Disabling families: How parents experience the process of diagnosing autism spectrum disorders

This is an account of a phenomenological investigation, employing ‘Lifeworld’ as the methodology. The study describes how six parents experienced the process of their children being ‘diagnosed’ as having autism spectrum disorders (ASDs) and identifies factors which contributed to these experiences. The investigation arose out of the researcher’s engagement with parents who appeared to be challenging the professional preoccupation that early diagnosis and assessment of autism is central to effective family support. Interviews were conducted with three sets of parents over a period of one year with the researcher seeking to understand how the diagnostic process impacted upon all the ‘fractions’ of the lifeworld. The findings suggest that ‘intervention’ and ‘normalisation’ continue to be the dominant professional discourse but that parents find ways of rejecting and subverting these. Professional intervention, although intended to enable and empower parents was, in fact, experienced, by the parents in this study, as disabling and disempowering. It is proposed here that this was the result of professional practice being predicated on individual model principles, focused on changing the child and the family. The evidence from this study indicates that parents of children with ASDs have a more balanced experience of parenting than the traditionally negative focus of autism research would suggest. Parenting is made problematic not so much by children’s impairments but by encountering exclusionist professional practices. Guidelines are proposed for how professionals might begin to offer more effective support to parents by engaging with a social model agenda focused on celebrating achievement and enabling aspirations. ‘Lifeworld’ is evaluated as a methodology ideally suited to emancipatory research and as a means of enabling non-disabled researchers to offer valid contributions to the disability movement.