Negotiating self, autism, adolescence and school: a participatory inquiry

The social experience, including that within the school environment, is highly relevant to the developing sense of self of adolescents. Yet, a lack of focus has been given to the sense of self of autistic young people in this influential school setting. Instead, research has regularly explored autistic sense of self in terms of what is lacking, in comparison with ‘normative’ others. Autism advocates critique such autism research for the exclusion of autistic voice, in this predominant focus on identifying deficit development. My research joins these critiques, taking a participatory, Critical Autism Studies approach, with eight autistic adolescents, who attended a mainstream secondary setting. This year-long study placed autistic adolescents’ conceptualisations and presentations of the self at the fore, which revealed the heterogenous complexity of their developing sense of self. Participants illustrated how they negotiated a wide range of social influences, with the self actively presented according to social context. This included the social context of school. The role of school pupil was considered as an academic and social role, with the school environment identified as a key influence on a positive or negative sense of self. These findings challenged reductive deficit narratives, which suppose a homogenised, unreflective, anti-social self-view. Within this, it is argued that altering the research methods employed enabled autistic adolescents to share these views and experiences, which countered deficit discourses. This alternative approach was present in the choice-based methodology employed, with participants choosing from a range of visual, oral, and written methods, which could then be further adapted to meet their preferred mode of communication. This was a continuously flexible process, evolving based on persistent dialogue with participant preferences, to ensure that their full contribution could be heard. Taking a participatory stance, active participation and empowerment across the project was prioritised. As such, the inclusive process was also evaluated by participants, offering an insider-evaluation of a rarely taken choice-based research approach. These detailed evaluations address the dearth of insider, participant perspectives on the participatory research process for autistic young people, thus providing valuable insights for future research, which also aims to prioritise the autistic voice.