The Real Damage Wrought to Autistic Individuals by Andrew Wakefield
Andrew Wakefield is the British doctor who, in a 1998 study, claimed that the measles vaccine might be linked to inflammatory bowel disease, and that this might be connected to autism. That study was retracted last year by The Lancet. Earlier this year, the British Medical Journal (BMJ) published a detailed report about how the case against the MMR was the result of “deliberate fraud” on Wakefield’s part; not only was he being paid by lawyers who were representing families involved in vaccine litigation, but five of the twelve children studied were found to have developmental delays that pre-existed their receiving the MMR vaccine.
None of this being widely known at the time Wakefield announced his findings at a press conference in London in 1998, a massive worldwide scare about vaccines and about the MMR resulted. Despite scientific studies refuting a vaccine-autism link, many parents remain fearful of immunizing their children, with the result that cases of such infectious diseases as whooping cough and measles have been on the rise. Further, many parents of autistic children, believing that their children have been “made autistic” by some environmental agent like a vaccine, have sought out experimental and often costly biomedical and alternative medicine treatments for their children, with varying results.
Wakefield is widely blamed for setting off an international public scare about vaccines. After reading a recent article about him as an “autism guru” in the New York Times Magazine, I have been thinking that the real damage he has wrought is upon autistic individuals and those who care for them, by pinpointing vaccines as the culprit and not taking a far broader view about the gastrointestinal issues that more than a few autistic children suffer from.
The author of the New York Times Magazine, Susan Dominus, visited Wakefield in the Austin, Texas, suburb where he now lives with his wife, Carmel, and four children. Wakefield is no longer able to practice medicine in the UK after the General Medical Council charged him with “serious professional misconduct” over ethical issues and struck him off the medical register.
Dominus describes Wakefield as a man who has the “calmness of the self-certain, ready with a counterargument for every concern.” Wakefield still believes that the MMR “was causing” the children in The Lancet paper to become autistic and sees the attacks against him — by scientists, autistic self-advocates, parents of autistic children (myself included) — as so much “affirmation;” the more he has to defend his theory, the “more important he seems to consider it — so important that powerful forces have conspired and aligned against him.” Two parents who are ardent Wakefield supporters and whom I’ve long been aware of via email discussion lists and the Internet, Michelle Guppy and J.B. Handley, regard Wakefield as on a par with Nelson Mandela and Galileo; Guppy indeed tells Dominus:
“Be nice to him or we will hurt you.”
But what’s most revealing in Dominus’ article is what other scientists who think there’s a link between autism and gastrointestinal issues have to say:
Wakefield’s big theory — that M.M.R. causes a bowel disorder, which he calls autistic enterocolitis, that then causes autism — has been dismissed by mainstream medicine. And a position paper published last year in Pediatrics also stated that available research did not support the use of casein- and gluten-free diets in the general autistic population (the diets, adapted in extreme measures, can cause health complications of their own). But Timothy Buie, a pediatric gastroenterologist at Harvard Medical School and one of the paper’s authors, felt that the press ignored other key implications in their findings: that there might be a subsection of autistic patients who would benefit from dietary interventions and that the role of the immune system in gastrointestinal dysfunction in children with autism “warrants additional investigation.”
Buie makes it clear that he is no fan of Wakefield’s; but he does say that Wakefield was a kind of pioneer in disseminating certain useful ideas about autism. Wakefield’s least controversial conviction may be the belief that some symptoms of autism — repetitive body movements, leaning over furniture, self-injury — might be symptoms of gastrointestinal distress in an autistic population unable to verbalize that discomfort.
Certainly many autistic individuals have great difficulties communicating. My own son Charlie can talk a little, but he does not use language to communicate what he is thinking or feeling, including headaches, a loose tooth, a sore in his mouth and stomach distress:
Pat Levitt, a neuroscientist at the Keck School of Medicine at the University of Southern California and an autism researcher in whom the National Institute of Mental Health has invested heavily, is also now interested in the role of gastrointestinal dysfunction in patients with autism. He has found a gene variant that is more prevalent in children who have autism and gastrointestinal problems than it is in children who have autism but no digestive irregularities. Levitt does not believe that a faulty gut is the cause of autism, as Wakefield theorized, but that the two problems might develop, in some subset of people on the autism spectrum, in tandem, each a result of a flawed interaction of genes and environment. He does not believe — as some of Wakefield’s followers hoped — that by treating an intestinal malady, he will cure the underlying autism. “But is it the case that if you have GI problems, that can exacerbate your child’s behavioral issues?” says Levitt, whose recent work has not yet been replicated. “The answer is absolutely yes.”
As Levitt and Buie both note, parents’ concerns about their autistic children’s gastrointestinal problems have too often been dismissed, “partly because doctors associated those concerns with quackery and vaccine fears and the false hope that a diet could cure the autism itself.” My son’s own neurologist has noted that more than a few of the many autistic children he sees have gastrointestinal problems. In Charlie’s case (and, as I understand, in some of the children also seen by his neurologist), the gastrointestinal problem is not the diarrhea that Wakefield and others have noted, but, well, the opposite problem, constipation.
It was Charlie’s neurologist who recommended a supplement to help address this particular issue. The supplement has helped though only to an extent as Charlie, like many autistic children, is extremely picky, ritualistic and obsessive about what he eats. Despite many and constant efforts on our part and on the part of his teachers, Charlie has a quite limited diet that is short on things like fiber. In other words, there are some things about autism — like obsessive-compulsive tendencies and a preference for things being the same always — that make gastrointestinal problems more likely.
I’m very glad to learn about Buie’s and Levitt’s research and grateful for the open-mindedness of Charlie’s neurologist. I also remained saddened by Wakefield’s continued pronouncements about autism’s causes and treatment for it. I’m writing this post at 2am because my son spent much of yesterday in severe stomach distress that, happily, was over at night, though after a long day that started with some “challenging behaviors” and ended with a plumbing mess and a watery iPad, both of which needed attending to before I could write this (don’t worry; everything is cleaned up and working).
As Levitt says, Wakefield’s “bad science” has us back “set us back 10 years” — at the very least– in finding real solutions to help autistic individuals.
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