Thousands of Parents Blame Vaccines, and Are Taking on the Medical Establishment
By Scott Thill
"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks …to get back diagnoses that help explain away the deficiencies of their junior morons," actor and comedian Denis Leary controversially argued with patented flippancy in a chapter called "Autism Shmautism" from his 2008 book Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid. "I don't give a shit what these crackerjack whack jobs tell you -- yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
That explosive insult, intensified by Leary's decision to pen his riotous book under the assumptive moniker "Dr. Denis Leary," is just one of many bombs that has rocked either side of autism's increasingly contentious divide. That currently includes, on one side, scientists and researchers hard at work on discovering the causes of the escalating neurological and developmental disorder, which according to a recent Cambridge University study could affect one in every 64 children. Complicating those efforts is the fact that autism's far-ranging spectrum of psychological conditions has only widened with time, an increase in diagnosis, awareness and the overall environmental toxicity of our lives which we take for granted.
But Leary's crack also roiled the other side of autism's battlefield. It's commandeered by distraught parents of autistic children, who have mobilized their frustration with a medical and pharmaceutical establishment increasingly short on definitive answers but seemingly long on unnecessary pharmaceuticals and inflammatory theories. Along the way, it has become a critical mass movement aimed at injecting major amounts of anecdotal evidence into what before was almost purely a psychiatric or scientific debate.
As a result, the conflict over autism has come to resemble autism itself: A connectivity disorder, fraught with crossed neurological wiring, threatening to spark into mass distraction.
Throwing fuel onto that already considerable fire is the newfound publicity parents have received thanks to the help of celebrities like Jenny McCarthy and Jim Carrey, who helped found Generation Rescue, a research, treatment and public relations program that has, among other things, launched a full-frontal assault on what it argues is too many toxic vaccines given to too many children in their first few vulnerable years of life. And they're not alone: From Oprah Winfrey and Robert F. Kennedy, Jr. to doctors and researchers, Generation Rescue and other organizations, including the Coalition for SafeMinds, a private non-profit investigating the dangers of mercury and thimerosal in medical products and vaccines, are charging into the breach with facts and scores of studies.
"There's no queston that, along with clean water, vaccines are the primary public healthy victory -- miracle really -- of the last 75 years," explained pediatrician Dr. Harvey Karp to AlterNet by phone.
Karp speaks with authority from either side of the autism divide: An assistant professor of pediatrics at the UCLA School of Medicine, he is also probably the most widely read pediatrician in America, thanks to his successful books The Happiest Baby on the Block and The Happiest Toddler on the Block. And as a pediatrician to celebrities like Madonna and more, he's not lacking in credibility when it comes to publicity either. But he's not a fan of justifiably distressed parents of autistic children railing against the scientific record, such as it is.
"To look at vaccines as anything other than a victory is twisting the truth," he added. "That is not to say that we don't have to alter them regularly, but we're not just giving shots to make more money. We'd make more money if we didn't give them. What has happened is that, in the autism debate, anecdote has replaced science in parents' minds. And that's easy when a child gets a vaccine and then suddenly, they're not normal anymore. But you need science to make intuition and anecdote work, and science has demonstrated that vaccines aren't related to autism."
That has been borne out by hundreds of studies reviewed by America's chief independent advisor on science and health policy, the Institute of Medicine, as well as studies conducted by the Centers for Disease Control and more. Recent research has dug deeper, finding that autism could have its roots deep in the brain's neurological connectivity or its genetic mutations. In a recent study published in Archives of General Psychiatry, University of North Carolina researchers discovered that the brain's amygdalae, almond-shaped nuclei tasked with processing memory and emotional reactions, was 13 percent larger in younger children with autism than those without. Another new study has found that children from mothers with autoimmune diseases like Type 1 diabetes and rheumatoid arthritis are three times likelier to have autism than those who are not.
And so the list of theories goes on, as does the scientific research, in spite of the highly public battle over vaccines.
But parents of autistic children have heard all kinds of theories before, some of them that sound like they came right out of Leary's book, and none of which have seemed to help stem the increase in autism. During the '50s and even to our current era, the "Refrigerator Mother" theory has posited that cold, distant and otherwise abusive parenting is partially to blame for children diagnosed with autism or schizophrenia. This psychogenic thesis was indirectly put forward by Child Psychiatry author Dr. Leo Kanner, who founded the first child psychiatry department at Johns Hopkins University Hospital and, together with Hans Asperger, pioneered the modern study of autism. Children exposed from "the beginning to parental coldness, obsessiveness, and a mechanical type of attention to material needs only….were left neatly in refrigerators which did not defrost. Their withdrawal seems to be an act of turning away from such a situation to seek comfort in solitude."
And while the theory has been largely discredited in America, other countries still find some merit to it. As the Guardian reported in 2007, South Korea and Seoul National University's influential child psychiatrist Michael Hong has openly disputed the consensually accepted rise of autism, putting the numbers closer to 1 in every 10,000 children. Like Dr. Denis Leary and Dr. Leo Kanner, Hong claims that much of what is now diagnosed as autism can be attributed to reactive attachment disorder, in which children between six months and three years -- autism's sweet spot, if you will -- fail to form normal attachments to their parents because of neglect, abuse, separation or just a general lack of responsiveness or attention to their attempts to communicate.
Once you factor in the dramatic rise in the toxicity of our environment or the often unnecessary desire to narcotize our socialization with prescription drugs that come with their own basket of nightmare side effects, including death itself, reasons to unconditionally trust the scientific, medial and pharmaceutical industries have a tendency to disappear outright. In June 2008, the Archives of General Psychiatry published a government-funded Yale University study that concluded citalopram, an antidepressant widely used to treat depression and mood disorders, was no better than a placebo for autistic children's repetitive behaviors, such as flapping or rocking in an agitated manner. Of course, the list of ways citalopram can fuck you up is much longer than the list of ways it can help. But that didn't stop doctors from prescribing it to autistic kids, or slow down its profitability. In the last decade, Forest Laboratories, which marketed citalopram as Celexa in the United States, saw its stock surge from around $10 a share to around $50-$80 a share, until the econopocalypse, and perhaps the Yale study, brought it back to Earth.
"According to my friends who've attended medical school, much of their time is spent learning the pharmacokinetics of prescription drugs," Jane Johnson, director of the Autism Research Institute's Defeat Autism Now! project and co-author, with Dr. Bryan Jepson, of Changing the Course of Autism, explained to AlterNet via email. "This is unique to the United States; in other countries, it's still understood that nutrition plays a vital role in health. But parents can be part of this problem: It's much easier to simply give a pill and call it a day. I have to admit I'd prefer that myself."
Whether that pill comes in the form of questionable pharma or too-convenient theories about Refrigerator Mothers, medicine and psychiatry have contributed to the breaking of public trust in ways they might not like to admit. It was in fact doctors, led by a surgeon named Andrew Wakefield, that first sparked off the vaccine controversy in 1998, after publishing a study in The Lancet, one of the world's most well-respected, peer-reviewed medical journals, claiming that there was a connection between autism and the measles, mumps and rubella (MMR) vaccine. The ensuing firestorm was worthy of a Hollywood blockbuster, and its theme of compromised doctors, voracious lawyers and death-bringing vaccines laced with mercury eventually made it onto television in the pilot of the ABC drama Eli Stone.
In short, if scientists, doctors and pill-pushers want to get anywhere with not just anti-vaccine crusaders but autism itself, they are going to have to, whether they like it or not, acknowledge that they are not exactly flawless gatekeepers when it comes to public interest. In fact, that they could be wrong about a great many of things. especially when it comes to a disorder like autism, which is simply, perhaps purposefully, awash in indefinition. And if the rise of autism can indeed be traced back to diagnosis alone, as some doctors argued to me off the record during research for this article, that would be on the medical community as well. They simply cannot escape being part of the problem, as well as part of the solution.
"Their role could be best described as self-protective and fear-based, in that sound science has not been pursued for fear of what may be discovered," claimed Safe Minds president Theresa Wrangham, in an email to AlterNet. "The restoration of trust in vaccines will follow when independent, unbiased studies are conducted, the true risk and benefit of vaccines in use today are known, and at-risk populations are identified." "Autism is the fastest-growing developmental disability, with a 10 to 17 percent annual growth rate, but diagnosis and increased awareness alone do not seem to account for that dramatic increase," Lee Grossman, chief executive officer of The Autism Society of America, asserted via email to AlterNet. "It is an incredibly complex condition. The saying goes that if you've met one person with autism, you've met one person with autism."
Some help from outside the battle terrain could be on the way, in the form of increased government support from the Obama administration, which has promised increased funding for research, treatment, public awareness and screenings, especially of infants. That's a marked difference from the previous administration, which was no friend to science or parents in general, if you ask Karp.
"Throughout the past eight years with Bush," he said, "the government was unwilling to advance the issue on the scientific agenda. And that too-slow response by the government and the medical community has made parents feel they had to speak out even more. And it's not that pediatricians are bad peope, but it is true that with tighter insurance reimbursements, we are trying to address health, nutrition and prevention all within the space of a short office visit. What has to give is the conversation. Doctors tend to say, 'Look just trust me.'"
But that ship just doesn't sail anymore. Especially in our digital age, where everything from publicly edited knowledge sites like Wikipedia to critical opinion publications like The Huffington Post, which has given opinionated figures like Karp, Carrey and more a platform to share and moderate their theories with sizable readerships, carry just as much weight as the family doctor, who most families don't actually see more than a few times a year, and too quickly at that. The skepticism extends even to the science itself, which spends billions a year to tear apart a massively complicated human disorder only to often, as Wakefield allegedly did, reassemble it wrongly, and then ask for more funding. And while trial and error are endemic to science, parents of autistic children are exacting in the search for more triumphs and less error, trials and tribulations.
"There seems to be an endless cycle of press releases touting some newfound gene to blame, with each new study failing to replicate the last," argued Johnson. "To date, it's fair to say that little of use has been found in over a dozen genome scans, and our understanding of how genes work is changing. Many diseases, like heart disease and cancer, are a combination of genes and environment: You're born with increased risk, but your behaviors and exposures will be pivotal in determining whether or not you get the disease." Wrangham agrees. "From Safe Minds' perspective, there is a growing body of evidence and research demonstrating that autism is a disorder with a multifactorial etiology that is highly treatable with causation likely to be based on genetic susceptibilities and exposure to environmental factors. There is most likely a genetic predisposition which loads the gun, but ultimately, one or more environmental events are what pulls the trigger."
Wrangham's weaponry metaphor is apt, given that war terminology worked its way into every facet of the issue I ran into while writing this article. A spokesperson at the National Institute for Mental Health told me to contact researchers and scientists "on the front lines" on the battle against autism, while some parents of children with autism referred to themselves as "warrior moms." For all of their individual beliefs and theories, everyone contacted for this story seemed to be consumed with defeating an overarching enemy that simply escapes concretization.
Karp understands both sides of the mindset. "The battle concerns me as a physician," he admitted. "My life has been dedicated to helping families and children, and I have sometimes put my own family aside to do so. And I'm not alone, so that there are these concerns against the doctors is unfortunate. But parents feel abandoned by the doctors and the system. If their children are diagnosed with a disease, parents have to fight through a bureaucracy that isn't made to make it easier for them. And while the whole system is stacked against them, they are dealing with the pain and sorrow of their children."
The way forward demands that the political, scientific and medical community and the paying public that it supposedly serves, including parents of children with autism, meet in the middle of the battlefield, shake hands and rebuild that inefficient system from the ground up. Along the way, it must admit that it is not simply vaccines laced with heavy metal, or excessive reliance on deadly prescription pills, or even some undiscovered gene that is the problem. All of those are merely symptoms of a greater disorder, which is the current relationship off all the involved parties, and how they perceive and profit from, unwittingly and otherwise, the data they receive. From pharmaceutical companies capitalizing on autism's treatment all the way to the parents, as Leary says, just looking to justify their crappy child-rearing skills by doping their kids with pointless antidepressants, everyone needs a wake-up call. Especially since the culture-at-large has been additionally complicated by a dramatic rise in environmental toxicity and increasing distraction, wherein narcotic overstimulation and omnipresent media and technology have given humanity's collective amygdalae a run for its hard-earned time and money.
"All life is a combination of nature and nurture, or in the current jargon, genetic and epigenetic," Karp concluded. "But there has definitely been a drive towards the mass-production mentality in our lives. We see that in our school system and in the medical community as well. Progress is good, but at a certain point you get to the wrong side of the line where you are missing time to sit and discuss things with your doctor, time to ask a few more questions and to be seen as the full person as you are. Sometimes we are throwing out the baby with the bath water."