This article discusses themes of mental health and trauma.
I have recently been working through a course about trauma-informed design [1]: the technique of reducing user stress and re-traumatisation through thoughtful experimental and system design. It occurred to me that many of the design choices suggested could apply to making a safe research environment for autistic individuals – so in this article, I discuss these themes and link them to how to better support autistic individuals within research. This article may be useful for researchers wishing to better support autistic participants or co-collaborators.
Originating from a report by the US Substance Abuse and Mental Health Services Administration (SAMHSA) [2], and discussed by Eggleston and Noel [3], six key principles are described which are fundamental to a trauma-informed approach, which are considered individually below. Suggestions for enhancing research participation for autistic individuals are provided both from personal experience and in consideration of autistic individuals I’ve worked with in my own research.
1. Safety
Everyone deserves to feel safe – and it is particularly important for those at risk of increased mental health challenges. To ensure that autistic people feel safe, it is key to consider the environment from their perspective. Taking part in research may be a new experience for many autistic people, not even considering the nature of said research.
Safety should be considered both in an online setting and for in-person activities or meetings. In the below table, some considerations for the safety of autistic individuals are presented for both of these environments.
| Safety concerns for autistic individuals. | Techniques to ensure safety online. | Techniques to ensure safety in-person. |
|---|---|---|
| A topic is brought up or something occurs which causes a meltdown, shutdown, or other harm. | – Provide a “quick exit” button from websites, forms, and software. – Ensure online meetings can accomodate sudden breaks or postponing. | – Don’t block exit doors, and allow autistic individuals a quick route to quietly leave the room. – Provide a seperate quiet space for autistic people. |
| Struggling to take part in group conversations or activities. | – Consider including prompts which can support conversation. – Allow participants to turn their camera off in online meetings. – Allow autistic people to contribute in text (particularly in interviews). | – Consider including prompts which can support conversation. – Choose seating arrangements that reduce a power dynamic (in a circle rather than rows). |
| The environment is overwhelming and uninviting. | – Identify any preferences from participants to meeting in-person or online. | – Choose spaces with calm colours and decor. – Conduct in-person meetings and events at quiet times and in quiet settings. |
| Language preferences of autistic people may differ from those being used. | – Ask autistic individuals about their own preferences for person-first or identity-first language. | [See left.] |
2. Trustworthiness and Transparency
Trust is important for people, and this can be enhanced by transparency. An autistic indvidual may benefit from full transparency of their involvement as a participant or collaborator. This helps to define boundaries, which can support autistic individuals with defining the content of their contribution, as well as the amount of time they need to put into it.
Research is, of course, about data collection, and it is important to be transparent about the type, amount, and content of the data being collected – and it is particularly important to do this is an accessible way. Be clear who will be accessing the data and why.
Interactions and communication with autistic participants may also be enhanced by ensuring they occur in a clear and consistent way. Always use the same type of communication (ideally one that is preferred by the individual), and try and structure communications in a clear way. In my most recent research project, all emails to the participants were structured in exactly the same way, with headings and recaps where necessary.
If you make a promise or statement about something (e.g. “I’ll get this to you on Thursday”), then try as much as you can to deliver this for an autistic person. This builds greater trust between a researcher and participants/collaborators and shows you value the relationship. I recieved some lovely comments from participants in my last project who were very thankful about these last two points, especially.
3. Peer Support
For autistic people, having someone there who is able to understand how they feel, what their needs are, and how best to support them is vital. In my work, being autistic myself, has helped me to design and plan my studies to best fit in with the requirements of the participants. Of course, not all research with autistic participants is going to be conducted by autistic researchers – but in this case, there’s still plenty that can be done to provide good peer support.
If possible, allow an autistic person to have a trusted peer with them for interviews or other activities. Some autistic people may prefer to be accompanied by a family member, a close friend, or another autistic person, when taking part in research.
Displaying a good understanding of autism to autistic participants may help to show to them that the study is inclusive and welcoming. Giving autistic individuals an option on how they might take part in interviews, for example, shows that the study is designed consciously of their needs – which might encourage them to ask questions about other things which might enhance their involvement.
4. Collaboration and Mutuality
As has been regularly by other autistic researchers, the best research into autism is that where autistic people are involved, both as participants – providing feedback or data – and, particularly, collaborators. When research about autism includes autistic people from the beginning, it can build a much firmer framework, with the study idea and design being built on a solid base.
This does not just consist of interviewing autistic people at the definition of the idea, but involving them throughout the whole process of development. Although researchers, in these settings, will often be the experts in the experimental design, and what is feasible within the scope of the study… it is important to consider that autistic people, who are not researchers themselves, still have a equal contribution to make to the study.
To enable this collaboration and mutuality, researchers may wish to consider the barriers to autistic people (and, generally, those who might not be as familiar with research approaches) which might prevent them being a full part of the research team. This helps to reduce a power imbalance, by ensuring that all collaborators can be included with decisions in the study while being fully informed.
5. Empowerment, Voice, and Choice
Empowering autistic people to develop, guide, and participate in autism research should be a consideration for researchers. I’ve discussed how we can help to empower autistic voices in research above, so I won’t labour the point here.
But it’s worth acknowleging that choice is also so important. Not all autistic people will want to take part in research, either as a participant or a collaborator. In line with ethical considerations, it should be stressed to participants that they can recind their consent at any point. This might be particularly important for autistic people, whose experiences of a research setting might differ from what their expecting, and where the best choice is to leave an uncomfortable environment.
Consent is so important in research, but it shouldn’t be a one-time checkbox. Consider continously getting consent throughout a study – provide information about the status of the study, and justify why things are done in a certain way, to ensure that participants are fully informed.
6. Cultural, Historical, and Gender Issues
As with anyone, autistic people experience a range of challenges outside of their disability. Acknowleding and accepting their identity, cultural background, and historical experiences, in a respectful way, can help autistic people feel welcome, and reduces any other stress that they might experience in a research setting.
One way this can be done is to allow autistic people to define themselves. Ask them what language they would like to use (which might differ from “autistic person” as used in this article1). This also includes their preferred pronouns, whether they consider autism a disability, and how they might describe autistic traits.
Conclusion
I hope this has been a helpful and interesting look at one approach for defining the support for autistic people in research: stemming from a discusision of trauma-informed approaches, and my own experiences as an autistic person and researcher.
References and Footnotes
[1] LinkedIn Learning, M. Eggleston, and C. F. Scott, ‘Trauma-Informed Design’. Accessed: Aug. 22, 2024. [Online]. Available: https://www.linkedin.com/learning/trauma-informed-design
[2] Substance Abuse and Mental Health Services Administration, ‘SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach’, Substance Abuse and Mental Health Services Administration, Rockville, MD, (SMA) 14-4884, 2014. Accessed: Aug. 22, 2024. [Online]. Available: https://ncsacw.acf.hhs.gov/userfiles/files/SAMHSA_Trauma.pdf
[3] M. Eggleston and L.-A. Noel, ‘Repairing the Harm of Digital Design Using a Trauma-informed Approach’, Diseña, no. 24, Art. no. 24, Jan. 2024, doi: 10.7764/disena.24.Article.7.
Featured Image: Photo by Alex Green (https://www.pexels.com/photo/stressed-black-man-with-dreadlocks-in-psychological-office-5699455/)
- I have used “autistic person” (identity-first language) in this article as it is the most common preference for autistic people, though other teminology is used, and is fully valid. I’m working on another post about this discussion, which will be out soon. ↩︎