Asperger's Syndrome

Intervening in Schools, Clinics, and Communities

Linda J. Baker, Lawrence A. Welkowitz, Linda J. Baker, Lawrence A. Welkowitz

• Publisher: Routledge
• Year: 2004
• eBook ISBN: 9781135624132
• Topic: Education
• Subtopic: Education General

In recent years, a growing number of children and adults have been diagnosed with Asperger's Syndrome, a neurological condition characterized by severe difficulties with social communication. While extremely talented in their areas of special interest, many with the diagnosis also have problems with coordination and sensory processing. Professionals and families struggle to help them function competently and make the most of their unique abilities.

This readable and practical book synthesizes the latest knowledge about how to do so in various contexts from early childhood on. The authors include psychologists, psychiatrists, special educators, an occupational therapist, a specialist in communication disorders, and a lawyer, with diverse philosophies and methods of intervention. They suggest a variety of ways to help those with Asperger's adapt to the "neurotypical" world, and to bridge the social chasms that can develop as they are integrated into schools, organizations, and communities.

Asperger's Syndrome: Intervening in Schools, Clinics, and Communities constitutes a vital resource for all those who seek to improve the lives of individuals with the syndrome.

Chapter 1

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Introduction: Intervention as Community Building

Linda J. Baker and Lawrence A. Welkowitz
Keene State College

When, we, the editors, began studying Asperger's Syndrome in 1996 there was little information to be found. We were both hungry for more because we had family members and clients struggling with the symptoms of Asperger's Syndrome, and as psychologists, we hoped to be more useful to those we served. We assembled a small study group of faculty, staff, and students and began by reading Asperger's original article (1944/1991), which described children who had many of the characteristics of autism, including sensory and social differences and a variety of neurological problems, but who also appeared more connected to or interested in the world around them. Whereas Kanner's work on children who were more classically autistic was continued in this country, Asperger's work was all but ignored until the last decade.

Thus, our study group moved from reading Asperger's article written in 1944 to studying Attwood's Asperger Syndrome (1998) and Frith's Autism and Asperger Syndrome (1991), both published in the United Kingdom. We presented case studies of a few individuals we suspected had Asperger's Syndrome, trying to apply what we had learned. At that point, most of our academic colleagues or fellow clinicians had not even heard of the diagnosis, and any time we mentioned our work we were forced to launch into a description and explanation of the syndrome. We were thus inspired to produce a 30-minute descriptive video, Understanding Asperger'sy filmed and directed by Jesse Gabryle (Welkowitz & Baker, 2000), an enthusiastic student in our college film department. When shown at the annual meeting of the American Psychological Association in 2000, it attracted a large audience that was finally aware of the diagnosis but still searching for information. Since then, not only has the available body of literature grown exponentially, but the number of diagnosed cases has exploded. It was not long before we were inundated with requests from parents, schools, and local psychotherapists for assistance with diagnosis and intervention.

At this point in time there is such proliferation of information and research that those attempting to educate themselves do not know which way to turn. Parents, teachers, clinicians, and those with the diagnosis attempting to figure out what types of intervention make sense find the array of specialists and the diversity of available printed material overwhelming. People with Asperger's Syndrome often face problems at home, in the social world, in the classroom, in the physical world, and sometimes with the law. Ideally, a team of specialists from various disciplines would be available to any diagnosed individual: Special educators, clinicians, occupational therapists, communication specialists, psychopharmacologists, and lawyers would all contribute to the package of interventions assembled for someone needing assistance. Unfortunately, although the expertise is out there, it is rare that any individual has access to the array of services he or she needs. We hope that this collection of chapters will serve as an information team, that readers will benefit from these various specialists, their skills, and their perspectives, and thus be able to determine which services might be helpful to those that need them. Our team of authors has described the state of the art and the recent research in their fields, followed by carefully crafted programs for intervention. From their work might spring new programs and ideas in places where services are lacking. We must also acknowledge that the field is new, that many interventions are the fruit of clinical experience and observation, and that research and program development are still emerging. “Experts” do not always agree and many questions remain unanswered. Although we have attempted to cover a range of issues, many others are not addressed. For instance, we are finding that some young adults with Asperger's Syndrome are vulnerable to encounters with the legal system because they do not understand their social contexts and unknowingly behave in ways that others find threatening.

Any focus on intervention must begin with acknowledgment of the strengths, potential, and significant contributions already made by people with Asperger's Syndrome. Baron-Cohen (2002) suggested that it might be more accurate to think of Asperger's Syndrome as a difference rather than a disability. He proposed that the behavior of people with Asperger's Syndrome, if looked at nonjudgmentally, is neither better nor worse than that seen in neurotypicals and that “being more object focused is clearly a disability only in an environment that expects everyone to be social” (p. 187). He asserted that people with Asperger's Syndrome would no longer be seen as disabled if societal expectations changed, and he suggested that the prevalence of people on the autistic spectrum who work in the sciences, particularly in engineering, exemplifies the talents and potential contributions of people with Asperger's Syndrome. Tony Attwood (personal communication, March 28, 2002) did not hesitate to point out that many well-known artists, musicians, and scientists had profiles indicative of Asperger's Syndrome. At this time, however, as Baron-Cohen (2002) acknowledged, viewing Asperger's Syndrome as a disability is still necessary, primarily because it is the only way to get services for people who are out of step with the dominant social culture.

If we understand that problems faced by people with Asperger's Syndrome are the result of both the limitations of people surrounding them, as well as their own difficulties adapting to the social world, we know that intervention must address both the individual and the environment. Individuals with Asperger's Syndrome will be able to develop and contribute their often extraordinary talents only with the collaboration and support of others. Children with Asperger's Syndrome are particularly vulnerable to the extremes of success and failure. They can grow up to make significant contributions to their communities and societies, or become a constant, and even dangerous drain on limited resources. The rewards of their success are great and the costs of their failures are high. As parents, educators, and clinicians, and as a society, we face the choice of committing time, energy, and resources to providing what it takes to support development in these children or facing the serious consequences of our neglect. Their success is dependent on the quality of all of the interactions they have with people in their lives, whether it is their family members, their teachers, their therapists, their doctors, their bus drivers, their peers, or their one-on-one classroom aides. All of these interactions give them information about whether their efforts will be rewarded or punished, and about whether engagement with others is worth all the hard work Those of us who are specialists know that the limited amount of time any one of us spends with a child is not enough. It is in the total of everyday interactions that most change happens. To reach their potential, people with Asperger's Syndrome need protection from interactions that punish (e.g., chronic failure, exclusion, teasing, and bullying) and exposure to a wide range of experiences that motivate them to adapt to a social world that is intensely difficult for them to negotiate. The thinking of people with Asperger's and their ways of interacting can be different enough from that of neurotypicals that those in both groups must work to build bridges.

Changes that facilitate the growth and development of people with Asperger's Syndrome benefit not only those with the “disability,” but the community at large. For instance, children with Asperger's Syndrome need protection from bullying, but no more than children who bully need to find better ways to interact. We know, for instance, that children who are bullies are at higher risk for criminal behavior later in life (Goleman, 1994); reducing bullying behavior is crucial for bullies and victims alike.

It also benefits all children, not just those with Asperger's Syndrome to learn better friendship skills, and to encounter in their peers more flexible expectations. Children are ostracized for various reasons, yet those who feel different suffer from many of the same pressures. Most children need and want friends, yet many are isolated and lonely. Years of research in the area of friendship by Rubin & Thomas (2002) and others (Gutstein & Whitney, 2002) have documented the importance of developing friendships. According to these studies, children without friends have ongoing problems with self-esteem, social skills development, and school performance, independent of their intelligence level. It is also crucial that we teach “popular” children to be more respectful of their less conforming peers. As Carrington and Graham (2001) pointed out, for those with Asperger's Syndrome, masquerading their deficits creates inordinate stress. If they could feel better about exposing and explaining their differences, they could function more effectively, and with less agitation, anxiety, and depression. Freedom to do so would benefit many others as well.

Interveners, if well trained, will also know how to build consistent success into the lives of the people they are helping. Tony Attwood (personal communication, March 26, 2002) explained that it is success that motivates children with Asperger's Syndrome to engage with the world, that their daily lives are so fraught with the punishment that comes as a consequence of their social limitations and the ways they are treated by others, that additional punishment only adds to their distress and anxiety. Any new task we ask of the child must meet him or her at his or her level of accomplishment, provide some challenge—but not so much as to be overwhelming—and move the child forward in a way that guarantees success. If you ask a disorganized child who is easily overwhelmed, overstimulated, and distracted to clean his or her messy room and you leave him or her alone for an hour to accomplish this task, the child is likely to fail. If you structure the task, ask the child first to pick the clothes up off the floor and put them in a hamper, throw in a few items yourself, and acknowledge the child's success as he or she progresses, he or she may then take the next suggested step and pick up the books. If you ask a child with no social skills to make eye contact with other children before he or she knows what to say to them or finds the interaction rewarding, what will motivate the child? If he or she succeeds at a short interaction with another child, he or she will want to try again. Success feeds on itself. It is a motivator and a teacher.

As helpers asking children with Asperger's to take on new challenges, we need to keep our priorities in mind. Is it more important that the child learn to control his or her anger, or that he or she complete a math assignment (T. Attwood, personal communication, March 19, 2002)? The child might not yet be able to do both. When deciding on any course of action, the questions must be “What is it most beneficial for this child to learn at this moment?” and “How can I reconstruct the task to guarantee success?”

Because intervention requires effort from the people surrounding those with Asperger's Syndrome, they need support and training. Parents, relatives, and teachers, in particular, who spend the most time relating to individuals with Asperger's Syndrome need and deserve attention. Parents, especially before their children are diagnosed with Asperger's Syndrome, question themselves and their parenting skills (Sofronoff & Farbotko, 2002) Confidence or the lack of it affects parental persistence and mood (Sofronoff & Farbotko, 2002). Intervention on behalf of children with Asperger's Syndrome must include consultation, support, and training for their parents. Publications and Web sites are now available that are responsive to parents' needs, but although the need for teacher training and consultation is often recognized by school systems and training teams, intervention on behalf of parents is often lacking. Because parents can be so well informed—sometimes more knowledgeable than the educators and clinicians they consult—we can overlook the pain and everyday struggles they confront. Parent support groups are becoming more common, and they provide some of what families so desperately need. However, they are not a substitute for the empathy and understanding of intervening professionals.

There are other skills and strategies that all primary helpers must learn, such as ways of avoiding power struggles that can trigger aggressive behavior in people with Asperger's Syndrome (Simpson & Myles, 1998). Gray (Attwood & Gray, 2002) suggested that because children with Asperger's tend to emulate adults, we must make it a habit to look at our own interactions with these children, and repeatedly ask ourselves whether our ways of relating to them are modeling what we would like them to learn about relating to others. Children with Asperger's often behave like pedantic adults. Without help understanding the social culture, they tend to be bossy, want things done their way, be critical and rigid, appear unreasonably sure of themselves, and be insensitive to the thoughts and feelings of others. If we expect a child with Asperger's to follow our orders without questioning us, what are we teaching that child about interacting with others? If we allow his peers to overpower him with insulting words or violent behavior, and we do not intervene, what is he learning about how to treat other people? If we are trying to teach her to think calmly before acting, and we respond to her with impatience, what is she learning from us about managing anger? If we do not listen to the child talk about what interests him or her, what will that child learn about listening to others? We need to stay calm and logical, explain the reasons for our behaviors and demands, learn to communicate effectively with people with Asperger's Syndrome, and make sure that they are treated with the respect we ask them to give others.

The more we learn to be flexible ourselves and the more interactively competent we become, the more effectively we model desirable behavior. Gray (Attwood & Gray, 2002) suggested that when we are working with children with Asperger's Syndrome and confront a challenging behavior, we engage in an introspective process that allows us to evaluate our feelings, thoughts, and assumptions before responding. She proposed that we reflect in the following way: We look at our own emotional response to find out if it is interfering with our judgment; we ask for time to think; we consider that what the child is saying might mean something different to him or her than it means to us; we acknowledge that we might need a translation that includes asking for or providing more information for either party; we acknowledge the child's beliefs and feelings; and we consider an alternative route to the one we would ordinarily choose. In other words, those of us who are more neurotypical need to go through the same cognitive process to understand and communicate with people with Asperger's, that they must learn to communicate with us. The advantages of this approach were apparent recently when one of us was treating a child who was having angry explosions at home and in school. When I suggested the recommended strategy of monitoring his levels of agitation every 15 minutes, scoring these levels with numbers from 1 to 10, and taking preventative action before the numbers got too high, he responded angrily, “No, I hate that!” I took a deep breath, noticed my own discouraged feelings, overrode them, and asked him what he hated about it. He explained that his aide, Mrs. X, had made him assign numbers to his moods in a way that infuriated him, and repeatedly dragged him out of the classroom kicking and punching. We took the time to acknowledge the traumatic nature of those experiences and how often they had occurred. He repea...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Contributors
• Acknowledgments
• 1 Introduction: Intervention as Community Building
• Part I Fundamental Issues
• Part II Children
• Part III Adolescents
• Part IV Complementary Services
• Part V Special Concerns
• Author Index
• Subject Index