ASPERGER SYNDROME, PARENTAL LEADERSHIP, AND ADVOCACY

ASPERGER SYNDROME, PARENTAL LEADERSHIP, AND ADVOCACY by Sharon Link

This work explores advocacy strategies for parents to support their Asperger Syndrome child in a public school setting, particularly in a classroom environment. This work represents a maternal act of love for my own Asperger Syndrome child and is an exploration of my own journey to develop better advocacy strategies from a theoretically informed perspective. A detailed explanation of Asperger Syndrome demonstrates how individuals with this disorder require advocacy. My own personal illustration creates a connection between parental advocacy and the formation of personal leadership. Michael Powers, a noted expert in Autistic Disorders and Director of the Center for Children with Special Needs located in Tolland, Connecticut underscores my experience with a theoretical overview. Peter Senge’s work and three of his five disciplines explore how parents might construct a personal framework to interpret Powers’ work. Senge is nationally renowned and is the Director for the Center of Organizational Learning. His work helped me construct a “learningful” framework to better construct personal leadership and a parental advocacy model. Leadership formation strengthens parents’ credibility to advocate. Leadership strengthens voice. Voice strengthens advocacy.

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Asperger Syndrome and the Children who Don’t Quite Fit In

Asperger Syndrome and the Children who ‘Don’t Quite Fit In’
SUZY PORTWAY and BARBARA JOHNSON

Health Visitor, West Sussex NHS Primary Care Trust, The Surgery, Torton Hill Road, Arundel, West Sussex BN18 9HF, UK; bSt Bartholomew’s School of Nursing and Midwifery, City University, London, UK

This paper discusses some of the early findings of current Ph.D. work exploring the lives of young adults with Asperger Syndrome and their parents. The focus here is the experience of ‘growing up’ as perceived by people with Asperger Syndrome. The findings relating to the experience for parents and outcomes for families will be the subject of further papers. For the main study, twenty-five families were purposively sampled and informal interviews conducted with young adults with Asperger Syndrome and their parents. Participants with Asperger Syndrome were encouraged to talk about their own life story. Interviews were transcribed and constant comparative analysis used to identify, compare and code common themes across the data. The stories told are powerful accounts of children who from an early age ‘looked normal, talked normal’ but never seemed to ‘quite fit in’. They went through school and moved into adulthood feeling and being treated as ‘different’, with nobody seemingly understanding why. Many were excluded educationally, in that some were expelled from school while others were excluded by their peers within school, thus leaving them feeling ‘outsiders’. All the participants expressed views that likened them to living on the edge of society where they felt extremely isolated and vulnerable to mental health problems. The findings suggest the need for greater knowledge of Asperger Syndrome among preschool workers, teachers and health care professionals. The importance of earlier detection and the appropriate educational, social and emotional support to help prevent a constant catalogue of negative experiences is emphasised. It is argued that such measures will maximise the opportunities for developing a positive self-image as well as intellectual and personal achievement.

Asperger's Syndrome by Stephen Edelson

Asperger's Syndrome

Written by Stephen M. Edelson, Ph.D.

Center for the Study of Autism, Salem, Oregon

Asperger's syndrome was first described by a German doctor, Hans Asperger, in 1944 (one year after Leo Kanner's first paper on autism). In his paper, Dr. Asperger discussed individuals who exhibited many idiosyncratic, odd-like behaviors (see description below).Often individuals with Asperger's syndrome have many of the behaviors listed below:Language:
lucid speech before age 4 years; grammar and vocabulary are usually very good
speech is sometimes stilted and repetitive
voice tends to be flat and emotionless
conversations revolve around self
Cognition
obsessed with complex topics, such as patterns, weather, music, history, etc.
often described as eccentric
I.Q.'s fall along the full spectrum, but many are in the above normal range in verbal ability and in the below average range in performance abilities.
many have dyslexia, writing problems, and difficulty with mathematics
lack common sense
concrete thinking (versus abstract)
Behavior
movements tend to be clumsy and awkward
odd forms of self-stimulatory behavior
sensory problems appear not to be as dramatic as those with other forms of autism
socially aware but displays inappropriate reciprocal interaction
Researchers feel that Asperger's syndrome is probably hereditary in nature because many families report having an "odd" relative or two. In addition, depression and bipolar disorder are often reported in those with Asperger's syndrome as well as in family members.At this time, there is no prescribed treatment regimen for individuals with Asperger's syndrome. In adulthood, many lead productive lives, living independently, working effectively at a job (many are college professors, computer programmers, dentists), and raising a family.Sometimes people assume everyone who has autism and is high-functioning has Asperger's syndrome. However, it appears that there are several forms of high-functioning autism, and Asperger's syndrome is one form.

Bicycle Riding: Pedaling Made Possible Through Positive Behavioral Interventions

Abstract: This study demonstrated how the tenets of positive behavior support could be used to teach an educational activity. Emphasis was placed on the implementation of practical strategies to minimize errors during instruction and maximize positive outcomes. A 9-year-old boy with Asperger Syndrome served as the participant, and the skill targeted for development was bicycle riding. An eight-step task analysis based on a highly individualized approach was used for instructional purposes. A changing criterion design was used to demonstrate progressively the emergence of bicycle riding over a span of 64 sessions. The implications of selecting target skills based on the criteria of social values, the employment of practical teaching strategies, and the scientific deduction are discussed.

Bosch's Cases: A 40 years Follow-up of patients with Infantile Autism and Asperger Syndrome

Abstract

Only a handful of longitudinal case reports on autism spectrum disorders exist in the literature. In this study, we present the follow-up data on two subjects with infantile autism and one with Asperger Syndrome over 40 years after initial diagnosis. Their childhood phenomenology had been described in detail in a historic monograph by Gerhard Bosch (1962, 1970). The trajectories of his three former patients were consistent with more recent larger scale empirical studies on outcome in autism and related disorders. While the two cases with core autism had poor outcomes compared to the person with Asperger Syndrome, all three of them showed a highly stable symptomology from childhood into adulthood. The study confirms the stability and validity of the diagnosis of autism over the years (German J Psychiatry 2004, 7:10-13).

Educational Interventions for Individuals With Asperger Syndrome

Educational Interventions for Individuals With Asperger Syndrome

HAROLD C. GRIFFIN, LINDA W. GRIFFIN, CHRISTINE W. FITCH, VERONICA ALBERA, AND HAPPY GINGRAS

Children with Asperger syndrome may frequently exhibit problems in the areas of social, behavioral, academic, motor, and sensory skills. Interventions are most effective if they are consistently implemented, use concrete information and visual structures, and utilize the assistance of parents, teachers, peers, and therapists.

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Employment and Adults with Asperger Syndrome

Employment and Adults with Asperger Syndrome

Karen Hurlbutt and Lynne Chalmers

Six adults with Asperger syndrome (AS) were interviewed about their experiences regarding employment. Methods included conducting initial and follow-up interviews, either in person, on the phone, or via e-mail. Repeatedly, difficulties and problems inter-
fering with employment success emerged. All of the adults who were interviewed had difficulty finding work that was commensurate with their ability levels and had difficulty maintaining jobs. Recommendations for parents and professionals working with adults
with AS are provided.

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MIDDLE-CLASS MOTHERS’ PERCEPTIONS OF PEER AND SIBLING VICTIMIZATION AMONG CHILDREN WITH ASPERGER’S SYNDROME

MIDDLE-CLASS MOTHERS’ PERCEPTIONS OF PEER AND SIBLING VICTIMIZATION AMONG CHILDREN WITH ASPERGER’S SYNDROME AND NONVERBAL LEARNING DISORDERS

LIZA LITTLE, PsyD, RN

Family Research Laboratory & Department of Nursing, University of New Hampshire, Durham, New Hampshire, USA

This article describes the yearly prevalence and frequency of peer and sibling victimization as reported by a large national sample of middle-class mothers of children with Asperger’s syndrome and nonverbal learning disorders. An anonymous, mailed survey was sent to families solicited from two national Internet sites for parents of children with Asperger’s and nonverbal learning disorders using the Comprehensive Juvenile Victimization scale and three questions designed to measure peer shunning. The overall prevalence rate reported by mothers of peer victimization was 94%. Mothers reported that almost three-quarters of their children had been hit by peers or siblings in the past year and 75% had been emotionally bullied. On the more severe end of peer victimization, 10% of the children were attacked by a gang in the past year and 15% were victims of nonsexual assaults to the genitals. Peer shunning also was common. A third of the children had not been invited to a single birthday party in the past year, and many were eating alone at lunch or were picked last for teams. Peer shunning was significantly correlated with peer bullying and assault. The high rates of peer shunning and peer victimization reported suggest that children with Asperger’s and nonverbal learning disorders may require further scrutiny and attention concerning their victimization experiences by peers and siblings. Implications for nursing professionals are reviewed.

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Meeting the vocational support needs of individuals with Asperger Syndrome and other autism spectrum disabilities

Abstract. The purpose of this pilot study was to seek consumer perspectives on strategies for improving vocational placement and job retention services for individuals with Asperger Syndrome and other autism spectrum disabilities (ASDs). For this purpose, 18 adults with ASDs were individually interviewed about their experiences within the workplace. Participant(s) were asked to (a) describe positive and negative aspects of their vocational experiences, (b) identify major obstacles to successful employment, and (c) recommend appropriate vocational supports to be provided by vocational rehabilitation counselors, employers and co-workers. Qualitative analysis of the interview transcripts revealed a number of common experiences and concerns which suggest the needs of individuals with ASDs should be recognized as different form others with more generalized developmental disabilities and/or mental retardation.

The Friendship Club: An After-School Program for Children with Asperger Syndrome

The Friendship club is a program designed and implemented by occupational therapy students and faculty to help teach children with Asperger Syndrome' ages 8-15, activities related to friendship and skills necessary to maintain friends.

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