Caring for a child with an autistic spectrum disorder over the life span

Abstract

Carers of children on the autistic spectrum have stressful lives (Randall & Parker, 1999). The aim of this study was to investigate the life of the carer, and in particular to examine how they have coped, their support systems and their health status. An original structured interview schedule with open and closed questions was devised to examine the life of the carers at six life stages. These were: 1) The Perinatal stage, this included pregnancy, birth and the neonatal period; 2) The Inklings stage, this was the time when carers suspected something was amiss with their child and they sought help; 3) Diagnosis; 4) The Primary School stage; 5) Adolescence; and 6) Adulthood. Sixty carers were interviewed and information was sought about; their social support systems, social withdrawal, social negativity, social networks, coping, problems, feelings, religiosity and unmet needs. Forty-one nominated supporters reported on their support for the carer, and their perceptions of the carers' needs.