"Chasing Shadows”: Understanding Personal Data Externalization and Self-Tracking for Neurodivergent Individuals

Paper Title

'Chasing Shadows': Understanding Personal Data Externalization and Self-Tracking for Neurodivergent Individuals

Publication Info

• Topic area: Neurodivergent experiences with self-tracking and personal data practices.
• Keywords: Neurodiversity, self-tracking, masking, unmasking, personal informatics, emotional labor, peer support, ADHD, autism, HCI.

Background and Problem

• Problem / challenge: Existing self-tracking tools and personal informatics systems often presume stability, generalizability, and individual reflection, which do not align with the lived experiences of neurodivergent individuals. These systems fail to account for the emotional and interpretive demands placed on users, particularly when tracking complex and ambiguous behaviors like masking.
• Significance: Masking, a behavior often employed by neurodivergent individuals to conform to neuronormative expectations, is linked to distress, identity disruption, and poor mental health. Supporting unmasking through self-tracking could enhance neurodivergent wellbeing but requires tools that accommodate cognitive diversity and emotional variability.
• Motivation and related work: While prior research has explored self-tracking for various domains, it has largely overlooked the specific needs and contexts of neurodivergent individuals. Studies have highlighted the limitations of conventional tools in capturing the nuanced, context-dependent nature of neurodivergent experiences, but few have centered neurodivergent perspectives in design processes.

Solution

• Proposed approach: A two-phase qualitative study exploring neurodivergent individuals’ experiences with personal data practices, focusing on masking and unmasking. The study combines externalization (visual and written representations of masking) and personalized self-tracking approaches.
• Novelty:
  1. Identification of three emotional dimensions (emotional weight, emotional self-reflection, emotional burden) that shape engagement with personal data.
  2. Demonstration of the value of peer-supported reflection in mitigating emotional challenges and enhancing self-tracking practices.
  3. Methodological contributions for designing accessible and neurodiversity-informed self-tracking systems.
• Procedure and key techniques:
  • Phase I: Workshop with six neurodivergent participants, involving externalization exercises (drawing, writing, and questionnaire-based reflections) and group discussions.
  • Phase II: Personalized self-tracking over 1-2 weeks by three participants, followed by exit interviews to evaluate experiences.
  • Reflexive thematic analysis of workshop and interview data to identify themes and emotional dimensions.

Results

• Concrete findings:
  • Participants identified challenges in defining and recognizing masking due to its ambiguous and subconscious nature.
  • Emotional dimensions of self-tracking included:
    1. Emotional weight: Stress and overthinking during data creation, exacerbated by vague questions and internal consistency checks.
    2. Emotional self-reflection: Discomfort from insights surfaced through self-tracking, such as recognizing unwanted behaviors or identities.
    3. Emotional burden: Pressure and obligation to maintain tracking routines, amplified by fluctuating mental resources.
  • Peer-supported contexts transformed emotional challenges into validation and connection.
• Advantage over baselines:
  • Unlike conventional self-tracking systems, this approach emphasized flexibility, peer support, and reflection as sufficient goals, reducing cognitive and emotional demands.
  • Participants gained meaningful insights even with lightweight, short-term tracking methods.
• Experiments / evaluation:
  • Phase I: Externalization workshop with six participants (28–31 years old, ADHD and/or autism diagnoses), followed by individual interviews.
  • Phase II: Personalized self-tracking by three participants, focusing on contexts where masking was salient (e.g., social situations, school, work).
  • Metrics: Qualitative feedback on emotional experiences, insights gained, and challenges faced.
• Limitations and future work:
  • Small sample size (six participants in Phase I, three in Phase II) limits generalizability.
  • Participants were recruited from researchers’ networks, leading to a relatively homogenous group.
  • Future work should test the proposed emotional dimensions with larger, more diverse samples and explore peer-supported self-tracking designs.

Summary

This study investigates how neurodivergent individuals experience self-tracking and reflecting on personal data related to masking. The authors identify three emotional dimensions—emotional weight, emotional self-reflection, and emotional burden—that shape engagement with personal data. Peer-supported contexts were found to mitigate emotional challenges and foster meaningful reflection. The findings highlight the need for flexible, accessible, and neurodiversity-informed self-tracking systems that prioritize reflection over rigid routines. Future work should explore these emotional dimensions and peer-supported approaches in broader contexts, including other marginalized groups.