Upsetting experiences in the lives of neurodivergent young people: A qualitative analysis of accounts of adolescents diagnosed with ADHD and/or autism

Background: Accounts of emotional dysregulation in autism and ADHD are typically based on external adult observations anchored in neurotypical notions of emotional responding. These often fail to place neurodivergent people’s emotional responses in the context of the upsetting experiences they face; information best provided by the young people themselves.
Methods: We interviewed 57 adolescents (11-15 years; 19 females) with diagnoses of ADHD (n=24), autism (n=21) or both (n=12), about their experience of upsetting events using a co-designed semi-structured interview schedule. Reflexive thematic analysis generated shared themes with diagnosis-specific nuances.
Results: Four themes were extracted: social dislocation, alienation and conflict; need to mask; self-doubt, loathing, embarrassment; and over stimulation/sensory mismatch. Upsetting experiences, for ADHD participants, were typically perceived as instigated by external agents trying to impose control, and/or a sense of injustice; for autistic participants they often related to feelings of ‘not belonging’ and alienation. Masking, for autistic participants, included “hiding” negative emotions to protect others from their intensity; whereas in ADHD, masking usually involved supressing emotional upset to protect oneself from conflict or consequences. Those with a joint diagnosis reported a combination of these experiences, often felt more intensely.
Conclusions: First-person accounts of emotional responding could provide new insights with potential to refine current dysregulation-based accounts of ADHD or autism.