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Mysteries and Complications
To appreciate the complexity of the condition, all you have to do is look at the extraordinary range of people who fall under the umbrella diagnosis of autism spectrum disorders. At one end are kids like Charlie Fisher. At 10, he's unable to read and can speak only short sentences. For two years, he head-banged several times a day, says his mother, Kristina Chew, who writes a blog called autismvox.com. Chew believes that vaccines had nothing to do with her son's condition and she worries that all the vaccine attention detracts from the more-urgent needs of people with autism, who require intensive behavioral interventions and social services—the kind of help her son has received. Today, Charlie is doing much better, even learning to surf, but he is still "profoundly different" from other children, says Chew. "There are some things that maybe he can change and other things I hope people can come to accept."
On the other end: Ari Ne'eman, president of the Autistic Self-Advocacy Net work and a 20-year-old university student. Ne'eman was diagnosed at 12 with Asperger's syndrome, a high-functioning subgroup of the spectrum. Exceedingly articulate, Ne'eman says he has never struggled with speech, but he has always had difficulty understanding nonverbal forms of communication, like sarcasm. He also flaps his hands occasionally and he can't stand the feel of certain fabrics, especially velvet.
With the vast range in abilities comes a striking diversity in thinking, too. Over the years, the autism community has divided into camps, often with conflicting ideas about how to view and treat the disorder. Elizabeth Horn, president of the Autism Recovery Consortium, believes vaccines may play a role. Kids "slip away after getting these shots," she says. Horn, whose daughter, Sophia, has autism, believes children on the spectrum are sick, but can recover with help. Sophia, 12, is on a special diet, avoiding artificial colors and chemicals, and she takes supplements like magnesium and vitamin D. Ne'eman, on the other hand, believes in neurodiversity, the idea that differences in human behavior should be celebrated, not fixed. People with autism should be called "autistic people," he says, not "people with autism," the language favored by mainstream advocacy groups. "Our feeling is that the autism spectrum is an intrinsic part of our personality that cannot be separated," says Ne'eman. And he worries about research that might one day locate genes and other markers that could help doctors test for autism. Researchers say such knowledge would allow them to intervene early, during a critical window of development in the first year of life. Ne'eman's fear? That autism will become like Down syndrome—essentially selected out of the population.
It's a provocative idea. But the ultimate goal of the researchers, and the many families who support their work, is to solve the mystery of autism. Clarity is what we need, and science is the way we'll get there.
Editor's note: In an earlier version of this story, we said that the MMR vaccine once contained thimerosal. It did not. Other childhood vaccines, however, did contain the mercury-based preservative.
With Karen Springen
© 2008
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Member Comments
Posted By: JoyFord @ 03/28/2008 3:14:37 PM
Comment: 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
Comment: 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
Comment: 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.