Listening to parents of children with autistic spectrum disorder : using interpretative and critical research approaches to consider 'how parent experience of bringing up a child with autism can inform professional practice and provision'.

摘要

The main aim of the study was to consider how parents' experiences of bringingudup a child with autism might inform professional practice and provision. Theudenquiry investigated how mothers made sense of their experiences and theudeffects of bringing up their child, including their coping mechanisms and theudarising key messages for practice.udThe study was based in a LA context and was carried out by a practisingudEducational Psychologist (EP). This research practitioner orientation requiredudcritical or action research elements to merge with interpretative method. Thus,udinitial contact was made with autism parent groups to ground the study in audlocal context and to develop research and interview questions. Critical actionudplanning resulted from concerns arising from these groups.udSemi-structured interviews were carried out with six mothers whoseudcircumstances in bringing up their child had been particularly challenging. Theirudchildren attended both mainstream and special autism provision in the primaryudand secondary school sectors. The themes emerging from the powerful jointudinterpretative account of the mothers highlighted a deconstruction andudreconstruction of self and expectations with unfulfilled wishes and control asudkey themes. Life impacts involved the child as central focus, an all-pervasiveudconstant battle with self and others, including family, professionals andudprovision with associated child management issues being present. These keyudthemes impacted on professional practice; and provision so that the importanceudof informed professional awareness, truly listening professionals, acceptingudschool identity and service trust were highlighted.udProfessionals and parents should develop an understanding and acceptance ofudthe child and each other, which still enables challenge and change. Theudposition of fathers in family support needs further research and carefuludprofessional consideration. Professionals, including EPs, need to address theudway they listen to parents. Some recommendations for all agencies and parentsudare provided which should lead us to a deeper understanding of humanity.