10 months ago



Sally, Ann, and Danny

Sally, Ann, and Danny 129 bility of error, and the effect of context and history on interpretation. But the historicity of scientific interpretation does not render scientific truth meaningless. Parents often are confused by this conflict of interpretations— genetics on the one hand and the leaky gut on the other. If the theory we believed in the past (that parents can cause autism) is untrue, what confidence can parents have in what scientists say today? How can they tell the difference between evidence and junk science when there is so much conflicting information on the Web, at conferences, in newsletters, in the media, and by word of mouth? The key is in the language. Skepticism is the heart and soul of good science. The language of good science is iconoclastic, argumentative, and critical. Nothing is accepted as true unless all the findings are accounted for and the interpretation is true to the evidence. The story must cohere with other discourses and narratives. As such it is a never-ending story; the whole story can never be told, because every new finding goes deeper and deeper into the heart of the matter. The British author Jeanette Winterson writes that the truth is precisely what we do not know—all truths are partial truths. In science, as in life, the more we know, the less we understand, or, perhaps more accurately, the closer we come to the mystery of things. The source of the mystery recedes farther and farther from our grasp as we approach it. It is like going up a river: Seeing one bend in the river only makes one aware of the next bend around the corner. The problem is that good science is hard to access for most parents. It’s published in high-impact journals, and the language is often technical, full of jargon, and not easy to digest. Publications are often communications between scientists and are not meant to be read by parents. That’s unfortunate, and there must be a way for parents to obtain the most up-to-date evidence-based information. The World Wide Web is certainly accessible to many, but there is so much junk science on it that parents are all too often led astray. At the very least, parents should avoid all Websites that solicit business, whether it is clients for class action suits, consultations to help their children, medications, or any other product. Probably the best place to start are government Websites that have health information or public health libraries on the Web. These will also have links to other sites such as parent support groups or other sources of reputable information. As a clinician answering questions about what causes ASD, I am very much aware of the enormous gulf between my aspirations to tell as complete and true a story as possible and the limitations of our methods

130 A MIND APART to unravel these mysteries. For parents, this gulf is painful to experience and to tolerate. It can sometimes drive parents to years of fruitless exploration. The temptation to weave a convincing story to help parents understand their tragedy is strong. After all, parents have come to the expert for an informed opinion. I recognize this is a powerful encounter, and I am keen not to disappoint them. I am painfully aware of the limits of science, but I try not to transfer that anxiety to parents and not to pull any junk science out of the hat at the last moment to make them feel better. Part of the necessary therapeutic alliance is trust and respect. As the doctor who makes the diagnosis I am supposed know what I’m talking about. But the story I have to tell does not have an overall narrative, a grand and logical structure. It’s a pastiche, a collage of isolated bits of information. It is a truncated narrative; not all the pieces fit together. Each part of the story is told from one particular perspective, and to be faithful to the science, disparate narratives need to be brought together. But the overall story is unsatisfying at the end. Ultimately it does not cohere. It’s like a modern novel, difficult to read. The allergists and leaky gut doctors and scientists have no such qualms. They cheerfully ignore the abyss between evidence and interpretation in their stories and plow ahead, writing stories that cohere, filling in the gaps with suppositions and guesses, confident that what they are saying can accommodate any intrusion of evidence. They glide over these gaps with facility. I envy their brazen confidence. I envy their ability to communicate a story that makes sense. Good science is located at the holes in knowledge. It lives in the spaces between findings and stories. It explores them, lives in them, and celebrates them. It is the disjunction that fascinates the good scientist and distinguishes him or her from the junk scientist. The writer Annie Dillard says that the scientist is like the tightrope walker, who must never look down for fear of becoming aware of the emptiness of the foundation—the lure of simple explanations, the impact of the method on the findings, of the context on the interpretation of results. The point is that not all interpretations are equal, not all stories are the same, not all evidence is of equal value. There are rules of evidence. We can tell good science from junk science once we realize that good science is not the search for truth but an attempt to learn the error of our ways. * * *