What I Wish You Knew: Insights on Burnout, Inertia, Meltdown, and Shutdown From Autistic Youth

Introduction: Burnout, inertia, meltdown, and shutdown (BIMS) have been identified as important parts of some autistic people’s lives. This study builds on our previous work that offered early academic descriptions of these phenomena, based on the perspectives of autistic adults.

Objectives: This study aimed to explore the unique knowledge and insights of eight autistic children and youth to extend and refine our earlier description of burnout, inertia, and meltdown, with additional exploration of shutdown. We also aimed to explore how these youth cope with these phenomena and what others around them do that make things better or worse, with a hope to glean knowledge to design better supports.

Methods: One-to-one interviews were conducted with eight children and youth, who shared their experience with BIMS. To match individual communication strengths of children and youth, we took a flexible approach to interviews, allowing for augmentative communication systems and use of visual images to support verbal interviews, as needed. We conducted a reflexive, inductive thematic analysis, using an iterative process of coding, collating, reviewing, and mapping themes.

Findings: Our analysis has identified that these youth describe BIMS as a multi-faceted experience involving emotional, cognitive and physical components. Moreover, these multifaceted experiences are often misunderstood by neurotypical adults, which contributes to inadequate support in managing BIMS. Of the four experiences, these youth identified meltdowns as most common.

Conclusion: By gaining first-hand perspectives, we have identified novel insights into BIMS and developed a more holistic understanding of these phenomena. These youths’ descriptions of supportive strategies for BIMS stress the importance of compassion and collaboration from trusted adults. This new knowledge will provide a foundation for how to better support autistic children and youth. Further research is required to develop an understanding of BIMS, especially with respect to how it is experienced by children and youth. Future research should leverage the insights and experiential knowledge of autistic children and youth to co-design support tool(s) for BIMS.