‘I just rolled up my sleeves’: Mothers’ perspectives on raising girls on the autism spectrum

Abstract

Little previous research has elucidated the everyday experiences of autistic girls or their families. This study used qualitative in-depth interviews to explore mothers’ experiences of the diagnosis, presentation and impact of caring for a daughter with autism. Nineteen women with autistic daughters (aged between 7 and 18) participated in the research, which took place in Ireland. Thematic analysis identified six themes: What’s Going On?; Road to Acceptance; Beyond the Stigma of Autism; Autism: Like a Girl; Mothers Holding It All Together; and Mothers Roll Up Their Sleeves. The analysis suggests that the path of autism in girls in Ireland is marked by diagnostic delays, social stigma, interpersonal difficulties, mental health comorbidities and parental stress. However, these challenges were offset by the resilience of mothers, buttressed by pride in their daughters and support from other women. Results will inform the development of policy and practice that is sensitive to the lived realities of autistic girls and their families. Lay abstract Autism in boys has been well researched but very little is known about the everyday experiences of autistic girls or their families. Mothers’ views and insights can be very helpful in increasing knowledge around the unique demands of raising a daughter with autism. This study conducted interviews with Irish mothers to examine their own experiences regarding (a) getting an autism diagnosis for their daughter, (b) their daughters’ personal characteristics and (c) the impact of caring for a daughter with autism. The study suggests that the route to an autism diagnosis for girls in Ireland is made more difficult by delays and missed diagnoses, and often followed by inadequate supports. Mothers described autistic girls as presenting with social challenges and mental health difficulties. Many mothers experienced judgement from other parents and family members, acute stress and mental health struggles. However, these challenges were offset by mothers’ resilience, pride in their daughters and support from other women. The findings of this study highlight the importance of specific support for autistic girls and their families.

Seeing it my way: A perspective taking intervention alleviates psychological distress in caregivers of autistic children

“…Findings reported here could have important implications. Indeed, accessing interventions outside of the home is challenging for caregivers, requiring considerable free time (Fowler & O'Connor, 2021). The current intervention, quick to use and accessible from home, circumvents these practical barriers.…”

Perception of Burden and Stress Among Mothers of Autistic Children in Pakistani Cultural Background

“…Characteristics of autistic children revealed that most were boys (72.6%) with higher ZBI scores in mothers of female children; also, there is a significant association of ZBI and PSS scores noted with the gender of the child. In an Irish study, Fowler and O'Connor [27] reported that parents of girls with ASD face a higher stress level along with social similar stigmatization is commonly seen in Pakistan and the brunt is born the mothers. In a local study, Sabih F. found that parents of female-child with ASD experience more stress than parents of male children [21].…”

The 'Aha' Moment

“…Studies focusing on the experiences of mothers to autistic girls identify "unique challenges" due to "female specific social pressures" (Fowler and O'Connor 2020, p. 2), "scepticism" (Navot et al, 2017, p. 538), and diagnostic delay (Fowler andO'Connor 2020, Navot et al, 2017). Anderson et al, (2020) found that the mothers they interviewed had an "early sense of something being different" about their daughters but "most did not arrive at autism as the explanation for this difference" (p. 1549), again highlighting the important role of professionals in raising autism as a possibility.…”

“…Navot et al, (2017) found that even after delays in receiving a diagnosis for their daughters, the mothers of autistic girls were twice excluded due to "a sense of exclusion from the neurotypical population and male dominant ASD population". However, studies have also highlighted many benefits to the diagnosis including the mother's pride in their daughters (Fowler and O'Connor 2020), an increase in empathy and understanding (Anderson et al, 2020), and a re-shaping of maternal competence and the creation of a "different bond" (Navot et al, 2017).…”