Perceptions and experiences of UK-based mothers of autistic daughters in relation to the potential affordances and constraints of an autism diagnosis

Mairi Evans
,
Chris Papadopoulos
,
John Burnham

Berkshire Healthcare NHS Foundation Trust
,
The TAOS Institute

Research Output: Contribution to journal Article Peer-review

Open access

Abstract

Whilst there is a growing body of research about autistic girls, much less is known about the experience of mothering an autistic girl, and the potential impact of the diagnosis. This study qualitatively explored the diagnostic journey of 12 mothers in the UK to identify the meanings attributed to their daughter's diagnosis. A thematic analysis was applied with themes examined through the lens of the CMM LUUUUTT model to further explore the stories lived and told by the mothers. Eighteen themes linked to perceived affordances, perceived constraints/constraints of perception, experienced affordances and experienced constraints. Participants highlighted the impact of autism myths and stereotypes which influenced identification, referral, diagnosis and ongoing support for the girls. Myths and stereotypes told about autism also played a significant role in the mothers lived experience of the diagnosis. An affordance of diagnosis was a new understanding about their daughters' needs, which led to new parenting styles, letting go of blame and resisting perceived societal ‘oughtisms’ about how parenting should be. Whilst the diagnosis was seen as relationally transformative, challenges were described in accessing emotional or educational support for their daughter's post-assessment.