« À la poursuite des ombres » : comprendre l'externalisation des données personnelles et l'automesure chez les personnes neurodivergentes

Titre original en langue inconnue ou non prise en charge : "Chasing Shadows": Understanding Personal Data Externalization and Self-Tracking for Neurodivergent Individuals

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Rudberg Selin, T., Unéus, D., & Knudsen, S. (2026). "Chasing Shadows": Understanding Personal Data Externalization and Self-Tracking for Neurodivergent Individuals. Proceedings of the 2026 CHI Conference on Human Factors in Computing Systems, 1-19. https://doi.org/10.1145/3772318.3794641

Date de publication: 13/04/2026 Ajout dans AutiHub: 21/10/2026 Type: Autre Langue de l’article: Langue inconnue ou non prise en charge
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Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
1 / 3 (33,3 %)
  1. Tanya Rudberg Selin
  2. Danielle Unéus *
  3. Søren Knudsen

Résumé

Nous examinons comment les personnes neurodivergentes vivent la création, l'interaction avec et la réflexion sur des données personnelles relatives au camouflage. Bien que l'automesure soit souvent présentée comme permettant une meilleure compréhension de soi, cela correspond rarement à notre expérience en tant que personnes et chercheurs neurodivergents. Afin de mieux comprendre ce décalage, nous avons mené une étude qualitative en deux phases. Premièrement, un atelier au cours duquel six participants autistes et/ou présentant un TDAH ont élaboré des représentations visuelles d'expériences de camouflage. Ensuite, trois participants ont poursuivi en concevant et en utilisant, pendant deux semaines, une automesure personnalisée centrée sur le dévoilement de soi. À l'aide d'une analyse thématique réflexive des activités et des entretiens, nous constatons que l'automesure impose d'importantes exigences interprétatives et émotionnelles, façonnées par des dépendances au contexte qui remettent en cause les hypothèses de l'automesure. Nous constatons également que le partage facilité des expériences pourrait valider les réponses émotionnelles et soutenir la réflexion. Nous identifions trois dimensions émotionnelles qui façonnent l'engagement envers les données personnelles dans un modèle de travail de l'émotion dans l'automesure, et discutons des implications pour la conception de pratiques d'automesure et de réflexion qui intègrent le soutien par les pairs et tiennent mieux compte du contexte et du travail émotionnel.

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.

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Références citées
74
Avec un DOI
71
Sans DOI, à partir du texte brut de la bibliographie
3
13 / 74 (17,6 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
2 / 74 (2,7 %)
Références avec noms d’auteurices détectés
72 / 74 (97,3 %)
Sans nom d’auteurice détecté
2
Sans titre structuré
2
Sans identifiant stable
3
Références avec noms bruts d’auteurices restant à vérifier
2
Références avec problème de récupération des métadonnées externes
0
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Noms d’auteurices détectés dans la bibliographie citée
330
À partir du DOI ou de métadonnées externes
330
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
2
107 / 330 (32,4 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 223 / 330 (67,6 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
24 / 330 (7,3 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 24 / 107 (22,4 %). Personnes distinctes identifiées comme autistes : 19 / 294 (6,5 %).
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