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

Abstract

We examine how neurodivergent individuals experience creating, interacting with, and reflecting on personal data about masking. Although self-tracking is often framed as enabling self-insight, this is rarely our experience as neurodivergent individuals and researchers. To better understand this disconnect, we conducted a two-phase qualitative study. First, a workshop where six participants with autism and/or ADHD crafted visual representations of masking experiences. Then, three participants continued by designing and using personalized self-tracking focused on unmasking over two weeks. Using reflexive thematic analysis of activities and interviews, we find that self-tracking imposes substantial interpretive and emotional demands, shaped by context-dependencies that challenge assumptions in self-tracking. We also find that facilitated sharing of experiences might validate emotional responses and support reflection. We identify three emotional dimensions that shape engagement with personal data in a working model of emotion in self-tracking, and discuss implications for designing self-tracking and reflective practices that incorporate peer support and better account for context and emotional labor.

Figures (6)

• Figure 1: Timeline of the study, consisting of two main phases (each comprised of four stages) and a final analysis stage. Each stage is represented as a rounded rectangle, a title and participants present for the activity. Arrows connect the nine stages, indicating their order, while the three stages that comprise the main empirical data are framed by dashed rectangles.
• Figure 2: Participants' externalizations (drawing prompt). All participants created self-portraits. The sketches shown here include those containing speech bubbles and are arranged along a visual-to-words spectrum (left to right). Relationships to other people appear across all drawings as a cross-cutting theme. From left to right: (1) P4 drew a self-portrait with a speech bubble containing symbols representing cosmetic surgery, symbolizing that "as a woman you have to fit into a certain frame." (2) P4 depicted herself as a silhouette composed of seven colors, attempting to imitate a gray silhouette representing another person in the interaction; identical symbols in both speech bubbles emphasize this act of imitation. (3) P5 illustrated herself crying while answering the phone, with a speech bubble stating, "Everything is great! It’s great that you are calling." (4) P4 drew a conversation between herself and another person who asks "Hello, long time no see, how are you?" and while P4 constructs a much longer answer in her mind, she responds, "Hello, I’m good, how are you?"
• Figure 3: Participants' externalizations (drawing prompt). These sketches present variations of self in relation to others. From left, top-to-bottom: (1) P6 sketched a silhouette of themselves formed by words and phrases that represent how they experience masking in various parts of their body. (2) P7 drew a self-portrait in which he stands still and makes a thumbs-up gesture while being attacked by arrows, which he explained as a metaphor for small talk "attacking" him. (3) P8 drew himself alone in a box with a sad expression, and four people smiling together in another box, describing these boxes as representing how he views masking as "a barrier between myself and relating to other people." (4) P3 illustrated a conversation between himself and a neurotypical person, using a functional and a dysfunctional postal system as a metaphor to explain the processing within their respective and different minds. (5) P5 drew herself as a "lump" and various shapes as metaphors for masking behaviors, illustrating herself deciding "which shape to squeeze into." (6) P5 drew a comic illustrating herself waking up as a round shape, squeezing into an uncomfortable corset to appear square, and arriving at school where everyone is square-shaped.
• Figure 4: Participants' externalizations (writing prompt). Participants used word lists, short phrases, annotated sketches, and tabular structures to describe masking. From left to right: (1) P4 extended her drawings from the earlier prompt with words placed in and around a thought bubble, expressing themes of identity, adaptation, and social belonging; (2) P4 added more verbal points next to her sketch; (3) P3 created a dense list of words and short phrases describing masking, exhaustion, and contextual variability; and (4) P5 organized words into a table contrasting current state, expectations, and actions.
• Figure 5: Excerpts of self-tracking materials from two participants. Left: A screenshot shown in two parts, displaying a self-tracking log from P3 reflecting on writing an e-mail to a coworker, including ratings of masking, discomfort, and reflective comments. Right: Two images from P6's phone showing self-tracking, combining marking of masking in their work schedule (right, top) and later written reflections in a notes app (right, bottom). Excerpts include reflections on automatic masking responses as well as comments on the difficulty of recollecting experiences for logging.