Autistic Adults' Views and Experiences of Stimming

Background:
‘Stereotyped or repetitive motor movements’ are characterised as core symptoms in the diagnosis of autism and treatments to control them remain popular (Jaswal & Ahktar, 2018). Diverse therapeutic perspectives have regarded these behaviours as self-stimulatory acts that shut out external stimuli and interfere with the person’s (and others’) focus (Lilley, 2018). In contrast, many autistic adults (and the neurodiversity movement) have reclaimed them as ‘stimming’, arguing they may serve as useful coping mechanisms and decrying practices such as “quiet hands” (e.g. Bascom, 2012). Yet only one empirical study has directly elicited autistic adults’ views about stimming, a pilot online survey presented by Steward at IMFAR (2015) that found most participants viewed stimming as a coping mechanism to reduce distress or overstimulation. Furthermore, most reported they generally or sometimes enjoyed stimming, yet had been told not to do it.

Objectives:

We sought to extend the study by Steward (2015) through more in-depth data collection and purposive sampling for a diverse range of support needs among autistic adult participants. We aimed to examine autistic adults’ perceptions and experiences of stimming, including: (1) the reasons they stim, (2) any value doing so may hold for them, and (3) their perceptions of others’ reactions to their stimming.

Methods:

We conducted semi-structured interviews and focus groups with a participatory team of autistic and non-autistic researchers. Thirty-two autistic adults (20 male, 11 female, one non-binary), between the ages of 21 to 56 years (µ = 36.4) participated in the study (20 in one-to-one interviews and six each in two facilitated focus groups). Recruitment took place through the existing networks of research teams in the Southwest of England and London, including residential homes and a training centre for autistic adults, producing a sample with a diverse range of support needs. Interviews and focus groups had a similar topic guide and prompts to encourage active participation.

Results:

Using thematic analysis (Braun & Clarke, 2006), we identified two themes, including stimming as: 1) a self-regulatory mechanism, and 2) lacking in social acceptance, but can become accepted through understanding. For the first theme, participants reported external causation of stimming through overwhelming environments that cause sensory overload, as well as internal causation through noisy thoughts. Stimming always involved uncontainable emotion, but it could be a positive emotion such as joy or a negative one such as anxiety. For the second theme, we observed a dynamic of (de)stigmatisation in which others usually devalued participants’ stims, especially when they were harmful and as participants got older, but stims could become socially accepted through others’ understanding.

Conclusions:

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. The point of intervention could therefore be shifted to dysfunctional causes of stimming, such as the overwhelming environment and possibly distressing thoughts and emotions. Future research might investigate the possibility that everyone stims by comparing stimming to the fidgeting ubiquitous among non-autistic people.