Novel Approaches to Parent-Reporting of Behaviors in Autism Spectrum Disorder

Background: Current autism spectrum disorder (ASD) interventions are mainly evaluated using retrospective parent-reported measures. While useful for describing general clinical presentation, this methodology often requires recall of specific behaviors weeks after they occurred, which can reduce accuracy of ratings. Furthermore, these measures are typically only administered before and after an intervention, limiting the ability to assess stability or dynamic change during an intervention. Emerging technologies are making it increasingly feasible to administer validated scales repeatedly in a simple and efficient format that can that can both improve parental experience and help enhance the validity and reliability of their reports.

Objectives: Validate MyJAKE - a web and mobile application – that allows parents to complete a new online rating scale (The Autism Behavior Inventory, ABI) about their child. The ABI contains 5 domains: Social Communication, Repetitive Behaviors, Mental Health, Self- Regulation and Challenging Behaviors. In addition, parents report significant behaviors such as affect and sleep and other events as they occur. Comparisons were made between these measures, other scales, and data from biosensors which individuals with ASD wore in the home.

Methods: Parents of individuals with ASD aged six years to adult completed the ABI online alongside commonly used paper-and-pencil scales at regular 4-week intervals during an observational clinical study (n=127). They also used the JAKE app to make daily reports on their child’s sleep quality, affect, and other self-selected specific behaviors across an 8-week observational study. Individuals with ASD wore an actigraphy device each night for the duration of the study. Correlations between all parent-reported measures were calculated. Actigraphy sleep features were also compared to parent-reported measures of sleep and other behaviors.

Results: The ABI showed good internal consistency (Cronbach’s alpha >0.80 for all 5 domains) and convergent validity with other rating scales: ABI/ABI-Short(S) social communication domain with Social Responsiveness Scale (SRS) social communication domain (r=0.73/0.62); ABI/ABI-S restricted or repetitive behavior (RRB) domain with SRS RRB domain (r=0.76 /0.71). Daily JAKE report measures correlated with scales (average daily report of overall type of day correlated with 4 weekly reports of caregiver burden (r=-0.30 p=0.02 n=88) and with ASD symptoms (r=-0.50 p<0.001); average valence on mood report correlated with daily reports of sleep (r=0.43, p<0.001). Actigraphy recordings correlated with parent measures of sleep and other behaviors: average sleep start time correlated with average daily tracker sleep report (r= -0.23 p=0.04 n=85); average sleep duration correlated with ABI core symptoms (r=-0.44, p<0.01).

Conclusions: The ABI is performing well, showing high internal consistency and moderate-to-high associations with standardized paper-and-pencil measures. Daily measures of behavior also showed statistically significant correlations with the ABI and other scales. The use of daily tracking of symptoms by parents could be a useful way of identifying early change in response to intervention. Sleep features measured by actigraphy showed some correlation with parent reports of sleep and with other parent-reported behaviors, demonstrating potential use of a more objective measure to accompany parental report of change over the course of an intervention.