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'.

The main aim of the study was to consider how parents' experiences of bringing
up a child with autism might inform professional practice and provision. The
enquiry investigated how mothers made sense of their experiences and the
effects of bringing up their child, including their coping mechanisms and the
arising key messages for practice.
The study was based in a LA context and was carried out by a practising
Educational Psychologist (EP). This research practitioner orientation required
critical or action research elements to merge with interpretative method. Thus,
initial contact was made with autism parent groups to ground the study in a
local context and to develop research and interview questions. Critical action
planning resulted from concerns arising from these groups.
Semi-structured interviews were carried out with six mothers whose
circumstances in bringing up their child had been particularly challenging. Their
children attended both mainstream and special autism provision in the primary
and secondary school sectors. The themes emerging from the powerful joint
interpretative account of the mothers highlighted a deconstruction and
reconstruction of self and expectations with unfulfilled wishes and control as
key themes. Life impacts involved the child as central focus, an all-pervasive
constant battle with self and others, including family, professionals and
provision with associated child management issues being present. These key
themes impacted on professional practice; and provision so that the importance
of informed professional awareness, truly listening professionals, accepting
school identity and service trust were highlighted.
Professionals and parents should develop an understanding and acceptance of
the child and each other, which still enables challenge and change. The
position of fathers in family support needs further research and careful
professional consideration. Professionals, including EPs, need to address the
way they listen to parents. Some recommendations for all agencies and parents
are provided which should lead us to a deeper understanding of humanity.