“My Sensory Experiences”: Everyday Sensory Preferences and Challenges Revealed By Young People on the Spectrum Using a Picture-Based Interview Tool

Background: Information about the sensory responses of people on the spectrum is commonly gathered through parent/caregiver or teacher questionnaires. The perspective of the person on the spectrum is less commonly considered. As sensory sensitivities can contribute to distress and challenging behaviours, it is important that they are understood and accommodated.

Objectives: This project aimed to (a) evaluate the clinical utility of My Sensory Experiences, a tool which utilises photographic representations of every-day sensory experiences, combined with open-ended questions to assist individuals on the spectrum in describing their sensory experiences, and (b) analyse the nature of everyday sensory experiences that are frequently preferred or that present challenges.

Methods: Three cycles of participatory action research guided the development of My Sensory Experiences. Participants included 44 individuals on the spectrum (aged 8-49 years), 33 parents, and 5 occupational therapists. During the first two cycles, semi-structured interviews were conducted with 5 occupational therapists and 11 parents. In the final cycle, 21 children and 12 adults on the spectrum, and 21 parents completed surveys with closed- and open-ended questions. The feedback was analysed using (a) descriptive statistics, and (b) content analysis of the transcribed interviews and open-ended survey questions. The frequency with which items were identified as bothersome or calming, was also analysed using descriptive statistics.

Results: “My Sensory Experiences” uses photographs depicting sensory input in everyday contexts such as shopping centres, classrooms, and hairdressers, including everyday experiences that individuals often find challenging, calming or that they seek out. The tool includes child/adolescent and adult versions, and a family observation form. Although the tool can be completed independently by people on the spectrum and their families, administration through an interview provides a more in-depth, personalised perspective on the person’s sensory preferences. The tool is intended to augment rather than replace standardised norm-referenced sensory processing assessments. In terms of clinical utility, the interview format and visual cues enabled people on the spectrum to express their preferences, and develop greater self-awareness of their sensory preferences, so that they were better able to self-advocate and develop their own strategies. The visual cues were reported to capture the full range of sensory experiences that are often liked or disliked. Occupational therapists appreciated the richness of the information gathered and its relevance to the person’s life. Parents gained new insights into their child’s sensory preferences. Analysis of the everyday sensory experiences that were frequently identified as challenging included unpredictable or uncontrollable sensations such as sirens, people talking or flickering lights. Sensations that are predictable and controllable such as repetitive patterns or sounds were often reported to be calming. Many people described difficulties filtering sensory information such as following someone talking in a noisy environment.

Conclusions: My Sensory Experiences effectively captures the voice of people on the spectrum. Analysis of items that are commonly preferred or that present challenges can inform the design of everyday environments to better accommodate the sensory needs of people on the spectrum.