How do mothers of autistic girls perceive and experience the potential affordances and constraints of diagnosis for their daughters?

Abstract

Research highlights increasing awareness that autism can present differently in girls, and that girls in the UK wait longer to be identified, referred, and diagnosed in comparison to their male counterparts. Whilst there is a growing body of research about girls, and the experience of mothering an autistic girl, less is known about the impact of the diagnosis itself. This study, conducted from a social constructionist viewpoint, explored the diagnostic journey of 12 mothers in the UK to identify the meanings attributed to their daughter’s diagnosis. A thematic analysis identified 18 sub-themes which were grouped into perceived affordances, perceived constraints/constraints of perception, experienced affordances, and experienced constraints. Themes were then examined through the lens of the CMM LUUUUTT model (Pearce 1999, 2007) exploring the stories lived and told by the mothers and how these stories influenced, and were influenced by, the autism diagnosis. The analysis highlighted affordances and constraints in relation to diagnosis. A significant theme was the impact of autism myths and stereotypes which influenced identification, referral, diagnosis, and ongoing support for the girls, and which led to the majority of the mothers feeling that their early concerns went unheard. Myths and stereotypes told about autism, also played a significant role in the mothers lived experience of the diagnosis and diagnostic process for their daughters. An affordance of diagnosis was a new understanding about their daughter’s needs, which led to them adapting their parenting styles, letting go of blame, and resisting perceived societal ‘oughtisms’ about how parenting should be. Whilst the diagnosis was seen as useful and relationally transformative, all of the mothers described challenges in accessing emotional or educational support for their daughter’s post assessment, with the suggestion that they were seen as ‘not broken enough’. This research has potential to inform policy and practice and to increase awareness and understanding about autism diagnosis and girls. In particular the impact of societal myths and stereotypes about autism, the importance of listening to mothers when they raise concerns about their daughters, and the need for pre assessment support and information that can support mothers, and fathers, in understanding the specific needs of their daughters with, or without, an autism diagnosis.