Addressing Intersectional Invisibility: Exploring the lived experiences of Black African mothers raising an autistic child in the UK

Whilst autism is an extensively researched area, the vast majority has focused on participants from a White Western background. Findings derived from such research have therefore been applied to the experiences of parents of autistic children from the global majority. However, there is increasing emphasis on the important role of culture, ethnicity and race in people’s beliefs, views, and experiences. Research exploring lived experiences of the global majority is therefore needed to diversify current knowledge. The purpose of the study was to explore the lived experiences of Black African mothers raising autistic children in the UK.

This study adopted the participatory model by recruiting a Black African mother of an autistic child as a co-researcher to work collaboratively with during the research process. Semi-structured interviews were conducted with Black African mothers to gain their views and experiences of raising an autistic child. Interpretative phenomenological Analysis (IPA) was used for the data analysis to gain a deep understanding of the participants’ lived experiences. Firstly, individual-level themes were produced for each participant. Group-level themes across participants were then produced, reviewed, and finalised with the co-researcher.

Five superordinate group themes emerged from the mothers’ lived experiences, which seemed to have an underlying cultural link. The first theme was cultural construction of autism. Participants expressed a strong narrative about the negative perceptions of autism within their communities that stemmed from a reduced awareness and understanding of autism. Participants also highlighted accessing support as a key experience explaining that initially, they disengaged from professional services due to shock and denial. However, once mothers felt more accepting of the diagnosis, mothers described difficulties in gaining support for their children. The role of religion played a significant and often conflicting part in the mothers’ lives, acting as both supportive but also blocking their full acceptance of the autism diagnosis. Religion was also believed to contribute to the negative views of autism within their culture. The role of race was another theme that emerged from participants. Many wondered if being racialised as Black negatively impacted their experiences, and there were hopes for more culturally specific parent support groups. The final theme, positives, highlighted strengths noted by mothers in their autistic children and the personal growth participants felt they had gained from being a parent to an autistic child.

The study’s findings are important for EPs and others working with global majority families and children. There is a clear need to offer culturally sensitive support encompassing racial and cultural identity. The findings add to emerging research into autism from the perspective of global majorities. It is hoped this research acts as a form of social justice by empowering a Black African mother as a co-researcher and providing an opportunity for the voices of a marginalised group to be centred and heard.