Canadians routinely complain about the long wait times at hospital emergency rooms across the country. As well, health policy experts have flagged the high costs associated with emergency services and the impact these have on the finances of our publicly funded health system.
What is often lost in these discussions is the fact that there are ways we could reduce emergency room and hospital use by providing better health and community services upstream to specific groups who need them most. One such group, our recent research uncovered, is adolescents and adults with autism.
Our study, recently published in the BMJ Open and in the Journal of Autism and Developmental Disorders, followed 284 families with an adolescent or adult with autism, for 12 to 18 months. We checked in with the families regularly to see whether they used emergency services during that period, focusing on police and hospital emergency departments. The results were staggering.
The strongest predictor of emergency department use over the course of our study was whether the individual had had at least one emergency visit in the prior year. This was the case for both medical and psychiatric emergencies. The risk of an emergency was also heightened for families who had had significant stressors or life events in the previous months and were experiencing high levels of distress at the outset of the study. In other words, there was a certain predictability as to who might use emergency services, well before they sought them out.
The study is a reminder, as other studies have pointed out, that health and social supports for adolescents and adults with autism are often inadequate across the country and are not meeting the needs of families. As a result, families with a member(s) with autism too often confront crisis.
What could we offer these families before a crisis occurs? And what would happen if we invested resources in every family after their first emergency? Could repeat visits be prevented, or at least planned for?
Federal and provincial ministries of health, education and social services would do well to improve the provision of proactive supports to this all-too-often neglected population. At present, services for autism across the country are for the most part fragmented and crisis-driven.
Our study also flagged a lack of training in how to deal with autism by emergency service providers. When adolescents and adults needed emergency services, their experiences were not always positive — which likely means outcomes were not always optimal. Long wait times in the emergency department, a lack of helpful outcomes, and inappropriate physical or medication-based restraints were among the many negative experiences that parents in our study reported.
We can do more to best serve people on the autism spectrum when emergencies occur. To help individualize services, training needs to focus on improving our understanding and acceptance of autism rather than on crisis events.
If police and emergency personnel are to keep everyone safe, we must make sure that individuals with autism and other disabilities, along with their families, are comfortable with emergency services and are confident that responders understand and are sensitive to their unique situations.
Some of the best solutions come from partnerships with individuals and families affected by autism. There’s a firefighter in PEI with autism who is training her colleagues to search for and support kids with autism in crisis. Toronto’s chief of police says he has learned a lot about autism from his son, who has the condition.
In some places in Canada, there are Vulnerable Persons Registries that police can consult. There are also communication tools designed to help make the interaction between families and providers as informed as possible; for example, “Crisis Cards,” “About Me” forms and “Hospital Passports.” It is unfortunate that many service providers and families do not know such resources even exist.
At the grassroots level, families need individualized supports that match the needs of their loved ones. There is no one-size-fits-all approach. At the national level, stakeholders have called for a national autism framework to generate, collect and promote evidence-based solutions to address these complex problems.
It’s time for us to invest as a community in educating patients, families and emergency service providers and to improve emergency outcomes for those with autism. Better yet, let’s get families affected by autism the social and health supports they need to avert many of these crises in the first place.
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