The lived experience of meltdowns for autistic adults

Abstract

Autistic meltdowns have been explored from the perspectives of parents, but there is a paucity of research on the experience of meltdowns from the autistic perspective. Little is known about how adults experience these events. In this descriptive phenomenological study, we conducted online interviews with 32 autistic adults on the experience of having a meltdown. Data were analyzed using Colaizzi’s seven-step method. Six themes emerged from data that captured the essence of meltdowns, including feeling overwhelmed by informational, sensory, social, or emotional stressors; experiencing extreme emotions, such as anger, sadness, and fear; losing logic, including challenges with thinking and memory; grasping for self-control, in which participants felt out of touch with themselves; finding a release for emotions, often described as an “explosion” of external behaviors or self-harm; and minimizing social, emotional, or physical harm by avoiding triggers or self-isolating when possible. Findings highlight the painful and distressing internalized experience of meltdowns beyond behavioral characteristics. Participants shared examples of internal meltdowns, in which external characteristics of meltdowns were camouflaged. Participants also suggested that meltdowns may serve a functional role in regulating emotions and making one’s voice heard. Meltdowns are diverse experiences that hold different meaning to different people.

Lay abstract

There is not a lot known about what it feels like for autistic people to have a meltdown. Past research has focused on what meltdowns are like for parents and what meltdowns look like from the outside without understanding what it is like for the person having the meltdown. We asked 32 autistic adults about what it is like for them to have a meltdown. We asked them to tell us about their thoughts and feelings about having a meltdown. Then, we looked for themes in their responses that summarized the meltdown experience. Our findings showed that meltdowns hold different meaning to different people. During a meltdown, we found that most autistics described feeling overwhelmed by information, senses, and social and emotional stress. They often felt extreme emotions, such as anger, sadness, and fear, and had trouble with thinking and memory during the meltdown. Participants described trying to stay in control of themselves, often feeling like they were not themselves during meltdowns. They described the meltdown as a way of letting go of or releasing the extreme emotions they felt. Participants tried to stay away from things or people that might trigger a meltdown or tried to make sure they were alone if they felt a meltdown may be coming as a way of avoiding harm—including harm to their bodies, their emotions, and their relationships. These findings offer an important look into what it is like for autistic adults to have meltdowns from their own point of view.