What makes adolescents diagnosed with ADHD Tik (Tok)? The lived experience of ADHD in online and offline worlds

Abstract

This qualitative study sought to gain insight into the lived experiences of adolescents who had either been diagnosed with ADHD by a medical professional or who self-identified with characteristics of the phenomenon. The study examined how this group of adolescents navigate online and offline worlds, exploring how experiences in both these contexts shape identity, agency and connection to others. Additionally, the project investigated how these adolescents engage with and perceive information about ADHD in the social media platform TikTok. The final aim of the study was to gain a clearer understanding of the benefits and risks of the online world for these young people. Ten participants, recruited from the private school sector in Johannesburg, participated in the study. This study produced two main sets of data, the first data set contained visual components consisting of collages, bodymaps, photographs, music lyrics and TikTok videos, and the second comprised of transcripts of talk generated during data collection sessions and individual semi-structured interviews. Both narrative and thematic analysis were used sequentially of one another. Two levels of analysis were conducted, firstly the construction of four descriptive narrative portraits which presented participants’ experiences and perceptions within their offline and online worlds. Secondly, thematic analysis across all the data sets, identifying similarities and differences between the participants, which were expanded according to generalised themes. For most participants, an ADHD label gave them a plausible and simplified reason for their difficulties, disappointments and academic struggles. However, this label tended to have a flattening effect on identity, obscuring the complexity that is threaded through their lives. The ADHD label had a transformational effect on the participants subjectivity and interactions with others, with imagined futures containing sharp references to inabilities and deficits. However, participants’ stories and illustrations were rich, articulate and creative, demonstrating exceptional abilities to convey complex information, unique perspectives and imaginative ideas, providing a distinct contrast to the master narrative around ADHD. Narratives around medication were complex and varied. Although some participants reported increased self-control and focus, side effects produced changes that appeared to be in conflict with the way they perceived themselves. School seemed to be a place that provoked considerable anxiety, with deviations from parameters of academic achievement implicated as the prime initiator of an ADHD diagnosis. The pitfalls of the online world were widely acknowledged; however, it provided these young people with an imaginative space, offering connection, agency and a different kind of being and belonging in the world. Participants found TikTok videos humorous and validating, using the platform to procure information, which was not always forthcoming in the material world, with some using the platform to engage with alternative narratives that resonated with their struggles and sense of difference. The virtual world provided opportunity for identity play, underscoring the concept that identity is fluid, multiple and context dependent. Using creative methodologies, this study offered a phenomenological exploration of the perceptions and experiences of this group of adolescents, gaining insights that would not have ordinarily been apparent during conversations within clinical, therapeutic or traditional research settings. Participants’ narratives provided a rich illustration of how they construct their identities across time, in relation to others and through their embodied experiences.