Frontiers | 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 o...
These youths’ descriptions of supportive strategies for BIMS stress the importance of compassion and collaboration from trusted adults.
When discussing meltdowns, they highlighted three main ideas: Know the things that can make me “feel out of control,” learn my strategies to help me regain “control” and understand the things that can make me feel worse.
Of the four BIMS phenomena, the participants explicitly identified meltdowns as most prominent in their lives.
In order to remain in alignment with the children and youth’s narratives, burnout, inertia and shutdown were grouped together using the participants’ language: “feeling exhausted” for burnout and “feeling frozen” for shutdown and inertia.
The children and youth utilized analogies to depict their experiences with “feeling out of control” and feeling “exhausted and/or frozen.” These analogies elucidate that the aforementioned phenomena are multifaceted experiences that include emotional, physical and cognitive components. These multifaceted components are represented through three codes: in my body, in my mind, and in my heart. Passages in the interviews that described physical sensations, bodily reactions or behaviors were coded as in my body and passages that highlighted cognitive processing, thoughts or beliefs were coded as in my mind. Responses that emphasized an emotional experience such as feeling overwhelmed, helpless, frustration or shame were coded as in my heart. Together, these multifaceted components depict how these phenomena are experiences that include the children/youth’s whole being.
The participants use an “old computer” and a “heavy blanket” to represent a combination of feelings: decreased physical energy, lagging, slowness, and being physically stuck. Specifically for shutdowns, one youth identified that their physical tiredness can occur when they are feeling overloaded by environmental stimuli:
When asked about their experiences with meltdowns, the participants shared instances that led to a meltdown. Their descriptions highlighted that a build-up of burnout and stress, and feeling drained from an accumulation of task demands, may lead to experiencing a meltdown. This indicates that these participants may experience burnout and meltdowns simultaneously.
The children and youth in this study placed very high value on compassionate support and understanding from the adults around them. The youth who described the greatest success in their current management of BIMS described situations in which they had generated and implemented strategies through collaboration with an important adult (usually a parent or education aide). This finding supports a shift in the direction toward something we like to call “collaborative regulation.” Collaborative regulation could be seen as similar to a co-regulation approach [e.g., as described by Gulsrud et al. (2010), which used mother-mediated joint attention to support emotional regulation in autistic children], in that it acknowledges the influence of others on an individual’s level of arousal; however, collaborative regulation goes beyond co-regulation to acknowledge a shared responsibility for monitoring and supporting a person’s state of arousal. Additionally, a collaborative regulation approach, as we would like to put forth, emphasizes mindful and deliberate planning to set an individual up for success and includes consideration for the physical, sensory and social environment.
Collaborative regulation can facilitate opportunities to provide positive support and in turn, reduce feelings of humiliation, regret, and fear (Ting and Weiss, 2017). Adults can work together with autistic youth to scaffold useful strategies (Ting and Weiss, 2017) when they are feeling exhausted, out of control or frozen. Scaffolding includes sensitivity toward children’s emotions, providing encouragement and validation, and valuing children’s active participation in goal achievement (Hoffman et al., 2006). Buckle et al. (2021) identified that some autistic informants depend on scaffolding from their external environment when overcoming inertia (e.g., completing a task side by side with another individual) as it provides visual prompting, which further facilitates task participation and follow-through. Therefore, through collaborative regulation, autistic youth and teachers can determine together when and how to best apply scaffolding techniques in the classroom.