Research Summary: Predictors of emergency service use in adolescents and adults with Autism Spectrum Disorder living with family

Research Summary: Predictors of emergency service use in adolescents and adults with Autism Spectrum Disorder living with family

by Jordan Cleland

What you need to know: Emergency service use is common in people with ASD, yet many individuals and their families feel as though the emergency staff need more training to appropriately serve them. For individuals with ASD, the biggest predictors of ED use are: previous emergency service use, lack of structured daytime activities, and a history of aggressive behaviour towards others.

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What is the research about?

Individuals with autism spectrum disorder (ASD) often access a considerable amount of health services across their lifetime. Individuals with ASD often have higher rates of simultaneous medical issues (such as seizures and gastrointestinal problems) and sustain more injuries than typically developing peers. Emergency department (ED) visits can be for physical or mental health reasons. However, there are few studies that have examined what predicts ED visits among people with ASD. This study reports on the rate of emergency service use in a sample of adolescents and adults with ASD, and their experiences accessing emergency services.

What did the researcher do?

Participants were recruited through flyers and websites of community agencies, recreation programs and schools that support people with ASD, and through every local chapter of an autism organization in Ontario. To be included in the study, the participant had to have a diagnosis of ASD and the family members had to identify themselves as a caregiver of an individual with ASD who was over the age of 12. A total of 462 parents completed the questionnaire. The authors gathered information about the participants’ emergency service use in the previous two months (including police, paramedics, and ED visits), demographic variables, family distress, daily activities and health information. They also asked about the presenting problem in emergency visits, and the level of family involvement.

What did the researcher find?

Within the previous two months, 13% of the participants with ASD had used an emergency service, and the most commonly used service was the ED. Upon arriving at the ED, many patients presented with medical and mental health issues, among the most popular were: injury, aggression, and issues with psychotropic medication. In this sample, 18% of the participants reported using the ED in the last year. In fact, participants who had used the ED in the 10 months before the study had the greatest likelihood of using an emergency service in the 2-month study period. Predictors of ED use during the study included: having no structured daytime activities (like school or work) and a history of aggressive behaviour toward others. During their visits, most of the patients were spoken to directly about their care needs. Caregivers in this sample were almost always involved in their child’s medical care. However, there were several parents who felt that healthcare providers ignored their input and their suggestions for their child’s care were not taken into consideration.

How can you use this research?

Given that the strongest predictor of emergency department use is previous visits, it is vital to engage in future care planning. Proactive care plan tools may be important as emergency situations can present difficulties for some individuals with ASD due to communication difficulties, sensitivity to overstimulation, and complex psychiatric and medical presentations. The authors posit that there is a need to train hospital-based staff and other emergency personnel (police, paramedics) to work with patients with ASD. Additionally, parallel training could be implemented for individuals and families to be better prepared for emergencies.

About the Researchers

Yona Lunsky and Melissa Paquette-Smith are researchers at the Centre for Addiction and Mental Health and the University of Toronto. Jonathan Weiss is a researcher at York University in Toronto. Jacques Lee is a researcher at Sunnybrook Health Sciences Centre in Toronto.

Citation: Lunsky, Y., Paquette-Smith, M., Weiss, J.A., & Lee, J. (2014). Predictors of emergency service use in adolescents and adults with autism spectrum disorder living with family. Emergency Medical Journal, doi:10.1136/emermed-2014-204015

About the Chair

The Chair in Autism Spectrum Disorders Treatment and Care Research is dedicated to studying ways to improve the mental health and well-being of people with Autism Spectrum Disorders (ASD) and their families in Canada.

The Chair is funded by the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, NeuroDevNet and the Sinneave Family Foundation. Additional support is provided by York University.

For more information, visit the Chair in Autism Spectrum Disorders Treatment and Care Research website at