9 months ago



Sally, Ann, and Danny

Sally, Ann, and Danny 131 In the end there is no rational explanation for the cause of ASD, at least not now. The genetic evidence that I alluded to earlier refers to what we know about the population of children with autism and ASD. Such theories say little about Sally, Ann, and Danny. It is about Robert that Ron and Carol want answers, not some abstract notion of “children with autism,” and I have so little to give. The parents of these children are innocent victims of their genetic background. The possibility of giving birth to a child with autism is the sword of Damocles they carried over their heads from childhood. These autistic susceptibility genes are nobody’s fault, but they are passed down from one generation to the next. Misfortune lies in wait for years, through our childhood, adolescence, and young adulthood. It causes grievous harm only when two people come together and create a new human being, usually a joyous and wonderful act. But misfortune and tragedy lie in wait. For these parents, their destiny is truly in their genes. This tragedy is senseless and lies just the other side of our daily lives. It happens to innocent people—a shop assistant and a factory worker, two lawyers. What have they done wrong? Is it a test? Is it a punishment for some earlier mishap or error? In the face of misfortune, we reason like children and personalize the accident as somehow caused by us. These births force us to confront the enormity of our biology. For these families, their genes are their masters to some extent because the genes determine a life history for them. The search for causes leads ultimately to the incomprehensibility of misfortune and tragedy. But this is not like a Greek tragedy, where the hero has committed a crime against the gods and must be punished. The misfortune is senseless, and to that extent evil lurks in our genes. We are all fallible, all prey to biological mishaps, potentially denied the joy of hearing a child’s voice in the house. Having three affected children makes it easier for Joan and Dave to accept that the disorder is genetic than it is for Ron and Carol. The enormity of the evidence is so overwhelming. This has allowed them to move on to treatment and to caring for these children while at the same time trying to create some semblance of normal family life. The relentless search undertaken by Ron and Carol for a cause has made it difficult for Robert to be fully involved in a comprehensive treatment program. All families with a child with ASD must live with the ambiguity of never knowing the exact cause of their child’s handicap. Ron and Carol

132 A MIND APART may continue to search for something concrete, hoping that would give them a key to unlocking the mystery of treatment. The difficulty is that there is no definite answer, so this search has the potential to go on forever without a successful resolution. For some families, continuing to search is a way of not accepting the diagnosis of autism. All answers are ambiguous, and this ambiguity is very hard to live with. But the ambiguity has to be experienced and tolerated. Only then can parents move on to mourning for the “lost child” and then searching for an evidencebased treatment program. Understanding that autism is caused by multiple genes that affect the development of the social brain does have implications for these evidence-based treatments, even if the connection may seem far-fetched at present. Because multiple genes are involved, interventions should target several developmental domains and include both biological and psychosocial methods. People often think that if a condition is caused by genes, it must be fixed and therefore can’t be open to interventions. That is simply not true. First, there are many genetic disorders that are eminently treatable and can even be cured. Second, interventions can be targeted to the gene products causing the problems, or the diet can be supplemented to make up for the genetic defect (think of phenylketonuria). Third, genes turn on and off during development. It is not inconceivable that once some of the genes that cause autism are discovered it may be possible to turn the gene off (if it is producing some abnormal protein) or on (if it is not functioning for some reason). Discovering the genetic causes of autism opens up the real possibility of finding biomedical interventions aimed at the underlying causes of the disorder that have more specific and long-lasting effects than the medications we currently have available.

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