A Qualitative Exploration of the Female Phenotype and Experience of Autism Spectrum Disorder

Background:

Autism spectrum disorder (ASD) is a neurodevelopmental condition characterised by persistent deficits in social interaction, social communication and restricted and repetitive patterns of behaviour, from a young age. One of the most striking features of ASD is the high male to female ratio, which varies across the spectrum with most studies quoting 4-5:1. Much ASD research involves males only, perhaps leading to a biased understanding of the full spectrum of ASD and its manifestations. If current ASD diagnostic measures and processes are largely based on data from males, these may not meet the needs of females on the autism spectrum.

Objectives:

This study aimed to explore qualitatively the female ASD phenotype and experience, as a step towards developing trait and diagnostic measures that better recognise autism in women and girls.

Methods:

Participants were 18 females with a clinical diagnosis of ASD(n=16) or self-diagnosed ASD (n=2) aged between 11-55 years, and 4 mothers of women with ASD. Participants were invited to attend focus groups, face-to-face interviews or telephone interviews, which were audio recorded and transcribed. A topic guide was used within the session and included three overarching topics; diagnostic pathway, impact of ASD, and resilience and coping. A semi-structured interview style was used allowing in-depth answers to be collected. Two members of the research team conducted a thematic analysis following guidelines by Braun & Clarke, 2006.

Results:

From an abundance of relevant transcript data, seven overarching themes comprising 21 subthemes were identified. The seven major themes were: (1) “fitting in with the norm” ,which encapsulates the attempts, both successful and unsuccessful, that women make to attempt to fit in with their peers and society; (2) “gender”, which considers the differences between genders as well as the concept of fitting into a gender stereotype; (3) “negative components of ASD” explores the difficulties faced by the women that are associated with having ASD; (4) “coping strategies” identifies techniques adopted by the women to cope with their condition; (5) “the perspective of others” considers how other people, including peers and family members, understand and are impacted by ASD; (6) “potential obstacles for woman with ASD” uncovers the barriers and difficulties faced by the women; and, finally, (7) “positive aspects of ASD” highlights some of the benefits of having ASD and ways women have learnt to understand their condition.

Conclusions:

By capturing qualitative accounts of women’s experiences of autism, we hope to improve understanding of the obstacles and challenges faced by those with and without a diagnosis. It is hoped that the data can inform the focus of and measures used in future research. Furthermore, it is hoped that the study highlights the importance of including female stakeholder voices within ASD research.