Identifying Clinical Staff Awareness and Accommodations for Adult Patients with Autism Spectrum Disorders (ASD)

Abstract

Introduction: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder defined by challenges with social skills, communication, restricted interests, and repetitive behaviors. The Center for Disease Control and Prevention (CDC) estimates that there are 1:54 children with ASD. As these children reach adulthood, a paucity of resources and properly trained healthcare personnel to treat these individuals may exist. This project attempts to identify clinical staff ASD awareness and accommodation gaps in providing healthcare.

Methods: Data was collected from two populations. 1) clinical staff (e.g. nurses, medical assistants, receptionist) in primary care offices, and 2) adult patients with ASD and their parents or caregivers. Participants were recruited in collaboration with the Joanne and Ted Lindsay Foundation Autism Outreach Services Program (OUCARES). Recruitment efforts encompassed 30 offices, 4 events, and one listserv email to all OUCARES members. Survey responses were compared for common or unique themes.

Results: Participants included 3 clinical staff, 6 adults with ASD, and 1 parent. None of the clinical staff reported patient accommodations. Adults with ASD stated that the accommodations received were those they or their parents provided. Five of the 6 adult patients responded that they do not alert their physician offices about their ASD. Rather, parents disclose this information to the offices or no information is shared. Six out of 7 adult patients had parents accompany them to their appointments. Additionally, all 3 clinical staff members said that parents/caregivers should attend appointments.

Discussion: The low yield of participation may indicate an unwillingness to discuss ASD. The patient’s reliance on parents to disclose or assist during appointments is reported, however this may not foster the patient-doctor understanding needed to provide optimal healthcare quality. The apparent disconnect between the primary care office staff, the adult with ASD, and specific accommodations that could facilitate care, should be further investigated.