by Brian Deer
In the next edition of the institute’s newsletter—the Autism Research Review International—Rimland trumpeted “alarming” news on page 1:
Autism-vaccination link in the UK?
Still scrabbling for answers, Rimland never looked back. By the time Thoughtful House was shopping for furniture, he published a list of what he said was evidence that MMR caused autism. It comprised one review article, three reports by an ex-collaborator of the crazy professor, Hugh Fudenberg, and twelve authored by Wakefield.
To Johnson—who returned every year to Rimland’s conferences—the project in Austin offered hope. But some parents, online or writing to me, voiced concerns over the center’s priorities.
I heard of instances of kids being scoped (at a neighboring hospital) when their mothers said they’d no bowel symptoms. Others complained of what felt to them like pressure to agree to the procedure. One told me she wanted to enroll her son in an “equestrian program” advertised by Thoughtful House—but was informed that it was in a “package” with colonoscopy.
“The first thing I was struck with, other than the expense, was that they said they may determine that my son may need a scope,” wrote another mother. “And if so, they required you to use their facilities, and most insurances do not cover it . . . my son has never had any bowel problems.”
By now, Wakefield knew that I was back on his trail: not least because I’d written to say so. My TV contract was with the UK’s Channel 4 network: a national broadcaster, with legal mandates for accuracy and fairness. By now, I had the patents, the business scheme documents, and a boxful of Bradstreet’s remedies. I’d got Chadwick, Fudenberg, and the agony of a mother who blamed herself for letting her son have MMR. I’d got complaints alleging horrors involving children on Malcolm Ward. All I needed now was the man.
I trawled his schedule. Texas would be best. But it seemed there was nothing on the horizon. His next listed engagement was at the Indiana Convention Center in Indianapolis, where on Friday, October 22, 2004, he was to speak at a conference run by the Autism Society of America. So, when he descended from the podium to mingle with mothers, I walked right up and extended my hand for our prime-time 9:00 p.m. slot.
Anybody else might have responded, “Go away.” But that wasn’t the real Andrew Wakefield. He stepped sideways, struck our camera, slapping his paw over the lens, and took off, with me in pursuit. The chase went on . . . and on . . . and on. The conference center was vast. It was perfect. With him dressed in a cream jacket, one-strapping a black rucksack, he strode—escorted by a heavyset man—past mothers, past Rimland, and only eventually to safety, through a lockable glass door. Where I stopped.
“Parents have very serious questions to ask you,” I called, as we’d careened down corridors, our cameraman dancing. “If you’re confident about your work, sir, and the quality of the research, sir, and that your commercial ambitions will withstand public scrutiny, you will stand your ground, and answer these questions.”
TWENTY-TWO
Nothing As It Seems
It was a scorching summer morning in Washington, DC, when Wakefield announced his vindication. He’d won an apology: that what I’d said was false; that I’d been wrong in every respect. There were no conflicts of interest. He wasn’t paid by a lawyer. Just like he said, all along. His twelve-child study was ethically approved, and the patients appropriately referred.
“We have been informed that defamation proceedings have been commenced,” he read aloud from a 166-word statement of retraction he’d received, in which all of my findings were disavowed. “We apologize to Dr. Wakefield for any distress caused and, at his request, have paid an appropriate sum to selected charities.”
This was Wednesday, July 20, 2005, on the grass of the National Mall. He leaned on a wooden lectern, which was festooned with microphones, wearing a pale blue shirt, sleeves rolled to his elbows, patterned tie, and khaki pants. He was ringed by a crowd—mostly the mothers—who clapped and whooped to hear he was cleared.
Dan Burton was there, plus three more from Congress: come to protest about the preservative thimerosal. By then it had been almost eliminated in the United States. Thoughtful House was planning research.
“Protect Our Children,” shouted placards. “Autism = Mercury Poisoning.”
But, as Lenny Schafer’s newsletter would report to thousands, the joy for the campaigners, gathered in front of the Capitol, was:
British publication retracts slurs on Dr Andrew Wakefield
The achievement was masterful. Wakefield beamed—in front of those he now looked to for a living. Boosting his image as a man grievously wronged, he’d issued three libel claims over my investigation: against the Sunday Times, and me; against Channel 4, and me; and against briandeer.com, and me.
“Dr Wakefield’s clinical report,” his lawyers insisted in a nine-page demand for “substantial” compensation, “was sound and reliable in describing the history and clinical findings in a cohort of 12 children referred consecutively with regressive autism and bowel symptoms.”
He stood more chance of that Nobel Prize. The apology wasn’t from us. What he’d done was to threaten the Cambridge Evening News: a fragile local newspaper in eastern England, which had mentioned my stories in two sentences. Its circulation was five thousand (against the Sunday Times’s 1.2 million), and even the editorial time to process his complaint would have jeopardized its hand-to-mouth rhythms. So it groveled, retracting, within twenty-four hours, what it hadn’t even printed in the first place.
“I was astounded when I was sent a copy of your publication,” wrote Alastair Brett, legal manager of Times Newspapers, to the little evening paper on the same day as Wakefield’s announcement in Washington, “which does nothing other than apparently apologise for material which has appeared in The Sunday Times.”
The truth was that Wakefield did allege we’d defamed him. But, after that, he attempted a maneuver. My first reports had triggered a call from the British government’s health secretary for an inquiry by the General Medical Council: the regulator for all British doctors. Shrewdly, Wakefield said he would “welcome” and “insist on” one. And after the GMC’s officials took him at his word and launched an investigation into my first findings, he demanded that his lawsuits be frozen. He thought he could tell his supporters he was suing, but not actually carry it through.
So we took him to court—Channel 4 and me—to force him to put up, or shut up. If he was saying he was suing us, hell, he should sue. I wasn’t going to have his allegations hang over me. So not only did we apologize for nothing whatsoever, but just seven days after his Washington triumph, we won our first ruling. He was ordered to file his suit.
Three months later, he was ordered again: to proceed, with due haste, to trial. “It thus appears,” ruled Mr. Justice Eady, sitting in Court 13 of London’s Royal Courts of Justice, “that the claimant wishes to use the existence of the libel proceedings for public relations purposes, and to deter other critics, while at the same time isolating himself from the downside of such litigation, in having to answer a substantial defense of justification.”
His costs were being paid by the Medical Protection Society, essentially an insurance company. I, too, was covered, by a Channel 4 arrangement, but I was stuck with the upshot for nearly eighteen months, demanding almost full-time attention. There were countless briefings to draft for our legal team; hundreds of documents to be indexed and exchanged. There were meetings with counsel and hearings before the judge. And (although Wakefield later said that he’d never read my website) there were threatening letters to me from his lawyers—some delivered to my home by men in leather and crash helmets—warning me of ruinous costs.
My journalism shrank to two decent stories. One was a probe of Vioxx, Merck’s killer of a painkiller, which took me about six or seven weeks. I remember five days in a public records office, running a ruler down columns of printed death l
istings, looking for a male in his seventies whose name was anonymized in an adverse event report with his initials, “KW.”
And I found him.
Page 1 splash:
Vioxx death toll may hit 2,000 in UK
Inside, page 5, a “Special Investigation”:
Victims of drug that took a hidden toll
My other success was a film for Channel 4: an investigation called “The Drug Trial That Went Wrong.” It probed an experiment in which a monoclonal antibody, code-named TGN1412, caused near-death injuries to volunteers. The climax saw me chase the boss of the company responsible through the sumptuous hallways of the Four Seasons Hotel, Boston, much like my pursuit of Wakefield in Indianapolis.
I knew that his lawsuits would never be tested. Privately, that bugged me a lot. The last such crusader to appear in a London libel trial was a lying historian named David Irving, who sued New York author Deborah Lipstadt and Penguin Books for suggesting he was an apologist for Hitler. Not only did he lose, but her battle became a movie after the judge branded Irving a “Holocaust denier.”
But one Tuesday afternoon in May 2006, I discovered I wasn’t wasting my time. I was at Channel 4’s lawyers, Wiggin LLP (all carpet, smoked glass, and “would you like coffee?”) in the heart of London’s West End. I was sipping a paper cup of redbush tea, when our formidable solicitor, Amali De Silva, dumped in front of me a stack of Xeroxed reports, disclosed to us by Wakefield’s lawyers.
I counted nearly forty. Each documented a child who’d passed through Malcolm Ward. Each was about seventeen pages, crammed with diagnoses, histories, endoscopy findings, histopathology, and tables of blood tests. Frustratingly, their fronts were redacted in black ink, obliterating the patient’s name and date of birth, which would make them effectively useless to me, since I couldn’t match any against the twelve.
But as I flicked through the first, I nearly spat my tea when I spotted a name inside. After correlating court lists, news stories, and other sources, I’d learned the identity of all twelve Lancet kids, and in my hands was a report on a five-year-old boy who was anonymized in the paper as Child Six. Someone forgot to redact a pathology report. The rest in the stack were the same.
If an ATM machine had unloaded into my shopping bag, I couldn’t have felt more grateful for a glitch. Although some were missing—including Child Two’s and Child Four’s—here were collections of the data behind the project that launched the vaccine alarm on the world. To the best of my knowledge (and I’m willing to be corrected), no journalist had ever obtained such a window of insight into anonymized biomedical research.
This was quite some payback for his Washington stunt, and just when he was getting a little comfortable. For himself and his family—Carmel and now four kids (aged seventeen, fifteen, eleven, and nine)—that month he’d purchased a house to suit his style, with views of the Texas hill country. There were no Roman gates or servants’ quarters. But in five acres of woodland on Austin’s west side, he’d gotten a Spanish-style foyer and marble floors, four living rooms, six bedrooms, and six full bathrooms. He’d a games room, gym, swimming pool, and hot tub.
Autism + vaccines = money.
Child Six wasn’t the “sentinel” or “most compelling” case. But his mother was a person of interest. Like Ms. Two, she phoned Wakefield in the aftermath of Newsnight. She was a “founder” and “spokeswoman” of Jackie Fletcher’s JABS group. And only four and a half months before the “apology” on the National Mall, she was a speaker with Ms. Two at a Thoughtful House event. The two mothers were in it together.
The report in front of me was an output from a database (maintained by a Royal Free research nurse) for Wakefield’s pilot study. It was mostly Q&A requests for information to be inserted, with answers in labeled boxes. I thumbed to page 3 of Child Six’s report, topped with the title “Summary.”
Beneath the title was a single line, asking if the child’s “initial development” was “normal.” To claim vaccine damage, this feature was important. And I knew the Lancet paper was clear. In its “Methods” and “Interpretation” sections, it stressed that the twelve were “previously normal” children, with a “history of normal development.”
But Child Six’s report got off to a rocky start. “Initial development—normal?” it asked, and answered itself bluntly:
No
Promising, I thought. But this didn’t detain me, because three inches below that, a six-inch-wide box went to the heart of Wakefield’s behavior. It was labeled, in boldface, “Initial diagnosis” and was answered:
Aspergers Syndrome
Down the page was another box, “Current diagnosis”:
Aspergers Syndrome (most likely)
I didn’t need to check. That twelve-child paper reported no case of Asperger’s syndrome. According to Table 2, column 2—“Behavioural diagnosis”—eight of the kids were diagnosed with “Autism,” one with “Autism? Disintegrative Disorder?,” one with “Autistic spectrum disorder,” and two with “encephalitis?”
Asperger’s had surfaced in the late twentieth century and would lose favor (at least officially, among pediatric professionals) in the early twenty-first. In the 1970s, the World Health Organization had pigeonholed autism among the “childhood psychoses.” Then, in 1992, new thinking emerged, unveiling the “pervasive developmental disorders.” Childhood autism was one, and Asperger’s another: codes F84.0 and F84.5. “Disintegrative disorder” (in older kids) was F84.3, and when there was uncertainty (as often there was), the phrase “autistic spectrum disorder” became popular.
Notwithstanding lay talk, or the short words of news headlines, probably every pediatrician in the world would have known that Asperger’s was a distinct diagnosis. “Pervasive developmental disorder,” the Australian professor, John Walker-Smith, explained, for example, in his memoir Enduring Memories. “This includes children with autism and so-called autistic spectrum disorder as well as Asperger’s syndrome. These latter children do not have the language delay and delay in cognitive development which is such a feature of autism.”
Wakefield knew this. And, everywhere else, he routinely used the distinction. In his New Orleans conference abstract, reporting on thirty kids (which I drew on for data during my meeting at The Lancet); in a report to the Legal Aid Board on his clinical and scientific study; in a talk to a parent conference in Sacramento, California; at Burton’s congressional hearing, speaking under oath; on the Thoughtful House website; and in documents in his lawsuit against Channel 4 and me. Every time, he distinguished them correctly.
“A fundamental aspect of Asperger’s that distinguishes it from autism,” he later explained in a book, “is the normal acquisition of speech, and a diagnosis of Asperger’s requires cognitive function within the normal range for age.”
This was nothing like the challenges of Child Two, or Child Four. As José Salomão Schwartzman (John Wilson’s coauthor on the DTP paper) explains, when I meet him in São Paulo, Brazil, “It is our experience every day that you talk to the father, ‘Your child has characteristics of Asperger’s syndrome.’ And the father says, ‘No doctor, he’s exactly like me.’ ”
The report in my hands at Wiggin LLP was so comprehensive it even revealed who had diagnosed Child Six. A box on page 3 named two pediatricians: one a consultant in a children’s hospital’s child development unit, fifty miles south of London. Another was a consultant developmental pediatrician in one of the capital’s flagship centers. Then, at the Royal Free, the nonspecialist child psychiatrist, Mark Berelowitz, who’d spoken alongside Wakefield at the Atrium event, had concurred with the experts’ opinions.
With my tea going cold, it appeared to me that Wakefield—a nonclinical, academic, adult gastroenterologist—had changed the pediatricians’ diagnoses.
Why? Why not? He wrote up the data, and the change made his “syndrome” more convincing. The paper claimed to be a series of ki
ds with “developmental regression”: or, as his lawyers put it, “a cohort of 12 children referred consecutively with regressive autism and bowel symptoms.” But Asperger’s syndrome (“disorder” in the United States) was critically different in that—unlike autism—there was no recognized subgroup with regression.
Pediatricians reading The Lancet would have spotted that in seconds and realized something was adrift. “There is no such thing like regressive Asperger,” Eric Fombonne, director of psychiatry at McGill University, Montreal, Canada, tells me later. “The presence of a regression of the type seen in autism would almost certainly rule out Asperger.”
I carried on reading—past Child Six’s “infection and vaccination history”—to page 5 and “Adverse reactions.” Here the database report clashed again—and not only with the paper, published to such effect. It even clashed with the mother’s account.
There wasn’t much narrative in the report from Ms. Six. But she talked about her son many times elsewhere, with memorable color and consistency. “Within hours of being vaccinated with the MMR, he developed high-pitch screaming and a very high fever,” she told, for example, a judge, after the collapse of Richard Barr’s class action. “One thing that I noticed was that he was like a wild animal. That is the only way I could describe him. After his vaccine he screamed if anybody touched him, and he cried day and night.”
She said the same to her member of Parliament: “high-pitched screaming” and “regressive autism.” And, later, on an internet radio show, she gave more detail of her son’s experience with MMR, which he received at fourteen months. “I took him the afternoon to have the vaccine done and, within a couple of hours, and I got him home, and he started having this awful high-pitched screaming,” she said. “And it’s like a cat scream. And I can still hear it. I wake up hearing it.”