One reason a clinical designation of “autism” has gone from being virtually nonexistent to broadly inclusive is the movement toward identifying a widening number of behaviors as being indicative of a psychiatric disorder: Where the DSM-II weighed in at just over one hundred pages, the DSM-IV ran to more than nine hundred. (This expansion has been mirrored by a dramatically increased interest in psychiatric specialization, as seen in the rise in the number of members of the American Academy of Child and Adolescent Psychiatry from 400 in 1970 to 1,200 in 1980 to 3,300 in 1990 to 7,400 in 2000.) Another, equally important, factor was the growth of a parent-based advocacy movement led by a psychologist named Bernard Rimland, whose autistic son, Mark, was born in 1956. At the time, awareness of the disorder was so scant that Rimland had to diagnose Mark himself on the basis of information he gleaned from some old college textbooks. The lack of general knowledge—or even interest—in the disorder led Rimland to seek out every scientific paper, every case study, every research proposal and draft article and Ph.D. dissertation on that subject that he could find.
In 1964, at the precise time that the medical community was embracing Bettelheim’s theories, Rimland published Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, a piece of scholarship so impressive that Leo Kanner himself wrote the foreword. (With that contribution, Kanner signaled his ultimate refutation of his earlier behavior-based model of the disease.) At the time, Rimland’s work was largely ignored—except, that is, by other parents, who were the people he was most interested in reaching anyway. In 1965, Rimland founded the Autism Society of America, which was in all likelihood the first mainstream organization that regarded a diagnosis of autism as anything other than a cause for despair and a source of shame. The Autism Research Institute (ARI), which Rimland set up two years later, was an even more ambitious undertaking: In creating an institution that would plan, collect, and interpret medical research on its own, Rimland was setting out to completely circumvent a medical hierarchy that he felt had turned its back on autistic children and their families.
By the end of the twentieth century, the movement Rimland set in motion had helped bring about a dramatic shift in attitudes about the disorder.19 Instead of shipping children off to all-purpose institutions for the insane or retarded, parents of autistic children were organizing rallies and using their political clout to guarantee access to a wide array of resources. Lobbying efforts in states including Colorado, Indiana, Maryland, Massachusetts, and Wisconsin resulted in waivers that allowed middle-class families to receive Medicaid assistance to help pay for expensive treatments. These efforts, in turn, resulted in still more diagnoses: As the anthropologist Roy Richard Grinker explains in Unstrange Minds, a book prompted by his discovery that his daughter was autistic, “Part of the reason [children are classified as autistic] is that clinicians are more likely to give a child a diagnosis that he or she thinks will help the child receive the best services or school placement than a diagnosis that conforms to the DSM but will not facilitate the best form of intervention.” Grinker goes on to quote Judy Rapoport, the chief of child psychiatry at the federal government’s National Institute of Mental Health (NIMH): “I’ll call a kid a zebra if it will get him the educational services I think he needs.”
The ongoing elasticity of “autism” has meant there are huge variations in who would have been designated as autistic at any given time: One study comparing the DSM-III and the DSM III-R found an increase of almost one hundred percent in the clinical diagnoses of the same group of 194 children. The most remarkable example of the arbitrary nature of diagnostic requirements came in 1994, when the mistaken inclusion of draft text in the published version of the DSM-IV resulted in the official adoption of a much less restrictive list of criteria than intended, as “impairment in social interaction and in verbal or nonverbal communication skills” was changed to read “impairment of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests and activities are present.” One study found that 75 percent of children for whom a diagnosis of a pervasive developmental disorder was ruled out according to the intended standards would have been identified as having a PDD under the published guidelines.
That does not mean that the rise in the number of children with autism spectrum disorders, from an average of 1 in 1,000 in the 1980s to 1 in 110 today, is due entirely (or even primarily) to what scientists refer to as “diagnostic creep.” In the past several years alone, researchers have identified an ever-growing number of risk factors, including advanced maternal age (women who give birth after they’ve turned forty are between 50 and 77 percent more likely to have an autistic child as women in their twenties), paternal age as related to maternal age (the risk of autism appears to rise when women in their twenties have children with men over forty), proximity to families with autistic children (parents’ awareness of the disorder increases the chance their child will receive a similar diagnosis), and the growing use of a type of muscle relaxant used during pregnancy to treat asthma and prevent early labor. There’s also the strong likelihood that there are other environmental factors that have yet to be identified.
These nuances are close to impossible for reporters to convey and for audiences to absorb in a short news report, which explains in part why every parent you meet in the park knows that autism rates have been ballooning but so few are aware of the complex range of potential causes influencing the rise. It’s also hard to explain what you don’t understand (or have time to learn): Over the past twenty years, there’s been an industry-wide bloodletting in the news media that has led to the jettisoning of science reporters—and in a growing number of cases, of entire science sections. From 1989 through 2005, the number of newspapers with weekly science sections fell from ninety-five to around thirty-five, and that figure has fallen even more precipitously since then. In 2008, CNN got rid of its entire science, space, and technology unit. It’s no wonder that in a 2009 survey, 44 percent of health care journalists said their news organizations “frequently or sometimes” ran stories that relied on news releases “without substantial additional reporting or contacting independent sources.” More than 90 percent said budgetary pressures were hurting the quality of health care reporting.
The end result when generalists are commandeered to cover subjects that require specialized knowledge can be simultaneously amusing and infuriating. Take a 2009 piece about advances in functional magnetic resonance imaging that ran in the New York Times–owned International Herald Tribune. Unlike regular MRIs, which use a powerful magnetic field to get images of your insides, fMRIs measure blood flow in the brain in an effort to determine which areas are activated by specific thoughts, reactions, or emotions. One area of research has involved efforts to match distinct words and phrases with identifiable brain patterns. While some early research has shown promising results, this is not a very practical way to find out what someone is trying to tell you: For a patient to receive an fMRI, he needs to go to a hospital or high-tech research facility, where he’ll be placed inside a magnetized cube that’s roughly seven feet high by seven feet wide. He’ll also need to be attended to by technicians with extensive training.
Contrast those realities with the first three paragraphs of the Herald Tribune story, which was titled “Watch What You Think”:
When the police stopped me for running a red light recently, I was thinking, “Don’t you cops have anything better to do?” But the words that came out of my mouth were a lot more guarded, something like, “Sorry, I thought it was green.” Sometimes it’s good to play the dumb foreigner.
The policewoman, a tough lady smoking a cigarette, glared at me. Was she reading my mind? No, I guess not, because she only gave me a warning. But beware, in a few years she might actually carry a device that can do that.
Research is rapidly advancing to allow thought-decoding through brain-scan technology, and it scares me to death. I don’t want anyone else in my head,
and certainly not the police.
As Vaughan Bell, a clinical and research psychologist at Kings College, London, put it, “It’s a masterpiece of superficial reading of the scientific evidence and interpreting it in the most unrealistic and panicky way possible.”
The cumulative impact of this type of journalism is unquestionably negative: It affects the public’s sense of whether scientists are reliable and research money is being spent wisely, and it creates unrealistic expectations for the future. That said, a story like “Watch What You Think” is unlikely to have any immediate impact. (No one who should have gotten an fMRI was frightened out of it, and studies involving fMRIs didn’t lose funding.) But misguided, ill-informed, and cavalier coverage of science and medicine is not always so benign: It influences how hundreds of millions of research dollars are spent, it sucks up the time and energy of public health officials already stretched thin, and it bestows credibility on people’s delusions and fantasies, with occasionally calamitous results.
17 By the 1980s, the majority of Bettelheim’s conclusions had been called into question. After he committed suicide in 1990, dozens of former patients of the residential treatment program he ran at the University of Chicago claimed they’d been physically and mentally abused while in his care.
18 The notion that scientific progress can be understood only within specific social contexts was articulated most famously by Thomas Kuhn in his 1962 book, The Structure of Scientific Revolutions. In it, Kuhn argued that scientific advances are not merely the result of the steady accumulation of more sophisticated data; instead, scientific thought undergoes “paradigm shifts” in which accepted “ways of knowing” are replaced by new methods of understanding the world. Kuhn’s prototypical illustration of a paradigm shift at work occurred in sixteenth-century, pre-Enlightenment Europe: It wasn’t until the all-enveloping primacy of the Catholic Church was challenged by a growing belief in empiricism and experimentation that Ptolemy’s earth-centric theory of the universe was overturned by Copernicus’s heliocentric one, in which the earth is just one of the planets orbiting the sun.
19 One of the most significant factors in this regard was Rain Man, the 1988 blockbuster film starring Dustin Hoffman as an autistic, card-counting savant named Raymond Babbitt and Tom Cruise as his self-absorbed younger brother. The film was a critical and commercial juggernaut: It was the highest-grossing movie of the year and won Academy Awards for Best Picture, Best Director, Best Actor (for Hoffman), and Best Original Screenplay. Rimland served as an advisor on the movie, and Hoffman’s character was based in part on Rimland’s son.
CHAPTER 7
HELP! THERE ARE FIBERS GROWING OUT OF MY EYEBALLS!
In 2007, a sixty-year-old woman confronted a doctor at New York Presbyterian Hospital with stacks of paper, each covered with what she said were tissue samples that had fallen off her skin. These samples were meticulously labeled (one read “white stuff from buttocks”) and, the woman said, were the result of an infestation of an organism that was causing her to scratch herself until she bled. The woman had all the symptoms of delusional parasitosis, a well-documented psychological disorder in which patients are convinced that parasites have burrowed underneath their skin.20 Indeed, this woman had predicted that her doctor would give her that diagnosis—but, she said, she was absolutely certain that she was suffering from a real physical disease and not a psychological disorder. She knew this, she explained, because she’d been in touch via the Internet with thousands of other people suffering from the exact same thing.
The patient was referring to Morgellons syndrome, a disease that was invented in 2002 by Mary Leitao after doctors refused to acknowledge that flesh-eating bugs were the cause of the bloody sores covering the undersides of her two-year-old son’s lips. (At least one doctor she consulted speculated that Leitao could be suffering Münchausen syndrome by proxy, a disorder that involves deliberately harming another person—usually a child—in order to gain attention.) Leitao, whose husband was an internist at a Pennsylvania hospital and who had once worked as a lab technician in a Boston hospital, later said she was always certain that her son was suffering from some unknown disease. After using a RadioShack microscope to examine tissue samples taken from her son’s scabs, she claimed to have discovered microscopic fibers that were pushing through his skin. When the medical community continued to ignore her claims, she founded the Morgellons Research Foundation. (The name “Morgellons” is taken from a seventeenth-century monograph describing children in southern France who had “harsh hairs on their backs.”) For the first four years of its existence, Leitao’s foundation received little attention outside the growing online community of people convinced they were also suffering from the disease.
That all changed in May 2006, when Leitao hired a professional communications consultant to launch a national PR blitz. By mid-summer, NBC’s Today show and CNN’s Paula Zahn Now had aired pieces on Morgellons. On ABC’s Good Morning America, Cynthia McFadden anchored a segment that focused on “one of thousands of patients across the country” who suffer from “a mysterious illness called Morgellons disease” that causes “burning and itching,” “open sores,” and “string like fibers literally coming out of your skin.” Several weeks later, a Time magazine article on Morgellons opened with a description of Gregory Smith, a Georgia pediatrician who described looking into the mirror one night only to see a white fiber “burrow down into his eye.” The fiber, Smith said, glowed deep blue when examined under a black light. The article continued:
“Yes ma’am, I was a little bit distraught,” recalls Smith, 58, who says he can no longer work because his mysterious ailment has also robbed him of his memory and neurological function. “I tried to grab ahold of it with tweezers and it would not come out. It was quite painful, so I threw up my hands and went to the Emergency Room with my wife.”
For Smith, and some 4,000 people across the nation who claim to suffer from similar symptoms, it’s the reaching out that has been problematic. The disease, called Morgellons after a reference in a 1674 medical paper, isn’t officially recognized by the medical community.
The burst of coverage was so striking there were rumors that Morgellons was the product of a covert marketing campaign to support the big-screen adaptation of the Philip K. Dick novel A Scanner Darkly, which starred Keanu Reeves and Winona Ryder. (Reeves played an undercover police agent who goes insane when his drug addiction causes the two hemispheres of his brain to “compete” with each other.) One pop culture blog wrote, “Suspicions were aroused when it was noted that the Wikipedia entry on Morgellons was first created only in February, and linked to the website Morgellons.org. This website seems to put a large emphasis on media coverage of the disease, and claims that a ‘national news broadcast’ will occur in June or July regarding the illness. Coincidentally—or not, as the case may be—the release date for the film is July 7.”
It wasn’t just fans of surreal sci-fi classics who took note: In the coming year, the number of hits from a Google search of Morgellons went from 15,400 to 56,500, and the number of families registered with Leitao’s foundation went from 3,300 to 11,000. Press coverage before that spring’s media blitz was sparse: A Nexis search of dates prior to May 1, 2006, turns up a total of nine newspaper stories that cite Morgellons, seven of which involve Texas State Medical Board hearings against a doctor named George Schwartz for improperly prescribing high doses of narcotics and amphetamines.21
Even taking into consideration that claims of glow-in-the-dark filaments growing out of people’s eyeballs are like catnip to journalists, the utter lack of independent reporting that went into the coverage of Morgellons is astounding. Many stories—like those in Time and on CNN—failed to quote a single person who was not a patient that believed Morgellons was a legitimate disease. Leitao, who studied biology in college, was often referred to as a “scientist” or “biologist” (or both, as was the case on Good Morning America). Virtually every time a “mainstream” expert was quoted, it was
one of four people connected to the Morgellons Research Foundation: an Oklahoma State University associate professor named Randy Wymore, an Oklahoma State University assistant professor named Rhonda Casey, San Francisco’s Union Square Medical Associates’ medical director, Raphael Stricker, and Ginger Savely, a nurse practitioner in Stricker’s practice. Inevitably, any relevant context about their work was omitted—which is not to say it wasn’t readily available: That March, Savely had left Texas when the doctor she’d been working with was threatened with the loss of his medical license if he continued to sign off on her practice of prescribing a year or more’s worth of antibiotics to patients who claimed to be suffering from Lyme disease or Morgellons. Wymore, whose last published study as a lead author had come in 1997, was on the advisory board of Leitao’s charity and ran OSU’s Center for Health Sciences for the Investigation of Morgellons Disease. He claimed to have “physical evidence” proving that Morgellons was an actual condition, but as yet had not offered any of this evidence to his peers to review. Casey, meanwhile, had never been the chief investigator of a published study. On her official OSU staff page, she included the following among her professional accomplishments: “Invited to speak to the Gifted and Talented Class for Bixby High School. The subject of the 1 hour-long lecture was Education for Success, and included audience interaction.”
Then there was Stricker, who ran a business that advertised itself as having six specialties: “VIAGRA Treatment” (initial consultation $400, individual pills $15 thereafter), “Weight Loss Clinic” (“All you have to do is to come by our offices to pick up your first two weeks of medications. . . . It has been said that these medications are nearly ‘magical’ in the way they work, and for many people it truly seems that way”), “Fertility Clinic” (“The exact mechanism by which [our treatment] works is still unknown”), “Hyperbaric Oxygen Therapy,” “Immunodeficiency/AIDS Clinic,” and “Lyme Disease.” Because Stricker’s protocols were rarely covered by insurance, he demanded full payment by his patients at the time of service.
The Panic Virus Page 10
