Hi, how do I human this: Neurodiversity-Affirming Design for Autistic Adults' Formation of Identity

Paper Title

Hi, how do I human this: Neurodiversity-Affirming Design for Autistic Adults' Formation of Identity

Publication Info

• Topic area: Human-Computer Interaction (HCI) for neurodiversity and identity formation.
• Keywords: Neurodiversity, autism, self-reflection, identity formation, conversational agents, participatory design, sensory profiles, intersectionality, stigma, self-compassion.

Background and Problem

• Problem / challenge: HCI technologies for autistic people often reinforce ableist paradigms, focusing on "fixing" autism rather than supporting identity formation and self-esteem. Research has largely ignored autistic adults, especially women and gender-diverse individuals, and their intersecting identities.
• Significance: Addressing these gaps is crucial to foster self-esteem, self-compassion, and wellbeing among autistic adults, particularly given the high prevalence of mental health challenges and stigma-related barriers they face.
• Motivation and related work: Prior work has focused on autistic children or deficit-based approaches (e.g., behavior change, communication enhancement). Neurodiversity-affirming narratives and participatory design approaches remain underexplored in supporting autistic adults' identity formation and self-reflection.

Solution

• Proposed approach: Development and evaluation of a prototype conversational agent (CA) called NeuroDiverse, co-designed with autistic women and gender-diverse adults (W&GDA), to support self-reflection, sensory profile awareness, and identity formation.
• Novelty:
  1. Focus on neurodiversity-affirming design principles to support autistic identity formation.
  2. Integration of intersectionality to address gender and ethnic biases in autism-related technology.
  3. Participatory design approach involving autistic adults as stakeholders.
  4. Exploration of storytelling and self-reflection tools for fostering self-compassion and wellbeing.
• Procedure and key techniques:
  • Conducted surveys (N=21) and participatory design workshops (n=8) with autistic W&GDA.
  • Developed a Figma prototype of NeuroDiverse, incorporating features like sensory profile mapping, community-validated resources, and retrospective letter-writing.
  • Used role-playing and storyboarding exercises to refine the CA design based on participants' feedback.

Results

• Concrete findings:
  • Participants described intense information-seeking and self-reflection practices as critical to identifying as autistic and fostering self-compassion.
  • Neurodiversity-affirming narratives, particularly through social media, were transformative in reshaping perceptions of autism.
  • Sensory profile awareness significantly improved participants' ability to manage sensory sensitivities and wellbeing.
• Advantage over baselines:
  • NeuroDiverse prototype emphasized self-reflection and identity formation rather than deficit-based interventions, aligning with participants' needs and preferences.
  • Participants valued features like sensory profile mapping and community-validated resources, which are not commonly found in existing autism-related technologies.
• Experiments / evaluation:
  • Surveys captured participants' perceptions of autism and their experiences with stigma and self-reflection.
  • Workshops evaluated the prototype through iterative design, role-playing, and discussions on the CA's potential functionalities and ethical considerations.
• Limitations and future work:
  • Sample size and qualitative design limit generalizability; further research is needed to capture diverse intersectional identities.
  • Self-identification as autistic does not confirm diagnosis; future technologies should involve healthcare professionals and community validation.
  • More work is needed to explore how technologies can support undiagnosed adults who may not yet identify as autistic.

Summary

This study addresses gaps in HCI research by exploring how neurodiversity-affirming technologies can support autistic adults, particularly women and gender-diverse individuals, in forming their identities and fostering self-compassion. Through surveys and participatory design workshops, the authors developed and evaluated NeuroDiverse, a prototype conversational agent designed to facilitate self-reflection, sensory profile awareness, and access to community-validated resources. Findings highlight the importance of compassionate design principles, intersectionality, and storytelling in supporting autistic identity formation. Future work should expand participatory research to include broader intersectional identities and ensure community validation of neurodiverse tools.