Managing Stress and Social Pain in Autistic Individuals

Frequent adverse social experiences, social and environmental mismatches, and specific characteristics may make autistic individuals particularly susceptible to elevated stress. Furthermore, social pain, the stress response following social rejection, exclusion, and loss, has been understudied. This thesis describes five studies that aimed to better understand and alleviate stress and social pain in autistic individuals. In Study 1, we investigated the effectiveness of the Stress Autism Mate (SAM) Junior, a free co-created mobile self-help tool for autistic adolescents. Using a single case experimental design, we evaluated the effects of this app on perceived stress, adaptive and maladaptive coping styles, and quality of life. A total of 24 Dutch adolescents with autism participated, with 16 completing all research phases. Linear mixed-effects models showed that use of the SAM Junior app had no significant effects on the outcome measures. To explain the null results, in Study 2 we conducted qualitative research on the user experience of the SAM Junior app. 15 adolescents with autism from three mental health care facilities were interviewed. While user experiences varied, respondents generally expressed moderate satisfaction with the app’s design philosophy, layout, and effectiveness. However, certain features, such as the requirement to complete questionnaires at fixed intervals, questionnaire answer options that did not sufficiently capture participants’ experiences, and irrelevant stress tips, were experienced as tedious or even stress-inducing. For Study 3, we addressed a potential limitation of the SAM Junior app, namely its emphasis on addressing more inherent challenges as a means of alleviating stress. The Psychological Mediation Framework (PMF) suggests that cognitive, affective, and social-psychological processes help explain the impact of these stressors. We tested the PMF in autism by analyzing questionnaire data from 831 adults with autism. Internalized stigma, emotional, and social loneliness were each positively related to stress and negatively related to life satisfaction, with both types of loneliness mediating the association between internalized stigma and these outcomes. For Study 4, we investigated the lived experiences of Rejection Sensitivity Dysphoria (RSD), a popular term in autistic communities that describes heightened sensitivity to social pain, in 19 adults with autism. Participants defined RSD as profoundly overwhelming, exhausting emotions and thoughts when anticipating or perceiving rejection and criticism. These sensations could be accompanied by rumination, physical pain and tension, and memories of past RSD episodes. Triggers of RSD included clear and ambiguous, anticipatory and reactive rejection and criticism, as well as self-rejection and vicarious experiences. RSD was frequently invalidated by others, including practitioners, leading to further RSD episodes. Causes of RSD were regarded as autistic traits and lifelong rejection experiences. Many different strategies were employed to cope with RSD, such as seeking therapy. Finally, in Study 5, we conducted a questionnaire study to compare the social pain sensitivity of autistic adults (n = 1,425) with that of non-autistic adults (n = 187). We also examined associations with self-esteem, cognitive empathy, and sensory sensitivity within the autistic group. Autistic adults reported slightly but significantly higher social pain sensitivity than allistic adults. Women reported higher social pain sensitivity than men across both groups. Within the autistic group, lower self-esteem predicted higher social pain sensitivity with a moderate effect size, whereas cognitive empathy and sensory sensitivity were not significant predictors. Taken together, although we found that the SAM Junior app was ineffective, subsequent studies and positive user experiences provided provided valuable directions for further development, including enhancing ease of use and addressing minority stress. Additionally, our studies on RSD showed that these experiences may serve as a common yet underrecognized factor associated with stress in autistic adults that should be addressed at both societal and individual levels.