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A personal reflection on the challenges of being a child with aspergers syndrome

This is a chapter excerpt from Guilford Publications.

At the outset, Asperger conceptualized these patients, with their syndromic-like picture of symptoms and behaviors, as suffering from a "personality disorder," which was genetically determined. He used the term "autistic psychopathy" in his paper, in which he presented four detailed case studies see translation of this paper in Frith, 1991.

Key features in the original AS presentations were onset before the age of 2 years; persistence of symptoms throughout life; characteristic peculiarities of eye gaze; lack of gestural and facial expression; a variety of abnormalities in expressive language; creativity and originality in intelligence and in language; narrow, isolated, and circumscribed interests; problems in attention and learning; lack of clear-sightedness; self-absorption, especially with regard to their own bodies and bodily functions; impaired social relationships; and overall abnormality in their interactions with all aspects of the environment.

Asperger also noted stereotypic behaviors, the existence of pronounced likes and dislikes, abnormal relationships with objects, poor self-care skills, egocentric behavior, impaired ability to understand other people, along with aggression, conduct problems, and "delinquent acts.

Indeed Asperger published a number of articles comparing infantile autism with his syndrome, noting both the commonalities of symptoms in social and communicative domains and the differences in cognitive and personality domains. In interpreting Asperger's writings of almost 60 years ago, we need to take into account the social meaning of childhood and its behavioral mores at this time in history, in conjunction with the different approach to child psychiatry than the context in which we currently assess, diagnose, and treat troubled children.

Although AS may have been an appropriate categorization in the 1940s in Europe, the question of whether it could be considered a personality disorder has never been developed or thoroughly explored.

However, Wolff 1996 presented a translation of a paper published in Germany by Ssuchewa in 1926 i.

  • Advice and Strategies for Teachers;
  • Greater public awareness of autism may be leading to concerns about unusual developmental features earlier in life and foster an increased willingness of parents to present a puzzling child for assessment;
  • Two chapters present the cognitive and learning characteristics of children with AS, using case studies and long-term follow-up data on children in school;
  • Wendy Lawson, an extraordinarily articulate adult who has lived with the disorder, provides an enlightening picture of her experiences as she grew up and had to cope with the mysteries of the school environment.

Included in these fascinating case descriptions we find a number of Asperger-like symptoms and behaviors. Although we might not go so far as to rediagnose these boys with AS, the parallels in the two sets of cases are notable. Wolff 1995 and her colleagues have examined the overlap between AS and schizoid personality disorder, as well as the persistence of the latter over time and the possible relationship to the emergence of schizophrenia in later life, without, however, coming to any definitive conclusions about their connections.

In light of the viewpoints about mental disorders in the 1920s, the diagnosis of schizoid personality disorder was probably apposite at that time, but it is interesting to wonder how those same boys would be categorized by mental health clinicians today. Nagy and Szatmari 1986 also made comparisons between children with AS and people with a diagnosis of schizotypal personality disorder, demonstrating some common characteristics between these two disorders, such as social isolation, lack of empathy, difficulties in understanding social rules, and impairments in emotional expression.

They did not, however, suggest that it was difficult to discriminate between these disorders. Such papers illustrate the degree to which perceptions and interpretations of symptoms and pathology are influenced by psychiatric thinking of the time and thereby contribute to the inexactitude of clinical science. Miller and Ozonoff 1997 have argued that the kinds of children attracting a diagnosis of AS in contemporary clinical practice are different from those presented by Asperger in his early writings.

A personal reflection on the challenges of being a child with aspergers syndrome our contemporary context, the framework of autism has dominated the study of AS, with a great deal of current research focused on the questions relating to the diagnostic relationship between AS and autism. AS, as a distinct disorder, received cursory international attention in the literature, until researchers such as Wing 1981Schopler 1985Tantam 1988and Gillberg 1989 published papers that effectively reengaged interest in identifying and understanding individuals with the disorder.

Since the seminal writings by Wing, researchers have become sensitized to the existence of children who have the core features of autism but who are different in subtle ways. A growing number of researchers has sought to understand and categorize children with these symptoms and behaviors, and to differentiate them from other kinds of odd, eccentric, and socially inept children.

Impact of autism on a student’s life

Clinical and research interest then moved toward attempts to distinguish between children with AS and those diagnosed with autism who were intelligent, competent in language, and able to talk about their problems in a way that was rare in the majority of the population diagnosed with autism. Despite substantial research and a number of comparisons differentiating children diagnosed with autism and those diagnosed with AS, the field is still somewhat uncertain about how to conceptualize the nature of this disorder.

This recommended differentiating criterion has not proved satisfactory, as will be seen in the arguments presented in this book. In current clinical practice as well as a substantial proportion of research studies, the diagnosis of AS is being used for children who display a milder form of autism, normal or near-normal intelligence, and well-developed language.

The diagnostic system recommendation regarding normal development of language appears to be ineffective as a characteristic that can discriminate reliably between two distinct disorders Eisenmajer et al. Empirical and clinical evidence reported thus far supplies no reliable, consensual ways of clearly distinguishing between children with a diagnosis of autism who are high functioning, and those with a diagnosis of AS.

  • The epidemiology of autism spectrum disorders;
  • Asperger also noted stereotypic behaviors, the existence of pronounced likes and dislikes, abnormal relationships with objects, poor self-care skills, egocentric behavior, impaired ability to understand other people, along with aggression, conduct problems, and "delinquent acts.

It is an underlying premise of this volume that the notion of a continuum or spectrum of autistic conditions is the most logical position to take, given the evidence. This spectrum includes a range of characteristics, from extremely withdrawn and low-functioning cases at one end, to socially aware, articulate, and intelligent children who nevertheless share the core social and communicative impairments that are the hallmark of autism, at the other.

Attempts to identify empirical and clinical subgroups within the autism spectrum have been reported over several decades Prior et al. A further variant, "pervasive developmental disorder, not otherwise specified" PDD-NOSstill eludes definition but seems to refer to subthreshold or mild autism.

A growing number of research studies has focused on the search for identifiable differences between autism and AS in core domains of cognition and behavior, with limited success e. Contributors to this book vary somewhat in their views regarding the place of AS in the autism spectrum, but all agree that the current diagnostic guidelines need clarification and reconsideration.

In fact, answers to the questions of incidence and prevalence of autism spectrum disorders ASD are a moving feast. Many more children are being diagnosed, it is true, but whether this increase represents a real rise in the rates of these disorders remains to be established Charman, 2002.

A number of authors have reviewed the reasons for the apparent increase in prevalence of ASD, most recently, Wing and Potter 2002. Greater public awareness of autism may be leading to concerns about unusual developmental features earlier in life and foster an increased willingness of parents to present a puzzling child for assessment.

Broadening of the diagnostic criteria, including AS within the autism spectrum, and greater professional knowledge of the conditions also may underpin the increase in numbers of a personal reflection on the challenges of being a child with aspergers syndrome diagnosed with AS.

Perhaps many of these children were formerly dismissed as odd, eccentric, socially awkward, difficult, loners, etc. Now teachers are more likely to be aware that children who have distinctive social and communicative impairments that separate them from their classmates could be children with AS. Ascertainment rates also may be affected by the willingness of medical and educational systems to recognize and sometimes provide educational support for these children.

The relative domination of psychodynamic approaches to assessment and therapy with troubled children appears to have diminished, opening the way for a more empiricist approach to assessing, categorizing, and comparing collections of symptoms and behaviors that may have gone unlabeled in former times.

It is now widely accepted that autism and AS are sometimes associated with a range of other neurodevelopmental conditions. In previous decades, before this association was recognized, children who were not "pure" nonorganic cases might have been excluded from research studies. Prevalence estimates rarely consider primary and secondary diagnoses, especially if service issues are in question, producing additional effects on prevalence rates that have not been assessed.

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In previous decades, too, numbers of undiagnosed children could be found in institutions or special facilities for intellectually disabled children; or, in adulthood, among the population diagnosed with mental illnesses such as schizophrenia and personality disorder.

The needs of these children and the concomitant educational resource implications have become ever more pressing, as we have grown more aware and skilled in recognizing, understanding, and treating the condition. This volume focuses on the behavioral and educational issues pertinent to understanding the common features of the disorder and to providing effective intervention for children with AS.

Although there is a reasonably well-integrated literature that describes and analyzes the characteristics of the syndrome and details methods of assessment and diagnosis e.

Providing educators with a resource that would offer them increased understanding of these children was also a motivating factor in preparing this volume. The many questions and dilemmas in all these domains served as the foundation for the selection of topics: Do children with AS have particular problems with learning in the regular classroom, and if so, can they be usefully characterized? Are they vulnerable to the development of "specific learning difficulties"?

Misinformation around inclusion

What are the effects of the idiosyncratic and eccentric behaviors on the children's capacities to integrate themselves into school settings and to profit from education? How should unusual and sometimes very challenging behaviors be managed?

  • What are the effects of the idiosyncratic and eccentric behaviors on the children's capacities to integrate themselves into school settings and to profit from education?
  • By looking at common issues faced by students with ASD, teaching and support staff will better understand how to help students develop vital skills needed for academic success;
  • The goals of the program are to help students gain a better understanding of human behavior and interaction and to provide opportunities to become familiar and comfortable with the social skills and pragmatic language necessary to be successful at school and in the community;
  • Do children with AS have particular problems with learning in the regular classroom, and if so, can they be usefully characterized?

What are the major problems faced by teachers and caregivers in providing the best ways to teach such children so that their undoubted abilities can be optimized? How can schools work with parents to foster the best possible outcome? Is it best to label such a child; to inform the teachers, the classroom peers, and the child him-or herself about the nature of the disorder; or to allow the child and family to manage the differences as best they can, without reference to a "medical" condition?

Is inclusion in the regular school system in the best interests of children with AS, and what problems does inclusion engender? What happens to these children when they reach the end of formal education; what careers and employment prospects do they have, and how might their opportunities be enhanced?

The contents of this volume reflect the wealth of knowledge and skills that has developed over 50 years of searching for the best ways to help children with ASD. The wisdom gained in this journey of search, trial, and evaluation offers valuable insights into the most strategic, benign, and acceptable interventions that are available. It must be acknowledged that research on treatment evaluation has been small in quantity and inconclusive in outcomes, but more is appearing each year, and a clearer picture is emerging of the principles involved in providing successful interventions for these children from the earliest years through adulthood.

The international selection of contributors from the United States, Canada, the United Kingdom, Israel, and Australia provides expertise from their subspecialty areas as researchers, clinicians, and teachers. Wendy Lawson, an extraordinarily articulate adult who has lived with the disorder, provides an enlightening picture of her experiences as she grew up and had to cope with the mysteries of the school environment.

These include diagnostic challenges, cognitive assessment, analysis, interpretation, and relationship to intervention, as well as the implications of specific learning difficulties for the education of these children. The latter half of this section focuses on the emotional and behavioral problems that are characteristic of the syndrome, with some emphasis on how these should be treated, in order to maximize the potential of these children and adolescents in their educational and social worlds.

Part II examines the challenges posed by school systems that currently have little scope with which to fully understand and accommodate the individual differences of the kind presented by children with AS.

The viewpoints of teachers, students, and educational theorists are represented here. The longer-term outlook for students with AS is also reviewed in the final section. The book concludes with an overview of the ongoing challenges facing researchers, clinicians, educators, and parents who wish to understand children with AS and to help them flourish in a complex and demanding social world.

The difficulties of differentiating diagnostically between AS and high-functioning autism are addressed in the first chapter by Mayes and Calhoun, who provide a clear and thoroughly researched evaluation of the current situation, with conclusions and suggestions for future diagnostic system development that might reduce puzzlement and dissatisfaction among clinicians and teachers.

Two chapters present the cognitive and learning characteristics of children with AS, using case studies and long-term follow-up data on children in school. Reitzal and Szatmari address the methodology involved in the assessment of learning difficulties and emphasize the need for a comprehensive approach covering all domains of functioning.

They review the relatively few studies that delineate cognitive profiles in AS and HFA and evaluate the extent to which these have any specificity to either group. In addition, they report the most recent follow-up results regarding academic achievement in a sample of children ages 4-13 years studied longitudinally by Szatmari's group. They propose a new and interesting interpretation of their findings, which addresses the current debate on the relations between AS and HFA.

Manjiviona draws on a wealth of experience in clinical assessment, diagnosis, and educational liaison to illustrate some of the learning difficulties experienced by children with AS. Her work illustrates the value of expert analyses and interpretation of assessment results, the range a personal reflection on the challenges of being a child with aspergers syndrome tests that can be brought to bear on the analyses of learning problems, and the need to assess in a comprehensive manner.

Through three case studies, she conveys the varying presentations encountered in clinical practice and exemplifies the process of conducting a detailed assessment, including cognitive and neuropsychological analyses and their implications. These assessment findings can be used to better inform the family members and teachers, as they struggle to find ways to help these children participate in satisfying academic learning experiences.

Manjiviona notes the a personal reflection on the challenges of being a child with aspergers syndrome value of a comprehensive assessment for the family. She builds a compelling case for the invalidity of differentiating between AS and HFA on the basis of language development features. She offers insights into how children with AS can make use of their cognitive and language abilities to overcome some of their social, adaptive, and educational difficulties, through developing compensatory strategies to process information that is important in learning about the world.

Shaked and Yirmiya review the social problems of individuals with AS and how these deficits affect their efforts to gain acceptance by their peers and cope with the contingencies of the various school contexts. They describe teaching and training techniques that provide learnable strategies for reducing the mystification of a complex and unpredictable social world, and which can help children with AS navigate that world, especially in the context of their educational experiences.

A somewhat less commonly investigated feature of children with AS is their intense preoccupation with specific idiosyncratic interests. Attwood documents and analyzes a range of individual expressions of this highly significant aspect of their lives. He provides vivid examples of the preoccupations these children develop and suggests ways of managing--and, indeed, benefiting from--these special interests. Tantam reminds us that the diagnosis of AS is not the whole story.

These young people often have to cope with associated problems connected to, but not necessarily explained by, their autistic features.

In his overview of the frequent connections between AS and problems such as attention deficits, hyperactivity, and anxiety, illustrated by case examples, Tantam analyzes what underlies the often extreme reactions of people with AS, and suggests helpful interventions, including the judicious use of medication in some instances.

Part II focuses more intensely on educational experiences--a complicated enough pathway for children with unexceptional developmental histories but a hugely demanding experience for children with AS. Lawson and Gill, as former student and teacher, respectively, set the scene for the focus on educational matters by giving compelling first-hand accounts of their experiences.

Wendy Lawson underwent all the trials of schooling without anyone knowing that she was suffering from AS; indeed, as is often the case with this disorder, no one understood her condition and the challenges she faced. She vividly recalls her experiences and extracts from these a range of mature understandings of the nature of the syndrome and the specific difficulties involved in trying to understand and deal with the world. She writes eloquently of her fear and confusion in this "other world," where she must struggle to translate the meanings of people's behavior into a form she can understand.

Her insights can help us develop empathy for the often silent struggles taking place in children with AS. We also learn ways in which we might better "read" their behaviors.