Challenges faced by parents of children diagnosed with autism spectrum disorder

Abstract

Abstract:Few studies address the daily challenges faced by parents of children diagnosed with autism spectrum disorder. This article reports on a qualitative interview study with 20 parents exploring their experiences, challenges faced, and what has helped them to cope. A thematic analysis of the data identified five core categories: Dealing with challenging behaviour; dealing with judgements from others; lack of support; impact upon the family; coping and the importance of appropriate support. The findings emphasise where the parents themselves believe they still require additional support. It raises key strategies and resources that parents have found helpful.http://mc.manuscriptcentral.com/jhealthpsychology Journal of Health Psychology .

Distress and Psychological Growth in Parenting an Adult Child with Autism Spectrum Disorder and Aggression

“…Undesirable emotional and negative psychological outcomes that occur whilst parenting a child with a diagnosis of ASD who is aggressive have been well-documented (Ludlow et al 2012;McStay et al 2014;Mount and Dillon 2014;Pozo et al 2014;White et al 2011). However, feelings of stigmatisation and social isolation predict parental stress more strongly than any other parent-child relational factor (Gray 2002;Gupta and Singhal 2005;Schieve et al 2007).…”

Development of an Occupational Performance Questionnaire for preschool children with Autistic Spectrum Disorder

“…In addition sleep 14 and eating disorders 15 have been associated with sensory processing disorders indicating that occupational performance may be related to the high-over and -under responsive sensory modulation in these children 16 . The lack of independence in OPAs in children with ASD can result in prolonged dependency on others, which affects not only the child's quality of life, but also that of their family [17][18][19][20][21] . Research indicates that family functioning is affected by the child's poor sleep patterns, having to constantly plan ahead due to routinised and ritual behaviours, giving up family outings and holidays due to the child's behaviour and dependence and one or both parents having their careers interrupted by the child's need for care 17 .…”

“…The effect that the lack of ability in the OPAs of pre-school children with ASD, has on family functioning is difficult to measure objectively since families perceive their challenges differently. Furthermore the spectrum of mild to severe presentation of ASD is another variable relating to the child's individual differences in sensory processing, their emotional developmental level and their level of OPA functioning and the support that they receive from caregivers 16,20,21 . Little research has been published on improvement in the OPAs of children with ASD, although assessing changes in these areas have been documented as being important for parents 22 .…”

“…The type of items and layout of international outcome measures were also reviewed 26,27,29,40 . A second construct that considered the effects of the child's ability in occupational performance on family functioning 19,21,28,41 was included in line with the familycentred intervention for ASD. Once the key constructs and domains of the OPQ had been identified from a literature review 15,20,42 and the clinical experience of the researcher, items were selected which targeted deficits in the child's OPAs and the impact of these deficits on family life.…”

The Peripheral Focus on the Psychological Parameters of Parents of Autistic Children in the Intervention Methods: A Review and Recommending the Strategy, Focusing Psychological Parameters of Parents of Autistic Children in Intervention Methods

“…Caring for children with ASDs is challenging and affects family life. 38 Therefore, the classical peripherally focusing interventions on the parents with ASD child is suggested (Figure 1). This model is intended to be prescriptive in nature, encouraging those engaging in the ASD intervention and research to focus on psychological mindedness.…”