If you’ve ever cared for an autistic patient, I suspect you have seen that there are stress points for you, the patient, the family, staff… everyone involved. A medical facility, especially a hospital or emergency department, is an extremely challenging environment for someone with autism. As medical providers, we have little to no training in this and usually the best we do is try and get through it. Surely there must be a better way of caring for autistic patients than what most of us do which is, let’s be honest, figuratively hold our breath and wait for it to be over.
Our guest today is Dr Heidi James. Heidi is a general practitioner working in Moncton, New Brunswick, Canada. She wears a lot of different hats in her career: office practice, inpatient care, and medical education. But the focus of this conversation is her experience raising an autistic child, her son Jonas, specifically when Jonas the medical system meet.
Heidi James’ 7 insights on caring for autistic (or non-verbal developmentally delayed) patients in the emergency department
We don’t want to be in your department
- We’re only here because we’ve run out of options or ideas.
- We will pay for this disruption in routine and upheaval for days to come in increased disruptive behaviours, bad sleep, and eating habits.
- We don’t necessarily know what’s going on, but we know that something is going on. We’re here because we’re desperate.
Behavior is communication
- Behavior if very often an attempt to communicate (and it may work well in their usual environment; i.e. banging your head against the wall to let your caregivers know you need to have a bowel movement)
- Communication: find out from caregiver how they communicate: Signs? Assisted communication devices? Picture exchange communication systems? Wing and a prayer?
- Receptive language is often better than expressive language.
Family or caregivers who know the patient are your allies
- We’re intimately attuned to subtle changes in behaviour, know the medical history, and can make a suggestion for how to minimize disruptive behaviors.
- We’re tired. Really tired. We’re scared.
- More than a few of us have huge chips on our shoulders. It takes a ton of effort to be positive and pleasant when you spend hours a day cleaning up poop and years not sleeping. Remaining a non-bitter, decent human being takes hard, deliberate work. Please be patient if we direct that anger/frustration at you
Quiet and secure is best
- Noises, lights, new faces, temperature changes, strong emotions, new smells – any one of these, let alone all of the them, can overwhelm the nonverbal patient with sensory issues. The ED is a sensory nightmare.
- It’s next to impossible in busy ER, but whatever accommodation can be made, try to place the patient in a quiet and secure spot.
- The better the first experience, the easier any subsequent ones will be.
- Calm voices when possible. Ask family member how to best approach pt.
- Many non-verbal patients are runners or elopers. Please don’t lose them. Restraints and sedation are better than finding someone on the highway.
Don’t assume quality of life
- I was in the ED doing an admission just after a man with severe autism coded. My colleague/friend wanted to talk about it. She said, “It’s probably for the best, he had no quality of life”. I almost burst into tears. While I know that that’s part of the working through bad outcomes scenario, all I could think was “My son watches the same episode of Dora everyday, eats dog poop, sleeps 3-4 hours per night and is the freaking happiest person I know. He has an amazing quality of life by his standards, but a shitty one by other people’s standards.”
- Keep these thoughts to yourself
- We dedicate our lives to these people. They matter. Deeply. You invalidate us as well with those comments.
It’s really hard for you
- It is challenging to care for these patients in your department. They can’t communicate.
- Often it’s the adult in crisis, and there’s no family left anymore.
- These pts are scary when they’re agitated
- You have to rely on tests and often poor collateral history
- It’s can seem like veterinary medicine-there will be no verbal cues to help you.
- Remembering that these patients are, or hopefully were at some point, deeply loved might help you help them.
- Have a low threshold for using ketamine to do procedures or perform diagnostic studies.
- Before sedating, ask the caregivers if there are any other tests that need to be done (such as blood tests)
- Remember to find out it if your patient with autism can/will take meds orally. Some won’t swallow pills and need suspension. Other won’t take pills or suspensions