I’m autistic and also have a mental illness. I’ve had to go emergency rooms in hospitals a number of times. The experience has always been traumatic and unhelpful. I’ve experienced a lot of paternalism, been treated as if I’m a naughty child and invalidated in many other ways.
In some cases, these experiences have resulted in me avoiding seeking treatment for mental and physical health complaints, which in fact did require urgent treatment.
Autistic people — both patients and visitors — will be anxious and scared in the emergency room. Sometimes autistic people will be unable to speak or clearly express what they’re experiencing.
Here are 10 things that could help ER staffers to assist autistic patients, visitors and support people:
1. Don’t assume autistic patients and visitors are being deliberately difficult. Autistic communication tends to be different from non-autistic communication, which can lead to misunderstandings, even when the autistic person isn’t in a highly stressful situation like accessing emergency health care. If we seem difficult, please do not assume we mean to be.
2. After their medical status is confirmed as not requiring immediate emergency intervention, ask the autistic person what they need, what they think would help and how you can assist. If their requests can’t be accommodated, explain this to them and the reasons why. Some people may prefer to communicate via typing or facilitated communicate device, rather than verbal communication. If this is the case, find a way to accommodate their needs.
3. For autistic people, emotional, sensory and/or information overload can lead to a meltdown. The ER is often an overwhelming place. It has people coming and going, often with visible injuries, odd smells, glaring lights and confusing information. Being unwell enough to be present at the ER and having a meltdown is unpleasant for the autistic person and possibly other people in the ER who might be frightened.
The overload which leads to a meltdown can be addressed by decreasing the stimuli causing it. Often this can involve simple measures like explaining what’s going on as well as you can and providing a quiet space.
If someone does have a meltdown, trying to intervene will almost certainly exacerbate it. Leave the person alone. If you have to say something, stand back from the person and offer supportive, calm comments. Do not try to physically restrain the person or tell them off for their “poor behavior.” A meltdown is not poor behavior or a way to seek attention — it’s a response to overload.
4. Waiting for an indeterminate amount of time is stressful to almost all autistic people and any relatives with them. If an autistic person asks you how long they will wait for treatment or to be taken to a bed in the ward once the decision to admit the patient is made, they aren’t being difficult or pushy, they’re just anxious because they want to understand how long they will be there for.
Respond as accurately as you can. Even a little bit of information such as, “We are quite busy tonight, so it may be a few hours,” is more helpful than no information. This information is also useful to relatives waiting with the patient. They may choose to get some food or go home and sleep if it’ll be a long wait.
5. Some autistic people don’t have family, a partner or friend to support them and may attend the ER alone. Consider what they may be going through: They’re unwell enough to seek help in a hospital, which is probably not a place they would choose to attend otherwise. They’re in a situation that can be triggering, unfamiliar and scary. A staff member periodically coming up and asking them briefly if they’re OK or offering a hot drink can make a huge difference. This doesn’t need to be time consuming,
6. Many autistic people experience sensory issues and overload. Bright lights may be overwhelming, and unfamiliar smells, medical equipment making unexpected noises and undergoing uncomfortable medical procedures administered by strangers can be quite traumatic. Consider making some of the waiting room space and beds on the ward sensory friendly. This doesn’t need to be onerous and can simply involve using incandescent lighting in an area of the waiting room, screening off an area and providing fidget or sensory toys.
7. Medical staff should explain as clearly as possible to autistic patients what is happening. If possible, provide the likely duration for results of medical tests being returned. It’s OK to qualify these statements by saying the time may vary, but having some kind of ballpark timeframe and reason for medical tests and procedures can reduce anxiety.
8. Autistic family and friends may be highly anxious about the person they’re supporting. Some practical measures to assist autistic friends and family of patients are quiet areas in the waiting room, somewhere to buy food since many autistic people are sensitive to being hungry, which can trigger stress or meltdowns, being given approximate waiting times and being told what’s happening as much as possible.
9. It may help to develop a tip sheet to provide to autistic patients and visitors, which includes information on the triage process, how to access assistance if overloaded, what the expected behaviors are in the ER, where to access Wi-Fi or charging points for devices and where to go to provide feedback or complaints. Staff training around autism can also be very helpful.
10. Consider having a supply of cheap items to reduce sensory overload available in the ER for patients and support people who need them: ear plugs, sleep masks (especially for those in ER overnight) and a small number of fidget toys.
Read a related story about a helpful phone app for people who can’t speak during an emergency.
With sincere thanks to Penny Robinson for her contributions to this article.
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