But I Can't Live Without It! Managing the Fixations of Children with Asperger's Syndrome
If you are the parent of a child with Asperger's syndrome, you may have heard your child exclaim, "But I can't live without it!" on more than one occasion. You may also notice that the book bag you just saw him pack is suddenly filled with a few more Harry Potter books. Or perhaps that suitcase for the trip to grandma's house has a Gameboy in it, when she promised she would leave it at home this time.
Fixations or perseverations with certain topics or objects, ranging from books, video games, or trains to history, movies, or any number of other subjects, are a classic symptom of Asperger's syndrome. In addition to impairments in social functioning, the Diagnostic and Statistical Manual, Fourth Edition (DSM-IV), lists as a characteristic of the disorder restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
- encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus;
- apparently inflexible adherence to specific, nonfunctional routines or rituals;
- stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements); or
- persistent preoccupation with parts of objects.
While these fixations must be understood and accepted as part of the disorder, they are also coping mechanisms that children with Asperger's use to escape social anxiety, says Aaron McGinley, summer camp program manager at Talisman, a North Carolina program offering summer camps and semester-length programs for children ages 8 to 21 with learning disabilities, ADD and ADHD, Asperger's syndrome, and high-functioning autism.
For example, video games are becoming an increasingly common interest among young people with Asperger's. Although the virtual world and games like "Second Life" can be a great place for kids to practice social skills, make friends, and have fun, the interest in video games can quickly become an unhealthy and even dangerous obsession.
For kids who get picked on all day at school or feel ostracized and out of place in their everyday lives, it's soothing to come home and play video games for hours. In the safe haven of online gaming, young people with Asperger's can isolate themselves from real-life people and the complexities of face-to-face interactions.
However, according to McGinley, the social setting in online gaming or chat rooms is unrealistic and far more predictable than real-life social situations. "While social conversations in real life are highly complex and unpredictable, online gamers share a common and simple language for communicating," he says.
Since most online interaction occurs through typing, there is time to think about a response, and the response can be given in symbols and phrases without regard for facial expressions or nonverbal cues. In addition, curse words, rude remarks, and hurtful jokes may be considered socially acceptable online, but they will not be welcome responses in the real world. This disjunction between socially acceptable interactions in the virtual world and the real world can be terribly confusing to young people with Asperger's who already struggle to understand basic social conventions.
A Parent's Dilemma
Parents of a child with Asperger's are thus faced with a dilemma: Do we limit our child's time spent doing the activities that interest her most and run the risk that she will withdraw even more, or do we allow her unfettered access to things like video games and science fiction/fantasy books and movies despite the obvious social repercussions?
According to McGinley, it's important for parents to find the balance between accepting their child's unique interests, and encouraging their child to develop social skills and additional interests that might take him outside of his comfort zone. By granting unlimited access to video games and other fixations, McGinley believes parents offer their children nothing more than a quick fix. The perseveration may be a convenient coping skill for facing the hardship of a long, difficult day at school but it will not be the healthiest path into adulthood.
Young people with Asperger's need to be challenged to explore other interests and find healthier coping skills, explains McGinley. It's easy to use video games and other antisocial outlets to cope, but easier isn't usually better.
"If young people with Asperger's aren't encouraged and helped to develop social skills and independent living skills, there will be a direct impact on how many friends they have, and how successful they are in school and on the job later in life," states McGinley. "They may be soothed in the short term, but that deep underlying desire to make friends or have a boyfriend or girlfriend will remain a source of constant dissatisfaction and further isolation."
The Importance of Compromise
The experts at Talisman camps and programs understand that addressing fixations is difficult for parents. On the one hand, video games and other interests encourage more social interaction than kids with Asperger's would ordinarily have, but on the other hand, it's not the kind of social interaction that prepares them for life.
McGinley recommends that parents encourage their child to develop interpersonal skills off of the computer, and set limits around how often their child with Asperger's uses or talks about their fixations. He also advises parents to offer incentives to their child to balance their time spent focused on the fixation and time spent doing social activities. For example, if a child is passionate about video games, a parent could agree to allow the child a certain amount of time to play each week in exchange for the child's participation in an after-school activity.
At Talisman's summer camps and Talisman Academy's academic semester program, the staff knows how to negotiate each child's fixations and find the appropriate balance. For example, if a child wants to take the entire series of Harry Potter books on an experiential learning trip, the staff will explain that the books are too heavy and the child will be permitted to choose only one favorite book. This way, the staff acknowledges how important the particular interest is to the child and offers him a choice in the process, while setting clear and fair limits and ensuring the student will still get the social interaction he needs out of the program.
Similarly, if a child insists on bringing his portable video game or DVD player to the Talisman program, McGinley encourages parents to reach a compromise. For example, you can bring it and use it on the plane trip, but when you arrive at the program, it will be held in the office.
When young people with Asperger's have a clear structure around when they can engage in their particular interest, they are more willing to accept rules limiting its use. At the Southeast Journeys academic semester program, children are allowed to read their favorite book at designated times, but they are not permitted to bring the book to meals. This way, the students learn that their interests are perfectly acceptable when explored in socially appropriate ways, places, and times.
If you are looking for a summer or academic program for your child, McGinley recommends communicating with each prospective program about its policies and expectations. If a program has zero tolerance for Pokemon cards or comic books, a child who is interested in those things won't be a match.
The fixations and perseverations of children with Asperger's fulfill a need in their lives that will likely never disappear completely. However, their usefulness in real life is extremely limited. Everyone needs an occasional break from the rigors of daily life, but children with Asperger's depend on their parents and programs like Talisman to set limits around these fixations and offer guidance in navigating the complex social world around them. By making a plan and following through with it, you accept your child for the unique being she is while giving her the tools she needs to live up to her full potential.