“The World’s Really Not Set Up for the Neurodivergent Person”: Understanding Emotion Dysregulation from the Perspective of Autistic Adults

作者：Kelly Battle Beck, Kristen T. MacKenzie, Tanvi Kumar, Kaitlyn E. Breitenfeldt, Judy C. Chang, Caitlin M. Conner, David L. Mandell, Susan Williams White, Carla A. Mazefsky · 发表于：Autism in Adulthood · 年份：2024 · DOI：10.1089/aut.2023.0214 · 被引用次数：24 · 研究领域：Autism Spectrum Disorder Research、Mindfulness and Compassion Interventions、Family and Disability Support Research

Background: Emotion dysregulation is associated with mental health challenges and suicidality in autistic adults. Little is known about how emotion dysregulation manifests in adulthood and whether current services adequately support their needs. We explored autistic adults’ experiences of emotion dysregulation and identified key contributors to emotion dysregulation to inform future service development. Methods: We performed qualitative semi-structured interviews with autistic adults, in which they shared emotion dysregulation stories. Three researchers developed the codebook using a consensus approach, coded interviews, and completed thematic analyses. Autistic adults were part of our study team and involved at every step. Results: Fifteen autistic adults participated in the interviews. Emotion dysregulation was described in the context of a pervasive lack of control in various settings, most often experienced in health care settings. Limited awareness of internal states (i.e., emotions, sensory) until it was too late was a prominent theme. Many participants described emotion dysregulation as indistinguishable from sensory overload. Interpersonal conflict, largely social rejection because of being misunderstood by a neurotypical person, contributed to difficulty regulating emotions and low perception of self-worth. Participants described feeling powerless in health care settings and workplaces, where they experienced disproportionate and inappropriate responses to their emot...