‘You don’t look autistic’: A qualitative exploration of women’s experiences of being the ‘autistic other’

Abstract

There is currently a paucity of literature exploring the experiences of women on the autism spectrum. It is imperative research is conducted to capture the experiences of women on the autism spectrum and ensure appropriate support is provided to this cohort. Drawing upon a social constructionist framework, this qualitative research study sought to understand how psychological and socio-cultural constructions of autism spectrum condition and gender influence the well-being of women on the autism spectrum. Eight participants engaged in a semi-structured interview, with thematic analysis conducted to demonstrate the impact of gender roles and social expectations on the women’s identity and autism spectrum condition expression. The research highlighted the changing understandings of autism spectrum condition across a woman’s lifespan and the process and impact of resisting hegemonic autism spectrum condition categorisation. The findings demonstrate that social constructions of gender and stereotypical understandings of autism spectrum condition, which prioritise a deficit, medical model, have significant consequences for women’s well-being and subjectivity. The women experienced challenging formative years, but with diagnosis and the evolution and acceptance of their identities, they were able to resist negative narratives of autism spectrum condition, embrace their strengths and develop adaptive coping strategies. It is hoped this article generates insights for societal and clinical recognition to better support women on the autism spectrum.

Lay abstract

Most autism spectrum condition research addresses the neurological and biological causes of autism spectrum condition, focusing upon deficits associated with autism spectrum condition and behavioural interventions designed to minimise these deficits. Little is known about the lived experiences of adult women on the autism spectrum and how they navigate social expectations around gender, autism spectrum condition and gendered understandings of autism spectrum condition. The lived experiences of eight women on the AS will be shared here, with attention to how gendered expectations influence women’s experiences of autism spectrum condition, their sense of self and well-being. Findings showed these women struggled to reconcile the expectations of others, particularly early in life. The women had difficultly conforming to stereotypical ideals of femininity, yet as they aged, they felt less need to conform, valuing their unique style and behaviours. The women also rejected deficit-oriented descriptions of autism spectrum condition generated by the medical community, preferring to focus on their strengths and unique characteristics. It is hoped this article helps psychologists and the wider community to understand and meet the needs of women on the AS.