In the July 14th Nature is an article about the NIMH chelation study that was put on hold due to safety concerns. NIMH director, Thomas Insel, M.D., says that, due to children being involved, and because the study “carries more than minimal risk and offers no demonstrable benefit to the participants,” it has been referred to the US Department of Health and Human Services panel for ethics approval.

Nature also points out that the very premise of the study rests on an unproven hypothesis about autism being caused by mercury poisoning. While more and more scientific evidence disputes a link between mercury and autism, a tour ’round the Internet suggests that many believe in a link, whatever the science says:

Others argue that the study doesn’t make scientific sense because autism has not been documented as a symptom of high-dose mercury poisoning and that, even if it were, the damage that mercury does to cells is permanent and not reversible; chelation simply prevents additional harm. They say that the NIMH is bowing to political pressure because a growing number of parents with children who have autism use chelation therapy or want to use it. NIMH director Tom Insel denies pandering to families and says that the idea for the study “came up in the first place because we were getting reports that this was a therapy in broad use and there were very substantial questions about both its efficacy and its safety”.

Dr. Insel has been elsewhere quoted as saying “‘So many moms have said, ‘It’s saved my kids’” (though hardly every mom, including this one). It would be good to learn about the “reports” that Dr. Insel has been getting and about how “broad” the use of chelation actually is. Some are describing Dr. Insel as “advocating” for testing chelation therapy, due to being “pressured” by some parents of autistic children.

Louis Cooper, a vaccine expert and former president of the American Academy of Pediatrics, states that “a well-designed study” of chelation in autistic children with autism would indeed “respond to these parents’ deeply held beliefs in the most careful, ethical way. Such a study would include only the children of parents who were “already determined to try chelation.”

The thought occurs to me: How many parents have talked about using their chelation to “treat” an autistic child and have reported that it did not work?

A new study in Pediatrics links low birth weight (less than 5.5 pounds) and preterm birth to an increased risk for autism in infants by about twofold, and more so in girls than in boys. From an overview at CBS.com:

When the 565 boys and girls with autism were looked at separately, the boys had less than a twofold increased risk of autism if they were born at low birth weight, but the low-birth-weight girls had a threefold or higher risk, found [Diana] Schendel [PhD, lead health scientist at the National Center on Birth Defects and Developmental Disabilities at the CDC] and her CDC colleague Tanya Karapurkar Bhasin, MPH.

They also found that low birth weight (less than 5.5 pounds) and early preterm birth (less than 33 weeks’ gestation) affected groups of children differently, depending on whether they had autism alone or autism and other developmental disabilities.

“There may be a lot of variation in the endpoint we call autism,” Schendel tells WebMD. The study result, she says, “really is highlighting that we aren’t looking for one cause of autism .” The study builds on previous research, some of which has also found a link between low birth weight and autism.

Anecdotally: My son was full-term and 8 lbs, 3 oz. A relative had a baby (a girl) a few weeks before Charlie was born; she was under lbs and a few weeks early. She met every developmental milestone very much on time and Charlie has been delayed in almost everything. And, Charlie has autism.

A study in the March 2008 volume of Pediatrics on psychotropic medication use among Medicaid-enrolled children with autism spectrum disorders noted that there is “ongoing debate” about the uses of psychotropic medications. Only Risperidone, an atypical neuroleptic, has received FDA approval to treat autistic children for aggression and irritability. The AAP study also noted that “medication use is common among children with ASDs and seems to be increasing.” The study sample included 60,641 children under the age of 21 with an autism spectrum disorder diagnosis or an Asperger syndrome diagnosis.

Most of the children in the study were 6-11 years old (45%); most were male (78%) and white (50%); and most were eligible for Medicaid because of disability (71%).

Of these children, 56% used at least 1 medication during 2001; among those who received any medication, 20% used 3 concurrently. The most commonly used medications were neuroleptic drugs (31%), then antidepressants (25%), stimulants (22%), mood stabilizers (21%), anxiolytic drugs (12%), and sedatives (3%).

While older children were more likely to take medications than younger children, it was noted that “use was quite common” in children aged 0 to 2 years (18%) and 3 to 5 years (32%). And,

Among 0- to 2-year-olds, sedatives were most common; among 3- to 5- and 6- to 11-year-olds, both neuroleptic drugs and stimulants were most common; and in the oldest 2 age groups, neuroleptic drugs were most common.

The researchers acknowledge certain limitations to their finds, due to the children all being enrolled in Medicaid:

Use among the Medicaid population may be higher than in the general ASD population because Medicaid typically has less restrictive formulary and copayments than private insurance. Also, Medicaid-eligible children may be more severely affected than the general population of children with ASDs; that 70% of children in this study qualified for Medicaid because of their disability provides some evidence of this.

As I have noted before, my son has been taking both Risperdal (Risperidone> and Zoloft (Sertraline) for a few years, to help him with aggressive and self-injurious behavior and anxiety. We tried Ritalin for a very few days; it did increase Charlie’s ability to focus, but it also made him haunted and nervous and completely suppressed his appetite. We have tried very hard to keep the dosages as low as possible and have only used these medications in combination with educational therapies. Prior to Charlie taking Risperdal and Zoloft, we tried giving him various nutritional supplements, whose effects were temporary at best in helping him with his most difficult behaviors. I consider the medications another tool to help Charlie, and one that we have to monitor very carefully, due to Charlie’s limited language and speech.

More than a few people have raised questions about the long-term effects of these medications on children and on giving a child more than one medication. I was surprised to see how many young children—-aged 0-2—are given some type of psychotropic medication. The researchers single out the “high levels of use of many different psychotropic agents, often in combination” as a concern, especially in these being given to young children “in whom the effects of these medications on development have not been well studied.” They also note a need for more studies in the use of sedatives for young children, and about the use of psychotropic medications in combination for children with autism. I would also appreciate studies about the long-term use of these medications in children—debate on this issue will indeed be going on for more than a little while.

Do I even need to say that?—-after all, it’s no longer the days of the refrigerator mother theory of autism popularized by self-styled early child development expert Bruno Bettelhaim. But then one encounters this headline: 

Autism Caused by Uninformed Parents

in the National Expositor, which is not directly blaming bad parents for causing autism. It’s blaming parents for taking one particular bad action that “causes” a child to become autistic—for having them vaccinated—specifically for having them “injected” with a mercury-based substance in vaccines. 

…[Methyl] mercury is injected directly into the bodies of children where it causes severe neurological damage. And yes, it does cause Autism, despite what you’ve read in the dumbed-down press. Only a fool would inject their child with mercury-preserved vaccines.

Rather: Only one with quite foolish thinking would believe that parents—whatever they do, whoever they are—cause a child to become autistic.

Neon-bright marquees and music (from B.B. King’s theater–Buckwheat Zydeco is playing) and tour buses driving up halfway onto 42nd street and Russian Spanish Korean Twi being spoken and the smell of the gyros and steam from the subway grates: That was what Charlie walked through, holding Jim’s arm and grinning, with my parents and me bringing up the rear on Saturday afternoon in New York City. Too much going on, same as the topics for the past two weeks’ posts.

• What’s It All About, Eli? (2): Keeping the Faith
  While the court case that the main character of ABC’s legal drama, Eli Stone, successfully argues in the show’s first episode involves vaccines and “mercuritol,” a stand-in for thimerasol that is claimed to have caused a child to become autistic, it is matters of faith and spirituality that people seem particularly to be eager to hear about in regard to autism.
• Super Tuesday Tomorrow: The Candidates’ Views on Autism
  Not that you want to know, but I vote for Obama.
• Whack, Wack, Quack
  A typo on an Age of Autism post by Dan Olmsted leads me to reflect on the mob, the Sopranos, the movie “On the Waterfront,” and Lucky Ducks.
• Surprise Surprise: No link between the MMR and autism
  A study in the Archives of Disease in Childhood shows that there is no link between the MMR vaccine and autism. Repeat: There is no link between the MMR vaccine and autism.
• $200,000
  How much is too much, or maybe just enough, to spend on “treatments” for autism?
• A Physiological Marker for Autism?
  Scientists from the Baylor College of Medicine have identified a physiological marker that might be used to create an assessment tool for those with “higher functioning autism” by looking at the brain responses of adolescents with Asperger Syndrome when they played an interactive trust game. Is this a useful assessment tool?
• Autism and Schizophrenia
  In the past, autistic individuals might have received a diagnosis of schizophrenia (or mental retardation, or something else); they could not be diagnosed with autism because autism as we understand it today did not exist as a diagnostic category. That is, for much of the history of autism—if we posit that autism has always existed and was only very recently identified as such—-autistic persons did not have an “autism diagnosis,” but were considered “something else.”
• How to Get a Good Night’s Sleep
  Researchers at the Vanderbilt Sleep Disorders Center have found that melatonin “shows promise” in helping some autistic children fall asleep.
• Special Ed for Asian Students
  The Boston Globe reports that 2.3 percent of students in Massachusetts receiving special education services are Asian, while Asian students make up 4.8 of the public school student population; in Boston, Asians make up 9 percent of public school students, while only 3 percent are enrolled in special education. What’s going on?
• Tased
  15-year-old Tony Presley, who has high-functioning autism, was tased by police on January 28th for “getting out of control at school.”
• Study on Adult Sexuality in Autistic Individuals
  The North Shore Long Island Jewish Health System is doing a joint project with the University of New Brunswick on Adult Sexuality for individuals between 21 and 65 who fall into the Autism Spectrum. Individuals can participate in the study via a confidential online survey (which commenters have some concerns about).
• Maternal Immune Systems and Maternal Antibodies: A causal factor for some cases of autism?
  Researchers at the University of California-Davis M.I.N.D. Institute suggest that some cases of “regressive autism”– in which a child seems to be developing normally and then loses skills and becomes autistic, in contrast to “early onset autism”—-may be connected to the immune systems of mothers during pregnancy. Antibodies in the blood of mothers of autistic children were found to bind with fetal brain cells and affect healthy brain development.
• The Wearying of the Green
  What in the world does “green our vaccines” mean? Maybe Generation Rescue (who took out a full page ad in USA Today proclaiming this) knows.
• High and Low
  Charlie takes his first cello lesson.
• Kids With Autism Are Not Retards
  That’s what Big Brother contestant Adam Jasinski said: Many (most/all of us) beg to differ.
• The Medication Question AgainThere’s an image out there in the public mind that people seek out prescriptions to pop pills for minor ailments and issues, and put more medication into the mouths of babes (their children) because Johnny can’t sit still after lunch: But is this true?

It’s the charm that matters most, at least according to New York Magazine in a review of Eli Stone, the new ABC legal drama that got off to a controversial start with its first episode about lawyer Stone winning a $5.2 million verdict for a mother who claimed that her son became autistic due to a mercury-based substance in a flu vaccine. New York Magazine says “tsk tsk” to the New York Times for feeling it “necessary to deplore this plot point in a February 2 editorial about mercury preservatives. (Sloppy science in a TV serial! Imagine that.).” Who cares about the science or the George Michael musical moments in the show when, as New York Magazine notes, the show has a “high and churning tide of charm” with its “buoyant cast of talented actors.” Who needs science when you’ve got good entertainment (in a season of screenwriters’ strike and “mean-minded reality shows”)?

New York Magazine has a point: Who knows but maybe some of us have been a bit too serious, and certainly not endowed with “tide of charm,” in pointing out that any suggestion—even in a TV show—that mercury or something in vaccines can be linked to autism, increases public confusion and misconceptions about what causes autism and what autism is. But the problem with Eli Stone, if you will, is precisely what New York Magazine pinpoints: The show and the characters have charm, and are funny, and the main character is nicely positioned as fighting for the little guy-underdog-persecuted-long suffering. A link between vaccines or something in vaccines and autism is a hypothesis, but it does not take much—not always, or exactly, science—-for proponents of this view to keep believing, and having this hypothesis packaged so pleasantly and with “charm” simply breathes more life into an urban myth about autism, and distracts attention from the needs of autistic persons today, for education, services, and real understanding.

There is no link between the MMR vaccine and autism, according to the largest ever published study about this controversial issue. The study appears in the Archives of Disease in Childhood and was led by Gillian Baird, a pediatrician at the Newcomen Centre for Child Development. Almost 250 children aged 10 - 12 and born between July 1990 and December 1991 in the south Thames area of England were studied. 98 of the children had an autism spectrum disorder, 52 had learning difficulties, and 90 were developing normally. All the volunteers had received the MMR vaccine but not everyone had gotten both the doses needed for maximum immunity. From Reuters:

The researchers took blood samples from the children and found no abnormal immune response in any of them marked by higher antibody levels or presence of a measles virus still left in the body from the shot, Baird added.

[Dr. Andrew] Wakefield, whose research has been widely discredited, had pointed to these two factors as a way to explain the link but the latest findings do not back up that case, Baird said. Wakefield said in a newspaper interview last year he believed it was biologically plausible the shot could cause autism.

“There was no difference across any of the groups no matter how you cut them up,” Baird said in a telephone interview. “The response to the MMR vaccine was the same in every group.”

Before Wakefield’s study, more than 90 percent of British children received the vaccination, a figure that dropped to 80 percent before recovering to a current 85 percent, according to government figures.

The Herald also notes that the study found that special needs children and autistic children tended to not receive the second dose of the MMR, “perhaps because their parents refused the second dose after their child developed abnormal symptoms.” No evidence of bowel symptoms (enterocolitis) was found in the autistic children, either, whether or not the children had had a regression (one of Wakefield’s claims was that the measles virus in the MMR caused bowel disorder and autism).

Further coverage is in The Guardian; in DrKoop.com; in Scientific American, and many more.

Other studies published in 2007 2008 that refute a link between autism and a vaccine (such as the MMR) or something in vaccines:

Health officials from San Diego County have confirmed that three siblings, none of whom were vaccinated, have been diagnosed with measles. Two of the siblings attend the San Diego Cooperative Charter School in Linda Vista, which (according to the Union-Tribune)) ” the highest percentage of students not vaccinated for measles among any campus in the city”: 10 percent of the school’s 380 students are not vaccinated. According to county health officials,

one of the three children traveled to Switzerland with his or her family and was the first to become ill. That child likely transmitted the virus to the two siblings, said Dr. Wilma Wooten, the county’s public health officer.

Officials from the county health department met Monday with parents of the non-vaccinated children at Cooperative charter school, and four agreed to have their kids inoculated.

Students not vaccinated will be barred from attending the school until Feb. 21 – after the infection period for the current outbreak has passed.

Many parents with children at Cooperative are particularly concerned about shielding their kids from exposure to harmful chemicals, such as pesticides and paint, said school principal Wendy Ranck-Buhr.

But what about shielding them from infectious, and potentially fatal, diseases?

Just to state it again: There is no link between the MMR vaccine and autism.

According to Access Hollywood, an autistic boy plays the autistic child in ABC’s comedic legal drama “Eli Stone,” scheduled to premier tonight. This is an interesting development, to have an autistic child playing an autistic child: People have often questioned and criticized the accuracy and authenticity of actors and actresses playing autistic characters, as Dustin Hoffman in Rain Man and Sigourney Weaver in Snow Cake.

It is, though, all the more unfortunate that a vaccine—via a fictional substance called “mercuritol“—is said to be why William, in the child in “Eli Stone,” has autism. Will a future episode make mention of,or even show the child undergoing chelation—-in which medications are given to a child to remove heavy metals from the blood and so to “detoxify” the body—or other “alternative, biomedical treatments“? Will the autistic child on this TV show be allowed to remain autistic?

Julie Deardorff who writes Julie’s Health Club for the Chicago Tribune suggests (after seeing the pilot of “Eli Stone”) that the show is not about autism:

….., the autism in the story line is almost incidental given all the other loopy things that are packed into the pilot. The show is not about whether vaccines cause autism. It’s about the redemptive powers of faith. What the episode’s conclusion really asks is: Which is the greater force in life: science or faith

Deardorff writes that the “autism-vaccine debate” is about what people, and specifically parents of autistic children, believe, the scientific evidence that there is no link between vaccines and autism, or their own faith that one day their child was “normal” and the next, post-vaccination, autistic. “It won’t matter how many studies show there is no link between vaccines and autism,” writes Deardorff. “We all believe our own truths.” We do indeed: Last June, during the Cedillo trial in which the parents of 12-year-old Michelle Cedillo claimed that she became autistic after receiving a vaccine, essays by journalist Arthur Allen and anthropologist Roy Richard Grinker both discussed why there is no dispelling an autism-vaccine link. Writes Grinker:

Two distinct communities have emerged, and though they both employ the language of science, their ideas are simply incommensurable. The two groups co-exist, like creationism and evolutionary biology, but they operate on such different premises that a true dialogue is nearly impossible.

The idea behind “Eli Stone,” as revealed in media reports, is that a highly successful, seemingly selfish lawyer who has—with little apparent regard for ethical concerns—-fought on the side of corporate America, undergoes a sort of conversion experience and decides instead to fight for the “little guy”—the “vaccine-damaged” child of a single mother, in the first episode. Why this conversion occurs is a matter of science or faith, as Deardroff writes: When Stone starts to hear George Michael singing, is this the result of a brain aneurysm or because Stone is some sort of 21st-century prophet?

Some will continue to believe that a vaccine or something in a vaccine caused their child to become autistic, even as yet another study disproves a link between autism and mercury and/or vaccines—-perhaps it all depends on what script you’ve decided to follow, and who’s playing what part.

Autism is very real for me as it is, I think I can assume, for most of you reading this, whether you are autistic or you’re the parent, teacher, friend, grandparent, sister, brother, aunt, doctor, or otherwise know someone who has autism. Indeed, being my son’s parent has required me to think about some very real things as honestly as I can, from acknowledging that it’s best for his school programs to become more and more directed to vocational training and daily life skills—from saying that he “aggressed” a teacher—- to planning for the future by preparing a special needs trust. When you get down to it, that’s the basics of life with Charlie, a careful focus on getting through the days—with lots of stops to sit with him and enjoy the moment—-and an eye constantly on the future, on the part of Charlie’s life that I will not be here for. I’ve therefore found it rather odd that a TV show, the set-to-air-tomorrow comedic legal drama Eli Stone—-has been getting so much attention, with the American Academy of Pediatrics (AAP) calling for its cancellation due to the storyline of the pilot, in which lawyer Stone successfully wins a $5.2 verdict for a mother who believes that her son became autistic due to “mercuritol” in a flu vaccine.

It is, according to the AAP itself, precisely because of the “Eli Stone controversy” that the AAP is lifting the embargo early on a new study in Pediatrics showing that the ethyl mercury previously used in vaccines as a preservative, is excreted much faster than other forms of mercury in the environment. The researchers are from the University of Rochester:

“Thimerosal has been used for decades, but the surge in vaccinations caused fear that possible accumulations of ethyl mercury, the kind in thimerosal, might exceed safe levels – at least, when based on the stringent risk guidelines applied to its better-understood chemical cousin, methyl mercury, which is associated with eating fish,” said Michael Pichichero, M.D., professor of Microbiology/Immunology, Pediatrics and Medicine at the University of Rochester and the study’s main author.

But scientists are learning that the two mercury species actually behave quite differently……….
In the Rochester study, 216 infants from R. Gutierrez Children’s Hospital (in Buenos Aires, Argentina, where thimerosal is still routinely used in vaccines) were divided into three age groups to have their blood-mercury levels tested both before and after shots were administered at either their newborn, 2- or 6-month checkup. Researchers learned that, in all three age groups, the half-life of ethyl mercury in the blood – or, the time it takes for the body to dispose of half the mercury, and then another half, and so on – was measured to be 3.7 days. That’s a far cry from the blood half-life of methyl mercury, which is 44 days.

“Until recently, that longer half-life was assumed to be the rule for both types of mercury. Now it’s obvious that ethyl mercury’s short half-life prevents toxic build-up from occurring. It’s just gone too fast,” Pichichero said.

To illustrate, researchers cite that infants in the 6-month-old group – who, in their lifetimes, had encountered more total ethyl mercury that any other group studied – still had the same pre-vaccination blood-mercury levels before their checkups as most 2-month-olds had before theirs. This suggests that, before each round of shots, the mercury has plenty of time to be cleared.

Infants’ bodies are able to expel thimerasol mercury much faster than thought and thus there is “…..little chance for a progressive building up of the toxic metal.” Following the study from the California Department of Health that was released earlier this month about how autism rates increased even after thimerasol was removed from vaccines, the University of Rochester study continues to provide evidence against a vaccine-autism link.

Will those who believe that vaccines or something in vaccines caused their child to become autistic see this newest study as proof that the vaccine-autism hypothesis is a hypothesis and even a myth?

Probably—if not definitely not. When it comes to theories about what causes autism, one thing you can count on is that many will continue to put more faith in fictions and hypotheses than in facts and scientific evidence, and that’s a truth that may be stranger than what any TV lawyer argues for in court.