Academic journal article International Journal of Child Health and Human Development

To What Extent Is Caring for Children with Autism Spectrum Disorders "Emotional Work?"

Academic journal article International Journal of Child Health and Human Development

To What Extent Is Caring for Children with Autism Spectrum Disorders "Emotional Work?"

Article excerpt

Introduction

Autism spectrum disorders, (ASDs) are characterised by a triad of topographies; rigidity of thinking, challenging behaviour, and social-communication problems (1). Rigid thought processes can lead children with ASD becoming distressed by change of any kind, which often leads to them exhibiting challenging behaviours. The need to minimise change in order to manage disruptive behaviour can have an adverse emotional impact upon the carers of ASD children, most especially their parents. The child with ASD may have a fixation upon one cognitive position, often evidenced in an obsession with one particular activity, and this is a common sign of the inflexibility associated with the condition (2). However, the child's capacity for highly focused attention on a favourite activity or interest can also lead to extraordinary skill in their chosen area or field (3). This research reviews the literature that has explored the emotional impact that these interlocking features of autism have on parenting, in order to provide a contribution to current academic research.

Edmonds and Beardon (4) wrote of the 'mindblindness' of those with ASD, who find it difficult to manage their social identity due to a deficit of empathy with others (4). This lack of ability to imagine another person's inner world, is based on an inability to identify the social cues embodied in nonverbal behaviour; such as facial expressions, tone of voice, gaze, and posture (5). The term 'mindblindness' has been coined to refer to the apparent surface sociability of those with ASD, yet their inability to engage in an emotionally congruent way, due to the lack of inwardly experienced social identity (6). The social-communication difficulties that characterise ASD rest on an inability to isolate social markers of inner, emotional differences, between oneself and others. Such communication difficulties make interacting and expressing feelings problematic for ASD children. Thus, inappropriate, disruptive behaviours may arise that are stressful for parents to manage. This research found that the correlation between managing the challenging behaviour of children with ASD and parental stress, can become an iterative process that only external intervention can ameliorate. Research by Dabrowska and Pisula (7) highlights the lack of self-sufficiency imposed upon parents, due to the strain entailed in managing challenging behaviour at home and in public (7). In addition, Carr et al. (8) argued that the combination of managing challenging behaviour and minimising change in the home, can lead to a progressive social withdrawal that places considerable strain on the mental health of parents of ASD children.

Little qualitative research, especially research in the United Kingdom (UK), has been conducted that analyses the emotional impact of parenting a child with autism spectrum disorder. This study uses Hochschild's term (9), "emotional work" to describe the emotional effect of looking after a child with the triad of difficulties that characterise autism spectrum disorder (9). A holistic understanding of the psychological effects of parenting children with autism spectrum disorders, based upon the experiential accounts of parent's themselves, is at present underdeveloped. The insights that have been generated by such research could benefit multiple disciplines, including those involved in the educational, health, social care and policy sectors, as well as supporting the optimal development of children with autism spectrum disorders and the well-being of their families.

Methods

The research question driving the literature review process was 'what is the psychological effect of parenting children with ASDs?' The inclusion criteria for both quantitative and qualitative studies were: Has the paper been peer reviewed? Is the paper less than 10 years old? Are the findings from the United Kingdom? Does the paper explore the psychological and/or emotional effects of the experience of parenting an ASD child? …

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