Neurodivergent and otherwise marginalised people often have specific communication preferences and, in some cases are only able to communicate in one or two specific modalities. In this research project we are collecting examples of both inclusive and marginalising forms of interactions encountered in healthcare settings.
The level of ignorance, stigma, and open hostility that Autistic people regularly have to deal with is traumatising. Encouragingly, committed allies of the neurodiversity movement, such as Dr. Zoe Raos (Te Āti Awa), a gastroenterologist in Waitematā, Tāmaki Makaurau, are starting to speak up about the lack of cultural and psychological safety for Autistic people.
- Dr Juanita Fernando, Adjunct Research Fellow, Medical Education Research & Quality (MERQ) unit at Monash University, Fellow of the Australasian Institute of Digital Health (AIDH), and foundation Academic Convenor of the online Fellowship by Training program, the most successful of its kind in the Southern Hemisphere. Juanita is a sociologist has been working in digital health informatics for 15 years as researcher, educator and teacher. She works with expert colleagues from Medicine, Engineering and IT on mHealth QoS, digital health practice and education.
- Jorn Bettin, anthropologist by birth and knowledge archaeologist, Autistic Collaboration Trust, partner at S23M.
- The many wonderful Autistic and otherwise neurodivergent people who are contributing to this project by submitting lived experience reports and scenarios encountered in healthcare settings.
Results to date
The results of this intersectional research initiative inform our Dr. B. Educated professional development courses for medical doctors and clinicians. In one of our recent education workshops community members and clinicians jointly concluded:
Your own quality of life as a service provider will improve if you fight for systemic changes. Advocate for the wellbeing of neurodivergent patients, and we will also support your fight for better working conditions. We need systemic change. We are all in this together – neurodivergent patients and medical professionals. Health sector reform is needed. We can jointly gather data and insights from all sides, and jointly engage with governing bodies who don’t have the capability of doing transdisciplinary grassroots research.
Relevant domains and disciplines
Human rights, disability studies, queer studies, ecologies of care / mutual aid networks, design justice, trauma psychology, Autistic ways of being, neurology, stress related dis-eases, anthropology, sociology, politics of information, collective learning
- Autistic Collaboration Trust
- S23M Healthcare Solutions (sponsor)
Contribute your lived experience
You are invited to submit both negative and positive scenarios, comparing scenarios that you had hoped for or expected with the scenarios that you actually encountered.
As needed, you can can remain entirely anonymous to protect yourself from harm and further stigma. Please indicate all aspects of the interactions that made you feel uncomfortable or unsafe, or that you found to be confusing or overwhelming, and please point out your communication preferences and what happens when these are ignored.
All your contributions are greatly appreciated. They expand the scenarios that we can draw on as part of our Dr. B. Educated professional development courses for medical doctors and clinicians.