A Participatory Research Approach to Understanding the Experiences of Black, Asian and Minority Ethnic (BAME) Autistic Young People

Abstract

Autism is no longer considered a rare condition and is thought to affect one in 160 children worldwide (World Health Organisation, 2019), irrespective of culture and ethnic or racial groups (Tincani et al., 2009). While the growth of autism research has been exponential, the majority of existing research exploring the experiences of autistic young people is based on data from largely White ethnic backgrounds (Marks et al., 2000). There is a growing recognition that ‘race’ is more salient for BAME individuals therefore there is a need to study autism in BAME communities (Dovidio et al., 2009). The purpose of this study was to explore the views of BAME autistic young people using a participatory approach. The study aimed to (1) empower a BAME autistic young person as a co-researcher, and (2) explore the lived experiences of four BAME autistic young people. Using Aldridge’s (2017) participation model, this research was planned and delivered alongside a co-researcher. Collaboratively the researcher and co-researcher identified a research topic that was of importance to the co-researcher’s lived experience. Following on from this, research questions and a schedule for a semi-structured interview were developed in collaboration. Interviews were then carried out with four BAME autistic young people with the aim of eliciting their experiences of being autistic and BAME. The researcher and co-researcher analysed the data using Interpretative Phenomenological Analysis. This produced themes at an individual level as well as across-cases. Four superordinate themes emerged at group level based on participants’ experiences. Participants highlighted how The BAME communities’ constructions of autism often resulted in negative perceptions of their diagnosis due to lack of understanding and knowledge of autism. Participants also highlighted Self and Autism and the impact of their diagnosis on their self-concept. Relationships with peers emerged as a key area within the research as friends were found to be both a barrier and an asset to the participants’ sense of belonging. The final theme, The importance of positive relationships at the different levels highlighted friends, family and LSAs as support systems that have positively contributed to the experiences of BAME autistic young people. While there are similarities between the experiences of BAME autistic young people and findings from the literature review, the current study highlights that autistic young people from BAME communities have experiences that are unique to them as result of their cultural and racial identity. The research findings have implication for educational psychologists and school staff supporting BAME autistic young people including providing support that goes beyond autism and that encapsulates the cultural and racial identities of BAME autistic young people. The researcher and co-researcher hope that this study will contribute towards social justice by shifting the nexus of power as well as enabling participation and giving a voice to a marginalised group who have largely been neglected by autism research. Additionally, by describing and documenting how autistic young people can be involved in research successfully, the researcher hopes that it will contribute to increasing the participation of autistic young people in research, bridging the gap between theory and practice.