Research Impacting and Involving Autistic Adults Should Be Trauma Informed

Abstract

The autism research field to date has yet to widely adopt trauma-informed thinking and practices. Since most autistic adults have a history of experiencing trauma, the field must shift to center trauma in the design of research for this population. This article calls for widespread integration of trauma-informed strategies into existing research practices focused on autistic adults. We present a summary of trauma sources across research domains and make recommendations for how to integrate existing research related to trauma experienced by autistic adults and trauma-informed practices in the current research landscape. With trauma-informed modifications to research practices, we suggest that accessibility of participation in research for autistic adults with a history of trauma will be improved and that potential trauma-related harms of research will be reduced. Additionally, considering trauma more widely as a potential modifier of autism domains including social functioning, sensory sensitivity, self-soothing behaviors, cognitive functioning, and autonomic arousal may lead to a more comprehensive understanding of these areas. Taken together, we believe that adopting trauma-informed research approaches will lead to more meaningful, impactful research.

Community Brief

Why is this topic important?

Most autistic adults have experienced some type of trauma, but the autism research field generally has yet to take that into consideration for how they design and run studies focusing on this group. The autism research field must shift to prioritize trauma-informed research strategies in order to better understand autistic experiences and to minimize trauma caused by the research process itself.

What is the purpose of this article?

This article asks researchers to be thoughtful and even critical about how their studies could impact their participants and offers suggestions for different ways to improve. Specifically, we (1) summarize existing research about sources of trauma for autistic adults and (2) describe how we can make research better (i.e., more trauma informed) based on what we already know about how autistic adults experience trauma.

What personal or professional perspectives do the authors bring to this topic?

The authors’ professional perspectives span several fields of study, including disability studies, gender studies, neuroscience, genetics, education, and data science. Additionally, two of the authors are allistic, while four of the authors are autistic and are informed by their personal experiences in the workplace, medical system, education system, and daily life.

What is already known about this topic?

Although we know that autistic people frequently experience trauma and have information on trauma-informed care, little research to date has focused on how research with autistic adults can be more trauma-informed.

What do the authors recommend?

We broadly suggest that researchers look at each aspect of their study, ideally in partnership with autistic collaborators, to identify potential areas of harm based on the different trauma sources we describe in the article. Our specific recommendations include making changes to assessments to better identify signs of trauma and trauma coping behaviors that may be otherwise seen as a part of someone’s autism spectrum presentation. For example, we suggest that researchers consider sensory needs (like dimmed lights) in the design of their study and that they ask questions about the sensory needs of their participants so that they can complete the research study without unnecessary discomfort. We also suggest that researchers work to better identify signs of trauma and trauma coping behaviors that may be otherwise seen as a part of someone’s autism spectrum presentation.

How will these recommendations help autistic adults now or in the future?

These recommendations have the goal of helping autistic adults to feel safer accessing and participating in research. We hope that more standard consideration of trauma will lead to research that is more inclusive of autistic adults with different trauma experiences and sensory needs.