September 13, 2009
An autism diagnosis turns a family’s life upside down. The complex disorder may not manifest uniformly, but the accompanying heartache is universal, whether families struggle to accept a child or sibling may never speak, write his name, have a friend, sleep through the night, or toilet independently. Yet, receiving a heartfelt hug or making eye contact can engender poignant moments of joy or twinges of possibility, striking a balance between optimism and despair.
I understand the desire – the burning need – to have an irrefutable answer to the question of why Autism Spectrum Disorder is on the rise. I have been waiting since 1993, when our son transformed from a normally developing baby into a hyperactive, taciturn toddler, just before his second birthday. Confusion and conflict about causation are as abundant as theories. Consider the headlines: “Autism May be Linked to Enlarged Brain Region (12/05); “Older Dads Linked to Higher Autism Rates (9/06); and “Study: More Evidence that Pre-Term Birth is Linked to Autism” (1/09).
Especially vexing is the contentious debate about whether the measles, mumps, and rubella (MMR) vaccine, recommended for children at 12 to 18 months, causes autism. The MMR theory arose in the mid-1990s after Dr. Andrew Wakefield, a British gastroenterologist, studied 12 children with autism and posited the MMR vaccine triggered the social/communication disorder. The prestigious British medical journal The Lancet published his findings, subsequently retracting them. Wakefield stands by his results, insisting others have replicated them.
This year, on August 30, Dateline NBC aired “A Dose of Controversy,” during which Matt Lauer presented opposing perspectives of Wakefield and Dr. Paul Offit, a Philadelphia pediatrician, immunologist, vaccine expert, and author of “Autism’s False Prophets.” For some whose children’s autism appeared after the MMR vaccine, Wakefield is a hero, as his theory supports their own observations and intuition. Yet, at the conclusion of the NBC broadcast, Wakefield said, “I don’t know whether vaccines cause autism. I know it’s a legitimate question that needs to be asked.” Dr. Bernadine Healy, former head of National Institutes of Health, observed, “All the questions have by no means been answered.”
Offit, meanwhile, is emphatic there is no causal connection between MMR and autism, citing multiple studies of more than 2 million children. The Institute of Medicine concurs, noting, “Evidence favors rejection of a causal relationship between vaccines and autism.”
In light of his findings, Wakefield recommends splitting the MMR into single doses, when possible. Some parents and physicians have embraced his suggestion, while others have gone farther and opted to forego vaccinations altogether. Dr. Robert Sears, author of “The Vaccine Book,” is a California pediatrician who follows Wakefield’s alternative vaccine approach because “no other study had yet repeated his work and proved him wrong.” However, Sears acknowledges, “I have always known that my MMR vaccine precautions were not based on any solid proof of a connection with autism.”
Last week, Sears reported on his website (www.AskDrSears.com) that a multi-center study involving 38 children, designed to replicate Wakefield’s study, concluded there is “strong evidence against an association of autism with persistent measles virus RNA in the GI tract or MMR vaccine exposure.” Yet, Sears “is not ready to throw out the precaution of delaying the measles vaccine and splitting the MMR,” noting “there may not be any good scientific evidence” to support his position but there are other reasons for doing so.
The American Academy of Pediatrics told Dateline, “Delaying vaccines leaves babies unprotected when they are most vulnerable to vaccine-preventable diseases.” Underscoring this point, last spring, Dr. Sarah Lovinger, executive director of the Chicago chapter of Physicians for Social Responsibility, wrote on the Huffington Post:
“Before kids were routinely vaccinated against, say diphtheria or measles, hundreds of thousands of children would contract these diseases every year. Some kids would get a fever and a cough. But many would struggle to breathe and some kids would get encephalitis, (which can lead to permanent brain damage or deafness). Some kids would even die.
“Parents who refuse to vaccinate their kids not only put their own offspring at risk, they also put other children at risk through the well-known phenomenon of “herd immunity.” This means that if almost all kids in a group have been vaccinated against a disease, an outbreak is much less likely to occur. Vaccination not only protects your own child, it also protects the other children in day care or thirdgrade or on the soccer team.”
Lovinger told of a baby who, not old enough to be fully vaccinated, died after contracting pertussis from her unvaccinated teenage uncle.
In recent years, we have had little reason to worry our children would contract deadly illnesses, for immunizations virtually eliminated diseases that plagued past generations. With school underway, students are congregating in classrooms and playgrounds and passing in hallways, touching, sneezing, and coughing. If some are not getting their vaccinations, we have reason to be concerned. Our family pediatrician, Dr. Jim Dufort, frequently has families opt out of vaccinations. Dufort is more worried about children contracting serious illnesses such as haemophilus meningitis, which can result in deafness, seizures, mental retardation, or death, than autism. He shares Offit’s view that by staying the course, Wakefield has done “tremendous harm.”
Sears’ refusal to accept vaccines do not cause autism until scientists prove the absence of causality exemplifies why the autism/vaccine debate rages, but more importantly, his position confuses well-intentioned parents and leads to risky decisions. Parents, seeking the best quality of life for their children, are understandably anxious about balancing concerns about autism against threats of potentially fatal diseases. The decision to ignore vaccine schedules has far-reaching and dangerous implications. By delaying or foregoing vaccines, parents must be prepared to live with the outcome if their unvaccinated child dies a painful, but preventable, death from meningitis or tetanus, or causes another to become seriously ill or die.
It is time to push past the fear to rationality. Certainly, financial hardship, stress, and exhaustion are autism’s unwelcome companions. However, what does it say about our society that trepidation about an autism diagnosis drives a decision to delay or forego life-saving vaccinations, imperiling our children? To make that decision, one would have to believe that living with autism is a fate worse than death. I passionately disagree.