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Mysteries and Complications

Autism is everywhere—once again. Separating fact from fear as the courts and Hollywood wade in.

 

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You wonder what he thinks. The little boy who flaps his arms and bangs his head. Who bristles at the touch of wool and covers his ears when balloons go "pop!" The boy who doesn't respond to his name and will never say "I love you." What does he think of the world outside? The busy world of childhood vaccines, celebrity fund-raising and genetic research. The cauldron of medicine, media, politics and the law. What does he think of autism?

For that matter, what are we to think? Passions about autism are running higher than ever, and for good reason. Autism spectrum disorders affect one in 150 kids from all walks of life, according to the Centers for Disease Control and Prevention, a tenfold jump in just the past decade. As the numbers grow, public awareness increases and the fervor surrounding each new development intensifies.

Earlier this month, after the federal government said vaccines aggravated an underlying disorder that led to autism-like symptoms in 9-year-old Hannah Poling, the longstanding controversy over the role of childhood vaccines flared anew on network newscasts, the Internet and talk radio. The culture of autism is hitting prime time, too. Next week HBO will air "Autism: The Musical," a documentary about five children with autism who perform in their own show. A week later, Sundance Channel will broadcast "Autism Every Day," a film laying out the challenges faced by families. April 2 marks the first World Autism Awareness Day, a global effort voted into existence by the U.N. General Assembly. Less than two weeks after that, Jon Stewart will host an autism fund-raiser at New York's Beacon Theater, to be aired live on Comedy Central. Among the glittery lineup: Tina Fey, Stephen Colbert and Conan O'Brien.

Despite its high profile, however, autism is one of the most complicated neurological disorders known. Some of the people on "the spectrum" attend college; others never speak an intelligible word. Its complexity, in fact, is what has fueled the ongoing vaccine debate and caused divisions within the "autism community." Unlike most conditions that attract popular and celebrity support—breast cancer, AIDS—autism is almost a complete mystery, with no known cause. The vacuum created by this lack of knowledge has been filled with the theories, worries and frustrations of desperate parents. It's hard not to want something, or somebody, to blame. But now, as the spotlight glares again, it's time to separate fact from fear, to strive for perspective and clarity over emotion, to define the true scope of the disorder.

For decades, researchers have been trying to pinpoint a cause for autism. In the 1950s, clinicians blamed "refrigerator mothers" and their cold, uncaring parenting. More recently, the furor has swirled largely around childhood vaccines. In 1998, a controversial British study, later retracted by most of its authors, suggested a possible link between autism and the MMR vaccine, which contained live viruses. Not long after, a debate over the effects of thimerosal, a mercury-based preservative used in other vaccines, began to build.  Starting in 2001, thimerosal was removed from almost every childhood inoculation (some flu shots still contain it), and the weight of scientific evidence has found no connection between autism and the preservative. Today, scientists believe that genes (the disorder runs in families) and environmental factors, which could be anything from pesticides to antibodies in a mother's womb, both play a role. But some parents continue to believe their children were injured by modern medicine. Sen. John McCain lent his voice to their cause recently when he said "there's strong evidence" that autism is connected to "a preservative in vaccines." That, and this month's ruling in the Poling case—which was one of thousands yet to be decided by a federal "vaccine court"—have given new fodder to the debate. In a CNN "quick vote" conducted after the news broke, 58 percent of respondents said they believe there's a connection between childhood vaccines and autism.

But the court case wasn't that simple. It turned out that Hannah had a rare mitochondrial disorder. Rather than support the thimerosal hypothesis, the decision endorses a whole other field of research into the causes of autism. It's possible, scientists say, that a challenge to the immune system—be it an infection, a vaccine or some other trigger—could stress already fragile cells and exacerbate the problem. Scientists want to know how many children with autism have mitochondrial disorders. And would it be possible to identify those who might be vulnerable to vaccines? "This case is a call to action to continue to understand this very complex disorder," says Geraldine Dawson of the advocacy group Autism Speaks.

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Member Comments

  • Posted By: JoyFord @ 03/28/2008 3:14:37 PM

    My 26 year old stepson has just recently been diagnosed with Asperger's Syndrome and the challenges of daily living with him has been and continues to be physically, emotionally and financially exhausting for my husband and myself. We have discovered that there is little help available to parents and other caregivers because of lack of knowledge and understanding of this illness/condition. Hopefully, more people will acknowledge and support further research with this important health issue. Another health related consequence that is increasing, is the number of adult autistic individuals that are "self-medicating" with alcohol, prescription drugs, inhalants and other drugs to hide their being "different".

  • Posted By: BeckyLynn @ 03/28/2008 7:36:57 AM

    I'm very bothered by the description of Autism in this article! I wonder if the author bothered to spend time with a child with autism and if so was it more than one. My child is autistic and does not fit any of the descriptive characteristics mentioned in the first paragraph explaining characteristics of autism. No wonder why "the world" and autism is such a mystery and misunderstood.

  • Posted By: GWL1950 @ 03/23/2008 9:34:57 PM

    In the absence of knowledge, all we have is belief.

    Reporting on this "controversy" is mostly useful insofar as it illuminates the belief systems that exist in our society regarding science, medicine, and c ausality. It's human behavior. to seek explanation, particularly when is becomes clear that something affects so many children.

    The bias towards correlational thinking is a strong survival trait. Eat something unusual, get sick and you'll likely never eat it again. When we don't understand, those correlations are important.

    How does it relate to the "Controversy"? Well, when the Institutes of Mediciine looked at the rise of autism in California, they found correlations:

    >>Dr. Liebermann then talked about ecological studies. In 2000 the Institute of Medicine presented data showing the amount of thimerosal in vaccines and cases of autism diagnosed in California by year of birth. The data show increases in the amount of thimerosal given to children by birth cohort and increases in the rates of diagnosis of autism, and they track fairly well. The rate of autism rose in the mid-eighties, even before an increase in thimerosal. However, anything that increased in the nineties tracks with diagnoses of autism, including use of home personal computers and cell phones. This kind of data only shows that two things were increasing at the same time. It says nothing about a possible association.
    http://www.autism-watch.org/rsch/thimerosal.shtml<<

    I have no quarrel with challenges to "conventional wisdom", medical or otherwise. Once there was no reason to link handwashing and other sanitary practices in the operating room with post-operative infections. But those challenges should be structured to test assumptions and scrutinize belief-driven logic, not to replace one set of assumptions and beliefs with another.

    It's interesting to read what the WSJ Health Blog reports:

    >>The father of a girl who developed autism-like symptoms after receiving several vaccinations in a single sitting doesn???t oppose vaccines.

    ???I want to make it clear I am not anti-vaccine,??? Jon Poling, who has an MD and a PhD, told WebMD. ???Vaccines are one of the most important, if not the most important advance, in medicine in at least the past 100 years.??? But, he added, ???every treatment has a risk and a benefit. To say there are no risks to any treatment is not true.???.>>

    Informed consent is never a bad thing.

    But in a world where pediatricians have 90 seconds of discretionary time, it is incumbent on parents to learn the objective facts, fit those facts to the objective circumstances and then discuss any questions that result with their pediatrician.

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