Mitochondrial Disease and Autism: How common?

November 29, 2008 by Kristina Chew, PhD  
Filed under Cause, Vaccines

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.

Measles Aren’t Going Away, They’re On the Rise

November 28, 2008 by Kristina Chew, PhD  
Filed under Health, Vaccines

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.

Refrigerator Mothers, Warrior Mothers: One and the Same?

November 25, 2008 by Kristina Chew, PhD  
Filed under Books, Environment, Family

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.

Today with Charlie and Tomorrow, Too

October 31, 2008 by Kristina Chew, PhD  
Filed under Cause, Family, Media, Vaccines

Boy, bike, shadow
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.
Today Show

Today Show Today on Autism and Vaccines

October 29, 2008 by Kristina Chew, PhD  
Filed under Bike, Books, Media, Vaccines

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.

David Kirby exonerates thimerosal

October 28, 2008 by Kristina Chew, PhD  
Filed under Cause, Diagnosis, Epidemic, New Jersey, Vaccines

So thimerosal’s not the “‘smoking gun‘” linking vaccines to autism, according to David Kirby, whose 2005 book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy argued that thimerosal—-a mercury-based preservative—-was the culprit behind what he calls the “autism epidemic.”

From an article in today’s Star-Ledger (New Jersey) about an October 23rd forum on infant and child vaccines at the Deirdre Imus Environmental Center for Pediatric Oncology at Hackensack University Medical Center:

[Kirby]…..said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

But, he said, the links between vaccines and conditions like autism are still strong and more research is needed. One area to look at is to determine which children might have a genetic propensity for a condition such as autism, for which vaccines may act as a trigger.

……

“New Jersey is lousy with mercury,” he said, much of it from air pollution that is spread in rain.

But he also pointed to the “universality of vaccines” as an explanation for so many children’s contracting chronic illnesses.

“Not everybody lives near cell phone towers, uses the same baby food or household products, but everyone gets vaccines,” he said. He cited the example of the immigrant Somali population in Milwaukee. Pregnant women, mothers and babies were given up to 10 vaccines “and the autism rates among Somali refugees are through the roof,” he said.

So Minneapolis (not Milwaukee) is “lousy” with Somali children who have autism (which is not, of course, a “chronic illness”)?

As everyone knows, it’s generally said that New Jersey is simply “lousy”; based on the autism education Charlie’s gotten here, with speech therapy and OT and daily PE integrated into his school day, and good lines of communication between the teacher and me thanks to email and the phone, I would beg to differ. (But I do tend to weigh education and schools heavily in my thinking.)

And as for it raining mercury here in Jersey? It has been raining all day here—-snowing even in some places—-Charlie and I got a bit wet on our way to the dentist office. He’s never been inclined to use an umbrella—-good thing we both have hooded rain jackets—-neither of us has yet to become more autistic.

So now that thimerosal’s off the suspect list for causing autism, what’ll be next?

The Search for Certainty (or, why we’re going to the dentist at 3.15pm)

For the past two weeks something’s been up with Charlie’s teeth, or so we think. He’s been chewing the string on his sweatshirt and his shirt and poking a finger into his mouth (on the upper right side, I think) and just dabbing at some parts of his teeth with his toothbrush (still brushing the fronts). This has certainly been the Year of Losing Teeth; there’ve been more than a few times when, after a fretful, unsettled day, Charlie has been found with a bloody tooth in his fingers. After a check-up in August, Charlie’s dentist noted that he was right on schedule to be losing so many teeth. This latest instance of possible-pain-in-the-mouth has been going on for awhile so Monday afternoon I found myself calling the dentist’s office and felt most fortunate when the office found him a 3.15pm appointment.

It would be nice to know that there’s a simple, straightforward, medical explanation for those sudden bouts of yowling. We’ve also been wondering about the general angst of adolescence which has at least (so far, for Charlie) proved to be a very tiring experience in which one day he wakes up and not a single pair of pants fits. But if I know that it is something specific—-even (alas) a potential cavity, or a sore in the mouth, or who knows what—this can be kind of reassuring. These sorts of problems can be solved. They have a name, they can be pointed to, and sometimes there’s even a specific thing that can be applied to “make it right.”

Pediatrician Kathy Rivers found out that her youngest child, John (born in 1999), has a mitochondrial disease in July 2005. As noted in yesterday’s Connecticut Post via the Washington Post), John had been diagnosed with autism after his second birthday; he had “severe digestive problems, epilepsy and poor muscle tone and was so irritable that he screamed for hours.” Rivers sought testing after “a doctor treating one of [her] children suggested that the underlying cause of their illnesses might be genetic, possibly an inborn error of metabolism, of which there are hundreds” in 2003. Her oldest daughter had “migraines, extreme hyperactivity and strange vomiting episodes that left her disoriented” as a young child but was “developmentally advanced”; her second daughter, Emily, was born with “hydrops fetalis, which involves a buildup of fluid around vital organs including the heart” and diagnosed with “severe cerebral palsy.” She cannot speak or sit up and requires round-the-clock care.

Rivers, her oldest daughter, and her son have all been “found to have abnormally low levels of carnitine and other suggestive indicators” and now take a “mito cocktail that Rivers said has significantly reduced their symptoms.” John is no longer considered to be autistic. While it’s not for certain, it seems that two of Rivers’ children inherited a mitochondrial disorder from her; it’s also suggested that Rivers’ second daughter’s condition “may actually be the result of severe mitochondrial disease.”

It was back in March that a connection between autism and mitochondrial diseases when the case of Hannah Poling was made public. It was conceded in the US Court of Federal Claims that Hannah’s “‘pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots.’” Ever since, questions have been raised about how common mitochondrial diseases or dysfunction are in children with an autism diagnosis. Experts on mitochondrial disorders have been called to meet and there’s been some reported findings on a genetic link, and some concerns raised about one particular study about mitochondrial diseases and autism.

Unlike in Hannah Poling’s case, Kathy Rivers in the Connecticut Post article says that her son, who has been found to have a mitochondrial disease, is said to be no longer autistic, and to have benefited from a “mito cocktail.” And it sounds like the search for a correct diagnosis has indeed led to the right kind of treatment for Rivers’ children, and perhaps it’s this kind of impetus—this desire for certainty about what a child “has” and therefore about what can do about it—that fuels the drive to redefine autism as (as noted by a commenter yesterday) a “metabolic disorder,” as a medical and biological disorder and even a disease. Understand autism this way, and it makes it possible to conceive of particular remedies, whether or not these exist.

I’m hopeful about this afternoon’s dentist visit for Charlie, but I also get the feeling that we might find out something inconclusive, or something that we kind of suspected (”he’s got a molar coming in”). Am just going to have to keep making educated guesses and being ready to improvise when the time calls for it.

Vaccines and Autism: Videos on Newsweek

October 25, 2008 by Kristina Chew, PhD  
Filed under Science, Vaccines, Videos

On Newsweek: Three videos with interviews with Dr. Paul Offit, chief of the division of infectious diseases at the Children’s Hospital of Philadelphia and a professor of pediatrics at the University of Pennsylvania medical school; Robert Krakow, a New York attorney who’s the father of an autistic son and who is representing more than 75 families who believe a vaccine caused autism in their child; and myself. The videos are below or go here to Newsweek.—— And here’s a profile of Dr. Offit by Claudia Kalb in Newsweek.

Autism “Debates”

October 24, 2008 by Kristina Chew, PhD  
Filed under Health, New Jersey, Politics, Vaccines

There’s plenty to debate about regarding autism and the speech about special needs children that Vice Presidential candidate Sarah Palin is to give today in Pittsburgh —-her first about public policy—-should set off more. According to the Pittsburgh Post-Gazette, she’s to deliver the speech this morning at the morning at the Airport Marriott in Pittsburgh before an invited crowd of 350.


Update 13:00 EST: Here’s the text of Palin’s speech.Palin talks about “these beautiful children” and these are her three policy proposals: more choices for parents, fully funding IDEA, and efforts to reform and refocus. I just heard about some budget issues in my own school district that have reminded me of the need to fully fund IDEA and Palin’s noting of this is good to hear. IDEA, she notes, will be funded by “prioritizing” how money is spent, and especially funds that are “earmarks for political pet projects” such as “fruit fly research in Paris, France, or a public policy center named for the guy who got the earmark.” “School choice” has been a central part of Senator John McCain’s educational policy throughout the campaign and Palin adapts the notion “school choice” to special needs students.

In a McCain-Palin administration, we will put the educational choices for special needs children in the right hands their parents’. Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice — public or private.

Under our reforms, federal funding for every special needs child will follow that child. Some states have begun to apply this principle already, as in Florida’s McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs. This process should be uncomplicated, quick, and effective — because early education can make all the difference. No barriers of bureaucracy should stand in the way of serving children with special needs.

……..

Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child. And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open.

Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students. Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options.

The “options” Palin discusses here are only vaguely connected to the educational issues that face autistic children and their families. Being able to have one’s child attend the “school of one’s choice” is just one issue among many others that families have to consider in providing an appropriate education for their child: Training of teachers and staff, adequate teachers and staff, supervision, inclusion for special needs students with their non-classified peers are just a few that must be considered first and foremost.


Palin’s been quoted as saying that families with special needs children would “‘have a friend and an advocate in the White House’” were she and Senator John McCain to win the election; what, though, about adults with disabilities, who make up 90% of the those with disabilities in the US?

Another autism topic that is regularly the subject of heated debate is whether or not vaccines or something in vaccines can be linked to autism. But while more and more scientific studies refute a link, this particular topic is still regularly portrayed as a “debate” with two equally valid sides, and as a debate and even a disagreement that puts cold-hearted science-bound scientists against distraught parents of autistic children who are staunch and fearless advocates.

There’s a tendency, that is, to invoke a sort of symmetry principle in talking about the notion that vaccines or something in vaccines might be linked to autism. The adamantine pronouncements of scientists defending science itself are contrasted to the pained, highly emotional charges of parents trying to “get to the bottom” of whatever “made” a child to “become” autistic. An October 23rd Bergen Record article about a conference at Hackensack University Medical Center and hosted by the Deirdre Imus Environmental Center for Pediatric Oncology. Journalist David Kirby and the grandmother of an autistic child are contrasted with scientists and doctors.

Dr. Lawrence Rosen, a pediatrician and one of the speakers, told the audience that every family he treats is consumed by the issue.

“Ten years ago, I was having these discussions maybe once a week,” Rosen said “Now it’s every single family that comes in.”

While none of the speakers advocated an anti-vaccine perspective, Kirby said there are many questions that need to be resolved, adding that studying differences in the vaccinated and unvaccinated population should be a national priority.

The author of “Evidence of Harm: Mercury in Vaccines,” Kirby said he suspects that that there are children with a genetic predisposition that makes them vulnerable to an adverse reaction.

“It may be a very small percentage, but if they exist, we need to identify them, and I believe separate them out and possibly vaccinate them separately,” he said.

He also said his research showed that many of the autistic children were ill when they were vaccinated.

“You don’t vaccinate a sick child,” Kirby said. “It says so right on the label.”

Margaret Fisher, medical director of the Children’s Hospital at Monmouth Medical Center, said there are sound medical reasons for the early required immunizations.

Thos who regularly follow this topic have, too, regularly noted David Kirby’s reliance on rebranding and rhetoric to keep the notion of a vaccine-autism link alive. “‘You don’t vaccinate a sick child…..It says so right on the label’”: These short and snappy sound byte-ish phrases regularly lace the arguments of antivaccinationists, who call out “change the schedule!” and “green our vaccines.” And they are effective. As the Bergen Record notes, seemingly every family with young children is raising the question of whether or not to vaccinate.

Sound bytes stick in the mind. But surely we ought to make decisions about our children’s health based on something more substantial?

Is it worth it for pro-vaccine advocates to appear on Oprah?

October 21, 2008 by Kristina Chew, PhD  
Filed under Health, Media, Parenting, Science, Vaccines

As you’ve probably heard by now, Every Child By Two has been sending an email out requesting people  ask Oprah to “dedicate a show to the science behind the question of whether vaccines cause autism.” Some (”an excellent idea”—Kev at Left Brain/Right Brain) are in favor of calling for such. Others are not (”It’s highly unlikely that, even if Oprah did give a platform to ECBT, it would end up promoting vaccination in the way that ECBT desires”—-Orac at Respectful Insolence). I kind of suspect that a TV show like Oprah might try to frame the purported (not-supported-by-the-science) vaccine-autism link as a “debate”—-between, for instance, scientists vs. parents—-when there is no debate about the science.

There is plenty to discuss about why some parents feel they deserve a choice about whether or not to vaccinate their children, and why they feel so unconvinced and at odds with science. But can a show like Oprah really present, in a properly accurate manner, the science of vaccines, without falling prey to parents’ fears and emotions?

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