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4 months ago

978-1572305441

autism

Sally, Ann, and Danny

Sally, Ann, and Danny 127 The problem is that the distinction between junk science, or “pseudoscience” (or even worse, movie-of-the-week science), and evidencebased science is often subtle, arising as it does out of the dual nature of scientific activity. At first the scientist conducts an experiment or sets out to collect information by reducing complex systems into simpler ones. The scientific method is essentially a reductionistic attempt to collect evidence that is as free of bias as possible. In a good experiment, similar results are found by other scientists doing similar work with similar populations and instruments. The more the evidence from one investigation fits in with other pieces of evidence and with other discourses, the more true it is. But the scientist recognizes that the reduction to simpler models leads inevitably to error. Error is an essential part of the world and can never be eliminated entirely. That is why certainty is never possible. The second activity is just as important and consists of interpreting those facts or findings. The disparate findings have to be brought together into a story that makes sense in terms of what we already know. Scientists build models of the biological systems under investigation. These models are undeniably situated in a particular context, embedded in a particular culture and language. That context will inevitably influence how the story is told. It’s impossible to understand the world outside of language. The essential difference between evidence-based science and junk science is the balance between empirical findings and interpretation. Simply put, junk science is more interpretation and storytelling than the evidence warrants. When the story involves a medical doctor valiantly trying to persuade the military–industrial–medical complex that the cure for autism is around the corner if only people would listen and wouldn’t let their vested interests interfere, then the story becomes movie-of-the-week science. But lest we become too self-satisfied with accepted forms of wisdom and reject dismissively and arrogantly these alternative theories, it’s important to remind ourselves that the first theory of autism espoused by the medical establishment was that parents cause autism in their children. In his original paper, Kanner noted that the parents of the eleven children he described very often showed somewhat unusual behavior themselves; they could be obsessive, aloof, hard driving, or artistic, or had poor social skills. It’s interesting to note that many of these individuals were psychiatrists or psychologists, though Kanner, who was otherwise so astute, missed the connection between occupation and unusual, rigid personalities! Kanner wondered whether the similarity in social impairment reflected a genetic contribution to the

128 A MIND APART disorder, a very perceptive observation. At that point in American medicine, however, the field of child psychiatry was dominated by the psychoanalytic orientation, so this observation of clinical similarity between parent and child was interpreted to imply that the social impairments in the parents, particularly the mother, caused the same social impairments in the child. In other words, the disorder was caused by impaired mother–infant bonding. At one point Kanner appeared to share this view, but he quickly repudiated it and returned to a more biological explanation. However, the die had been cast, and several hundred papers were written on how mothers cause autism by ignoring their children and treating them badly. The term “autism” fell into disfavor and the term “childhood psychosis” was used instead to reflect this orientation. The possibility that the original observation could be more parsimoniously explained by genetic factors was overlooked. Children with autism were subjected to psychotherapy, and the parents were taken into treatment and encouraged to explore their feelings of aggression toward their child. Special schools were set up, most notably by Bruno Bettelheim in Chicago, who coined the phrase “refrigerator mother.” He was later found to have falsified his qualifications when coming to the United States and was accused of abuse by some of the children resident at his school. Not surprisingly, the disorder was found very difficult to treat given these methods. In the late 1960s and ’70s the tide began to turn against this view. Scientists from outside the psychoanalytic camp began to report that children with autism were more often male than female, frequently had epilepsy, often suffered from profound developmental delay, had socalled “soft neurological signs,” electroencephalogram (EEG) abnormalities, and were the children of perfectly normal parents, not some pair of cold fish. None of these findings could be accounted for by the refrigerator mother model of autism. By the mid-’70s, autism was seen finally as a disorder of brain development by most credible authorities. It had taken thirty years, but the science of child psychiatry moved slowly in those days! Now it is hard to keep up with the ever-expanding literature on the biology of ASD. It is very instructive to read these early theories about what causes autism in light of what we know today. What is most striking is the certainty with which the experts spoke. They knew what caused the disorder. The possibility of error was never considered. Even though today we have a better understanding of what causes autism, we are also acutely aware of the limits of our knowledge, the possibility and inevita-