8 months ago



Justin 29 Justin looked

Justin 29 Justin looked at me as if I were the stupidest person on earth. “No,” he said. “They all sound quite different.” But he did not elaborate. I asked him to bring some tapes to our next appointment, and we spent the hour listening to them. He was right; all storms do sound different. He pointed out the variation in the peals of thunder. There were differences in volume, of course, but I had never heard the wide range of pitch and rhythm. How amazing! Justin has the capacity to hear things that I am incapable of hearing naturally. It is this attention to perceptual detail that is so remarkable. But in a more general sense, it’s the pleasure that the intricacy of detail brings to people with ASD that is so extraordinary. Children with ASD tend to love sounds, even more than typical children enjoy music. It is pure acoustic sensation, the rhythm and pitch that attracts and holds their attention. The words are of little interest, and the emotions conveyed in the lyrics are quite irrelevant. Asking the child with autism the meaning of a song will evoke little response over and above a repetition of the lyrics. I remember one little boy with AS who enjoyed drumming so much that he spent hours in the garage imitating the sound of the rain falling on the roof by banging on a set of boxes of different sizes. I love music too, and to that extent I am not immune, at least intellectually, to the concept of experiencing pleasure at hearing pure sounds. I can even enjoy listening to very modern atonal music for short periods of time. But the music must have a narrative of some sort. There has to be a reference to something outside the acoustic sensation; the music must evoke emotions, images, or ideas. Without these external referents, I get bored quickly. My attention span for pure acoustic perception is very limited. I can force myself to pay more attention, but the effort required is substantial, and I quickly become exhausted. In my experience, most parents of children with ASD are just as mystified by their child’s fascination with perceptual detail and quickly become bored by paying attention to a single repetitive stimulus for long periods of time. For Justin, listening is effortless, and he is never bored by sound. Thunder is a compelling experience, not a nuisance to be avoided. The Dutch novelist Cees Noteboom writes that “boredom is the physical sensation of chaos.” In precisely that way—as a physical sensation— thunder is a deep and meaningful experience for Justin. It is the antithesis of chaos; it is structure, routine, and the perception of ordered meaning. As such, it provides Justin with genuine pleasure. Justin gets bored by other things, to be sure. But these are often the

Free ebooks ==> 30 A MIND APART things that so interest ordinary people: novels, TV drama (but not sitcoms or comedy like the Three Stooges, which he loves), stories of general interest, and history; in other words, events that involve people, their social relationships, and their emotions. That is boring for Justin, not the sound of rain and thunder. “How could anyone consider that boring?” he asks me innocently. I suspect there must be a neurology of boredom; there must be a place or, more precisely, a set of neural circuits, in the brain where boredom is experienced. The function of that set of brain circuits must be altered in some subtle way in people with ASD so that they never tire of pure repetition. Justin sits across from me today as he has on and off for the last fifteen years. He twists his curly hair and blinks frequently. He has that fixed smile that never wavers even though we talk about both happy and sad things. No matter the subject, the smile remains very engaging. Justin has a lot of anxieties today—about being too physically close to people, about harming people, about his bodily functions, his stomach, his weight, his appearance, whether he has body odor, and so on. Some years ago, he developed a true obsessive–compulsive disorder that centered around cleanliness. It is not uncommon for higher functioning adolescents and adults with ASD to develop this type of anxiety disorder. Justin experienced frequent and troubling intrusive thoughts that he was “dirty” and “smelly.” He would take frequent baths and would wash his hands many times a day. These anxieties and worries were an added disability for Justin since they also made him extremely irritable. He was often difficult to live with and very unhappy. He would lash out at other people in the group home where he lived , ask the same questions of others over and over again, and pace around the building. We were able to deal with these symptoms with medication, but paradoxically his interest in sounds decreased as a result. “They don’t turn my crank as much,” he announced sadly to me one day. “I don’t feel any life inside me anymore. I’m a dead battery.” This occasionally happens when people with ASD go on medication, and it certainly was a problem for Justin. We tried to take him off the medication, but he could not hold a job or live semi-independently. It was a difficult trade-off. Eventually Justin decided to take the medication in spite of the way it made him feel about the beauty of sounds, but we were able to lower the dose somewhat so that he still retained some pleasure. * * *

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