Autistics and the Emergency Room

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A study by the Centre for Addiction and Mental Health (CAMH) of 284 teens and adults with autism has found that almost one in four (22.2 per cent) had been to an emergency department at least once in the past year.

The study authors suggest that the rate of emergency department visits could be brought down if there were better supports for people with autism in the at-risk groups and better training of emergency department staff to deal with the complex challenges people with autism present.

"Because the strongest predictor of future emergency visits is previous use, that first visit is an opportunity to put a plan into place," says Dr. Lunsky. "How can families be more prepared before they go to the hospital and how can hospitals be more equipped to support them when they come?"


TORONTO, July 18, 2017 /CNW/ - A study by the Centre for Addiction and Mental Health (CAMH) of 284 teens and adults with autism has found that almost one in four (22.2 per cent) had been to an emergency department at least once in the past year.

"Practically every week I hear about someone on the spectrum who is in crisis and gets involved with emergency services," says lead author Dr. Yona Lunsky, Clinician-Scientist in Adult Neurodevelopment Services and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at CAMH.

The study authors suggest that the rate of emergency department visits could be brought down if there were better supports for people with autism in the at-risk groups and better training of emergency department staff to deal with the complex challenges people with autism present.

"Because the strongest predictor of future emergency visits is previous use, that first visit is an opportunity to put a plan into place," says Dr. Lunsky. "How can families be more prepared before they go to the hospital and how can hospitals be more equipped to support them when they come?"

The study, just published in BMJOpen, found three main predictors of future emergency department visits:

Having had an emergency visit in the year prior to the study period

Elevated family distress at the start of the study period

Two or more negative life events just before the start of the study period

Other variables like age, gender and autism severity did not predict future emergency visits, highlighting the need to consider how to support all teens and adults with autism, and not just certain subgroups.

Some practical steps for patients and their families recommended by Dr. Lunsky include bringing a health information passport detailing the person with autism's medical history and triggers, and having emergency department clinicians conduct an "exit interview" prior to discharge and connecting to community supports for ongoing care.

The 22% ER visiting rate sounds scary but how does that compare with the general population?

Natania Barron and Michael Harrison waited 255 hours in the emergency room before their autistic son Liam, 11, was finally placed in a program that could provide the psychiatric care he needed.

That call came late Monday, Oct. 16, more than a week after their son had a breakdown.

Barron wrote about her experience on a blog post on glittersquid.com, where she is an editor. Liam had what Barron called a “psychotic break,” and the people at this school, Hope Creek Academy in Durham, could not control him. “I will spare details, but the long and short of it was that in his state we feared for his safety and the safety of those around him,” she wrote.

Barron praised the private school for children with special needs, but said the only way she and her husband could get Liam into a program that could help was to go to an emergency room. From Friday, Oct. 6, until Monday, Barron and Harrison took shifts staying with Liam in a room in the emergency ward of UNC Hospitals.

“Unfortunately, it’s not too uncommon,” state Rep. Graig Meyer, D-District 50, said of what Barron and Harrison faced. Their struggle applies not just to autism but “children and adults with acute mental health needs.” North Carolina does not have enough beds for people who need emergency mental health care and “far too frequently they end up being stuck in the emergency room for days and days,” Meyer said.

Barron and Harrison were given a list of 20 hospitals in North Carolina that help children and others in crisis situations, but “it’s a long waiting list” to get in, Barron said.

She and her husband took time off work, and Barron has heard of other parents of children with autism having to quit work because of the long waiting lists.

Other public health agencies agreed with Meyer about the need for more services.

“Behavioral health needs are a growing concern in North Carolina as patients and their families often have no access to community solutions,” Phil Bridges, director of communications for UNC Health Care, wrote in an email. “This can result in large numbers of patients seeking treatment in emergency departments.”

“There are not enough crisis beds for kids or adults,” with autism or other disorders, said David Laxton, director of communications for the Autism Society of North Carolina. “We’re a growing state,” Laxton said. “You add more people, and it just doesn’t meet the demand.”

“How much can you do in 200 hours?” Barron wrote on her blog post. “How long would you last in a polyester smock and hospital food and people prodding you and poking you and asking you the same questions over and over again?... How much longer do we wait for our country to fix this problem? As these kids lose trust in the system, as their families struggle to work and balance, as we wait until something irreparable happens.”