Short answer
Actively involve neurodivergent individuals as co-creators and experts in the design process, ensuring their voices shape the direction and outcomes, rather than being subjects of external interpretation.
- Field
- User-Centred Design
- Source
- Journal of Disability & Religion (2023)
- Method
- Auto-ethnography and qualitative research synthesis
- Evidence
- Strong effect
Design processes that incorporate the situated knowledge and lived experiences of neurodivergent individuals lead to more authentic and inclusive outcomes, moving beyond clinical or 'othering' perspectives. This user-centred design research insight is drawn from a 2023 study published in Journal of Disability & Religion. Using Auto-ethnography and qualitative research synthesis, researchers explored how this design variable affects real-world outcomes. The key design takeaway: Actively involve neurodivergent individuals as co-creators and experts in the design process, ensuring their voices shape the direction and outcomes, rather than being subjects of external interpretation.
Authentic Representation in Design: Prioritizing Lived Experience Over Pathologizing Frameworks
Design processes that incorporate the situated knowledge and lived experiences of neurodivergent individuals lead to more authentic and inclusive outcomes, moving beyond clinical or 'othering' perspectives.
Journal of Disability & Religion · 2023
Key Findings
- 01Academic and design fields often adopt pathologizing clinical paradigms when addressing neurodivergence, marginalizing the situated knowledge of neurodivergent individuals.
- 02Valuing the lived experiences and 'neurodiversity theologies' of neurodivergent people offers richer, more authentic contributions to understanding and design.
- 03Ethical design practice requires actively engaging with and amplifying the voices of the subjects of design, rather than speaking for them.
Application
Design takeaway
Actively involve neurodivergent individuals as co-creators and experts in the design process, ensuring their voices shape the direction and outcomes, rather than being subjects of external interpretation.
How to apply
When undertaking a design project involving neurodivergent users, implement a co-design methodology where neurodivergent individuals are integral to every stage, from problem definition to solution testing.
Project actions
- 01If your design project involves a specific community or user group, actively seek out individuals from that group to participate in your research and design process.
- 02Be critical of existing research or information about your target users. Consider if it reflects their own perspectives or an external interpretation.
- 03Document how you are involving users and how their input is shaping your design decisions.
Method & Evidence
Variables
Strengths & Limitations
Strengths
- +Emphasizes the ethical imperative of centering marginalized voices.
- +Provides a strong critique of traditional research and design approaches that can lead to exclusion.
Limitations
It can be challenging to recruit a diverse and representative sample of neurodivergent individuals for a design project. Ensuring that the design process truly reflects their voices requires careful facilitation and a willingness to adapt methods.
Reliability & validity
The auto-ethnographic nature and qualitative synthesis provide rich, in-depth insights but may have limited generalizability. Validity is enhanced by drawing on critical autism and neurodiversity studies and incorporating 'lived theology' from research participants.
Think critically
To what extent do current design practices inadvertently perpetuate 'neuronormative' assumptions, and how can designers actively deconstruct these in their work?
Design Principles
"Prioritize situated knowledge and lived experience in design research and development, especially when designing for or with marginalized groups."
This approach challenges designers to critically examine their assumptions and biases, particularly when designing for or with marginalized communities. By actively seeking and valuing the perspectives of those with lived experience, design practice can avoid perpetuating harmful stereotypes and instead foster genuine understanding and equitable solutions.
What This Means for Your Design
When you design something for people who are different from you (like neurodivergent people), don't just guess what they need or rely on what doctors say. Ask them directly, listen to their stories, and let them help you design it. Their own experiences are the best guide.
How to use in your project
- 1.Reference this study when discussing the importance of user research and the ethical considerations of designing for specific populations, particularly neurodivergent individuals.
- 2.Use the concept of 'situated knowledge' to justify your user research methods and the weight you give to participant feedback.
Add to My Project
Quick Cite
Paragraph starter
This research emphasizes the critical need to move beyond external, often pathologizing, interpretations when designing for neurodivergent individuals. By prioritizing the 'situated knowledge' and lived experiences of the target users, as advocated by Jacobs (2023), design projects can achieve greater authenticity and inclusivity. This involves actively engaging neurodivergent individuals as co-creators, ensuring their voices shape the design process from inception to completion, thereby avoiding the pitfalls of 'othering' and fostering equitable solutions.
Source
Journal of Disability & Religion
Speaking with Us, Not for Us: Neurodiversity, Theology and Justice
journal · 2023
View sourceQuestions About This Research
- What does the research say about authentic representation in design: prioritizing lived experience over pathologizing frameworks?
- Actively involve neurodivergent individuals as co-creators and experts in the design process, ensuring their voices shape the direction and outcomes, rather than being subjects of external interpretation. Evidence: Journal of Disability & Religion (2023).
- Why does "Authentic Representation in Design: Prioritizing Lived Experience Over Pathologizing Frameworks" matter for design?
- This approach challenges designers to critically examine their assumptions and biases, particularly when designing for or with marginalized communities. By actively seeking and valuing the perspectives of those with lived experience, design practice can avoid perpetuating harmful stereotypes and instead foster genuine understanding and equitable solutions.
- How can designers apply this research?
- Actively involve neurodivergent individuals as co-creators and experts in the design process, ensuring their voices shape the direction and outcomes, rather than being subjects of external interpretation.
- What were the main findings?
- Academic and design fields often adopt pathologizing clinical paradigms when addressing neurodivergence, marginalizing the situated knowledge of neurodivergent individuals.. Valuing the lived experiences and 'neurodiversity theologies' of neurodivergent people offers richer, more authentic contributions to understanding and design.. Ethical design practice requires actively engaging with and amplifying the voices of the subjects of design, rather than speaking for them.
- What research method was used?
- Auto-ethnography and qualitative research synthesis.
- How strong is the evidence?
- Evidence strength is rated Strong effect, based on a 2023 journal from Journal of Disability & Religion.
- What should I do differently in my next project?
- When undertaking a design project involving neurodivergent users, implement a co-design methodology where neurodivergent individuals are integral to every stage, from problem definition to solution testing.
- What are the limitations?
- The findings are primarily derived from theological and auto-ethnographic contexts, which may require adaptation for broader design applications. The focus is on a specific aspect of neurodivergence (autism) and may not fully represent the diversity of neurodivergent experiences.