9 months ago



Justin 31 Justin’s

Justin 31 Justin’s love of sensation is common among children with autism and other ASDs. It’s part of a larger pattern of restricted interests and activities that represents one of the most important aspects of the diagnosis. In his original paper on autism, Leo Kanner (see Chapter 1) framed these behaviors as part of an “insistence on sameness.” The children he described in that paper were fascinated with letters and numbers, spinning blocks, and singing songs. They engaged in many fixed patterns of behavior that produced sensations of various kinds, and they had considerable difficulty accepting even trivial changes in their environment or in their routine. Sixty years after the publication of Kanner’s paper, we now believe that “insistence on sameness,” rather than being a single construct, is probably made up of at least three separate components: restricted interests and preoccupations, rituals, and a resistance to small changes in one’s environment and routine. To professionals and parents alike, it’s not always easy to tell which behaviors represent which of those components. Is insistence on lining up little toys on the carpet in a certain order the child’s way of pursuing a restricted interest in those toys, or is it a ritual? Is having to wear the same blue socks every school day a ritual or resistance to little changes in routine? If we focus only on the fact that all these behaviors make the child “different,” the distinction probably seems insignificant, even irrelevant. But it’s important to think of the three types of insistence-on-sameness behavior separately as each may have a different meaning for the child and require a slightly different intervention. Restricted interests and preoccupations serve as replacements for more typical forms of play. All children with autism and most with AS lack the capacity for highly imaginative and creative play. They rarely make up stories or use toys to enact those stories. Typical children will put little people in and take them out of a toy bus as it travels from stop to stop, or they may play out an extended sequence of grooming, bathing, and feeding a favorite doll. Without the ability to play imaginatively, the child with autism or AS pursues a set of circumscribed interests that seems to replace imaginative play and becomes a preoccupation. The child engages in these activities frequently, in exactly the same manner. I have known children who would watch a single video hundreds of times or line up a train set in exactly the same fashion, day after day. It’s not necessarily the object of the child’s interest that seems odd—there is nothing unusual about a girl liking fluffy toys or a boy being fascinated by sports statistics. Rather, it’s the intensity with which

32 A MIND APART the child participates in the activity that is so different from the habits of typical children and that may appear odd to adults. The child may become absorbed in an activity for hours without interruption (much longer than typical children can play) and protest if taken away or prevented from getting involved in it in the first place. A child with autism or AS is likely to ignore a parent’s requests to come for dinner or to get ready for school, not out of stubbornness, as may be the case with typical children, but out of an intense preoccupation with the interest at hand, almost as if the child were under the spell of a sensation. These restricted interests and preoccupations are different from other insistence-on-sameness behaviors in at least one important way: The latter are often associated with some distress for the child. Children with autism and AS feel anxiety when their routine or their environment is changed, so they avoid such changes strenuously. Both resistance to change and rituals are compulsive in nature; the child seems to have to do what he does to keep the world as constant as possible. It’s almost as if those with ASD feel nostalgia for a perfect world, and they try to re-create that experience over and over again. Rituals are fixed sequences of behaviors that are repeated endlessly in exactly the same fashion, like closing all the doors in the basement for no apparent reason or touching the stove every time the child passes through the kitchen. These rituals serve no obvious purpose and may also be a way of dealing with anxiety. For Justin, one ritual involved taking the same route to school day after day. If the bus driver had to change his route for some reason, Justin became extremely upset and caused a disturbance on the bus. He resisted change elsewhere too, becoming very agitated if he was not allowed to sit at the same place at the kitchen table during meals. Behavior like Justin’s can obviously create problems, because in our unpredictable world we are expected to adapt to changing circumstances, to go with the flow of things when doing so serves the greater good. But Justin can’t do that. Whether it’s the bus driver or a supervising adult at his group home, one can imagine how the response to resistance to change will depend on understanding the meaning of the behavior. If the bus driver understood that a change in route causes Justin great discomfort, would he throw him off the bus or call the police when Justin makes a scene? If a mother knew that a child has to wear blue socks to feel secure in going off to school in the morning, would she tell him to stop making a big deal out of such a little thing and send him on his way, as one might with a typical child? These are

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