Analysis of Parent Responses to Using a Remote Autism Diagnostic Assessment System

Background:  A remote autism diagnostic assessment system was designed through a series of research studies conducted with clinicians and parents of children with autism. This system includes a smartphone video capture application for parents to follow clinician instructions to record and share video evidence of their child’s behaviors; and a HIPAA-conforming web-based platform for clinicians to complete a diagnostic assessment for autism based on parent-collected naturalistic evidence. 

Objectives:   A field study was conducted to analyze parents’ reaction to using the video capture application in their home. 

Methods:  Participant families had children between the ages of 21-86 months; 29 were referred for an ASD evaluation, 8 were typically developing, and the remaining 6 had other diagnoses. Using the video capture application parents recorded four 10 minute scenarios that included the child playing alone, the child playing with a sibling or parent, family mealtime, and parent concern(s). These scenarios were chosen because they are likely to encourage social communication and play behavior. A follow up survey was conducted to solicit parents’ responses with regards to ease-of-use of the application, validity of the approach, adoption challenges, and their recommendations.

Results:  Data shows that 95% (41/43) of parents found the video capture application easy to use. Parents found two aspects of design directly contributing towards the simplified capture experience. First, the design is simple, has clear iconic visuals, and needs “few clicks” to capture and upload. Second, the capture application has embedded clinician’s prescription to guide parents in staging the environment (e.g. instructions about probes like books, toys and maintaining appropriate field of view) and use of social presses to engage the child (e.g. name call, pointing, eliciting child request) during the recording.  Parents anticipated that the capture application would facilitate effective communication with caregivers about the child’s naturalistic behaviors and would enable timely assessment. Although 58% (25/43) of parents reported that their child noticed the recording device, 91% (39/43) indicated that they captured either all (reported by 31 parents) or three (reported by 8 parents) scenarios representing naturalistic behaviors. Furthermore, when asked about privacy, 8 out of 43 parents mentioned some concerns about video sharing but all parents were willing to record and share if it was beneficial to their child. Parents recommended that having control over data capture and deletion, as well explicit data sharing policies could boost their trust and ease their privacy concerns.  Parents suggested adding out-of-home recording scenarios since some behaviors of concern are more likely to trigger at school or other out-of-home environments.  Majority of the parents (84% = 36/43) considered this method a valid approach for sharing clinical information. Among 7 parents who had some concerns, 5 recommended that this method should compliment in-person diagnosis instead of replacing it and 2 questioned its effectiveness for children with mild conditions.

Conclusions:   Through in-home evaluation, parents confirmed that the video capture application facilitated a simplified and effective capture experience. Next, through a systematic study with clinicians the validity of the resulting diagnostic assessments will be analyzed.