Abstract
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.
Community Brief
Why is this an important issue?
Problems with emotion dysregulation are associated with mental health challenges and suicidality in autistic adults. Yet, scientists lack the understanding of what emotion dysregulation looks like in the lives of autistic adults. We have not yet asked autistic adults what causes emotion dysregulation from their perspective.
What was the purpose of this study?
The purpose of this study was to hear autistic adult perspectives of their experiences of emotion dysregulation. We hoped to learn identify unique factors impacting autistic people in adulthood that may require new and different supports than those developed for autistic children.
What did the researchers do?
We conducted interviews with 15 autistic adults. We asked them to share stories of recent instances of emotion dysregulation. We asked the participants to share what caused the dysregulation, what they did when dysregulated, and to describe consequences of the emotion dysregulation. We looked for common themes in their answers.
What were the results of the study?
Participants told us that their emotion dysregulation often resulted from not having control over aspects of their life in multiple ways. We learned that sensory sensitivities contributed to emotion dysregulation, and it was difficult to recognize emotions. Every participant told a story about becoming emotionally dysregulated after being misunderstood by a neurotypical person, such as a family member, friend, or coworker. Many also described how neurotypical people responded to their dysregulation by threatening serious consequences. Autistic adults also told stories about feeling powerless in health care settings and workplaces. They felt unsafe in these settings and experienced unjust responses to their emotion dysregulation, such as involuntary sedation, removal of care, and loss of their job. Many participants coped with the lack of safety by masking, and they reflected on the personal costs of masking. They shared unmet needs for better emotion dysregulation support, including access to safe places and people, connection with other autistic people, self-acceptance, and broader societal acceptance of autistic people.
What do these findings add to what was already known?
This study is the first to study autistic adults’ own perception of their emotion dysregulation and the key role of that feeling marginalized has on emotion dysregulation. Our findings suggest that emotion dysregulation in autistic adults can be triggered by environmental stressors that are out of their control. The consequences of emotion dysregulation can be severe across social, employment, and health care settings.
What are potential weaknesses in the study?
The sample did not include autistic people with severe intellectual disability or those who relied on forms of communication other than speech.
How will these findings help autistic adults now or in the future?
Our findings suggest the need for autism researchers and clinicians to support autistic adults beyond individual mental health treatments. It is important to focus on promoting wider acceptance of autism in society. We also need to focus on ensuring the emotional safety of autistic people in health care and employment settings.
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