3 weeks ago



Sally, Ann, and Danny

Sally, Ann, and Danny 125 There have been many alternative theories about the causes of autism. These include the idea that autism is caused by a fear of social interaction, with subsequent retreat from others, by a motor disorder that makes speech impossible, by a sensory abnormality that encourages withdrawal, by yeast infections, by allergies, by Lyme disease, by deprivation, and so on. The list goes on and on, and a new theory seems to crop up every two years or so. The attraction of many of these theories is that they suggest immediate cures such as (in order of the preceding “causes”) holding therapy (hold the child tight to get through to him or her), facilitated communication (hold the child’s hand while typing), auditory integration therapy (put headphones on the child and train him or her to hear other frequencies), antifungal medications, steroids, vitamins or secretin, or play and psychotherapy. Eventually every one has been discredited by good-quality scientific evidence or simply by the failure of the promised cures to materialize, in which case they just fade away. The problem with these alternative theories is that there is always some evidence to support them, though the various bits and pieces cannot be brought together into a convincing story based on the evidence rather than on conjecture. For example, there is no question that children with ASD have allergies; it is just that the rate of allergies is no greater than in children without ASD. There is some evidence that children with autism may have depressed immune function; this may indeed make them more susceptible to colds and the flu and may be associated with an increased frequency of allergies in some complicated way. But that is still a long way from saying that allergies caused autism in the child. In fact, it may be that the immune system is depressed because the brain of the child is dysfunctional in a number of ways. The brain exerts a powerful influence on the immune system, so the causeand-effect relationship may in fact be the opposite of what these explanations propose. It is also true that blood levels of certain proteins may be unusually high or low among children with autism. Changing the diet of a child with autism may lead to changes in these levels of proteins. But it is quite another thing to say that these children have a leaky gut that has allowed these substances to enter the body and specifically to poison those brain systems or that the change in diet caused the improvement in behavior. That is pure conjecture. It is just as likely, if not more so, that the unusual food preferences and the restricted diet of children with ASD cause the abnormal levels of proteins in the blood and even

126 A MIND APART the appearance of colitis in the gut. After a change of diet, the child may be better simply because he or she is handled in a different way, given more attention, a more structured daily routine, or because parents desperately want to see changes—any changes—rather than admit there was nothing they could do to help their child, a perfectly understandable motivation. What these “scientific” proponents of the leaky gut and allergies have learned is to start with a few isolated findings and then weave a convincing story to tie these facts together into a hypothesis. But people too often mistake a hypothesis for a fact, and the distinction between evidence and conjecture is often blurred. The proponents of these alternative theories fill in the gaps in knowledge with educated guesses and don’t consider other explanations that might conflict with their views. They use their authority as scientists or medical doctors to give their stories credence. The stories are good ones, on the surface they are logically coherent, and they have a beginning, a middle, and an end. That’s why they are so attractive: The experts speak with authority, they don’t admit to any shortcomings, and each problem has a ready answer. It’s just that all too often the evidence is simply not there to back up the guesses. It may be an overstatement, but perhaps parents should mistrust any source of information that sounds too authoritative or claims to know the answers about autism. A model postulating a simple cause and a simple effect makes for a convincing story. But the complexity of much of human diseases can no longer be captured by such simple models. With complexity comes ambiguity and uncertainty in the minds of parents. Into this state of mind, stories told by authorities (with little evidence to back them up) come creeping in and look more and more attractive. In contrast, the current understanding of what causes autism is so unsatisfying; the gaps in knowledge are not filled with guesses, but are left open for further discovery. Part of the difficulty for parents in coming to terms with autism is coming to terms with this ambiguity and uncertainty, tolerating it and going on. It’s all part of the process of accepting the diagnosis and moving on to finding treatments that are reputable and have been supported empirically by well-conducted studies. There are treatments that work; they have been published in respected journals, and parents can use them—see the Resources section for sources of more information. Accepting the diagnosis, the ambiguity about cause, and the fact that treatments cannot cure autism but can improve function and quality of life makes it possible, and imperative, to move on.