8 months ago



Teddy 103 a group home

Teddy 103 a group home for developmentally disabled adults. They were out on the town watching their favorite movie and could hardly contain their glee at all the familiar characters. They laughed at the outlandish space aliens, they hissed at Darth Vader, they were tense when Luke Skywalker was about to launch his devastating missile. At the end of the show a young woman led the elderly gentlemen out of the theater like obedient children. Here again was time’s fracture, its veering off in separate directions. This potential incongruity in our lives is made apparent by the striking contrast of outward appearance and inner life. There is chronological time measured by clocks, and there is personal or lived time, measured by subjective experience. But there is also developmental time, which one becomes aware of only upon seeing its asynchrony in certain biologically vulnerable individuals. It is the incongruity of developmental lines that is so remarkable among adults with autism and AS. We are not made aware of this crack in the surface of time unless there is a fault in nature. Time is always at the heart of the matter. * * * ”What will happen to Teddy when he grows up?” Melody and Sean look at me expectantly. What can I possibly say to them about the incongruity of time—about the individual tragedies and triumphs of development? I cannot lie to them, but neither can I leave them without hope. The truth lies somewhere between the awful stories Melody read about in college and the overly optimistic pronouncements of definite cures that one reads about on the Internet or in the newspaper. Some children do remarkably well—that is true—better than anyone could have anticipated years ago. But normal? There is no evidence to support that view. How could one ever decide that anyway? And besides, normal is not all it’s cracked up to be. Justin, Jeremy, and Tom have some attributes that normal adults don’t have. They are gentle, kind, sometimes naive and innocent, and enjoy many simple, but exquisite, experiences in life. I hope my children will grow up with some of these attributes as well. I hope they too can sometimes see without metaphors, can see the patterns and structure of nature, the continuity of lines, whether composed of ants on the sidewalk or vines hanging from a tree or beads suspended from a ceiling. I hope they too can see the infinite variety of white paint in Robert Ryman’s works and the infinite variety of thunderstorms that Justin perceives (see Chapter 3). Wisdom is sometimes the capacity to act innocently, and courage is the capacity to act innocently

104 A MIND APART in the face of overwhelming circumstances to the contrary. It takes a perceptive observer to see the wisdom and courage in children and adults who struggle to make sense of the actions and motivations of other people. In a world buzzing with social exchange that takes place at the speed of light, one can only marvel at the adaptations that people with ASD make to survive. * * * Sean and Melody were well aware that the scientific literature (especially the older literature) on the outcome of children with autism makes for abysmally depressing reading. In the past parents were very likely to hear these prognoses, and unfortunately, this may still happen today. For example, a study published in the 1970s reported that seventy percent of adults with autism were institutionalized during the fifties and even up to the late sixties. Thankfully, this has changed, and most adults with autism live at home or in some kind of supervised setting. Those who are higher functioning can even live alone and look after themselves in some circumstances. In fact, the current literature on the outcome of autism is much more optimistic today given the availability of early intervention and the number of children with milder forms of the disorder who do not have as bad an outcome as the more severely impaired. Unfortunately, many professionals are still not aware of this new information and have continued to rely on the older, more discouraging, information. This has led to two common scenarios. The psychiatrist that Justin’s parents took him to as a child said, “He has autism, and you should make arrangements to have him institutionalized when he grows up.” Parents who have heard this kind of pronouncement know how indescribably devastating it can be. Clinicians often justify these comments by saying it’s better to make parents face reality than to allow them to hide behind denial. What they are forgetting, however, is that denial is what makes hope possible To deny the future, to choose not to see it for now is essential to the process of healing, the mourning involved in coming to terms with the fact that the child you had hoped for, dreamed about, and waited patiently for, is not the one you were given. With the new data on the effectiveness of interventions (both early and during childhood), there is no justification for being so discouraging about the future, especially among the higher-functioning group like those with AS. The psychiatrist that Tom’s parents consulted