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About Sickkids
About SickKids

October 1, 2012

Autism Awareness Month: SickKids develops tools for change

SickKids examines the hospital care experiences of families with children or adolescents with Autism Spectrum Disorder

By Lauren Poplak

Children and adolescents with Autism Spectrum Disorder (ASD) and their families are faced with unique challenges on a daily basis. One example is frequent hospitalization or clinical visits as part of diagnosis or treatment of medical issues, provision of therapy, or participation in research. Children and adolescents with ASD visit a variety of medical settings because they experience a multitude of mental health, developmental and medical difficulties. However, there’s a shortage of scientific data examining what they experience during medical hospitalization and clinical visits.

The Hospital for Sick Children (SickKids) is investigating the lived experiences of children and adolescents with ASD and their families during hospitalization and clinical visits. Funded through the New Investigator Grant Program of SickKids Foundation, the project is being completed in collaboration with senior researchers at the Stollery Hospital in Edmonton.

“Children and adolescents with ASD often have difficulty waiting for procedures, tests or appointments and enduring invasive medical procedures,” said Barbara Muskat, Director of Social Work at SickKids and principal investigator of the study. “Their pre-existing sensory sensitivities are often heightened due to the nature of the hospital setting and their frustration may be expressed in a way we don’t always understand.”

The purpose of the study is to better understand what children with ASD go through during hospitalization, as well as the experiences of their families and the health care staff who take care of them. Data was collected from children and adolescents with ASD from every area of the hospital, including inpatient and outpatient units. Parents and paediatric health-care providers were also interviewed. The findings will be used to document best practices and inform policy to improve the experience of all families at SickKids, especially those with children with ASD.

Preliminary results indicate that parents feel they must actively fill the role of advocate for their child’s ASD-related needs. They expressed a desire to be listened to by staff and be more involved with helping the health-care team develop strategies to address the unique needs of their children. They also said that their hospital experience is more positive when staff members maintain an open dialogue with them, demonstrate sensitivity to their child’s unique needs and welcome the expertise of the parents about how to communicate with their child.

Health-care providers said staff training would increase understanding of ASD and offer support strategies that take into account each child and his or her unique hospital needs.

The project researchers intend to use the data in the development of a toolkit for information sharing. Such a kit will have resources for families with children with ASD to help them prepare for hospital visits and to help staff prepare for visits by patients with ASD.  

See AboutKidsHealth for resources and more information about supporting a child or adolescent with ASD.