Many scientists have argued that regressive autism is not regressive at all—that children with a particular genotype simply begin to show symptoms at a stage in their development; the autism comes in at its time, like teeth or body hair. Many parents whose children have regressed, however, argue nearly the opposite: that regression is caused by a specific environmental trigger. Because regression often occurs at around the same age that children are immunized, many parents have attributed their children’s autism to vaccines, particularly the measles-mumps-rubella (MMR) vaccine, and vaccines containing the mercury-based preservative thimerosal. MMR was introduced in the United States in the 1970s and by the 1980s was in widespread use. Because it is not effective during the first year of life, when maternal antibodies block its action, the first dose is administered at about thirteen months. In 1998, British gastroenterologist Andrew Wakefield of the Royal Free Hospital published a paper in the Lancet positing an association between the MMR vaccine and gastrointestinal problems in autistic children. Wakefield and his colleagues described only twelve cases; nonetheless, journalists seized upon the story, and many parents stopped vaccinating their children. In Britain, rates of immunization against measles dropped from 92 percent to less than 80 percent, and cases of the disease began to skyrocket. Whereas only 56 children in England and Wales contracted measles in 1998, and none died, in 2008, 5,088 cases were reported in the UK, resulting in the deaths of 2 children.
Numerous demographic studies have consistently failed to demonstrate a link between vaccines and autism. One study conducted by the Centers for Disease Control and Prevention followed 140,000 children and showed no connection; a Japanese study demonstrated that unvaccinated children actually had a higher rate of autism. After it became known that Wakefield was recruited by an attorney seeking to build a legal case against vaccine manufacturers, that eleven of the twelve study subjects were involved in this litigation, and that Wakefield had been paid for his services by the UK Legal Aid Corporation, ten of the study’s thirteen authors officially retracted their names from it. The Lancet’s editor subsequently apologized for publishing the paper, which he described as “fatally flawed”; in 2010, following an investigation by the UK General Medical Council, the journal retracted it altogether. With the advent of each new piece of evidence absolving vaccines, Wakefield’s acolytes have alleged a cover-up and have shifted to new arguments that keep vaccines in the spotlight. Once thimerosal had been removed from all vaccines routinely administered to children without any decrease in the rate of autism diagnoses, some proposed that the problem arose from combination vaccines and their supposed assault on the immune system, or simply from too many vaccinations altogether.
Witnessing autistic regression seems to traumatize parents much more deeply than recognizing a disorder present from birth; parents are possessed by the idea that the child who once played and laughed with them can be rediscovered. Most of our understanding of autistic regression comes from speaking to parents about their children’s development. Typically, parents of children who regress witness their child’s loss of language at about sixteen months. I met one child who was evaluated because he had an autistic brother and was therefore considered high risk. At six months, he was chortling, playing, and enjoying his exchange with a diagnostician. At a little more than a year, the same child appeared oblivious to the same evaluator; he did not laugh, smile, or acknowledge the presence of others; he seemed flabby and glassy-eyed. It was difficult to believe that he was the same child. Some researchers have questioned whether such regression results from loss of function, or whether apparent early sociability in infancy may rely on different brain regions than more mature sociability. Researchers have estimated that between 20 and 50 percent of autism cases involve regression.
The journalist David Kirby’s Evidence of Harm describes the evolution of the autism-vaccine hypothesis and reports on the divisions between parents convinced that vaccines harmed their children, and scientists and policymakers involved in vaccine development. Each side believes that the other is motivated by financial conflicts of interest and willfully distorted science. Citing failure of petitioners’ attorneys to produce adequate scientific support for their causation arguments, the National Vaccine Injury Compensation Program is currently in the process of dismissing over five thousand claims alleging that vaccines are responsible for making children autistic. The debate is frequently acrimonious. Katie Wright, daughter of Autism Speaks cofounders Bob and Suzanne Wright, has claimed that her son began to display signs of autism immediately after being vaccinated, and that he has recovered in part through treatments that addressed the vaccine injury; she has urged her parents and the scientists they support to abandon “failed strategies” and embrace her perspective. The Wrights posted a statement on the Autism Speaks website clarifying that their daughter’s “personal views differ from ours.” The vaccine argument is championed by ex–Playboy centerfold and comedienne Jenny McCarthy. Critics have observed that McCarthy gains considerable publicity from her crusade and earns a tidy living from speaking engagements.
In March 2008, the Atlanta Court of Federal Claims conceded in the Hannah Poling case that a chicken-pox vaccine had probably aggravated an underlying mitochondrial disorder to create autistic-type symptoms in one child. The case has been treated by antivaccinationists as overdue justice. Some draw parallels between themselves and the early antitobacco movement. “We had an epidemic in lung cancer and heart disease in the fifties and sixties and the cigarette companies had all this science that showed cigarettes had nothing to do with it,” said Lenny Schafer, progenitor of the Schafer Autism Report and adoptive father of a young man with autism.
Many neurodiversity and autism rights activists are, conversely, offended by the vaccine arguments, which they find scientifically groundless and insulting to people with autism. Kathleen Seidel said, “Juries and judges hear these stories, and people’s hearts lead the way. But hearts leading the way don’t always lead to justice.”
Epidemiological studies have demonstrated no correlation between vaccination and autism. Does that mean that no children have a vulnerability triggered by vaccines? One mother whose child regressed told me, “The pediatrician gave him the vaccine, and within twenty-four hours he had a white count of thirty-one thousand. He was in the hospital and they said it was sepsis. After he came out, he was less socially engaged. A lot less socially engaged. It was like I went into the hospital with one kid and I came out with another.” Portia Iversen said, “You can’t confront someone’s experience with a lot of evidence.” Insel said, “It seems to me that the story is the increase in food allergies, asthma, diabetes, autism, pediatric bipolar disorder, which has gone up forty-fold in the last ten years. I wonder if there isn’t something more general going on that explains all of this. I can’t tell you what. But that sounds to me like an environmental factor.” Unfortunately, modern life has too many environmental variables to catalog: cell phones, air travel, televisions, vitamin pills, food additives. Many people believe that environmental heavy metals have afflicted their children. Others blame a broad range of other substances, especially bisphenol-A, a man-made, estrogen-based polymer used in plastics, which has an annual production of more than three million tons. Most geneticists acknowledge that these questions have not been fully resolved, and that they may not be resolved for many years.
Reversing much accepted science, however, in 2011, Stanford psychiatrist Joachim Hallmayer and his colleagues checked identical and fraternal twins for autism and used mathematical modeling to show that genetics determined only 38 percent of the cases they studied, while shared environmental factors appeared to be primarily responsible in 58 percent of cases. The rate of concordance in identical twins was lower than anticipated, suggesting that genetics does not tell the whole story; the rate of concordance in fraternal twins was higher than expected, suggesting that environment—perhaps the uterine environment—plays a significant role. Neil Risch, the director of the
UCSF Institute for Human Genetics and the designer of the study, said, “We’re not trying to say there isn’t a genetic component—quite the opposite. But for most individuals with autism spectrum disorder, it’s not simply a genetic cause.” The study was described as a “game-changer” by Joseph Coyle, editor of Archives of General Psychiatry. A separate group, in a study published at the same time and in the same journal, found that mothers who took SSRIs, a category of antidepressants, just before or during pregnancy had children with an increased risk of autism. These data are all preliminary, and the data showing that autism is 70 percent heritable are more robust, but mainstream science will have to reconsider the idea of significant environmental risk.
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Mark Blaxill is a polished Princeton graduate, founder of a business consulting firm, and one of the most sophisticated proponents of the vaccine causation of autism. He and his wife, Elise, went through ten rounds of IVF, ten miscarriages, and two ectopic pregnancies. They finally produced two daughters. Their second, Michaela, seemed to develop normally for her first year, but before she turned two, Elise began to think something was wrong. When she was two years and nine months, they got a diagnosis. “I wasn’t engaged,” Mark said. “Work was a big deal. Michaela was an easy child. My way of dealing with the grief was to get really aggressive about learning everything I could, so I went almost to vocational school in neuroscience; I was consumed with it.”
By the time I met Mark, Michaela was twelve and had made significant progress. Mark listed the ten people who took care of her—therapists, sitters, doctors who attended to her delicate physical health. He was well aware that few people could afford all this. Nonetheless, he was deeply frustrated. “Michaela had a full-syndrome autistic diagnosis when she started. She didn’t speak. Now she’s engaged, lovely, very social. The language is still not quite at an Asperger’s level, but she’s approaching that. But all she wants to talk about is Jiminy Cricket and Pinocchio. Our job is to move her off that. I just want her to talk about something other than Jiminy Cricket.”
Mark is consumed with his activism. “I think autism is a brain rash,” he said to me. “And if you have politically incorrect ideas, like the fact that autism originated in vaccines and mercury, then you get accused of obstructing scientific inquiry. We believe that it’s the epidemic, stupid; it’s environmental. I’m unsatisfied with the solutions, I’m unsatisfied with the science, I’m unsatisfied with the institutions. Genetics research has failed miserably. And the CDC’s job is to manage vaccine safety, so they produce bullshit studies that give them the outcome they want.” Mark talked about a study he coauthored that showed reduced mercury levels in the first haircuts of autistic children, which he took as evidence that they are not able to excrete mercury as efficiently as other babies. He has published peer-reviewed papers in respected journals such as NeuroToxicology. Encountering his passion, it’s hard not to be converted—except that much of the science he cites has been soundly refuted, and much of the science he disparages appears to have a strong empirical basis. Of course, science is always subject to revision, but, as Bruce Stillman, president of Cold Spring Harbor Lab, has pointed out, science cannot have an agenda, and it appears that this science does.
Mark said, “I was the captain of the football team, the president of the student council, National Merit scholar. I was a pleasure for my parents to have as a child. The autism advocacy thing is about the mission, it’s not about winning or making more money than the other guy, or getting better grades—you consign yourself to the margin of respectable society if you do what I’ve chosen to do. It’s liberating. ’Cause I don’t give a shit what the New York Times thinks; I just want to do the right thing and make a mark on the world.”
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American law provides guarantees of education that are not matched by guarantees of medical care. Education is a government responsibility; medical care is a personal responsibility, controlled in large measure by insurance companies. For that reason, some advocates have preferred to keep treatment for autism in the arena of education rather than of medicine; so far, the pedagogic interventions appear to work better than the medical ones, so most current treatments are school-based. As with Down syndrome and many other disabilities, autism is best identified and addressed as early as possible.
Early intervention requires early detection. Ami Klin and colleagues at Yale have conducted an experiment in which both autistic and nonautistic adults watched Who’s Afraid of Virginia Woolf? Using computer tracking, the researchers found that autistic people do not switch their gaze back and forth between the arguing protagonists as nonautistic subjects do. Building on that work, they have infants watch videos of other children and mothers; the typically developing infants focus on eyes, while the ones at risk for autism focus on objects or mouths. Despite broad concurrence that early diagnosis is valuable because early treatment is effective, there is no consensus about what that early treatment should be. As Bryna Siegel, a psychologist at UCSF, has written in Helping Children with Autism Learn, “The picture of autism treatment is complicated by the fact that there are very different perspectives from which to view treatment: developmental, behavioral, educational, cognitive, and medical. Practitioners from these different perspectives often don’t understand one another’s vocabularies.”
Charles Ferster, an American behavioral psychologist, was the first to propose that people could learn through conditioning just as animals do. This idea led, in the 1960s, to the behavioral interventions now used in treating autism, most particularly to applied behavior analysis (ABA). Such treatments are based on observing the child, pinpointing his negative or obsessive behaviors, and developing positive substitutes for them. Desirable acts receive positive reinforcement: if the child speaks, for example, he may get what he wants. Negative acts do not receive reinforcement: temper tantrums are never rewarded. Many behaviorist treatments are in circulation. Much of this teaching remains unnatural to the child and thus requires constant maintenance, yet many parents consider it vital—just as many hearing parents require a language in which they can communicate with their deaf children.
Other successful autism treatments involve learning from the behavior of the person with autism. Dr. Stanley Greenspan garnered an enormous amount of publicity for his Developmental, Individual Difference, Relationship-Based (DIR®/Floortime™) Model, which involves getting down on the floor with the autistic child to forge a connection. Auditory Integration Training and Sensory Integration Therapy attempt to address the particular hypersensitivities of autistic children. Speech therapy introduces them to the use of language and helps with articulation. Soma Mukhopadhyay, with no background in the field, developed the Rapid Prompting Method (RPM) in India to treat her own son, who was nonverbal and now types poetry.
Service dogs that resemble Seeing Eye dogs are often invaluable to autistic children and adults, helping to stave off panic attacks, provide physical orientation, and build an emotional bridge between autistic people and the social world. One mother exulted about the change in her son, Kaleb, after a service dog joined their family. “He seems so much more secure and more grounded than he ever has before. He seems to be handling things so much better. It’s so important for Kaleb and Chewey to be together twenty-four hours a day. They both need to know that they are each other’s constant.” A legal brief about whether Kaleb should be allowed to take a dog to school said, “Since receiving Chewey, K.D. becomes upset for shorter periods of time, completes his homework, and sleeps between six to eight hours per night. He has less difficulty transitioning between home and other public places, including school.”
Some parents modify their children’s diets, as there are anecdotes of people with autism who are unable to tolerate gluten, casein, and other substances that occur in many foods. The SSRIs, the class of antidepressants that includes Prozac, Zoloft, and Paxil, have been used to control the anxiety to which some autistic people are subject; the results appear to be
mixed. As many as a fifth to a third of autistic people develop epilepsy, and they are helped by antiseizure medications. The stimulant drugs commonly used for ADHD are sometimes prescribed to calm people with autism, as are various sedatives, and antipsychotics such as Haldol and Mellaril.
The results achieved with all of these treatments are inconsistent, and the effort and cost of initiating them is extreme. Even if an autistic person develops and sustains speech, functional skills, and a degree of social awareness, he will not become nonautistic; a distinctive cognitive profile will remain. Kamran Nazeer described how he discovered in adulthood what is obvious to most children: “I began to understand. A conversation is performance, merely a series of juxtapositions. I say something to you. A phrase in what I said, a topic, a point of view, or nothing at all connects with something that you contain. Then you say something. And like this, we proceed.” Such insights solve some challenges associated with autism, but they do not eliminate it.
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