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As the number of Pennsylvanians diagnosed with autism spectrum disorder (ASD) continues to grow, healthcare facilities are seeing an increase in the number of these individuals seeking care. Negative interactions with the healthcare system and concerns about the quality of care provided to this population have been reported by individuals with ASD, their families and healthcare providers. The Pennsylvania Patient Safety Authority received 138 event reports involving patients with ASD from July 2004 through August 2014. Thirteen of the events were Serious Events and caused harm to the patient. Analysis of event report narratives revealed 12 patient safety concern themes involving patients with ASD. Know what you can do as an ASD patient or family member to improve care while using the healthcare system.
Autism spectrum disorder (ASD) is a complex, lifelong neurodevelopmental condition characterized by
impairments in communication and social interaction and restricted, repetitive patterns of behavior, interests
or activities. Autism symptoms range from mild to severe and vary over time or in response to changes in
Age: The majority of the 138 events were reported for patients under the age of 20 (60.9%, n=84), with most of these events reported for patients under age 10 (n=52).
Facility Type: Although acute care and children’s hospitals reported the majority of events (82.6%, n=114), events have been reported for individuals with ASD at each facility type.
Serious Events (Harm to the Patient): Though the number of reports involving ASD patients may be small (138), 13 (9.4%) were labeled Serious Events. To compare, in 2013, Serious Events represented only 3.1% of all events (246,606) reported to the Authority.
ASERT is a statewide initiative funded by the Pennsylvania Department of Public Welfare’s Bureau of Autism Services that aims to support individuals with ASD and their families. There are three ASERT regions in Pennsylvania: western, central and eastern. Each region has established an ASERT Collaborative: a partnership of medical centers, centers of autism research and services, universities and other providers of services for individuals of all ages with ASD and their families. These collaboratives are charged with understanding and meeting the needs of this population that are common across the state as well as region-specific.
ACT for Autism outlines the steps that can be taken to improve interactions between healthcare personnel and individuals with ASD.
This resource created by Patient Safety Authority