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.