Sensory Experiences of Adults with ASD and Severe and Complex Needs: A Qualitative Study with Practitioner Informants

Background: It is well established that individuals with Autism Spectrum Disorder (ASD) report unusual sensory experiences (e.g. Smith & Sharp, 2013; Robertson & Simmons, 2015). However, previous research has focused mainly on the sensory experiences of children and verbal adults with ASD and has relied heavily on self-report and parent-report measures: methods with obvious limitations. In this study we focused instead on adults with ASD and severe and complex needs who find it difficult to communicate their own perceptual experiences accurately. In order to access this population, we collected reports from autism practitioners, using semi-structured interviews.

Objectives:  To assess whether there are quantitative and/or qualitative differences in the nature and severity of the sensory experiences of adults with ASD and severe and complex needs as opposed to those with typical IQ levels.

Methods: 19 adult autism practitioners were interviewed about their experiences with autistic adults with severe and complex needs. Questions in the interviews used a variant of the Critical Incident Technique (Flanagan, 1954; Dickie et al, 2009) to evoke a more objective analysis of witnessed incidents where there had been clear sensory triggers. Transcripts of the interviews were analysed using Thematic Analysis (Braun & Clarke, 2006). 

Results: Many of the responses reported a familiar combination of hyper- and hypo-sensitivities combined with sensory seeking behaviour across all the senses, with a slightly higher frequency of (mainly negative) auditory experiences. Particularly graphic descriptions were given of individuals who maintained pressure on their bodies throughout the day by wearing tight clothing, an individual who was apparently bothered by the humming noise from a fluorescent light, outside the hearing range of the practitioners, and another who was particularly disturbed by visual clutter. Some, however, were less familiar, such as sensory seeking of loud noises like drilling, and of high temperatures by touching hot kettles and toasters. A striking quantitative difference found in these data were the extreme reactions either to avoid or reduce unwanted sensory stimulation or to obtain desired stimulation. Examples included “challenging behaviour” like throwing furniture, or running across a busy street to obtain a snack packet, the rustling noise of which was a desired goal.

Conclusions: It appears from our unique and rich data set that the clear sensory features experienced by adults with ASD and severe and complex needs are largely similar in nature to those reported by adults with ASD and typical IQs, with a few fascinating exceptions. However, the most remarkable difference is in the more extreme apparent reactions to both pleasant and unpleasant sensory triggers. Arguably, therefore, sensory “reactivity” is a useful term to have in descriptions of sensory features in ASD. It should also be noted that the combination of experience and relative objectivity on the part of our practitioner participants has provided a valuable extra dimension when investigating the behavioural phenotype of this enigmatic condition, and can be usefully used as an integral part of practitioner training as well as future research.