Straight from the Source - Carly Nelson: Combatting the Double Empathy Problem (and More on Presenting at the Milestones Conference!)
Posted on 05/03/19 in Milestones Conference by Carly Nelson
“Theory of mind deficits” have long been associated with autism, but research and dialogue from the past decade present an interesting idea about inability to empathize fully with another’s mindset - it goes both ways. This bidirectional relationship between non-autistic people’s and autistic* people’s understandings of one another’s mindsets has been referred to as “the double empathy problem.” Simply put, it’s common for autistic people to struggle to understand the social expectations, motives, and reactions of non-autistic people. It’s also common for non-autistic people to misunderstand the social needs, motives, and reactions of autistic people.
In a world that often considers autistic people’s natural way of interacting through a ‘deficit lens,’ situations that are in truth just misunderstandings between two people are often instantly framed as an autistic failure to match the non-autistic person’s undoubtedly impeccable social skills. See Elaine Popovich’s poem “You and Me” for an example of what I’m talking about here.
Given that more non-autistic people have power over autistic people than vice versa, the double empathy problem can be a very dangerous one for the autistic community. A vast majority of research about autism is done with little to no input from autistic people related to goals and operational definitions. That research informs the foundation of many people’s understandings and of much of evidence-based practice. But it also has the power to misinform or lead astray, resulting in practices that compromise the wellbeing of autistic people.
Every piece of autism advocacy I do is done with the goal of combatting the double empathy problem. Specifically, it’s done with the goal of saturating the dialogue about autistic people with the perspectives of autistic people. To that end, I was thrilled to have the opportunity to present at the Milestones National Autism Conference this past June. I first attended the conference about ten years prior. I recall being in awe of how many people seemed to know so very much about what they were presenting about. When I first considered submitting a proposal to present at the conference, I felt like a small child dressing up in their parent’s work clothes. I had presented at other conferences before, but never such a large, autism-specific conference. Despite being very confident in my multi-faceted autism knowledge and experiences, I was surprised to be selected to present.
I was also surprised on the day of the conference by many of the ways in which the presenting experience was accessible for me. For example, a table staffed by people who could help presenters troubleshoot technology setup to project their presentations. The heightened anxiety I experienced when I realized the adapter I had brought to connect my laptop to the projection system wasn’t actually compatible with my laptop (oops) was quickly alleviated when someone at the table was able to lend me a compatible adapter. Presenters also had volunteers assigned to accompany us from our presentation room to the interview room after the presentation was complete. In the midst of the post-presentation adrenaline rush, I absolutely would have forgotten otherwise! Finally, I so appreciated the presence of a room with sensory materials in which I could have a quiet space to recover from the stresses of large crowds and noise. They also have these rooms available for other demographics attending the conference, including caregivers.
There were, of course, aspects of the conference that were uncomfortable to me. Like many autistic self-advocates, I believe that ABA and behaviorism in general can often do more harm than good. To train a behavior rather than to support the need communicated by that behavior contributes to the masking tendencies that prevent so many autistic people from self-preservation. Presenting ideas like these that criticise ABA, even subtly, felt intense at a conference with so much focus on ABA. But as I try to remind myself, that’s the point. Different ideas are how we grow, and I so deeply believe in the importance of holding the experiences of those most affected as central in any situation. If you have a viewpoint to share, I hope you’ll consider sharing it as well, in a way that’s comfortable to you! I’m grateful to Milestones for continued opportunities to share mine.
ABOUT THE WRITER
Carly Nelson is a graduate student, a person on the autism spectrum, and the sibling of another person on the spectrum. She is passionate about the need to foster self-advocacy as a pathway for learning, growth, and self-determination.This author intentionally uses identity-first language as a reminder that neurodiversity is a valid form of diversity like others that are acceptable to refer to with identity-first language (e.g. brown-eyed girl, Hispanic person, etc.) and in support of Autistic culture. You can read more about that here.
This article was provided by a guest writer for Milestones Autism Resources. Views and opinions expressed in this article are the writer's own. Milestones strives to create conversation around important topics and to provide members of the community with a platform to share their perspective. In addition, while Milestones' policy is to practice person-first language, we encourage all self-advocate to identify themselves as they wish so you may see language that does not align with Milestones' internal person-first language policy throughout the blog.