The Experiences of Mothers of Children with a Diagnosis of Autism Spectrum Disorder: Perspectives from Qatar.

Abstract

The aim of the current study was to investigate the experiences of a group of British and Arabic mothers living in the State of Qatar and raising children with a diagnosis of Autism Spectrum Disorder (ASD). The study explored how mothers make sense of mothering in the context of their children’s diagnoses, how they cope and feel about their social support and well-being, and what they think about societal and cultural perceptions of autism, themselves as mothers, and their children.

An in-depth, qualitative, interpretive research approach was employed to explore how mothers negotiate their experiences of living with autism. Purposive sampling was employed to recruit a total of 9 mothers at a local centre for children with autism in Qatar. Individual in-depth, online, semi-structured interviews were conducted with the mothers to explore their experiences.

Thematic analysis was used to analyse data. A total of six themes, collated into two super-themes, were created to present the findings. Mothering Off the Beaten Path was a super-theme which included the following four themes: 1) Redefining Mothering, 2) Emotional Rollercoaster, 3) Tackling Problems, 4) Understanding and Support vs. The Lack Thereof. The second super-theme called Breaking Through the Socio-Cultural Perceptions of Normalcy in Pursuit of a Truly Inclusive World comprised two themes: 5) Judgement vs. Acceptance and 6) Fitting (Not Fitting) into the Society that Must Include All.

The findings of this study highlighted that mothering a child with a diagnosis of autism was associated with embarking on and navigating through an unforeseen mothering path, which involved an ambiguous loss of a ‘typical child’ and a reframing of the mothering experience. Being described as an emotional rollercoaster of a ride, the experience of mothering involved both difficult and positive feelings. Coping with a multitude of own emotions and the emotions and reactions of other people, the use of problem-focused strategies was found to be particularly helpful. Being understood by others was described as a key element of a healthy, non-judgemental support system based on acceptance, which could help facilitate improved coping and alleviate the emotional and mental burden. The lack of understanding, on the contrary, was discussed in the context of a lack of support from others and negative emotions. In terms of the socio-cultural attitudes towards autism, the feeling of being judged as a mother appeared to be related to perceptions of autism in the society. This, with some respects, varied between the accounts of Arabic and British mothers yet some commonalities relating to the socio-cultural connotations of the autism label in a broader context were identified.

Findings from the current study offered a lens into the complexity of the maternal experience of negotiating autism in Qatar, illuminating the diverse social and cultural context. The current study provided theoretical contributions relating to socio-cultural connotations and perceptions of autism, and more broadly disability, in a non-Western context. It also offered contributions to knowledge and practical implications relating to culturally sensitive, human-centred and neuroaffirming service provision. Adding to the autism literature globally, the current study highlighted the need for increased understanding, awareness, and acceptance of diversity of all people albeit their differences, which surfaced as a critical element of creating truly inclusive communities, societies, and a truly inclusive world. The limitations of the study and directions for future research were outlined.