Intersectional cultural and psychological safety across all aspects of life
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.
For the last few years AutCollab.org has been active in investigating the cultural and psychological safety of workplaces from an intersectional perspective, including an explicit focus on neurodivergence.
We are now taking a step further, in the context of cultural and psychological safety of Autistic and otherwise neurodivergent people across all aspects in their lives. This related article provides further context.
- Jorn Bettin, anthropologist by birth and knowledge archaeologist,
Autistic Collaboration Trust
- Ülkü Mazlum, artist,
Autistic Collaboration Trust
- Allies with a focus on Autistic well-being and a holistic perspective on healthcare
- The many wonderful Autistic people who are contributing to this project by submitting lived experience reports and via participation in related surveys
Results to date
The results of this intersectional transdisciplinary research initiative are being published by the Autistic Collaboration Trust, and inform the professional education services we provide to the healthcare sector, the education sector, governments, and private sector organisations.
- Professional education courses for healthcare professionals, educators, and employers
- Repository of Autistic lived experience for healthcare professionals
- Autistic trauma peer support
- Independent community powered oversight of intersectional cultural and psychological safety in the workplace and specifically in healthcare organisations
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, cultural evolution, politics of information, collective learning, creative collaboration, visual and non-linear languages
- Autistic Collaboration Trust
- S23M Healthcare Solutions (sponsor)
Contribute your lived experience
This research programme depends on the breadth and depth of lived Autistic and otherwise neurodivergent experience that we can draw on. Autistic and otherwise neurodivergent and marginalised people are invited to contribute their lived experience.
How often are you afraid to be your authentic self?
You are invited to participate in this 5 minute anonymous survey.
You can submit a lived experience report below. As needed, you can can remain entirely anonymous to protect yourself from harm and further stigma. All contributions are greatly appreciated.
Feelings about social interactions
A small AutCollab team is working on a draft anonymous survey to gain deeper insights into how Autistic people feel in social interactions. The survey takes a broad ethnographic approach and is not limited to the narrow lens of medical research.
To understand the motivation for the survey, this article on the challenges of feeling understood in a deceptive world may be helpful.
If you have the time, this discussion offers a good example of the depth of the ideological bias that has shaped the field of psychology over the course of the last 150 years. From an Autistic perspective, the persistent behaviourist attempts to impose cultural expectations from the outside, and the level of ignorance about the relevance of rich inner worlds and individually unique mental models remains disturbing. Psychologists are only starting to acknowledge the scale of the immense harm and the many deaths caused by dehumanising cultural bias and inappropriate use of over-simplified statistical models.
So far the current draft survey has collected answers from a handful of people that we asked for feedback. The answers do reveal potentially interesting (non-obvious) individual variabilities as well as commonalities. Every question focuses on a distinct perspective, and several questions focus on how giving and taking advice is experienced. The initial answers also reveal that the context (within the family, with a partner, amongst friends, at work) seems to matter a lot for some questions and possibly less so for others. The intention is to run the survey to see which clear patterns and insights emerge. Both commonalities and variabilities are relevant.
Gaining a deeper understanding of how different people experience giving and taking advice is fundamental for refining guidance around de-powered dialogue (see this article), which in turn is a key tool for learning about each other, learning from each other, and nurturing mutual trust.
We also want to run the survey to gather data that allows us to push back against the medical establishment and (often absurdly) narrowly focused research questions via an ethnographic approach that centres lived experiences. Additionally, as part of the approach, we may create an online form with a few open questions that allows people to articulate specific lived experience with social interactions and the development of healthy relationships in various contexts.
We’ve taken a two pronged approach before, with an ongoing survey that looks at healthcare settings in particular. Some of the results to date are published here:
- The option based survey with a couple of open questions (please circulate if you have the time).
- A complementary form with open questions to gather more details about specific experiences in healthcare settings.
- A sample experience report from someone who is very keen for this experience to be included in our education courses for healthcare professionals.
We are learning a lot from answers to structured systematic option based questions (for example that unmet healthcare needs are amongst the greatest sources of Autistic fears, alongside feeling unsafe with parents and employers) as well as from detailed answers to the open questions.
Your feedback and input on the survey design is welcome!
The second question asks people about the level of distress / pressure they experience. This should allow us to better understand each response within the individual context, and we hope the question also sets the frame that people use for answering the following questions.
The survey takes around 10 minute to complete. Do you think the survey is too long? As needed we could take out the 5 questions that relate to the role of parents, caregivers, and allies and place them into a separate survey.
Please note that the current survey is a draft design in progress. We want to wait for some feedback before circulating it widely. If you take the survey now, we’ll simply use the data to reflect on whether we are asking useful questions, and as needed, to tweak the design. AutCollab will let you know when we are launching the survey to gather data from Autistic / ND communities at scale.