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)

It’s the countdown to the end of 2008 and here is some of what was going on at the beginning of the year:

The trial of Dr. Karen McCarron began on January 7th. On January 16th, McCarron was ruled guilty on all counts. On April 1st, she was sentenced to 36 years in prison for the May 13th suffocation of her then 3-year-old daughter, Katherine “Katie” McCarron.

January also saw the publication of further evidence refuting a link between vaccines and autism, with the publication in the Archives of General Psychiatry on the decline in thimerosal exposure and the continue increase of autism rates. A study in Pediatrics offered further proof that the vaccine-autism hypothesis is a hypothesis. The study showed that ethyl mercury is expelled faster from babies’ bodies than thought, and that there is “…..little chance for a progressive building up of the toxic metal.”

Nonetheless, a new legal drama, Eli Stone, based its first episode around a (highly fictional) case involving a child becoming autistic due to a vaccine. (And what celebrities have to say about science was a constant irritant throughout the year.)

Also, new research on genetics (on chromosome 16 and a test for autism) appeared in January, and throughout the year, with one scientist proposing a unified theory of autism.

In the December 8th Bangalore Times, the need to research ayurvedic treatment for autism is noted:

For children identified with autism spectrum disorders, ayurveda has a range of internal medications and external treatments that are done for an average of 21 days and repeated periodically. These contribute significantly to improved social interaction, improved eye-to-eye contact, reduced hyperactivity, improved communication and also improvement in metabolism and other associated complaints…..

Many ayurvedic medicines can contain dangerous quantities of heavy metals, including lead, mercury, thallium and arsenic, a recent study in the International Journal of Environment and Health reported.

Be careful what you “treat” autism with.

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.

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. Today’s Guardian reports that health officials are seriously concerned about a possible epidemic of measles of between 30,000 - 100,000 cases. Measles has been spreading more easily because of the “relatively low uptake” of the MMR vaccine in the past decade:

The fall in uptake of MMR was triggered by now-discredited research claiming there was a link between the jab and autism.

Health officials in the UK are planning a mass vaccination program in some areas. The Daily Mail quotes Guy Hayhurst, consultant in public health at a local Primary Care Trust, as saying that they have identified 10,534 children who have no record of full MMR immunization.

Here in the US, measles cases are at their highest level in a decade.

It’s starting to seem more than unfortunate and regrettable that the theory of a connection between the MMR vaccine and autism—the so-called “leaky gut theory“—was proposed back in 1998 by Dr. Andrew Wakefield.

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”? So argues Dr. Michael Fitzpatrick, author of another new book, Defeating Autism: A Damaging Delusion, argues in yesterday’s Spiked. As Fitzpatrick writes in his essay, The ghost of the ‘refrigerator mother’,

The ‘warrior mom’ is yet another reflection of the culture of mother-blaming and a manifestation of the burden of guilt carried by parents as a result of the influence of pseudoscientific speculations about the causes of autism……
…….
A number of common themes link McCarthy’s ‘warrior moms’ with the spectre of the ‘refrigerator mother’ popularised by the child psychotherapist and author Bruno Bettelheim and others in the 1950s and 1960s. First, there is a common belief that autism has some environmental cause. Then it was toxic parents; today it is alleged environmental toxins (such as vaccines containing traces of mercury or MMR) to which parents have exposed their children. These theories also have the common features that they are entirely speculative and lacking in scientific support.

Second, both concepts are linked to ‘conversion narratives’, quasi-religious experiences of personal transformation or redemption with deep roots in evangelical Christianity (see James T Fisher’s piece ‘No Search, No Subject? Autism and the American Conversion Narrative’, in Mark Osteen’s collection of essays, Autism and Representation). Then, cure was achieved through the intervention of a charismatic psychotherapist. Today, recovery is also the result of the ministry of another charismatic therapist, in the form of a DAN! practitioner prescribing biomedical therapies.

What links warrior mother and refrigerator mother is “feelings of guilt, anger and blame.” Besides the essay by Fisher (regularly referred to on this blog as Jim, my husband and a cultural historian in New York), Fitzpatrick also refers to another essay in Osteen’s collection, by University of Leeds professor Stuart Murray. Murray has written about the representation, and misrepresentation of autism, in contemporary culture in a recently published book. As Fitzpatrick notes:

Reflecting on the ‘outlandish, offensive misrepresentation of autism’ in Bruce Beresford’s Silent Fall and other films, Murray concludes that ‘overall, it is debatable how much progress has been made in cinematic depictions of autism since the foundational success of Rain Man’.

For Murray, there is a danger that ‘autism as metaphor’ floats free from the condition itself and the concept becomes so diffuse as to be meaningless. He links this metaphoric inflation of autism to the quest for environmental causes and the popular resonance of speculative notions such as that of an autism epidemic attributable to vaccines: ‘Possibly what unites all these scenarios is an idea of toxins, of the problem being some form of poison, be it physical and somatic or environmental.’ As he presciently observes, ‘at times, we seem to worry that we cause autism by living the wrong way’.

That we cause autism by living the wrong way. Is this sentiment not floating in the thoughts of parents who demand their right to choose vaccination for their children or not? Behind the green “Too Good” line of household cleaning products etc. that McCarthy has announced she is launching? Once, parents (and mothers in particular) were blamed for causing autism in their children because they (it was claimed) withheld their emotions from their children and in effect starved them of the opportunity for emotional attachment and development. Now, parents rather clamor to withhold vaccines from their children, in the misguided belief that doing so is for the sake and safety of their children; that they can do nothing less than to protect their children from the dreaded toxins in the environment—-the environment not being the emotionally frigid home environment caused by Bettelheim’s bad mothers, but the environment “out there” of polluted, woefully de-greened rocks and stones and trees?

By this account, McCarthy’s self-proclaimed transformation from MTV-starlet into anti-MMR/mercury/etc. advocate—a veritable “mission from God” as she herself has said—is not simply superficial, but “quasi” all the way. It’s a quasi-religious conversion, and, too, a quasi-conversion that still features reports of a stripper, er, autism pole and some reordering of the facts to allow for a proper Hollywoodish ending. In Jenny McCarthy’s book(s), her child has to “recover” from autism. Otherwise, she wouldn’t have a book.

Or, she might have to end her book with the kind of endings noted in another book that Fitzpatrick cites, Families of Adults with Autism: Stories and Advice for the Next Generation. As he notes,

A striking contrast is immediately apparent between these stories and those in the Warrior Mothers collection: whereas McCarthy focuses on tales of ‘recovery’ in young children, none of the accounts in Families of Adults with Autism tells of a diagnosis of autism ‘lost’ or withdrawn. Indeed, none of these adults is living independently and some accounts describe major enduring problems of self-injury or other challenging behaviours. This may be a result of selection – these stories largely come from parents of adults with high levels of need. It may also be a result of the inaccurate reporting of ‘recovery’ in the McCarthy cases. It is also striking that, although many of the contributors pay tribute to Rimland’s role as a campaigner, few give more than a token acknowledgement to the benefits of his biomedical treatments (such as Vitamin B6 and Magnesium, Dimethylglycine and Secretin) and none claims that such interventions have resulted in ‘recovery’.

All this is all the more notable because one of the editors of Families of Adults with Autism: Stories and Advice for the Next Generation is Jane Johnson, the Executive Director of Defeat Autism Now. She writes on the Defeat Autism Now website:

…..thanks to the insights and tenacity of the parents, and the determination, professionalism, and open-mindedness of our researchers and clinicians, we can say unequivocally at every Defeat Autism Now!® Conference: Autism is Treatable. Recovery is Possible! We know this to be true.

That “autism is treatable,” that “recovery is possible”: These are strong and fervently held beliefs by some practitioners and parents who, like McCarthy, have turned the story of their autistic child into a personal narrative of self-redemption. So long as the story of autism is told through the eyes of a parent in need of a conversion—of saving herself as much and even more than saving her child—so will the “ghost of the refrigerator mother” still haunt, and no “angry mob” of warrior moms will quite be able to banish her away.

Well, here’s a headline that hasn’t been heard so much of late, it seems:

Immunization rate among children rising (from MSNBC via WTHR TV)

According to a recent CDC survey, 77 percent of children have been fully vaccinated in the schedule of recommended vaccines, while less than 1 percent of children had received no vaccines by age 19 to 35 months. Vaccination rates among children are “at or near record levels, with at least 90 percent coverage for all but one of the individual vaccines in the recommended series for young children.” In Indiana, 94 percent of public schools and 68 percent of private schools have complete immunization data for the 2006-07 school year, an increase from last year.

Sue Goebel, a nurse with the Delaware County Health Department, notes that more parents are choosing to space out the vaccinations for their children, though there’s no data to suggest why this should be done. Says Goebel

“It gives moms a little more control”

—-it gives parents the feeling that they have some right to choose.

And the need to have that kind of choice, or feeling that you have that choice: For doctors, researchers, scientists, medical professionals to understand that need — that might, of parents needing to feel in control—it might make a big little difference.

What a week—–I guess that is kind of an understatement. There was a new, and frustratingly improbable theory of autism causation: Rain. The Times Online reminds us that, as has often been said, a correlation does not mean you’ve got a cause and notes that there’s indeed doubt as to “whether the paper deserved to be published and reported.” The line of reasoning followed by the paper’s author, Michael Waldman of the Johnson School at Cornell University is that living in a wetter climate leads children to stay inside more, and to be exposed to less sunlight and so produce less Vitamin D, and to spend more time on indoor activities such as watching TV—and to become autisitic.

Theorizing that TV might cause autism was the topic of an earlier paper by Prof. Waldman that relied as much on correlations and associations. I wrote to Prof. Waldman about his TV-autism theory back in October of 2006. The TV theory made especially little sense in our household because we don’t have a TV and, when we did, Charlie was not one to watch it, beyond certain favorite videos. Indeed, Charlie’s preferred activity is to be outside, pacing or roaming, preferably on a day with a clear blue sky and lots of sunshine. He is, though, pretty tolerant of rain and when it’s not too heavy—misting—-he doesn’t seem to care at all. This is obviously a correlation, but I’d say he’s more focused and calmed and at ease for being outside (mist or rain).

Anyways, as we have no TV, we weren’t able to sit in front of it to watch the results of the US Presidential election pour in (I did not mean that as a pun) on Tuesday night. Jim went to the gym and watched TV there and I flitted around between every major news website I could think of; Charlie was sound asleep, after a good day at school, a log walk (in misty conditions), and a potentially disappointing visit to the grocery store because they’d lost their power and almost all refrigerated and frozen items had had to be tossed, and Charlie was unable to find the usual items (vegetarian egg rolls and mini carrots, among others) that he favors.

You know what happened in the election, and then before you know it there’s been a brouhaha about the suggestion that Robert F. Kennedy, Jr., might be considered to head the EPA—-seems not a week can go by without a certain theory of autism causation pushing its way into the public discussion (and onto this blog). Turning to the topic I prefer to devote my energies to (despite what may seem to be the case), it seems that Colin Powell has been mentioned as a possible education secretary.

On which note—-it’s the annual convention for the New Jersey Education Association and Charlie (a student in NJ’s public schools for most of the past 7 years) has had Thursday and Friday off (hence a much appreciated grandparents visit). And while preoccupied with everything previously noted in this post, guiding Charlie (who made his Monday lunch after school on Wednesday) through a smoother, or reasonably smooth, long weekend has been the main business around here. He’s spent a fair amount of time shopping for new pants (this growth spurt thing just won’t let off), hanging with my parents and using an old computer. I took him for a long swim on Thursday night, Jim did a 12-mile biker ride, and we all went out for Spanish food afterwards.

Correlation between all that and a quite peaceful easy-feeling boy?

If you choose to see it that way…………..

Robert F. Kennedy, Jr. is (per the November 5th Huffington Post) under consideration by President-Elect Barack Obama to head the EPA?

The Robert F. Kennedy, Jr., who, in June of 2007, equated those people criticizing mothers of autistic children who believe that thimerasol in vaccines causes autism with those who “once blamed autism on ‘bad parenting,’ and ‘uninvolved’ moms”—with those who believe that”bad parenting” causes autism?

Being myself (as I wrote back in June of 2007) an “involved mother” of an autistic child, I appreciate this concern about public perceptions of mothers of autistic children. Once upon a theory of autism causation, mothers were held accountable for being cold “refrigerator mothers” whose extreme emotional reserve was thought to make their children autistic. Now, as Kennedy writes, scorn is cast upon some mothers of autistic children for being “too involved.”

But based on what he wrote back in June of 2007 and also in his 2005 Rolling Stone piece, Deadly Immunity: Robert F. Kennedy Jr. investigates the government cover-up of a mercury/autism scandal—-it might be said that Kennedy’s somewhat extensively “involved” in putting forth a certain hypothesis about what causes autism that is not substantiated by the latest studies? A hypothesis that has perhaps heralded the rise of dubious autism “treatments” such as chelation?

Seed Magazine endorsed Obama for his “embrace of transparency and evidence-based decision-making, his intelligence and curiosity echo this new way of looking at the world.” Here’s hoping this is not just a promise, but the reality for the next four years.

Regarding yesterday’s Today show piece on vaccines, autism, and Dr. Paul Offit:

Kudos to Dr. Nancy Synderman, especially at the end of the piece when she made it very clear to Matt Lauer, there’s no controversy about vaccines and autism. Vaccines don’t cause autism. [ABC News has a story on Dr. Offit that emphasizes how "ugly" the discussion about vaccines and autism has become: It's entitled "Death Threats, Hate Mail: Autism Debate Turns Ugly: Vaccine Researchers, Autism Community React to Account of Death Threats and it seems to me that we really ought rather to keep discussion focused on autistic persons.]

When a cameraman filmed Charlie a couple of weeks ago for the Today show, Charlie rode his bike in circles back and fort, back and forth. Jim helped him navigate a tight turn and by the end of it, Charlie was smilng ear to ear and pedaling hard and fast. On the Today show, only Charlie’s pedaling legs and feet were shown so you will have to take my word for it: Charlie astride his bike is a joy to behold.

Charlie’s often most at ease when he’s in motion. Jim met Charlie at the bus on Thursday and they kept moving. They went to the bank and the cleaners. They went to a park and Charlie ran about and Jim passed him a basketball to catch on the bounce. They ran around some more in brisk fall weather before driving into Jersey City to meet me at work.

On a suggestion from Jim, Charlie’s teacher has been having Charlie go outside the classroom at fairly frequent intervals to walk and, indeed, wake up: Charlie’s classroom is smaller than it was last year and its windows look out onto a hallway, rather than outside. He’d been having trouble staying awake some days—one day he fell asleep just after 9am and nothing could wake him till 11.30am—we’ve done everything we can think of (plus) to help him get to sleep earlier so he can get up earlier to catch a 7.25am bus. Regular doses of getting up and out of the classroom into the fresh air have helped some.

Charlie has a couple inches on me now. He seems to have grown a bit taller just in the past week and to be, of late, in a continuous growth spurt. Hours of swimming and bike-riding have given him an athletic build. He’s the youngest in his class—some of the other students are nearing 13 years old—but the biggest and when he gets upset (it happens) what to do to help him calm down is not as obvious or, I’ll even say, as easy.

Nonetheless—one point I’ll diverge from Dr. Synderman on—I don’t feel “desperate” about needing “answers.” Often the best source for an answer to how to help Charlie is Charlie himself. It’s not about saying “he must learn to sit still in this chair for X period of time” or else, but that, well, maybe he learns best when having to sit in a chair is regularly intermixed with running around in the fresh air.

The vaccine-autism issue aggravates because it diverts attention from autistic children, from autistic individuals, and fixates on what (despite more and more evidence to the contrary) some believe is a cause of autism. It’s been a long, confusing, worrisome, tiring journey since Charlie was diagnosed with autism in 1999 and I’ve stumbled and often in trying to help Charlie. But what’s so very much for sure is that my life is better and just plain good with Charlie, and I’m grateful he and Jim and I’ll be walking on the road together for years and years to come.