The lived experiences of autistic mothers

Abstract

This thesis sets out to understand the lived parenting experiences of autistic mothers through an Interpretative Phenomenological Analysis (IPA) approach. There is limited research using an IPA approach with autistic women. Of the research that does exist, few have tried to understand the experiences of autistic mothers. There is a lack of services for autistic adults, which is most notable among those who provide a caregiving role (NICE, 2012). As such, there is a need for research in this area to inform practice and aid service provision.

The study applies IPA to analyse data from semi-structured interviews with ten autistic mothers. The interviews were adapted using a template based on Flanagan's (1954) Critical Incident Technique (CIT) to reduce stress. This was a rationale that MacLeod (2016) proposed when choosing to use this technique with autistic participants in her research.

Three overarching themes were identified, including experiences of the diagnostic process, becoming a mother and being a mother. The themes were further clustered into six subthemes: the professional and personal journey associated with the diagnostic process, pregnancy and giving birth, and experiences of feeling different and judged. In reviewing the autistic mothers’ stories, the medical or social models of disability could not fully explain their experiences. These experiences were understood by applying the Interactive Model of Disability alongside Goffman's Model of Social Identity, particularly his writings on Stigma (Goffman, 1963). The Interactive Model of Disability helps bring insight into how social and environmental factors contribute to disability, whilst Goffman’s Model provides a lens to analyse the personal strategies used by the women to cope with the stigma they experienced.

The experiences identified the need for increased education, training and understanding of autism amongst various professionals, particularly those in regular contact with autistic mothers. Alongside this and in keeping with the Interactive Model of Disability, the necessity to change policies and procedures to ensure appropriate accommodations are implemented for autistic mothers as service users were apparent. This was particularly notable for maternity services, principally regarding the sensory experiences this group of women identified during pregnancy and whilst giving birth. Their experiences highlighted the need to understand how mental health difficulties present differently in the autistic population, particularly during the diagnostic process, during pregnancy and shortly after giving birth. The final implication taken from the mother’s experiences relates to diagnostic approaches. While obtaining a diagnosis fits within the medical model, many mothers clearly stated it enabled them to understand themselves better. However, the mothers’ experiences identified the need for more effective services for diagnosing females, particularly adult females, as well as a change to the current diagnostic classification systems to reflect the uniqueness of the female phenotype. There is a need to use appropriate tools with adults and professionals who conduct the assessments to understand better how autism presents in autistic females and to use relevant tools and experiences as part of the assessment process.

Date of Award	Jul 2024
Original language	English
Awarding Institution	Queen's University Belfast
Supervisor	Mandi MacDonald (Supervisor) & Lisa Bunting (Supervisor)