The Sensory Observation Autism Rating Scale (SOAR): Developed using the PROMIS (R) framework

Autistic people experience the sensory world differently, impacting behavior. First-hand accounts and group-based research have found that sensory differences impact a range of things including family life, anxiety, participation, and daily living. Early sensory differences are widely reported to be associated with a cascade of developmental difference, suggesting that early autism diagnosis and sensory mapping could enable the provision of supports to facilitate flourishing. However, appropriate measurement tools are not available as all rely on proxy report or are observation measures which include limited modalities or domains and require the administration of stimuli. Therefore, following the gold-standard recommendations for measurement development outlined by the PROMIS (R) framework, we created the Sensory Observation Autism Rating scale (SOAR). We identified sensory behaviors across all primary domains and modalities through an extensive autism-sensory literature review and from focus groups with autism stakeholders. The initial item bank was then refined by an expert panel and through video coding five-minutes of free play from Autism Diagnostic Observation Schedule assessments of 105 age- and gender-matched autistic and developmentally delayed children (aged 13-36 months; 38 female). An additional 25% of the sample were double coded to investigate interrater reliability. Observational data and expert review supported the reduction of the item bank to 37 items. We propose that the refined SOAR has excellent face and ecological validity, along with interrater reliability (Intraclass correlation = 0.87-0.99). Following further data collection and refinement, SOAR has promise to fully characterize sensory behaviors in autistic children and indicate useful supports.