DOI: 10.1002/icd.70133 ISSN: 1522-7227

Rituals and Routines: A Delphi Study With Autistic Young People as Experiential Experts

Stephanie Petty, Victorina Clegg, Amy Cantwell

ABSTRACT

We report an updated perspective on what autistic rituals and routines are because there is too little recognition of their variable appearances and underpinning functions. We conducted a novel Constructivist Grounded Delphi study with autistic young people as experiential experts ( n  = 12) to reach consensus over three rounds. Participants were aged 12–18 years, mean age 15.6 years. Seven reported male gender, five reported female gender. Seven reported White ethnicity, three reported Mixed and two reported Asian ethnicities without giving further details. There were a range of views over whether rituals and routines were the same, similar, or different, but routines were consistently made up of rituals. Rituals were autistic when they had a ‘have to do it’ quality, met personal limits (number, order, colour) and managed anxiety by subjectively organising the day (often linked to a belief that things will be OK). Examples were attention to left/right when dressing, counting when walking, or ending social interactions in a set way. Routines organised activities of daily living and were used mostly at meals and bedtime. Autistic rituals and routines were characterised by their emotional meaning and the disruption to wellbeing when denied. We share this update with autistic people, their families, clinicians and researchers who align with a non‐pathologizing approach.

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