Describing the communication of autistic people during experiences of distress: A scoping review

Autistic people can experience distress for many reasons. Some of these reasons may include unsupportive environments; experiences of trauma; sensory overload; burnout, inertia, meltdown and shutdown; pain; and mental health diagnoses such as anxiety. Little is known about how distress can impact communication and what others can do to provide support in these moments. This scoping review explores how communication is described during experiences of distress for autistic people, including communication partner strategies to support these interactions. Following a comprehensive database search, 18 articles were included in this scoping review. Firsthand perspectives of autistic people were discussed in 10 studies. Distress was most often characterized by instances of anxiety and/or stress. Eleven studies discussed non-spoken methods of communication, including gestures, facial expressions and behavioural manifestations (e.g. hitting, screaming) during experiences of distress. Identified facilitators to communication during experiences of distress included the presence of a calm, supportive environment and communicative aids. Understanding the impact distress has on communication is beneficial to both autistic people and those who support them. This review contributes to the body of literature aiming to better understand and support autistic people during moments of distress. Lay abstract Past research talks about (1) how autistic people may communicate and (2) how and why autistic people may experience periods of distress. There is not much research about the way autistic people communicate during periods of distress. We therefore looked at research exploring how autistic people of all ages communicate during periods of distress. Communication includes various methods of sending and receiving information, including spoken and non-spoken communication methods (e.g. observable behaviours, typing, gestures). We explored how often researchers collected firsthand perspectives from autistic people. We also collected information on what made communication easier, or more difficult, during periods of distress. We used a methodological approach called a scoping review to identify and evaluate 18 articles that met our criteria. The most common communication method described in the articles was non-verbal communication, including gestures, facial expressions and observable behaviours such as screaming and hitting. Firsthand autistic perspectives were included in just over half of the studies. Facilitators to communication included a calm, supportive environment and communicative aids relevant to the situation, such as a pain scale. This study will help those who support autistic people, and autistic people themselves, by showing the many ways autistic people may communicate when experiencing distress and describing strategies that can be used to support autistic people in those moments.