Asperger Syndrome: General Information and Across the Lifespan (continued)

The course through elementary school can vary considerably from child to child, and overall problems can range from mild and easily managed to severe and intractable, depending upon factors such as the child's intelligence level, appropriateness of management at school and parenting at home, temperamental style of the child, and the presence or absence of complicating factors such as hyperactivity/attentional problems, anxiety, learning problems, etc.

The Upper Grades

As the child with AS moves into middle school and high school, the most difficult areas continue to be those related to socialization and behavioral adjustment. Paradoxically, because children with AS are frequently managed in mainstream educational settings, and because their specific developmental problems may be more easily overlooked (especially if they are bright and do not act too "strange"), they are often misunderstood at this age by both teachers and other students. At the secondary level, teachers often have less opportunity to get to know a child well, and problems with behavior or work/study habits may be misattributed to emotional or motivational problems. In some settings, particularly less familiar or structured ones such as the cafeteria, physical education class, or playground, the child may get into escalating conflicts or power struggles with teachers or students who may not be familiar with their developmental style of interacting. This can sometimes lead to more serious behavioral flare-ups. Pressure may build up in such a child with little clue until he then reacts in a dramatically inappropriate manner.

In middle school, where the pressures for conformity are greatest and tolerance for differences the least, children with AS may be left out, misunderstood, or teased and persecuted. Wanting to make friends and fit in, but unable to, they may withdraw even more, or their behavior may become increasingly problematic in the form of outbursts of noncooperation. Some degree of depression is not uncommon as a complicating feature. If there are no significant learning disabilities, academic performance can continue strong, particularly in those areas of particular interest; often, however, there will be ongoing subtle tendencies to misinterpret information, particularly abstract or figurative/idiomatic language. Learning difficulties are frequent, and attentional and organizational difficulties may be present.

Fortunately, by high school, peer tolerance for individual variations and eccentricity often increases again to some extent. If a child does well academically, that can bring a measure of respect from other students. Some AS students may pass socially as "nerds," a group which they actually resemble in many ways and which may overlap with AS. The AS adolescent may form friendships with other students who share his interests through avenues such as computer or math clubs, science fairs, Star Trek clubs, etc. With luck and proper management, many of these students will have developed considerable coping skills, "social graces," and general ability to "fit in" more comfortably by this age, thus easing their way.

Asperger Children Grown Up

It is important to note that we have limited solid information regarding the eventual outcome for most children with AS. It has only been recently that AS itself has been distinguished from more typical Autism in looking at outcomes, and milder cases were generally not recognized. Nevertheless, the available data does suggest that, compared to other forms of Autism/PDD, children with AS are much more likely to grow up to be independently functioning adults in terms of employment, marriage, and family, etc.

One of the most interesting an useful sources of data on outcome comes indirectly from observing those parents or other relatives of AS children, who themselves appear to have AS. From these observations it is clear that AS does not preclude the potential for a more "normal" adult life. Commonly, these adults will gravitate to a job or profession that relates to their own areas of special interest, sometimes becoming very proficient. A number of the brightest students with AS are able to successfully complete college and even graduate school. Nonetheless, in most cases they will continue to demonstrate, at least to some extent, subtle differences in social interactions. They can be challenged by the social and emotional demands of marriage, although we know that many do marry. Their rigidity of style and idiosyncratic perspective on the world can make interactions difficult, both in and out of the family. There is also the risk of mood problems such as depression and anxiety, and it is likely that many find their way to psychiatrists and other mental health providers where, Gillberg suggests, the true, developmental nature of their problems may go unrecognized or misdiagnosed.

In fact, Gillberg has estimated that perhaps 30-50% of all adults with AS are never evaluated or correctly diagnosed. These "normal Aspergers" are viewed by others as "just different" or eccentric, or perhaps they receive other psychiatric diagnoses. I have met a number of individuals whom I believe fall into that category, and I am struck by how many of them have been able to utilize their other skills, often with support from loved ones, to achieve what I consider to be a high level of function, personally and professionally. It has been suggested that some of these highest functioning and brightest individuals with AS represent a unique resource for society, having the single mindedness and consuming interest to advance our knowledge in various areas of science, math, etc.

Thoughts on Management in the School

The most important starting point in helping a student with Asperger syndrome to function effectively in school is for the staff (all who will come into contact with the child) to realize that the child has an inherent developmental disorder which causes him/her to behave and respond in a different way from other students. Too often, behaviors in these children are interpreted as "emotional," or "manipulative," or with some other term that misses the point that they respond differently to the world and its stimuli. It follows that school staff must carefully individualize their approach for each of these children; it will not work to treat them just the same as other students. Asperger himself realized the central importance of teacher attitude from his own work with these children. In 1944 he wrote, "These children often show a surprising sensitivity to the personality of the teacher" They can be taught, but only by those who give them true understanding and affection, people who show kindness towards them and, yes, humour "The teacher's underlying emotional attitude influences, involuntarily and unconsciously, the mood and behavior of the child."

Although it is likely that many children with AS can be managed primarily in the regular classroom setting, they often need some educational support services. If learning problems are present, resource room or tutoring can be helpful, to provide individualized explanation and review. Direct speech services may not be needed, but the speech and language clinician at school can be useful as a consultant to the other staff regarding ways to address problems in areas such as pragmatic language. If motor clumsiness is significant, as it sometimes is, the school Occupational Therapist can provide helpful input. The school counselor or social worker can provide direct social skills training, as well as general emotional support. Finally, a few children with very high management needs may benefit from the assistance of a classroom aide assigned to them. On the other hand, some of the higher functioning children and those with milder AS, are able to adapt and function with little in the way of formal support services at school, if staff are understanding, supportive, and flexible.

There are a number of general principles of school management for most children with PDD of any degree which apply to AS, as well:

• The classroom routines should be kept as consistent, structured, and predictable as possible. Children with AS often don't like surprises. They should be prepared in advance, when possible, for changes and transitions, including things such as schedule breaks, vacation days, etc.
• Rules should be applied carefully. Many of these children can be fairly rigid about following "rules" quite literally. While clearly expressed rules and guidelines, preferably written down for the student, are helpful, they should be applied with some flexibility. The rules do not automatically have to be exactly the same for the child with AS as for the rest of the students–their needs and abilities to conform are different.
• Staff should take full advantage of a child's areas of special interest when teaching. The child will learn best and show greatest motivation and attention when an area of high personal interest is on the agenda. Teachers can creatively connect the child's interests to the teaching process. One can also use access to the special interests as a reward to the child for successful completion of other tasks or adherence to rules or behavioral expectations.
• Most students with AS respond well to the use of visuals: schedules, charts, lists, pictures, etc. In this way they are much like other children with PDD and Autism.
• In general, try to keep teaching fairly concrete. Avoid language that may be misunderstood by the child with AS, such as sarcasm, confusing figurative speech, idioms, etc. Work to break down and simplify more abstract language and concepts.
• Explicit, didactic teaching of strategies can be very helpful, to assist the child gain proficiency in "executive function" areas such as organization and study skills.
• Insure that school staff outside the classroom, such as physical education teachers, bus drivers, cafeteria monitors, librarians, etc., are familiar with the child's style and needs and have been given adequate training in management approaches. Those less structured settings where the routines and expectations are less clear tend to be difficult for the child with AS.
• Try to avoid escalating power struggles. These children often do not understand rigid displays of authority or anger and will themselves become more rigid and stubborn if forcefully confronted. Their behavior can then get rapidly out of control, and at that point it is often better for the staff person to back off and let things cool down. It is always preferable, when possible, to anticipate such situations and take preventative action to avoid the confrontation through calmness, negotiation, presentation of choices, or diversion of attention elsewhere.

A major area of concern as the child moves through school is promotion of more appropriate social interactions and helping the child fit in better socially. Formal, didactic social skills training can take place both in the classroom and in more individualized settings. Approaches that have been most successful utilize direct modeling and role playing at a concrete level (such as in the Skillstreaming curriculum). By rehearsing and practicing how to handle various social situations, the child can hopefully learn to generalize the skills to naturalistic settings. It is often useful to use a dyad approach where the child is paired with another student to carry out such structured encounters. The use of a "buddy system" can be very useful, since these children relate best 1-1. Careful selection of a non-Asperger peer buddy for the child can be a tool to help build social skills, encourage friendships, and reduce stigmatization. Care should be taken, particularly in the upper grades, to protect the child from teasing both in and out of the classroom, since it is one of the greatest sources of anxiety for older children with AS. Efforts should be made to help other students arrive at a better understanding of the child with AS, in a way that will promote tolerance and acceptance. Teachers can take advantage of the strong academic skills that many AS children have, in order to help them gain acceptance with peers. It is very helpful if the AS child can be given opportunities to help other children at times.