First, Do No Harm
The science simply hasn't progressed to the point where we can make definitive statements about the causes of autism (and we may be talking about many similar conditions with separate and distinct causes, given the breadth of the diagnostic criteria). In the absence of clear definitions and solid peer-reviewed research studies, we end up arguing from our personal experiences. Somebody will declare, "I have five autistic family members, so it can't be anything but genetic." Someone else will argue just as vehemently, "There's no history of autism in my family, and my child never had any autistic behaviors until he got a certain vaccine, so that must be the cause." And all around the mulberry bush we go.
What can be done when science gives us so little guidance? It's instructive to look at the teachings of an ancient Greek physician, Hippocrates, best known as the author of the Hippocratic Oath. He founded a medical school where he stressed the importance of thorough clinical inspection and observation. The Hippocratic Oath, still used in various modified forms today, requires physicians to seek only the good of the patient, to maintain confidentiality, to avoid conflicts of interest, to refrain from performing dangerous procedures as to which they lack professional expertise, and to "first, do no harm."
Hippocrates was a wise fellow. He understood that there are limits to medical knowledge and that we must proceed very cautiously when we go beyond those limits. Although modern medical science has advanced far beyond the simple herbal potions and crude surgeries of Hippocrates' day, a great deal of uncharted territory remains, and we still need to be careful.
Because so little is known about autism (and not all modern medical practitioners are as careful and ethical as Hippocrates), parents of autistic children should thoroughly research any drug, dietary supplement, conventional or alternative medical treatment, behavioral therapy, etc., that they are considering. Drug reactions and medical errors are a leading cause of death in industrialized countries. Although some "natural" diets and supplements may be safer than pharmaceutical drugs, no alternative treatment should ever be assumed to be risk-free.
The emotional effects of any treatment on a particular child, as well as the physical effects, should be considered. If a child repeatedly resists taking a particular drug or undergoing a particular treatment, it probably is not right for that child, even if it does not appear to be causing physical harm. In many cases, an autistic child who is experiencing pain or physical discomfort will not be able to communicate this fact effectively. Moreover, prolonged emotional stress can lead to painful physical conditions such as gut problems, as well as behavioral issues. Long-term emotional damage can result. To put it more simply, a child shouldn't have to grow up having medication forced down his or her throat every day. (I know a woman with asthma whose stepfather forced her to take her medication by standing over her brandishing a switch every day while she lay sobbing on the floor, which surely made her asthma much worse, in addition to the emotional trauma.)
The language used to describe treatments and therapies, as well as to describe autism in general, is another area where parents need to be careful. A child who is often described as sick, damaged, defective, and so forth, will come to internalize these views and to feel that he is good for nothing. If, on the other hand, the parents talk about the treatments and therapies as an ordinary part of life and avoid using disease terminology, the child is likely to have a much better self-image. Even when the child is not around, parents should be careful about the language they use to describe autism because it affects how society will treat their child. For example, Internet forums and other websites that dwell on the negative characteristics of autism are not just harmless venting like real-life conversations with friends; because they are read worldwide, they greatly amplify society's prejudices against the autistic population.
Parents also should consider carefully whether treatments or therapies are in fact necessary for the child's well-being. To the extent that natural behavioral differences are not detrimental, they should be accepted. Where behavioral problems need to be remedied, parents should consider whether the desired results can be accomplished by changing the child's environment, rather than changing the child to fit into a particular environment. Every child should be able to grow up believing that he or she is a worthwhile human being, not a problem to be solved.
First, do no harm.
Labels: families with autistic children