"It's such a battle": A phenomenological account of raising a child on the autistic spectrum - a battle with bureaucracy and behaviour

Abstract

A sharp rise in the prevalence of Autism Spectrum Disorder (ASD), has led to it becoming one of the most widely researched neurodevelopmental conditions. Although the predominant focus in autism research is child centred, research on parent outcomes has highlighted considerable impact, in terms of parent’s mental health and wellbeing. Previous studies have shown that parents of children with autism suffer extremes of distress, in excess of that of parents of children with other disabilities. However, why this is so is less understood. Interpretative phenomenological analysis was used to analyse data, gathered from semi-structured interviews of seven parents raising children diagnosed with autism. Through qualitative investigation of parents' lived experience, four main themes emerged; bureaucracy, behaviour, socio-affective impact and a child-centred focus, with bureaucracy emerging as the superordinate theme. Analysis of the data revealed two key areas underpinning parental distress; a protracted diagnostic and statement-of-education process and an absence of professional support and information to manage challenging behaviour. Suggestions for improvement were discussed, in terms of streamlining bureaucratic processes, through better awareness of autism in frontline health professionals and the provision of parent training.