Asperger Syndrome: The Role of the Primary Caregiver in the Family
Research Aims:
This proposed research attempts to achieve the following objectives:
1. To determine the different adaptive strategies employed by parents, family members and teachers in dealing with Asperger Syndrome patients.
2. To illustrate the connections between the roles and strategies of parents in dealing with high stress.
3. To analyze the different adaptive strategies by parents, siblings and teachers in treating Asperger Syndrome patients.
4. To evaluate the stress management strategies commonly used by family members with an Asperger Syndrome co-member
5. To evaluate the effect of the family members stress management strategies with the growth, temper and treatment of the patient
Research Questions:
In accordance with the research aims of this proposed study, the following will be asked:
1. What are the adaptive strategies and measures used by family members specifically the parents in dealing with their Asperger Syndrome patient child?
2. What are the connections between the roles and strategies adopted through parenting a child with AS (advocacy, management, social skill training, home based OT and PT training etc.) and high stress?
3. What are the common adaptive strategies of parents, siblings, teachers and classmates in dealing with their children who have Asperger Syndrome?
4. What are the stress management approaches commonly used by parents and family members? How effective is it in terms of patient growth, temper and treatment?
Introduction
Children diagnosed with Asperger's Syndrome may not be able to understand or express their emotions, understand what is expected of them or be able to apply the rules learned at other times and in other situations to the situation with which they are faced (Jackel, 1996). Behavior is often an indicator of frustration and stress and the following can assist in their management and reduction. Often, these ideas are beneficial to all the students (Jackel, 1996).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 causes of Asperger syndrome are still unknown. They are however generally identified in 2 categories : Biological and Environmental (Simpson and Zionts, 2000). Therefore possibilities include medical, physical, bio-chemical and genetic factors. Complications during pregnancy or birth are likewise considered. It is estimated that nearly half of those diagnosed with Asperger's Syndrome have suffered lack of oxygen at birth (Boon, 2002). It has also 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 adherence 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).along with the possibilities of adverse reaction to vaccinations (MMR in particular), mercury exposure (still from some vaccines), enzyme deficiencies and various defects of the immune system (Winters, 2001)
Conceptual Framework
The Parent Focused Framework conceptualized by Attwood (1993) will be used in this study to analyze the connection between stress management among family members specifically the parents in dealing with their Asperger Syndrome child. The framework provide the parents with a timetable to ensure that the child can be rehearsed for the following day and has the necessary equipment required for the days activities because they are not strong on organizational skills and need assistance in this area. Further, necessary in this framework is the existence of a Communication Book that will be used daily to inform parents of successes and failures, ask for parental advice and receive information from parents (It is difficult for parents to find out what is happening at school but it is vital that they know so they can inform the Doctors and therapists of issues and receive and transmit advice from medicos to teachers). Thus, when an issue begins to surface, do not ignore it or think it too minor to mention to parents (parents prefer more information than less and often something minor points to a serious issue which has bearing on behavior at home)
Hypothesis
This paper shall test the following hypothesis:
1. There is a significant correlation between connections between the roles and strategies adopted through parenting a child with AS (advocacy, management, social skill training, home based OT and PT training etc.) and high stress
2. Effective stress management in dealing with Asperger Syndrome patients will result in a better patient growth, treatment and temper
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 Related Literature
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).
Parents struggling to find answers about their children often have to wade through pedantic and confusing mazes (Bashe, Kirby, and Attwood, 2001). Bashe, Kirby, and Attwood (2001) delved into the shady, often misunderstood world of pervasive developmental disorders, of which perhaps the most well-known is autism, with clarity, warmth and amazing depth, focusing on Asperger Syndrome (AS). The authors (both mothers of AS children) effectively trace this disorder from the onset of symptoms through adulthood. Though few Americans have ever heard of Asperger Syndrome (AS), recent studies suggest its rate of occurrence may be as high as seven in 1000 (Bashe, Kirby, and Attwood, 2001).
After parents overcome the shock of AS diagnosis and realize that their child isn't bad, nor are they bad parents, they will have many questions, plans, ups, and downs. They stresses that flexibility, resilience, and factual information are major needs of all involved with an AS person; discusses methods for dealing with individuals and institutions; and strongly advises parents not to try going it alone.
Asperger's Syndrome (AS) is on the autism/Asperger's (a/A) spectrum and has long been regarded as the "high functioning end of the autism spectrum (Attwood and Wing, 1998)." Because this IS a spectrum, the behaviors and experiences and manifestations are as varied as there are individuals on the spectrum (Attwood and Wing, 1998). However, there are certain diagnostic criteria that have to be met in order to determine if someone has Asperger's Syndrome or a place on the a/A spectrum (Attwood and Wing, 1998).
Attwood and Wing (1998) makes it plain that a diagnosis of Asperger's is not a death knell or a mental health condemnation; on the contrary, he describes a place on the a/A spectrum as a baseline for behaviors that had previously caused "undefined differences."
Asperger's Syndrome is one of the constellation of conditions known as autism (Willey and Attwood, 1999; Klin and Volkmar, 1995). Myles, Southwick, and McBride (2001) emphasized tantrums and other behavioral outbursts among Asperger patients. They posited that solutions for parents include organization and support, the importance of daily routines, signs to watch for and more (Myles, Southwick, and McBride, 2001). Identifying stress cues that indicate impending emotional and sometimes aggressive outbursts is important in dealing with the patients (Myles, Southwick, and McBride, 2001), this will allow parents and professionals to develop effective intervention plans for responding the incident effectively as well as preventing these episodes altogether.
Asperger syndrome (also called Asperger disorder), only came into more general use over the past fifteen (Bauer, (n.d.); Klin and Volkmar, 1995).
Since AS itself shows a range or spectrum of symptom severity, many less impaired children who might meet criteria for that diagnosis receive no diagnosis at all and are viewed as "unusual" or "just different," or are misdiagnosed with conditions such as Attention Deficit Disorder, emotional disturbance, etc. (Bauer, (n.d.)). The other major characteristic of AS is the socialization deficit, and this, too, tends to be somewhat different than that seen in typical autism (Bauer, (n.d.); Klin and Volkmar, 1995). Their problem is not a lack of interaction so much as lack of effectiveness in interactions. They seem to have difficulty knowing how to" make connections" socially (Bauer, (n.d.)).
This syndrome was essentially unknown in the English literature for many years. An influential review and series of case reports by Lorna Wing (1981) increased interest in the condition, and since then both the usage of the term in clinical practice and number of case reports and research studies have been steadily increasing.
In regard to the emotional aspects of social transactions, individuals with AS may react inappropriately to, or fail to interpret the valence of, the context of the affective interaction, often conveying a sense of insensitivity, formality, or disregard to the other person's emotional expressions (Klin and Volkmar, 1995).
As in autism, treatment of AS is essentially supportive and symptomatic (Klin and Volkmar, 1995). Special educational services are sometimes helpful, although there is, as yet, very little reported experience on the effectiveness of specific interventions. Acquisition of basic skills in social interaction as well as in other areas of adaptive functioning should be encouraged (Klin and Volkmar, 1995). Supportive psychotherapy focused on problems of empathy, social difficulties, and depressive symptoms may be helpful, although it is usually very difficult for individuals with AS to engage in more intensive, insight-oriented psychotherapy. In this way, associated conditions, such as depression, may be effectively treated (Klin and Volkmar, 1995).
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.
In the last few years, thanks largely to parents supported and/or financed initiatives (Barbara L. Kirby, 2001) study and awareness of Autism and of Asperger syndrome have made great steps forward. Studies regarding the use of medication are under way. Several leading academic institutions in the US, including The University of Pittsburg and are conducting Autism Research Programs. While the search for a cure for autism continues a number of therapies are used.
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.
REFERENCES:
Jackel, S. 1996. Asperger's Syndrome. Educational Management Issues.Bashe, P.R., Kirby, B. and Attwood, T. 2001. The OASIS Guide to Asperger Syndrome: Advice, Support, Insight, and Inspiration. Crown Pub; 1st edition (November 13, 2001).
Attwood, T. and Wing, L. 1998. Asperger's Syndrome: A Guide for Parents and Professionals. Jessica Kingsley Pub; (January 1998).
Myles, B.S. and Southwick, J. and McBride, K. 2001. Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns. Autism Asperger Publishing Co; (January 2001).
Willey, L. H. and Attwood, T. 1999. Pretending to be Normal: Living with Asperger's Syndrome. Jessica Kingsley Pub; 1st edition (July 15, 1999)
Bauer, S. (n.d.). ASPERGER SYNDROME, Online Asperger Syndrome Information and Support. Online Asperger Syndrome Information.Klin, A. and Volkmar, F. 1995. Asperger's Syndrome: Guidelines for Assessment and Diagnosis. Yale Child Study Center, New Haven, Connecticut. Learning Disabilities Association of America, June.
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Griffin, Robert, Underachievers in Secondary School: Education off the Mark, Lawrence Erlbaum Associates, 1988
McMahon, Thomas, Pruett, Marsha Kline, On the Proverbial Horns of an Ethical Dilemma: School Consultation, Child Advocacy, and Adversarial Intervention, Lawrence Erlbaum Associates, 1998
Miller, Dan, Effect of a Program of Therapeutic Discipline on the Attitude, Attendance, and Insight of Truant Adolescents, Heldref Publications, 1986
Tauber, Robert, Classroom Management: Sound Theory and Effective Practice, Bergin & Garvey, 1999
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