An occupational perspective on the lived experience of menstruation for autistic adults

Menstruation is known to have potentially adverse impacts at multiple levels of occupational performance (Armour et al., 2019). Little research has to date, however, directly investigated the everyday menstruation experiences of autistic individuals, for whom menses and menarche are widely thought to be particularly occupationally disruptive (Steward et al., 2018). In this paper, a qualitative research design was employed to address the lived experiences of menstruation among a small set (N=6) of autistic adults in the UK. With institutional ethical approval (reference: 2511/SRPM/2021), in-depth online interviews were conducted. These yielded 34,734 words of transcript, which were thematically analysed using the six steps described by Braun and Clarke (2006), and interpreted through an Occupational Perspective of Health Framework (Wilcock and Hocking, 2015). Three interconnected global themes were identified. 1. ‘Sense of self’, addressing participants’ sensory overload and amplified experiences of anxiety, ‘brain fog’ and concern with cleanliness. 2. ‘Attributional work’, addressing events and contexts which were taken to trigger and/or exacerbate key problems (such as the need to use public restrooms). 3. ‘Reclaiming orderliness’, addressing participants’ pragmatic strategies for overcoming the increased unpredictability inherent in their lives during periods. It was concluded that menstruation poses specific, significant challenges for autistic individuals which require autism-specific solutions. These challenges impact individuals’ ability to particularly perform occupations of self-care, productivity, and leisure. As such, Occupational Therapists have a key role to play in the provision of support to address the impact of menstruation on occupational engagement and participation. References: Armour, M., Parry, K., Al-Dabbas, M., Curry, C., Holmes, K., MacMillan, F., Ferfolja, T. and Smith, C.A. (2019) 'Self-care strategies and sources of knowledge on menstruation in 12,526 young women with dysmenorrhea: A systematic review and meta-analysis', PloS One, 14(7), pp. e0220103. doi: 10.1371/journal.pone.0220103. Braun, V. and Clarke, V. (2006) 'Using thematic analysis in psychology', Qualitative Research in Psychology, 3(2), pp. 77-101. doi: 10.1191/1478088706qp063oa. Steward, R., Crane, L., Mairi Roy, E., Remington, A. and Pellicano, E. (2018) '“Life is much more difficult to manage during periods”: Autistic experiences of menstruation', Journal of Autism and Developmental Disorders, 48(12), pp. 4287-4292. doi: 10.1007/s10803-018-3664-0. Wilcock, A.A. and Hocking, C. (2015) An Occupational Perspective of Health. Thorofare, NJ: SLACK Incorporated

Improving talking therapies for autistic people

Background: Autistic people are more likely to experience common mental health conditions such as anxiety and depression. Whilst there is a substantial evidence base for psychological therapies for anxiety and depression and well established NHS Talking Therapies services, there is limited evidence on what works best for autistic people in this context. In particular, there is limited guidance on what adjustments and adaptations may work best for autistic people accessing psychological therapies services. Many autistic adults will have received a diagnosis recently and other people will be waiting for an assessment so will have added uncertainty about how what may help them to access services effectively. In this project, we aimed to understand the experience of autistic people (and those waiting for an autism assessment) when accessing Talking Therapies and improve the offer to autistic people through service redesign and training with clinicians. Methods: We used mixed methods in the project including qualitative analysis of semi-structured interviews with autistic people and clinicians in Talking Therapies services and quantitative analysis of Talking Therapies training needs and evaluation of the impact of training and service redesign. Results and Findings: We identified a number of themes from our interviews with autistic people and clinicians which has helped us to better understand the challenges to supporting autistic people in Talking Therapies. Both autistic people and clinicians reported that Talking Therapies services need significant adaptation (including clinician training) in order to meet the needs of autistic people. We designed training which clinicians reported had a positive effect. We also made changes to a Talking Therapies service to how they identified autistic people who accessed their service which led to approximately 5% of clients being identified as autistic (or having similar needs that require adaptations to therapies). Next steps: We will work to develop a large-scale research funding proposal to NIHR to build on this work and help evaluate the usefulness of these service changes particularly the impact they have upon autistic people’s experience of Talking Therapies. As part of this research and wider service development, the protocol for identifying autistic people could be tested in a wider number of Talking Therapies services and the training programme could be used in other services (following further refinement and depending on resources)