Ever since psychiatrist Leo Kanner identified a neurological condition he called autism in 1943, parents whose children have been diagnosed with the most severe form of the illness -- usually in the toddler stage, before age 3 -- have found themselves desperately searching for some way not to lose their children to autism's closed-off world. Unfortunately, such parents have often found misguided doctors, ill-informed psychologists and outright charlatans eager to proffer help.
Paul A. Offit, a pediatrician and the chief of infectious diseases at the Children's Hospital of Philadelphia, has gathered this sorry parade of self-styled samaritans for "Autism's False Prophets," an invaluable chronicle that relates some of the many ways in which the vulnerabilities of anxious parents have been exploited.
First, though, some basics about the disorder: According to the Autism Society of America, children and adults with autism "typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities." But there is a wide range of severity, hence the use of the umbrella term "autism spectrum disorder." At the less severe end of the spectrum, a diagnosis of Asperger's syndrome is sometimes applied to cases where there is no delay in children's acquisition of language. (The Austrian pediatrician Hans Asperger noted this milder form of autism in 1944, but it wasn't formalized as a diagnosis until the 1990s.)
For a disorder that has been noticed and described relatively recently, autism is quite common, affecting as many as one in 150 children. And the frequency of the diagnosis is increasing, according to the Centers for Disease Control and Prevention. The natural reaction to such an increase is: "Something must be causing it." The next step is: "Someone is to blame" -- followed by lawsuits, if only people can figure out whom to sue.
Autism's False Prophets
By Paul A. Offit, M.D.
(Columbia University Press, 298 pages, $24.95)
Dr. Offit notes two likely causes of the increase in autism diagnoses. One is that the definition of the disorder has broadened over time, so that children with mild symptoms are now being diagnosed when once they would have been regarded as merely quirky. That's certainly plausible. My son, now in his mid-30s, sought a formal evaluation a year ago, just to satisfy his curiosity about whether he's really an Aspy, as those with Asperger's sometimes call themselves. And indeed he is. But when he started school three decades ago, and his teachers worried about why he seemed to have trouble making friends, no one so much as mentioned a neurological problem as a possible explanation. Today they would, and they'd also have more useful guidance on what might help him (he seemed fine to us, his parents).
The second cause of the rise in autism diagnoses, according to Dr. Offit, is that in earlier times children with severe symptoms of what we now recognize as autism were more likely to be diagnosed, often incorrectly, as mentally retarded.
Just as autism is being found more often, so, it seems, are dubious explanations for the source of an illness that so far has defied medicine's attempts to find its origins. The parade of "false prophets" began lining up soon after the disorder was defined.
At mid-century, psychoanalyst Bruno Bettelheim set up a school in Chicago, and published a book, based on his theory that autism was precipitated by the "black milk" of mothers who treated children with a frosty emotional distance. His claims of successful treatment were widely disseminated; that the claims were fraudulent, not so much.
Next in Dr. Offit's parade are the advocates of "facilitated communication" from the 1970s and 1980s, who claimed that their approach enabled nonverbal children to express their true selves. Facilitated communication entailed having a "facilitator" support a child's hand or arm, helping the child type on a keyboard or use other devices. The method was easily debunked with a simple experiment: Don't allow the facilitator to see what the child is seeing and suddenly the child's communication skills evaporate. But facilitated communication flourished for years. Nobody thought to do the experiments until the children's true selves -- or at least their imaginative helpers -- began recounting false tales of sexual abuse.
In 1998, a British doctor named Andrew Wakefield joined the ranks of autism explainers, announcing in The Lancet that the disorder was caused by the triple vaccine for measles, mumps and rubella (MMR) given to young children. Only later did it emerge that the children he studied were clients of a lawyer who was searching for evidence he could use in a lawsuit. The disclosure prompted most of the co-authors of Dr. Wakefield's article to disavow it.
The MMR episode seems like just a prelude to the American manifestation of the childhood-vaccines panic of recent years. As Dr. Offit reports, the autism bogeyman is now the use of thimerosal, a preservative in vaccines. Thimerosal, as many studies in several countries have shown, is safe; whatever may be causing the increase in autism diagnoses, thimerosal isn't it. But in an excess of caution, federal agencies pushed to have thimerosal removed from almost all childhood vaccines.
The government's action was unnecessary but in itself not harmful. The problem was that removing the preservative seemed to confirm parents' fears: If thimerosal wasn't harmful, why get rid of it? The government's action did have the useful side effect of setting up a natural experiment. If thimerosal had been a cause of autism, the appearance of new cases should have begun to slow. In fact, autism diagnoses continued to climb.
Of course, the evidence rejecting thimerosal as a cause of autism had no effect on true believers, whose ranks include distraught parents and those beating the drums for their own patented remedies. Dr. Offit wonders why parents who distrust scientists and public health officials for refusing to admit that vaccines cause autism -- after all, they don't -- "haven't been similarly skeptical of the vast array of autism therapies, all of which are claimed to work and all of which are based on theories that are ill-founded, poorly conceived, contradictory, or disproved." Good question.
Ms. Seebach is a writer in Northfield, Minn.