Engaging the disability community in informatics research: rationales and practical steps.

As the informatics community grows in its ability to address health disparities, there is an opportunity to expand our impact by focusing on the disability community as a health disparity population. Although informaticians have primarily catered design efforts to one disability at a time, digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways disability intersects with other forms of identity. The urgency of moving toward this more holistic approach is grounded in ethical, legal, and design-related rationales. Shaped by our research and advocacy with the disability community, we offer a set of guidelines for effective engagement. We argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.

Understanding the experiences of self-injurious behavior in autism spectrum disorder: Implications for monitoring technology design.

OBJECTIVE: Monitoring technology may assist in managing self-injurious behavior (SIB), a pervasive concern in autism spectrum disorder (ASD). Affiliated stakeholder perspectives should be considered to design effective and accepted SIB monitoring methods. We examined caregiver experiences to generate design guidance for SIB monitoring technology. MATERIALS AND METHODS: Twenty-three educators and 16 parents of individuals with ASD and SIB completed interviews or focus groups to discuss needs related to monitoring SIB and associated technology use. RESULTS: Qualitative content analysis of participant responses revealed 7 main themes associated with SIB and technology: triggers, emotional responses, SIB characteristics, management approaches, caregiver impact, child/student impact, and sensory/technology preferences. DISCUSSION: The derived themes indicated areas of emphasis for design at the intersection of monitoring and SIB. Systems design at this intersection should consider the range of manifestations of and management approaches for SIB. It should also attend to interactions among children with SIB, their caregivers, and the technology. Design should prioritize the transferability of physical technology and behavioral data as well as the safety, durability, and sensory implications of technology. CONCLUSIONS: The collected stakeholder perspectives provide preliminary groundwork for an SIB monitoring system responsive to needs as articulated by caregivers. Technology design based on this groundwork should follow an iterative process that meaningfully engages caregivers and individuals with SIB in naturalistic settings.

Multi-level modeling with nonlinear movement metrics to classify self-injurious behaviors in autism spectrum disorder.

Self-injurious behavior (SIB) is among the most dangerous concerns in autism spectrum disorder (ASD), often requiring detailed and tedious management methods. Sensor-based behavioral monitoring could address the limitations of these methods, though the complex problem of classifying variable behavior should be addressed first. We aimed to address this need by developing a group-level model accounting for individual variability and potential nonlinear trends in SIB, as a secondary analysis of existing data. Ten participants with ASD and SIB engaged in free play while wearing accelerometers. Movement data were collected from > 200 episodes and 18 different types of SIB. Frequency domain and linear movement variability measures of acceleration signals were extracted to capture differences in behaviors, and metrics of nonlinear movement variability were used to quantify the complexity of SIB. The multi-level logistic regression model, comprising of 12 principal components, explained > 65% of the variance, and classified SIB with > 75% accuracy. Our findings imply that frequency-domain and movement variability metrics can effectively predict SIB. Our modeling approach yielded superior accuracy than commonly used classifiers (~ 75 vs. ~ 64% accuracy) and had superior performance compared to prior reports (~ 75 vs. ~ 69% accuracy) This work provides an approach to generating an accurate and interpretable group-level model for SIB identification, and further supports the feasibility of developing a real-time SIB monitoring system.

Detecting and Classifying Self-injurious Behavior in Autism Spectrum Disorder Using Machine Learning Techniques.

Traditional self-injurious behavior (SIB) management can place compliance demands on the caregiver and have low ecological validity and accuracy. To support an SIB monitoring system for autism spectrum disorder (ASD), we evaluated machine learning methods for detecting and distinguishing diverse SIB types. SIB episodes were captured with body-worn accelerometers from children with ASD and SIB. The highest detection accuracy was found with k-nearest neighbors and support vector machines (up to 99.1% for individuals and 94.6% for grouped participants), and classification efficiency was quite high (offline processing at ~ 0.1 ms/observation). Our results provide an initial step toward creating a continuous and objective smart SIB monitoring system, which could in turn facilitate the future care of a pervasive concern in ASD.