INTRODUCTION

INTRODUCTION

Asperger syndrome is perhaps one of the most baffling and mysterious disorders of our times.

Asperger Syndrome (AS) is a Pervasive Developmental Disorder in the Autistic spectrum that is characterized by mild to severe difficulties in the areas of social interactions and communication, restricted and specialized patterns of intense interest and clumsiness deriving from coordination problems. Memory and executive functions are also affected , which in turn translates into problems with planning, organizing and integrating information during the learning process, information retrieval, efficient planning, the exercising good judgement based on previous knowledge .

 Because of its intriguing peculiarities the disorder has earned among some (Gena Barnhill, 2002) the nick name  "Wrong Planet Syndrome".
The effects of the disorder on the family can range from puzzling to intriguing all the way to simply devastating as the disorder, due to its very nature, affects multiple areas of the child's development and ability to function. In any case major parenting role adjustments, often deviating from and greatly adding to the traditional parenting role, will be required from the primary caregiver in particular. Generally speaking also the family lifestyle undergoes some changes in order to accommodate the special needs of the child with Asperger Syndrome.

The common goal shared by millions of loving parents of every language and culture is, in the end, quite simple: to prepare their children for independence and intimacy. While for most children such goal will mostly be attained with relative ease and in fairly predictable age related stages, Asperger Syndrome affected children will require adjustment strategies and interventions often completely foreign to their befuddled parents. Last, but not least , such adjustments and interventions do not terminate after the 'growing up ' years but extend well beyond childhood.

This continuous need for adjustments and interventions, coupled with the stark reality of having a child with a lifelong disability and spurred on by the awareness of a serious lack of social resources and the lack of  acceptance of AS as a life long invisible disability from both the public, the social security and  health systems leads to high levels of stress. Moreover parents t worry about the future of the  AS child, well aware that their cute, peculiar child will become a not so "cute" peculiar adult left to its own inefficient parameters and devices.                       

Background of the Study

Aspergers Syndrome is a neurobiological disorder named after the Austrian psychiatrist Hans Asperger, who first documented the condition in 1944. It is often described as a pervasive developmental dysfunction said to lie within the "high functioning end" of the autistic spectrum of disorders (Boon, 2002).

In 1944, an Austrian physician named Hans Asperger published an article summarizing some common features that he had noted among four of his young patients. In particular, these children demonstrated significant difficulties with social integration despite having no delays in language or cognitive development (Asperger, 1944). He used the term "autistic personality disorder" to describe this specific disability. Because of political concerns associated with World War II, Asperger was unaware of Kanner's English publication a year earlier in which the word "autistic" was also used to describe a group of children who had difficulty with social integration (Kanner, 1943). However, the 11 children described by Kanner were less skilled with the use of language and more likely to demonstrate cognitive delays than those described by Asperger.

Both Asperger and Kanner borrowed the term "autism" from the schizophrenia literature to describe the extreme aloneness that they had seen in this group of children (Rutgers University, 2000). This may explain why, for many years, children demonstrating these symptoms were diagnosed with Childhood Schizophrenia. While a note might have been added to a child's diagnosis indicating that he or she was exhibiting "autistic features," distinct diagnoses of Autistic Disorder or Asperger's Disorder were not available until many years later (Rutgers University, 2000).

In 1980, Autistic Disorder was finally included in the Diagnostic and Statistical Manual of Mental Disorders-Third Edition (APA, 1980). At this time, Kanner's writings were heavily relied upon. No account was made for the cognitively intact children and adults who still experienced difficulty with social integration described by Asperger. Not until 1994, with the publication of the DSM-IV (APA, 1994), did Asperger's Disorder officially become its own diagnostic category. Until that time, individuals who would have better matched the diagnostic criteria for Asperger's Disorder were accounted for by Autistic Disorder or a related diagnosis (e.g., Atypical Autism).

It's primary characteristics are similar to those of Autism, yet it can be differentiated from Autism by later onset, and relatively well preserved language and cognitive abilities, but the disorder in manifestation can range from mild to severe. While language development appears normal, individuals with AS tend to be extremely literal and exhibit problems using language in a social context. Because of their "high degree of functionality", those with Asperger's Syndrome (AS) are often viewed as eccentric or odd, and can easily become victims of teasing and bullying (Boon, 2002). Estimates suggest at least 1 in 10,000 individuals have Asperger's syndrome and males are more often affected than females. There is a tendency for the disorder to run in families (Boon, 2002).

 

Statement of the Problem:

This study will attempt to answer the following questions:

1.                               What are the sources, symptoms and treatments of Asperger Syndrome?

2.                               What are the coping mechanisms by the patients and the parents in the incidence of Asperger Syndrome and in the treatment process?

3.                               What are the measures undertaken by the parents in terms of information dissemination of AS and adjustments in their role as a parent and as an advocate?

4.                               What are the stress management techniques by the parents in dealing with their child with an AS?

5.                               What are the effects of these adjustments and coping mechanisms on the patient-child in terms of progress of AS, in the education, social interaction and the treatment of the patient-child?

6.                               How effective are the coping mechanisms in reducing stress level between the parents and the child, the improvement of the child's treatment and the lifestyle of the family?

Hypothesis

This study attempt to prove the following null hypothesis:

1. Parents of AS kids have to assume roles that actually add to the traditional parent role
2. Parents of AS kids experience constant levels of high stress

 

Aims and Objectives

            This paper shall attempt to achieve the following objectives:

1.      Identify the origin, symptoms and the treatments of AS

2.      Identify the coping mechanisms and stress management practices by the parents in dealing with their child who has an AS

3.      Explain the relationship of the coping mechanism (such as change in role) and the stress level experienced by the parents

4.      Evaluate the roles assumed by parents vis a vis the development of the AS patient and the lifestyle of the family

5.      Construct recommendations on how parents of AS patients can adopt on the their child's case

Scope and Delimitation

This study will tackle the relationship between Asperger Syndrome (AS) and the change of roles by the parents of the patient brought about by the high level of stress that they have to undergo. Moreover, this paper shall provide the background on the understanding of AS; its origin, symptoms and its treatment.

The number of respondents in the research-based questionnaire shall be limited to a given population and findings may vary with other surveys on the topic given to the difference in the demographic variables among the respondents.

Significance of the Study

This study is an attempt to illustrate the significance of assuming a more hands-on role as a parent for AS patients. This assumption of role shall be critical in the stress management by parents and the development of the child in terms of their treatment and personal growth. This will also be an informative guide for parents who are having a hard time dealing with their AS-inflicted child and how they can utilize the coping mechanisms outlined in this study. Further, this analysis will be beneficial to the members of the academe and the research community on AS, AS therapists, students and the general public in dealing and understanding AS.

 

Review of Relevant Literature

Asperger's can generally be characterised by naively inadequate social interaction, an inability to make friends, impaired emotional intonation and gesturing, pedantic monologues, restricted repertoire of interests (e.g. rail & air time tables), and the appearance of having a lack of empathy with others (Boon, 2002). The actual causes of Asperger's syndrome are presently unknown, however, it has been observed that AS is often found in children with pre-,peri-,or post natal problems and nearly half of those diagnosed with Asperger's Syndrome have suffered lack of oxygen at birth (Boon, 2002). It has been noted in clinical studies that the brain's right hemisphere is dominant for the nuances of social conduct and interaction, and that the right lobe may have a role in adherance to social rules^., and studies carried out in 1994 and 1995 appear to confirm that Asperger's may be a selective learning disability of the right hemisphere (Boon, 2002).

Many of the weaknesses observed in AS can be remediated with specific types of interventions aimed at imparting social and pragmatic skills. The often co-morbid anxiety that leads to significant rigidity can be also addressed. Interdisciplinary interventions of a highly comprehensive, intensive and highly structured nature are usually necessary (Boon, 2002).

With intensive training, AS individuals are able to function independently (Boon, 2002). Adults with Asperger's can have relationships, provided of course they have a fully understanding partner and are aware of their own deficits. The Asperger's person will need to learn to self monitor and work on this area of themselves. Many have families and live happy and productive lives. A few people with Asperger's syndrome are very successful and until recently were not diagnosed as 'having' anything but were seen as being brilliant, eccentric, absent minded, socially inept, and perhaps a little awkward physically (Boon, 2002).

Asperger's Disorder and Autistic Disorder are pervasive developmental disorders both defined, according to the DSM-IV, by the presence of impaired social interaction and restricted range of interests and activities (Fenster-Kuehl, 2000). Often misdiagnosed, children with Asperger's Disorder may also have symptoms of Obsessive Compulsive Disorder, Attention Deficit/Hyperactivity Disorder, Oppositional Defiant Disorder, Bipolar Disorder, and Schizoid Personality Disorder, any of which may be appropriate comorbid diagnoses. Adolescents and adults often develop depression (Fenster-Kuehl, 2000).

Lorna Wing, who resurrected Hans Asperger's important work using the term Asperger Syndrome, has proposed that we do away with that term and return to Autistic Spectrum Disorder (Wing, 2000). Appropriate diagnosis and classification have important consequences for further research into etiology, comorbidity, and treatment outcome studies. The search for clear differential diagnosis may blur the differences within groups, induce us to ignore the differences at the fringes of diagnostic categories, and cause us to lose sight of the individuality of a patient's personality, strengths, and weaknesses, but only if we choose to do so. The controversy over diagnostic issues within what Gillberg (1992) refers to as disorders of empathy, however, has engendered fruitful research that has helped to remove the blame from patients and their families and focused attention on the need for more comprehensive and effective treatment.

In order to receive a diagnosis of Autistic Disorder, an individual must demonstrate delays in social and language development, along with displaying a restricted range of behaviors or interests prior to the age of three. Autism coexists with mental retardation in about 80% of cases (Rutter, Bailey, Simonoff, & Pickles, 1994). While a diagnosis of Asperger's Disorder also requires delays in social development and a restricted range behaviors or interests, an individual with a history of language delays cannot receive this diagnosis. Similarly, an individual with cognitive or adaptive delays cannot meet the diagnostic criteria for Asperger's Disorder. In addition, Asperger's Disorder may have a later onset. For example, many individuals with Asperger's Disorder have a great deal of difficulty with the pragmatics of language (Klin & Volkmar, 1996). As a result, their expressive language abilities may not be limited, but their ability to successfully initiate and maintain conversations may be diminished. Skills such as turn-taking, as opposed to one-sidedness in conversation, may be challenging for some individuals with Asperger's Disorder (Klin & Volkmar, 1997).

Nonverbal communication abilities are certainly affected within Asperger's Disorder (Klin & Volkmar, 1997). For example, most typically developing 12 year olds not only use eye contact appropriately, but also understand that you can tell how someone feels by looking at that person's facial expression (Rutgers University, 2000).

Other distinctions between autism and Asperger's Disorder have been suggested by researchers. For example, Klin and his colleagues demonstrate that the cognitive profiles of individuals with autism and Asperger's Disorder differ (Klin, Volkmar, Sparrow, Cicchetti, & Rourke, 1995). Individuals with autism display a relative strength in performance abilities with a relative weakness in verbal tasks, while individuals with Asperger's Disorder show the exact opposite pattern: a strength in verbal abilities with a relative weakness in the performance arena. In fact, Asperger's Disorder has been conceptualized as a "Non-Verbal Learning Disability" (Klin, et al., 1995). During numerous conference presentations, Klin has asked diagnosticians to consider how much "mileage individuals get for their IQ" when attempting to distinguish Asperger's Disorder from Autistic Disorder. Because of the keen verbal abilities present among individuals with Asperger's Disorder, they may appear more cognitively able than a peer with autism of equal intelligence (Rutgers University, 2000).

 

Clumsiness, involving both fine and gross motor skills, may also be associated with Asperger's Disorder (M. Ghaziuddin, Butler, Tsai, & N. Ghaziuddin, 1994). The DSM-IV specifies that these motor difficulties may be evidenced during the preschool period. However, other researchers have noted motor problems in older individuals as well. For example, Nass and Gutman (1997) describe five early elementary aged boys with Asperger's Disorder whose motor difficulties interfered with both school performance and social adjustment. More serious motor issues, such as tics and Tourette's Disorder, have also been found to be prevalent among individuals with Asperger's Disorder (Ringman & Jankovic, 2000). Nevertheless, motor difficulties may not help to distinguish between individuals with Asperger's Disorder and those with Autistic Disorder. Ghaziuddin and Butler (1998) found that increased intelligence, rather than diagnostic category, was associated with decreased clumsiness.

Depression is also likely to co-occur with Asperger's Disorder (Klin & Volkmar, 1997). This may also result from experiences of exclusion. Children and adults with Asperger's Disorder are bright and aware. They can see if they are not being invited to parties, or if they are having difficulty getting a date. In middle school and high school, both current students and adults recalling retrospectively report intense teasing and cruelty from peers. At a recent panel of adults with autism and Asperger's Disorder (The New Jersey Center for Outreach and Services for the Autism Community, 1999), panelists urged parents to home-school their children to shelter them from these painful experiences. For many individuals with Asperger's Disorder, first contacts with mental health professionals may occur as a result of depression associated with these difficult experiences.

Throughout the history of psychology, the benefits and relevance of diagnoses have been questioned. For individuals with Asperger's Disorder in particular, the benefits of diagnosis seem more apparent (Rutgers University, 2000). Asperger's Disorder, for many, is a disorder of exclusion. It describes an intelligent person with no physical abnormalities who may understand the complexities of advanced number theory more easily than she or he can understand the rules of how NT's make friends. While social allowances might be made for someone with a more obvious disability, such as having the physical difference of being in a wheelchair or a cognitive difference such as severe retardation, expectations for these individuals with purely social disabilities are not modified by family, teachers, or peers. When expectations are not met, an individual with Asperger's Disorder may be subject to ridicule and/or isolation (Rutgers University, 2000).

 

 

 

 

 

 

 

 

 

 

 

 

 

REFERENCES:

American Psychiatric Association. (1980). Diagnostic and statistical manual of mental disorders (3rd ed.). Washington, DC: Author.

 

American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.

 

Asperger, H. (1944). Die "Autistischen Psychopathen" in Kindesalter. Archiv für Psychiatrie und Nervenkrankheiten, 117, 76-136.

 

Boon, Rosemary, Asperger's Syndrome, Learning Discoveries, Psychological Services, Optimal Function and Well-being, 2002.

 

Fenster-Kuehl, Ellen, Asperger's Disorder, NJ Psychologist Magazine, NJ Psychological Association, Fall 2000 Issue.

 

Ghaziuddin, M., & Butler, E. (1998). Clumsiness in autism and Asperger syndrome: A further report. Journal of Intellectual Disability Research, 42 (1), 43-48.

 

Ghaziuddin, M., Butler, E., Tsai L., & Ghaziuddin, N. (1994). Is clumsiness a marker for Asperger's syndrome? Journal of Intellectual Disability Research, 38, 519-527.

 

Gillberg, C. (1992). The Emmanuel Miller Memorial lecture, 1991. Autism and autistic-like conditions: Subclasses among disorders of empathy. Journal of Child Psychology and Psychiatry, 30, 631-638.

 

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-253.

 

Klin, A., & Volkmar, F. R. (1996). Asperger syndrome: Treatment and intervention. Pittsburgh: Learning Disabilities Association of America. (This text can be obtained by request from LDAA).

 

Klin, A., & Volkmar, F. R. (1997). Asperger syndrome. In D. J. Cohen & F. R. Volkmar (Eds.), Handbook of autism and pervasive developmental disorders (2nd ed., pp. 94-122). New York: Wiley.

 

Klin, A., Volkmar, F. R., Sparrow, S. S., Cicchetti, D. V., & Rourke, B. P. (1995). Validity and neuropsychological characterization of Asperger syndrome. Journal of Child Psychology and Psychiatry, 36 (7), 1127 - 1140.

 

Nass, R., & Gutman, R. (1997). Boys with Asperger's disorder, exceptional verbal intelligence, tics, and clumsiness. Developmental Medicine and Child Neurology, 39 (10), 691-695.

 

Rutgers University, A Brief History of Asperger's Disorder, The Douglass Developmental Disabilities Center and the Rutgers Autism Program, NJ Psychologist Magazine, NJ Psychological Association, Fall 2000 Issue.

 

Rutter, M., Bailey, A., Simonoff, E., & Pickles, A. (1997). Genetic influences and autism. In D. J. Cohen & F. R. Volkmar (Eds.), Advances in Clinical Child Psychology (Vol. 6, pp. 93-127). New York: Plenum.

 

Wing, L. (2000). Past and future research on Asperger syndrome. In A. Klin, F. R. Volkmar, & S. S. Sparrow (Eds.), Asperger syndrome (pp. 418-432). New York: Guilford.

 

---

Looking for last minute shopping deals? Find them fast with Yahoo! Search.