"The World's Really Not Set Up for the Neurodivergent Person": Understanding Emotion Dysregulation from the Perspective of Autistic Adults.

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 emotion dysregulation, including involuntary sedation, termination of care, and job loss. Most participants described a lack of safety and supports for adaptively coping with emotion dysregulation, leading to tension between the personal costs of masking and the societal consequences of not masking.

Conclusions: Autistic adults attributed their emotion dysregulation to a lack of control across all contexts. It is important for autistic adults to develop emotion regulation skills, but more work is needed to understand and remediate the impact of social marginalization on autistic adults, as this directly contributed to instances of dysregulation.