An Ethnographic Study of the Experience of Patients with Autism Spectrum Disorder during Outpatient Encounters

Background: Autism spectrum disorder (ASD) is often associated with increased rates of other comorbidities, with over 95% of patients with ASD displaying co-occurring conditions or symptoms such as gastrointestinal issues, attention-deficit/hyperactivity disorder, and sleep disturbances. The complexity of these cases often require regular treatment from a wide range of medical specialties, resulting in children with ASD utilizing a wider range of medical services with greater frequency compared to children in general. It has been reported that patients with ASD face additional barriers when accessing health care that result in many individual needs remaining unmet. In particular, over-stimulating environments, disruptive patient behaviors, and difficulties in communication between providers and patients have been cited as contributing to poor outcomes for patients with autism.

Objectives: The purpose of this study was to identify and describe barriers and facilitators to care for patients with ASD when receiving outpatient treatment in a hospital setting.

Methods: We used ethnographic methods to understand the experiences of patients with ASD and their families. Researchers followed 23 patients and their families for the duration of their outpatient visit to Boston Medical Center, an urban safety-net hospital. All patients had a documented ASD diagnosis and were attending a regularly scheduled outpatient appointment. Extensive ethnographic fieldnotes were taken to capture all relevant features of medical visits and transcripts of these notes were coded to identify key themes and recurring patterns during patient visits.

Results:

There were 752 occurrences of barriers to care across all transcripts, representing 85 unique events or interactions. Barriers to care were distributed relatively evenly across thematic categories of Patient Behavior (29.4%), Other Hospital Factors (28.2%), Environment (27.1%), and Communication (15.3%). A majority of barriers to care occurred in the exam room (55.3%), with the distraction of caregivers or providers due to patient behavior representing a major issue (11.8% of cases). In addition to these barriers to care, 45 unique events or interactions were identified as facilitators. Most facilitators were related to Communication (42.2%) and Environment (36.4%) rather than Patient Behavior (4.4%) or Other Hospital Factors (4.4%). Like barriers, most facilitators were identified in the exam room (46.7%), with the bulk of facilitating events being patient-directed communication (28.9%) and direct caregiver participation (17.8%), including caregiver input on specific needs related to ASD (4.4%).

Conclusions:

These results suggest that the barriers to care for children with autism are diverse, spanning patient behavior, the hospital environment, communication between families and providers, and other hospital factors such as long wait times. To address these barriers, hospitals may want to focus on enhancing facilitators of care such as a sensory-friendly environment with age-appropriate toys and provider training that emphasizes patient-directed communication and attention to specific ASD-related needs. We hope that further discussion of these results will inform best practices for the outpatient treatment of individuals with ASD and guide future research in the area.