Autism Comes to the Hospital: Experiences of Hospital Care From the Perspectives of Children and Adolescents with Autism Spectrum Disorders, Their Parents and Health Care Providers

Background: Children and adolescents with Autism Spectrum Disorders (ASD) are a complex, vulnerable and rapidly increasing population who experience a multitude of mental health, developmental, and health challenges. Because of the complex presentation of ASD, these children and adolescents and their families visit a variety of medical settings, for both health and mental health purposes. Moreover, children and adolescents with ASD tend to have a number of special needs that may be particularly acute during hospital visits. Currently, there is a dearth of research examining children’s experiences with hospitalization and even less on the unique hospital experiences of children and adolescents with ASD and their families.

Objectives:  The purpose of this study is to examine the lived experiences of children and adolescents with ASD who have been hospitalized for a medical procedure, their families, as well as those of pediatric health care providers involved in their care. The ultimate objective is to utilize the findings to inform policy and best practice approaches to the delivery of pediatric hospital-based health and mental health services adapted to this unique and under-served segment of the population.

Methods: Semi-structured interviews are conducted with purposively selected children and adolescents with ASD (n = 20), parents/care givers (n = 20), and pediatric health care providers (n = 20) who were central to their care at either The Hospital for Sick Children, Toronto or Stollery Children’s Hospital, Edmonton. Interpretive description, a qualitative methodology used to explore health research phenomena, is used to guide the analysis.

Results: Preliminary findings indicate that children and adolescents with ASD who are hospitalized for a medical procedure face unique challenges. Health care providers who make efforts to understand the uniqueness of these children, and who created small, yet meaningful accommodations for these children were highly valued by parents. In contrast, parents expressed frustration when reported symptoms were automatically attributed to the ASD diagnosis. Health care provider participants were aware of the challenges faced by these families and were open to further training opportunities to enhance their care for these children and their families.

Conclusions: Children and adolescents with ASD, parents, and health care providers expressed both positive and negative experiences of hospitalization. The implementation of simple accommodations along with an understanding of ASD as a diagnosis and appreciation for the uniqueness of the specific needs of individual children may enhance these families’ hospitalization experiences.