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?

An expecting mother wrote this yesterday on BabyCenter:

…..more than anything else that could go wrong with this pregnancy, I am more worried about my child having autism than anything else in the world.

These causes, many reported by the popular media, and without valid evidence to back them up, are listed:

- Vaccines, especially with thermisol, the kid getting them all at once (flu shot, MMR)

- Smelling cleaning products while pregnant (Lysol, etc.)

- Advanced maternal age

- Having autism in your family

- Heat, hot baths, hot showers

- Worrying and stressing

- Rainy climates

The UC M.I.N.D. Institute’s MARBLES (rs of Autism Risk in Babies—Learning Early Signs) seems to be referred to, though I don’t think the “smelling” of cleaning products during pregnancy is specifically mentioned. The study linking rainy climates to autism rates is noted—a study about which there’s doubt as to “whether the paper deserved to be published and reported,” as stated in the Times Online. Older parents, fathers as well as mothers, have been linked to autism, and there’s a number of studies for genetics, for autism being “in the family.”

But “worrying” and “stressing” and hot showers and baths?

Will we next be hearing about whether worrying about autism be linked to causing autism?

Yes, the numerous claims that vaccines can be linked to autism have been gnawing away at the fears of parents-to-be even though vaccinations do not cause autism.

Hope that the expecting mother on BabyCenter might, instead of fearing autism, learn about it, learn that there’s a lot that you can do to help a child, and know that life raising an autistic child—-life raising a child—-isn’t what the popular media makes it out to be. It may be a different parenting adventure than one might think—for us, for sure, it’s been full of much that’s unexpected, and more goodness and love than I could ever have bargained for.

February brought on winter doldrums and also a topic that came to dominate 2008, the presidential election, starting with a post on the candidates’ views on autism prior to Super Tuesday on February 5th.

There was more evidence refuting the vaccine-autism link—and specifically the MMR vaccine—from the Archives of Disease in Childhood. We need to get the word out about the evidence that there is no link, as it’s been reported that more parents are choosing not to vaccinate their children, because they fear that vaccines or something in vaccines might cause autism. And measles cases have been on the rise in 2008, with 5 cases reported in San Diego (and soon 11 cases) in mid-February.

In the UK, the National Autistic Society began another phase of its Think Differently about autism campaign, with a focus on autistic adults and the message “I Exist.” The need for this campaign was more than made apparent on hearing comments about autistic children as “retards” made by Adam Jasinski, a contestant on CBS’ Big Brother TV show.

After an article in Wired magazine featuring Amanda Baggs and Michelle Dawson, questions about autism as disease/disability/difference led to discussion (of a rather heated nature, at times).

And then, on February 28th, then-presidential-candidates Senator John McCain linked the rise in autism cases to mercury in vaccines…………………

MMR and autism have become indelibly linked in the public consciousness.

What about MMR and asthma?

A study in the December 1st American Journal of Epidemiology asks if there is an association between receiving the MMR vaccine and asthma in early childhood. 871,234 children were examined; researchers Anders Hviid and Mads Melbye looked at rates of hospitalization in those with asthma diagnoses and (for a subset of the cohort) the use of anti-asthma medications. Significantly larger numbers of children who had received the MMR vaccine were less often hospitalized with an asthma diagnosis and also used anti-asthma medication less than unvaccinated children. Researchers concluded that

these results are compatible not with an increased risk of asthma following MMR vaccination but rather with the hypothesis that MMR vaccination is associated with a reduced risk of asthma-like disease in young children.

Ben Goldacre describes the Hviid and Melbye paper as “significant” in a recent column. Goldacre writes the Bad Science website, a column of the same name for the Guardian, and recently published a book, Bad Science. Goldacre critiques the media for their unbalanced—-distorted, even—-coverage of scientific issues, and perhaps no more so than in regard to the MMR:

On Tuesday the Telegraph, the Independent, the Mirror, the Express, the Mail, and the Metro all reported that a coroner was hearing the case of a toddler who died after receiving the MMR vaccine, which the parents blamed for their loss. Toddler ‘died after MMR jab’ (Metro), ‘Healthy’ baby died after MMR jab (Independent), you know the headlines by now.

On Thursday the coroner announced his verdict: the vaccine played no part in this child’s death. So far, of the papers above, only the Telegraph has had the decency to cover the outcome. The Independent, the Mirror, the Express, the Mail, and the Metro have all decided that their readers are better off not knowing. Tick, tock.

Does it stop there? No. Amateur physicians have long enjoyed speculating that MMR and other vaccinations are somehow “harmful to the immune system” and responsible for the rise in conditions such as asthma and hay fever. Doubtless they must have been waiting some time for evidence to appear.

Goldacre also notes how studies refuting an MMR-autism link (by Afzal et al and D’Souza et al) have been “unanimously ignored by the media.”

And with people claiming links to vaccines and various, numerous diseases (Parkinson’s, Alzheimer’s, and on and on) left and right, it’s perhaps hardly surprising that the hypothesis—urban myth—of a vaccine-autism connection was ever formulated, and that it has lasted so long in the public consciousness, to the point that some (you know who) speak of autism as a “vaccine injury” and there are some treatments (you know which) that are based on the vaccine-autism hypothesis.

Indeed, what seems surprising, at this point, is that vaccines can have beneficial effects, as the Hviid/Melbye study shows. Indeed, it’s starting to seem that many have fotgotten that vaccines were created to improve people’s health, so far have we unfortunately come in talking about how they’re “harmful” and “unsafe.”

And with measles cases increasing, it’s time that we remember vaccines benefits, and that vaccines don’t cause autism.

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.

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.

The Today Show website has posted an excerpt from the beginning of Dr. Paul Offit’s Autism False Prophets: Bad Science, Risky Medicine, and the Search for a Cure.

At the Parengs Bloggers Network, some parents describe a “feeling of betrayal” in regard to the “overwhelming fears and sadness surrounding autism and the still hotly-debated autism-vaccine link” discussed in Dr. Offit’s book. Excerpts from some parents’ reviews of the book are here

And if you’re watching the Today Show in the 8:00 half-hour tomorrow (Thursday, October 30th) morning, there’s a segment on vaccines and autism. I was interviewed for it, and I think there should be some footage of a certain boy riding his bike.