Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder

Abstract

An autism diagnosis in adulthood can increase women’s self-compassion and inform appropriate supports. This study explored what helped and hindered autistic women when accessing an adulthood autism diagnosis in Australia. Ten autistic women diagnosed as adults within the past 5 years participated in a semi-structured interview about their experiences of accessing a diagnosis. Framework analysis was used to identify barriers and facilitators on person, provider and system levels. Person-level factors included women’s recognition of their autism, motivation, preparation, social support and approach during the assessment. Provider-level factors related to providers’ level of knowledge and skill in working with autistic women, as well as the women’s experience of being dismissed or misdiagnosed. Interactions between person- and provider-level factors highlighted that the diagnostic process is relational. System-level factors included the requirements of the diagnostic process (time, financial costs, and technology) and the nature of diagnostic criteria and assessment tools used. These factors provided the context in which person-level and provider-level factors operated. The experiences of participants highlight improvements that could be made to accessing an adulthood autism diagnosis for women in Australia, including provider knowledge of the heterogeneity of autism and the development of resources to help autistic women prepare for their diagnostic assessment. Lay abstract An autism diagnosis can have a big impact on women and make it possible to access support. This study explored women’s experiences of being diagnosed with autism as an adult in Australia, to try to understand what was helpful (facilitators) and unhelpful (barriers) for them during this process. We interviewed 10 autistic women who had been diagnosed in the last 5 years. Framework analysis was used to understand the data. We wanted to understand barriers and facilitators relating to the individual participants, the professionals they saw and the system they went through for their diagnostic assessment. Women reported that being able to recognise they were autistic, being motivated, preparing for the assessment, having social support and unmasking to be themselves were helpful during the diagnostic process. They reported that having a knowledgeable diagnostician who made accommodations for their needs assisted them during the assessment process. When providers dismissed the participants when they first raised the possibility they were autistic, it delayed them in seeking an assessment. At the system level, the women in this study found some aspects of the healthcare system difficult to navigate, particularly costs and long waitlists. Some found the assessment tools used were not well suited to them. The experiences of the women in this study highlight improvements that could be made to accessing an adulthood autism diagnosis in Australia. These include improving provider knowledge of the varied presentation of autism and the development of resources to help autistic women prepare for their diagnostic assessment.

Professionals’ perspectives on neurodiversity-affirmative autism diagnostic assessment

“…This included professionals adopting an accessible, clear communicative approach and the provision of a comfortable, low-stress physical environment, including one that caters to sensory needs. Our findings echo prior research that has highlighted the importance of professionals providing transparency, clarity and accessible physical environments within diagnostic assessment (Crane et al, 2018;Murphy et al, 2023) and healthcare environments more generally (e.g. Doherty et al, 2022Doherty et al, , 2023Shaw et al, 2023).…”

Autistic adults’ perspectives and experiences of diagnostic assessments that include play across the lifespan

“…The findings imply that for these individuals, observations of play (such as via the ADOS) may be misleading for professionals. This is in line with literature demonstrating that masking is a diagnostic barrier for women or girls (Lockwood Estrin et al, 2021;Murphy et al, 2023), and supports research showing that professionals consider the ADOS to lack sensitivity when diagnosing autistic women or girls, because of masking (Hayes et al, 2021(Hayes et al, , 2022. We highlight that some autistic adults share similar views in relation to the use of play.…”

“A perfect storm”: Autistic experiences of menopause and midlife

“…The lack of measures to operationalize autistic features means that we cannot clearly and exclusively link certain menopausal experiences or difficulties to autism rather than other characteristics common but not unique to autistic people. The authors recognize the barriers to adult autism diagnosis ( de Broize et al, 2022 ; Harmens et al, 2022 ; Huang et al, 2022 ; Murphy et al, 2023 ), which was the reason we did not require a formal autism diagnosis for participation in the study. A large number of older autistic adults are undiagnosed, and many of them are women/AFAB ( O’Nions et al, 2023 ).…”