Examining barriers to care faced by pediatric patients with autism spectrum disorders seeking outpatient treatment
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Autism spectrum disorder (ASD) refers to a group of neurodevelopmental disorders characterized by impairments in social interaction and communication, as well as restricted behaviors and interests. Individuals with ASD also display higher incidence of comorbid medical conditions such as seizure disorders, attention-deficit/hyperactivity disorder, anxiety, and gastrointestinal issues. Accordingly, individuals with ASD often require more frequent medical encounters and utilize a wider range of services than those with normal development. Despite this increase in medical attention, there still exists a pervasive lack of knowledge on how to best care for this complex patient population. Even among well-equipped providers, the communicative impairments seen in ASD may complicate a patient’s ability to understand explanations and instructions provided by clinicians. Furthermore, hypersensitivities to auditory, visual, and other sensory stimuli common in the hospital setting may make it difficult for patients with ASD to tolerate necessary testing and/or treatment procedures. The ASD Friendly Ethnographic Study was designed with these concerns in mind, and aims to identify and describe barriers to care faced by patients with ASD as they seek outpatient treatment across several clinical departments at the Boston Medical Center (BMC). Unlike previous studies which have relied on self-reported assessments from parents and clinicians, our study employs ethnographic methods to observe firsthand how the hospital environment may exacerbate symptoms of ASD and compromise effective medical care for these patients. Our research team followed several ASD patients during visits at BMC and took detailed fieldnotes describing patient behavior, caregiver interaction, and provider response. Subsequent coding and analysis of these notes hopes to reveal the most meaningful barriers faced by patients with ASD, as well as techniques used to mediate or avoid these complications. We hope that further discussion of these results will inform best practices for treatment of ASD and guide future research on the subject.