The Role of Self-help Groups in Overcoming Challenges Faced by Mothers of Autistic Children

Having a child with autism spectrum disorder (ASD) inevitably changes the family’s daily life. Parents are likely to encounter several challenges and resort to varying strategies to cope with these recurring challenges. Self-help groups composed of others with similar experiences provide a valuable source of support. This study aimed to explore the challenges encountered by mothers of children with ASD in Saudi Arabia (SA) and investigating the significance of self-help groups in their lives as primary caregivers.
This study adopted a sequential mixed method of quantitative and qualitative approaches, including a closed-ended self-completion questionnaire followed by semi-structured interviews. In the first phase, the questionnaire was completed by 92 mothers of children with ASD. In the second phase, 25 mothers of children with ASD were individually interviewed. Questionnaire data were subjected to descriptive statistical analysis, while interview data were thematically analysed. This research was conducted within the framework of the pragmatic paradigm, and a purposeful sample was used. Ecological systems theory has been applied as the theoretical framework.
The findings from this study highlight some of the most challenging and salient social problems faced by mothers in caring for children with ASD, including a lack of ASD awareness in the community, a lack of services, financial issues and difficulty in accessing resources. The data suggest that a major concern was the stigma associated with ASD that is prevalent in Saudi society. Mothers expressed their concerns about fearful reactions from society and the social stigma that occurs from having a child with ASD. The findings of this study suggest that self-help groups offer numerous benefits to mothers of children with ASD, including the benefits of sharing a common experience. Mothers reported personal gains from the sharing of knowledge and information, learn from others’ experiences and feel a sense of belonging. The current research illuminates the support that self-help groups provide, including keeping members informed of available financial resources and dealing with the lack of services available to children and caregivers. Self-help groups offer alternative solutions to day-to-day challenges and a sense of safety and comfort that reduces feelings of isolation. Questionnaire results indicated that mothers felt strongly that public facilities were not designed for children with ASD. All mothers agreed that positive and effective communication within self-help groups includes unconditional acceptance and speaking freely with people with similar experiences, especially those who are stigmatised and who feel socially isolated. Findings also showed that a self-help group could provide help to a mother beyond what the specialist professional could provide because of cultural and social considerations; nevertheless, a self-help group is not a substitute for official support and care. Some limitations in self-help groups’ operation also emerged, including that some participants could dominate discussions and others avoided discussing controversial topics.
This research offers insights into the challenges faced by mothers of children with ASD and their experiences with self-help groups, which is an under-researched topic in SA. Implications of the findings and suggestions for future research are discussed.