Interoception in Autism,Pitfalls,and Promise: A Participatory Research Perspective

Abstract

Bodily autonomy is essential to Autistic well-being. Interoception supports bodily autonomy through guiding behavior in support of homeostasis. Promoting adaptive interoceptive skills is therefore crucial to improving Autistic well-being. To date, research on interoception in Autistic people has been poorly informed by the experiences and goals of Autistic people, has had a narrow focus on comparison with non-autistic norms in search of deficits, and has had limited impact on Autistic quality of life. In this perspective piece, a team of Autistic and non-autistic researchers review findings to date and make recommendations for future research directions. We argue that participatory research is needed to comprehensively map the varied interoceptive landscape of Autistic people, ensure that new interoceptive measures are autism-relevant, and guide interventions designed to improve the interoceptive and broader well-being of Autistic people. We believe that if interoception research is conducted in partnership with the autism community, the understanding of interoceptive processing and the full range of interpretive differences that result will be impactful and informative.

Community Brief

Why is this topic important?

Interoception is our ability to notice, monitor, and understand signals from our bodies. The accounts of Autistic people emphasize the centrality of challenges with interoception to their lived experience and quality of life, including difficulties with knowing when they are thirsty, need to go to the bathroom, or are feeling unwell. These challenges likely stand in the way of many capabilities that are important for a fulfilling and independent life.

What is the purpose of this article?

The goal of this article is to review what is already known about interoception in Autistic people, discuss how the findings might relate to the everyday challenges Autistic people face, and make recommendations about how research could be better designed in the future to speak to both Autistic people’s everyday experiences of interoception and their research priorities.

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

The authors are a team of Autistic and non-autistic researchers who have the experience of conducting research on interoception, being Autistic, and supporting Autistic people to nurture their interoceptive capabilities.

What is already known about this topic?

Previous research has shown differences between Autistic and non-autistic children, adolescents, and adults on various measures of interoception, which corroborates the idea that interoception is affected in many Autistic people. The findings have not always replicated across studies, however, suggesting that there are important components of Autistic interoception that researchers have been missing. Moreover, these findings have not been very helpful in explaining the everyday challenges of Autistic people, nor how we can best support them.

What do the authors recommend?

The authors recommend moving away from studies that simply compare performance between Autistic and non-autistic people on various interoception measures, and instead adopt a participatory research approach to integrate Autistic people’s views and experiences from the get-go.

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

The authors hope that their recommendations for future research will ultimately result in research that better captures Autistic people’s phenomenological interoceptive experiences and leads to better supports for fostering Autistic flourishing and well-being.