Asperger Syndrome (AS), recently the focus of a number of news articles, movies, books, and television shows, is typically viewed as a condition on the high end of the Autism Spectrum. Although people with AS are of average or high intelligence, they have a qualitative impairment in social interaction. They may have difficulty in using and interpreting non-verbal behaviors, such as facial expressions and body language, as well as verbal conventions, such as conversational turn-taking, all of which help us understand the nuances of social interaction. People with AS usually have some pattern of restricted, repetitive and stereotyped behaviors, interests, and activities.
To gain more information regarding AS, its characteristics, diagnosis, and implications for education and treatment, Dr. Lynda Geller, Clinical Director of the Asperger Institute of the NYU Child Study Center was interviewed by Dr. Anita Gurian, Executive Editor of AboutOurKids.org.
To what do you attribute the recent explosion of information regarding AS?
Movies and television shows such as Boston Legal and others have portrayed individuals with AS in a sympathetic and human way. In addition, books written by and about individuals with AS have led to increased understanding. In general, people are slowly becoming more aware and more sensitive to individuals who are socially different. However, although many more people have heard of AS, we're far from knowing what to do about it.
What is the most significant recent change in understanding AS?
There's an explosion in brain research underway. We now know that AS is a brain difference and its outcome depends on the way this brain difference is affected by the experiences one has in life. For example, one of the hallmarks of AS is social difficulty, which may be due to a number of reasons. A child may have trouble because he doesn't process what's happening around him socially, either from a visual perspective—he doesn't recognize faces or visual expressions—or from an auditory perspective—he doesn't process what he hears quickly enough. The outcome of these brain differences, however, depends on personal experience. Because he doesn't jump in and do the social things that children typically do, children start to distance themselves and may reject him, and as a result by the time he reaches the teen years he may have had fewer and fewer social experiences to learn from. The longer this goes on the more isolated he becomes. What happens is an interaction effect; starting out with brain differences, the outcome depends on the social experiences that a child is capable of or allows himself to have and that others allow him to have.
When is AS generally diagnosed?
AS can be diagnosed at almost any age, but in my experience I find that the diagnosis usually occurs when the child has to transition to a new aspect of life that's too stressful to be easily accomplished. Most typically children between 8 and 11 years receive the diagnosis. Although children considerably younger may be diagnosed, it's easier to rationalize by thinking, well, he's a little shy, a little temperamental, he's just a little bit late in social skills, a little bit of this and a little bit of that. However, when school stresses increase both socially and academically, people begin to see behaviors that lead them to seek a diagnosis. When I've talked to adults with AS and asked them when they first knew they were different, they typically said it's when they entered school. When they were just part of the family unit at home people would say they were bright and they got by with their siblings and their parents, but when they hit school and didn't understand the social milieu they began to realize they were different. They could hide it for a while but when they started having emotional and behavior problems someone—a parent or a teacher—wanted to know more about what was going on.
What happens if a child isn't diagnosed in elementary school?
AS doesn't go away with time. A significant number of adolescents don't get diagnosed until middle school or senior high. One possible reason for this delay is that the demands of friendship change at that time. A younger child usually just wants someone to play with, and often activities are planned and supervised by parents or teachers. In middle school demands change; children have to manage themselves, social demands are more complex, and the pressure to be like everyone else escalates. Another time of frequent diagnosis is entry to college. Many teenagers were able to get through middle and high school because much organizational planning was done for them; school hours were regular, homework assignments were predictable, etc. They may, however, encounter problems in self-management when they enter college. By adulthood, people usually don't request an evaluation unless there's an impediment in their lives in terms of work and social relationships; many adults may be socially inept but function well in other areas.
Why is diagnosis important?
Accurate diagnosis is a pathway to treatment. Unfortunately, many children originally receive a diagnosis different than AS. For example, a diagnosis of ADHD was often given, because children with AS have difficulty modulating their attention and recognizing the appropriateness of their level of activity. One person might describe a child as hyperactive when in fact he's really inappropriately active and doesn't recognize the social cues to stop. Some children with AS do have the characteristics of ADHD but some do not. I had a 13-year-old boy come into my office and stand on his head on the couch. Most 13-year-olds know they shouldn't do that in an office, and someone might think that he's just so active he can't stop it. In reality, he may not recognize the inappropriateness of his behavior or have the social insight to understand how others perceive it.
In order to be useful in planning, an evaluation for AS should be multidisciplinary. When a child shows a markedly uneven pattern of abilities and in addition has social problems, the point of view of more than one discipline is necessary to plan an integrated course of action. The purpose of a diagnosis is to provide information about the condition as well as knowledge of the resources available for appropriate treatment.
Can Asperger Syndrome co-exist with another disorder? Can there be more than one correct diagnosis?
As I mentioned before, ADHD is commonly diagnosed in children with AS. Sometimes an occupational therapist will diagnose a sensory integration disorder, and sometimes speech/language therapists diagnose semantic and pragmatic language problems. Motor problems may also be the focus. While sensory integration, language problems and motor difficulties are characteristic of AS, these diagnoses don't sufficiently explain the social problems. Children may also be referred because of anxiety or depression. Think about how a person might feel if he/she couldn't process what people are saying, didn't know what to expect, and couldn't figure out what's going on. Eighty percent of individuals with AS have a co-morbid anxiety disorder. Anxiety and depression may be reactive to their condition or may be constitutionally-based.
Nonverbal Learning Disability (NVLD) is a diagnosis which has the most overlap with AS. NVLD is difficult to recognize; children with this problem are considered lazy or unmotivated when actually they have a cognitive disability. The characteristics of NVLD—problems with organization, motor planning, problem solving and prioritization, social adaptation, time perception—are also present in children with AS. Children with AS and NVLD often show profound differences in functioning; a child may have incredible intellectual gifts in certain areas and be markedly disabled in other areas. If in addition, the person has significant social difficulties, a diagnosis of AS should be considered.
For an individual with AS, the diagnoses of sensory integration, language problems, motor difficulties, emotional problems and NVLD are not wrong and neither are the resultant treatments—they just don't reflect the whole picture.
Is an Individualized Education Plan (IEP) helpful for a child with AS?
An IEP can be useful because it puts the force of law behind the school's responsibility to provide an appropriate education. Although a school may be resistant to classifying a child who's academically able, the child with a profound social deficit is entitled to as much special help as a child with dyslexia or any other academic disability. The provision of an IEP does not necessarily mean special class placement; it may, for example, specify language instruction focused on the social use of language.
Do children with AS usually need special class placement?
AS is a diverse condition, and school placement needs are diverse. There are several possibilities:
- For some children, social skills facilitated by a teacher may be all that is needed. A special homeroom teacher could provide a safe private place and help the child deal with other teachers and students.
- Educating other children in a regular class about differences may provide a climate of support and enable the child with AS to function well academically and socially.
- For a child with significant problems in behavior, aggression, or high levels of anxiety, a special school setting may be needed. Finding the right school setting that works on social skill enhancement with appropriate peers can be a problem. It's important to make sure that the school district does not inappropriately group a child with AS with children who are classified as emotionally disturbed or have a conduct disorder.
- Sometimes parents choose to remove their child from a school setting that is stress-provoking and provide home schooling. The Asperger Institute is developing curricula to provide families or small school programs with an enriched and appropriate education that integrates social, emotional, and communicative aspects into academic learning.
What are the special needs of gifted children with AS?
Education aims for gifted children with AS are the same as for non-gifted children—to provide an educational environment that enables each child to develop his/her full potential. By definition a person with AS has at least average intelligence, and within the Asperger group there is a larger than expected number of extremely bright children. Because of their extreme interests, unique ways of processing, and high motivation, many students with AS show very high achievement in certain areas. On the other hand, other gifted AS children, because of poor organizational skills, do not make full use of their abilities. Care should be taken that gifted children with special needs do not become discouraged by placement in academic environments that are not stimulating.
What are the emotional challenges facing a child with AS?
Many children with AS have problems regulating their emotions, starting very early in life. Emotional regulation depends on feedback from the environment and from experiences in socialization. So, in circular fashion, if a child with AS has fewer opportunities to socialize, he/she also has fewer opportunities to develop emotional control, and the condition is not likely to improve without special help.
Are boys and girls equally affected with AS?
Boys are diagnosed with AS more frequently than girls. Boys may have more obvious behavioral problems and thus are more likely to be noticed and seen as in need of help. Girls are less likely to call attention to themselves because they generally have better social skills. Another reason that girls are less likely to be diagnosed is that they're more apt to have a friend. However, if the one friend becomes less available, and as friendship demands become more complex by the middle school years, girls' social limitations may become more evident.
Don't social skills come naturally?
Human beings are social animals from birth, and learn to interact with others through intuition and experience. For the child with AS, however, the basics of sociality—multi-processing, spontaneous reaction, flexible thinking, and on-the-spot judgments—are not intuitive and have to be learned. Children with AS may have a poor understanding of personal space and conversational turn-taking and unusual use of gestures. Parents and schools must be partners in providing the environment that will provide appropriate socialization experiences and focus on remediating the underlying skills that support social ability.
How can parents help a child with AS improve social skills?
Find ways to foster friendships. Research in typical child development has shown how important friends are. Even if a child has one friend, not necessarily many friends, the social and emotional growth benefits are considerable. Through give-and-take with peers, children learn to control and modulate their emotions. Children with AS often have very intense interests, which can serve as a way of arranging for them to meet others with similar interests. So, for example, if a child is very interested in chess or collecting baseball cards, find another child who's interested in chess or baseball cards, and that may be the beginning of a friendship.
Social skills groups can also be helpful. Parents should keep in mind that children and adolescents may function well within the group, but may have some difficulty in generalizing the principles to real life. People with AS are fine at reciting the rules of socialization, but since they process slowly, they can't always implement them spontaneously and can't keep up with others. It's important that group members have the opportunity to interact with each other outside of the group, so they can have additional practice in a real life situation.
What do you consider the most important research issue regarding AS?
In my opinion, the most pressing research issue is finding evidence-based treatments, both educational and therapeutic. For example, there's very little research on how to help people with AS transition from one developmental stage to the next. Obviously research into the causes of AS is a desirable goal, and we will eventually be able to answer that question, but for the children and adults who are alive today, I believe that our uppermost concern should be on finding the best possible ways to help them have a good quality of life—to make changes in their development that will be sustained, to interact socially, and to find a satisfying occupation. The younger in the developmental process you discover, diagnose and begin treatment, the better the likelihood of a good outcome. Recognizing that AS is an outcome of brain difference plus experience, not a disease in and of itself, research should focus on both parts of the equation.
In the program at the NYU Child Study Center, we plan to provide children and adolescents with AS with an environment that is academically and therapeutically rich. We can function as a laboratory and are putting systems in place to examine and measure the effectiveness of what we do. Appreciating the diversity of people with AS, it is our plan to use each child's individual strengths to provide stimulating and fascinating challenges that enlarge a child's mind and facilitate the transition from one phase of development to the next.