Understanding Repetitive behaviours (URB): a clinical and cost effectiveness, multi-site randomised controlled trial of a group for parents and carers of young autistic children.
Restricted and repetitive behaviours (RRB) vary greatly between autistic people. Some are a source of pleasure or create opportunities for learning, others may be detrimental in day to day life or cause harm. We have developed, in close collaboration with parents/carers, the Understanding Repetitive Behaviours (URB) programme, designed for families of young autistic children, to help them recognise, understand and respond sensitively to their child’s impactful RRB. This study is a clinical and cost effectiveness, multi-site randomised controlled trial of the URB parent programme
versus a psychoeducation programme (equivalent to current best practice), Learning About Autism (LAA). Participants were parents/carers, with an autistic child aged between 3-9 years and 11
months. The study was delivered across three sites in England and Scotland. Analyses were completed using intention-to-treat principles. Two hundred and twenty seven families were randomised (113 in LAA; 114 in URB arm). No differences were found between the arms on the primary outcome measure (The Clinical Global Impression - Improvement scale). Analysis of secondary outcomes indicated that children in the URB arm were more likely to be rated as
responders in target impactful RRB at 24 weeks but that this effect was not maintained at 52 weeks. Improvements in parent and family functioning were apparent, with no evidence of differences
between the arms. The study reconfirms that it is important that clinicians consider both RRB and social communication needs of autistic children with parents when planning appropriate support.
Citation
Grahame, V., Kernohan, A., Ehsan Kharati, . K., Mathias, A., Butcher, C., Dixon, L., Fletcher-Watson, S., Garland, D., Glod, M., Goodwin, J., Heron, S., Honey, E., Le Couteur, A., Mackie, L., Maxwell, J., Montgomery, L., Ogundimu, E., Probert, H., Riby, D., Rob, P., …Rodgers, J. (in press). Understanding Repetitive behaviours (URB): a clinical and cost effectiveness, multi-site randomised controlled trial of a group for parents and carers of young autistic children. Autism,
