data reported here, and other cases of mitochondrial autism, argue that defective mitochondrial oxidative phosphorylation is an additional pathogenetic basis for a subset of individuals with autism.

The reasons that children may have “co-occurring autism and defects of mitochondrial oxidative phosphorylation” arise from a number of varying causes and much more–”a still broader clinical, biochemical and genetic spectrum of mitochondrial autism”—remains to be explored. It’s suggested that such cases of mitochondrial autism are a “subset,” whose size remains to be determined.

Patternicity.

It’s a term that refers to “the tendency to find meaningful patterns in meaningless noise,” as noted by Michael Shermer in the November Scientific American:

Traditionally, scientists have treated patternicity as an error in cognition. A type I error, or a false positive, is believing something is real when it is not (finding a nonexistent pattern). A type II error, or a false negative, is not believing something is real when it is (not recognizing a real pattern—call it “apatternicity”).

However, as Shermer notes, we don’t have a “Baloney Detection Network in the brain to distinguish between true and false patterns”—-patternicity does seem to be at work when it comes to theories of autism causation. There’s no doubt that some believe that a vaccine really caused their child to be come autistic (a “type I error, or a false positive”), and, too, there seem to be many who don’t believe that there really is evidence refuting a vaccine-autism link (and who do not recognize a real pattern—who are exhibiting “appatternicity”). Shermer cites a paper in the the October Proceedings of the Royal Society B “The Evolution of Superstitious and Superstition-like Behaviour,” by Harvard University biologist Kevin R. Foster and University of Helsinki biologist Hanna Kokko. They draw on evolutionary biology to demonstrate that

whenever the cost of believing a false pattern is real is less than the cost of not believing a real pattern, natural selection will favor patternicity.

Belief in the false pattern of “vaccines cause autism” persists because the “cost” of believing this is more readily grasped, you might say, requires less of certain efforts, than the alternative. There’s a deep-set tendency in us to find, to have meaning, in whatever the world presents to us; to be superstitious (if not a bit paranoid); to see causal associations just because something happens after something else; to assign cause to effect incorrectly.

Lest this seem merely to be yet another “vaccines don’t cause autism” post, I’m tacking on an account of our Thanksgiving and, yes, patternicity.

Patternicity seems another way to explain Charlie’s need to create order, in placing his shoes with the socks inside them perfectly lined up together; in packing his lunch box with a Capri Sun, 4 small plastic containers, and bags of carrots and grapes when he gets home from school; in arranging his CDs on the floor of his room just so. When Charlie was younger, if we so much as moved one shoe or colored block, his agitation was broadcast far, wide, and loudly. These days he’s easy-going if anything gets moved and sometimes leaves it askew, sometimes restores his order.

Charlie having some extra days off from school, I’ve figured that his need for order—for ways to mark and structure the days—increases. He spent a lot of Thursday (aside from loafing on the couch and going on an hour-long bike ride with Jim on a cold afternoon) in his room, trying to stick all the CDs into his old paper pumpkin trick-or-treat bag. There are way too many CDs to fit into the bag and Charlie did not let this deter him from trying to cram them all in with the result that that bag kept splitting and, in the midst of pumpkin pie baking and general Thanksgiving food preparations, I heard the cry of “I need help!” a couple of times.

The pumpkin bag was literally bursting at its seams when I went into Charlie’s room. With three kinds of tape—Scotch, masking, and duct—I tried to patch together the ripped side and the jagged places where CD corners had poked through the candy corn design. Charlie watched me intently and occasionally offered very long pieces of Scotch tape that he’d cut with scissors. At one point, I tried to tape a piece of a brown paper shopping bag onto the pumpkin bag, to make it bigger so all the CDs would actually fit.

“No, no,” was Charlie’s immediate response at my attempt to graft a piece of one bag onto another. Well, of course: What does a piece of brown paper bag have to do with an increasingly dilapidated paper pumpkin trick or treat bag? To tape one onto the other would be to disrupt the order of things—to upset the pattern—-and the cost was too high.

After I’d taped the bag together, I returned to Thanksgiving dinner preparations (now why is it that Americans feel a need to eat a specific menu of turkey, potatoes, cranberry sauce, pumpkin pie?) and Charlie returned to his CD-ordering-and-reordering. When we called Charlie to eat the turkey, we heard “help, fix”: When I went into his room, I beheld the pumpkin bag, so recently, carefully, taped back to wholeness, packed full of CDs with one side ripped open and flapping around.

Apparently there’s a new order to understand here.

MARBLES stands for Markers of Autism Risk in Babies—Learning Early Signs. The study investigates “biological and environmental triggers that children are exposed to prenatally and post-partum”: Some 100 women who have a biological autistic child and who are pregnant, or who are planning on becoming pregnant, are participating in MARBLES, which began in 2006. Researchers from the UC Davis-M.I.N.D. Institute are collecting blood, urine, hair, saliva, and breast milk (if the mother is breast feeding), as well as dust from participants’ houses, and mothers are interviewed and medical records examined. It’s noted that MARBLES is “unique” because

follows mothers before, during, and after their pregnancies, allowing us to obtain information about the pre-natal and post-natal environment to which the baby is exposed.? By gathering information in real-time we increase the accuracy of the information collected and will be able to better understand and observe the biological and behavioral changes that may occur in the mother and/or baby throughout the pregnancy and early childhood period.

The November 22nd InsideBayArea opens by suggesting that people’s homes “might reveal clues for solving one of the biggest mysteries of modern medicine: the cause of a rapid rise in autistic children.” Besides collecting dust with a “special vaccuum,” researchers are also noting what household cleaners soaps, beauty products, electronics, and types of paint, each family uses. And, when Danielle Bell of Danville—whose almost 4-year-old son Jake is autistic—had her now 8-month-old daughter, Layla, researchers were present and “took for laboratory analysis the umbilical cord, a portion of the placenta and what is known as meconium, or the baby’s first bowel movement.”

In the search for a cause, for some of us, it could be said that our homes indeed contain “clues” about autism, in our very selves, in our genes, and not so much is to be revealed by analyzin the dust or the types household cleaning products.

Aside from discovering our housekeeping habits……..