‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming

Abstract

‘Stereotyped or repetitive motor movements’ are characterised as core features in the diagnosis of autism, yet many autistic adults (and the neurodiversity movement) have reclaimed them as ‘stimming’. Supported by a growing body of scientific research, autistic adults argue that these behaviours may serve as useful coping mechanisms, yet little research has examined stimming from the perspective of autistic adults. Through interviews and focus groups, we asked 32 autistic adults to share their perceptions and experiences of stimming, including the reasons they stim, any value doing so may hold for them and their perceptions of others’ reactions to stimming. Using thematic analysis, we identified two themes: stimming as (1) a self-regulatory mechanism and (2) lacking in social acceptance, but can become accepted through understanding. Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.

Dissociation in How Core Autism Features Relate to Interoceptive Dimensions: Evidence from Cardiac Awareness in Children

“…RRBs are often thought of as maladaptive, distracting the child from social engagement or learning. However, there is evidence to suggest that some of the RRBs in which autistic children frequently engage, such as hand flapping and body rocking, are self-soothing and may have an adaptive function as a means of lowering arousal and regulating the autonomic nervous system (which generates interoceptive signals) (Hutt et al 1975;Kapp et al 2019).…”

Measurement of Subcategories of Repetitive Behaviors in Autistic Adolescents and Adults

“…It is possible that individuals view their RRBs as problematic because others have had negative reactions when they display these behaviors or have told them to stop. 28 Alternatively, they may be experienced as more problematic if they feel they must camouflage these behaviors to avoid feeling marginalized. 28 These response categories may also promote underreporting if an adult views their behavior as a positive attribute, rather than a challenge.…”

“…28 Alternatively, they may be experienced as more problematic if they feel they must camouflage these behaviors to avoid feeling marginalized. 28 These response categories may also promote underreporting if an adult views their behavior as a positive attribute, rather than a challenge. More information is needed on adults' perspectives of their RRBs to inform interpretation of the RBS-R. Cognitive interviewing, 47 a standard approach used in questionnaire development, may be useful to assess comprehensibility, ambiguity, and relevance of items, as well as the decision processes the individual goes through when endorsing different behaviors.…”

“…Focus groups and interviews with autistic individuals will be important to inform development of new instruments. Using these approaches, Kapp et al 28 found that some autistic individuals reported certain RRBs as mechanisms to self-regulate when feeling overwhelmed. Insights gained from their perspectives highlight a need to consider whether response choices on future instruments should capture another feature, such as frequency, rather than emphasizing behaviors as problematic.…”

“…In a recent qualitative study, many autistic adults reported that some repetitive rhythmic behaviors were used as self-regulatory mechanisms in response to sensory overload, dysregulated or excessive thoughts, or experiencing an abundance of emotion that could not be contained. 28 Insights into the different causes of these behaviors highlight the importance of using self-reports to assess RRBs. Self-reports will likely capture nuanced differences in the nature of the behavior and/or the cause of the behavior itself that may be overlooked by caregivers, who may perceive a specific behavior as being the same or similarly motivated across contexts.…”