|Photo © ILO | Flickr/Creative Commons|
[image: Doctor giving a heart exam to a patient on a
hospital bed. Both people are East Asian.]
Why I am Writing This
I am a professional disability advocate in my mid thirties. I am also autistic and have various learning disabilities/mental health diagnoses. I have always been very lucky in that I live in Massachusetts and so have been able to access healthcare despite the fact that I am very low income.
I was a personal care aide for many years and due to this I developed back problems. In the spring of 2016, they became significantly worse. I tried many, many therapies and medications, including alternative ones. I was eventually diagnosed with an extruded disc and had surgery in January, 2017.
Although my surgery was supposed to be a routine day surgery, and all of my health care practitioners knew about my unique neurology in advance, it quickly turned into something much worse. I reacted very violently to the anesthesia and did not react to any opioid painkillers except by having allergic reactions. I ended up having two ambulance rides, two Emergency Room (ER, in the UK they are called A&E, or Accident and Emergency) visits and an overnight hospital stay over the course of 72 hours. None of this was pleasant and I would even say it was hellish at the time, except that I also ran a 103 degree Fahrenheit (39.44 Celsius) fever for unknown reasons and hallucinated for at least part of this time.
I would like to make clear that I am very grateful for the care that I received at the hospital and I understand that the doctors and medical personnel were acting in my best interest while also running a busy city ER. However, as an advocate, I would also like to ensure that what happened to me never
happens to another autistic person.
The majority of material that I have been able to find online relating to healthcare and ER visits by autistic people assumes that 1, it is a mental health crisis and 2, that they are not their own guardians. It is also rarely written by an actual autistic person.
I am writing this so that when my neuro-divergent friends and I break our ankles, wrench our backs, cut the end of our fingers off, have an asthma attack or a seizure, we can know that we are being seen by people who care and who understand our unique neurology.
Autistic people come to the ER for the same reasons as any other patients—they are sick and they need immediate assistance.
Autism is a neuro developmental disorder which manifests itself primarily in communication difficulties, sensory processing problems, and executive functioning deficits. The majority of autistic people do not have any intellectual disability, however, even highly-educated, professional people may lose their ability to speak or communicate clearly when they are in distress.
Because ERs are strange, confusing, hellish places, autistic people who have more challenges in communication may lash out and become violent when brought to the ER. They may not understand why they are there, and some may need more time, and/or more intensive supports, for procedures such as drawing blood or cleaning a wound. It is very likely that such people will come to the ER with family or staff members, because they are not their own guardians or medical decision-makers. Take your lead from them, and their caregivers, in how best to deal with behavior that complicates their medical treatment.
However, just because it seems that an autistic person does not understand something does not mean they don’t understand it. Never assume anything about an autistic person, except that they are doing the best they can in circumstances beyond their control. Some autistic people may be unable to stop their bodies from behaving in agitated, unpredictable ways, even though their minds are telling them to stop. Some people who use communication devices may lose their ability to do so in a crisis because their bodies are so overwhelmed. There is often a disconnect between an autistic person’s body and mind.
How to Best Communicate with Autistic People and Treat Them
Three helpful terms to know:
- Echolalia, when someone echoes something you or someone else has said.
- Stimming, which is strong emotions manifesting themselves as physically repetitive movements. (It is actually more common when someone is happy, but you’re not likely to see that in the hospital.)
- Scripting, which is quoting from a media source, such as a television show, to express themselves when they cannot access the words they need.
Additional advice for supporting autistic patients:
- Speak directly to the person, even if they have a helper or family member with them
- Do not ask, ‘how are you?’ This is the most absurd question of all time because if someone is in the hospital it is because they are not well. As is, ‘what’s wrong?’ because what’s wrong is that they’re sick/in pain, and you’re being stupid for not seeing that. Instead, ask concrete questions, like ‘What hurts?’ ‘Why did you come to the ER instead of waiting for your PCP/the clinic to open?’ ‘Are you having trouble breathing?’ ‘Do you feel like you are going to throw up?’
- Speak slowly, in clear sentences, and give the person plenty of time to respond
- Do not expect eye contact
- Exude calmness. Autistic people can and will pick up and echo back to you your bad mood or panic.
- Even if you’re a busy ER doctor at a city hospital, try and reassure the person that it is okay that they came in.
- Do not expect them to understand the smiley-face-sad-face pain chart. That chart makes no sense. Instead, ask on a numbered system.
- Ask questions multiple times, in multiple ways. Often autistic people will simply echo what is most recently said. If you ask, ‘Does your ear or your throat hurt?’ they may reply, ‘Your throat hurt’ when what they mean to say is that their nose hurts. Similarly, if you say, ‘is this happening, yes or no’ they might say ‘or no’ because finding words to communicate with is hard and it’s much easier to just echo what was said.
- Try not to use metaphors when talking. Be very literal, and expect the autistic person to be equally literal. (However, plenty of autistic people are capable of being sarcastic and witty with a very dark sense of humor, it is just not likely to show up in a place like the ER because they are under so much stress. You may be lucky enough to experience their wit should there be a good outcome in the ER or if you see the person for a follow-up visit.)
- Don’t attempt to use dolls or other apparatus. Autistic people are not small children. They know perfectly well that the doll is not in pain and may wonder why you are asking them to point to where it hurts on the doll. The doll is plastic. Who are you to work in a hospital if you think a doll can feel pain?
- Autistic people can have a very low tolerance for what they perceive as ignorance. I honestly thought that the nurses were forgetful and dumb when they kept asking me my name and birthday. Wasn’t it right there on their chart? Explain why you need to check.
- Explain exactly what you are doing before you are doing it, and why, and what sensations they might experience. Be aware that due to sensory processing problems, what you experience as a tiny prick might feel to them like they are being impaled on a sword, and what might be very painful to you they might not notice at all.
- Pronouns can easily be lost in a crisis. If the autistic person is speaking in the third person or referring to themselves as "you," simply try to adjust and follow their language accordingly, or look to their caregiver for support.
- If you touch a body part, then ask ‘does this hurt when I touch it’, autistic people will say no, since you stopped touching that part. It doesn’t hurt at all when you touch the air! Instead, place your hand, preferably firmly, on the body part that you are talking about and ask, ‘does this hurt now.’
- Do not discourage stimming as it is a coping mechanism, unless they are physically hurting themselves or others
- If a person is scripting ask their caregiver to try and figure out where the script is coming from and what it means. For example, they might be quoting a favorite character who is in a lot of pain to indicate that they themselves are in pain, or echoing a character who is fed up with things to say that they are fed up and want to go home.
- Offer as many choices as possible, because choices make people feel empowered. Should the IV line go in the right arm or the left? Take the temperature in the ear or the mouth? Have the room dark or have the lights on? Put the hospital bracelet on or just hold it?
- Don’t attempt to whisper or keep any secrets within 100 feet of an autistic person. Many of us have extraordinarily good hearing and can understand you perfectly well when you huddle with another doctor in the hall. If you need to meet with the family or another doctor without the autistic person present, then go down the hall, into another room, and close the door. If at all possible, however, hold your conference with the autistic person there. We would like to know why you are making the decisions you do, because we crave logic and reasoning in all things
- Similarly, don’t be surprised if your autistic patient rattles off the medical history of the person in the room next to them or asks about something you were talking about at the nurses station. We don’t eavesdrop on purpose, we just hear everything. (Which is why private rooms are great, because then we also don’t have to listen to other people vomiting and babies crying.)
- Offer a whiteboard or notebook/pen to communicate more easily.
- If you have time, and the person is not in extreme distress, ask about the autistic person’s special interest or what they are passionate about. This is an easy way to get the person at ease with you. Show as much enthusiasm for the topic as you can genuinely muster. If you do not like trains, there is something wrong with you (sarcasm), so just like trains already.
Things to Remember about Autistic Patients
- If an autistic person is biting themselves, hitting themselves, or other serious self-injurious behavior, it means one thing: they are in pain. As lashing out at others is not acceptable, autistic people often turn their behaviors inward and hurt themselves. Your immediate job, above all else, is to relieve that pain.
- If you are drawing blood/doing tests that are painful on someone who self injures it may be very confusing to them since they know that they are not supposed to draw blood yet here you are doing it. Explain exactly why you are doing it and why your medical credentials make it okay.
- Autistic people OFTEN react oddly to many medications. If a side effect occurs in .03% of a population the autistic patient is more likely to get it than other patients, so be very aware of the possibility of atypical and paradoxical medication reactions.
- Autistic people may ask the same question over and over again. This is a form of scripting and is done not because they do not know the answer, but because it is comforting to know that some things remain true or untrue and is a way to calm themselves down. For example, due to my body shaking, at some point during one of my ER visits/ambulance rides I became convinced that I was on a boat. I was told that I was not, but I still wanted to get off the boat. Intellectually, I knew that I was not on a boat, but having people reassure me, over and over, that I was not on a boat was calming because it indicated that it was my body causing my mind so much anguish and confusion. (Incidentally, I hated boats to begin with and I am never getting on a boat again.)
- Many autistic adults have had social skills training when they were younger, which is often heavily focused on compliance, not complaining, and accepting the fact that the world does not make sense. Therefore they may honestly not understand that it is okay to ask for something that they need or for something to be clarified. They will follow the social rules they have been taught without breaking them, not necessarily processing that you can break social rules in a hospital setting. (For example, it is okay to swear if you are in enormous pain.)
- Many, if not most, autistic adults are on some sort of psychiatric medication to begin with, as well as supplements. Please ensure that there are no drug interactions.
- Autistic people often have food or drug allergies.
- High fevers have weird effects on autistic people, for some reason they often take away many autistic traits and make them extremely chatty and sociable.
- Autistic peoples faces and bodies often do NOT reflect the amount of pain they are feeling. Many autistic people are over/under sensitive to pain, or both. They may honestly not notice that their arm is bleeding heavily but feel like you’re biting them when you check their pulse.
- Due to sensory processing differences, many autistics are very food averse to the majority of foods. Allow caregivers to provide things that the person will eat. Do not force them to eat/drink anything. They are more likely to know their bodies and what they can handle. Often it might be easier to just give them saline/rehydration fluids then try and force them to eat.
- Oxygen masks/face clips can feel like torture, like spikes digging into your skin. Try instead to just hold the oxygen mask near the person’s face.
- Many, if not most, autistic people have experienced some sort of trauma and abuse in their lives. Up to 90% of adult women with developmental disabilities will be sexually assaulted at some point in their lives. Never conduct a patient examination with only the patient present. If you need to perform an examination of a woman’s private parts, ideally have it done by a woman doctor, if not, have a woman nurse or aide in the room.
- Due to fine motor skills problems, it may not be reasonable to obtain a urine sample in a cup. In this case, just use one of the bowl things.
- Autistic people are often face blind, meaning that they may not recognize you even if you’ve previously introduced yourself. Solve this easily by wearing your name tag prominently and reminding them who you are when you enter the room.
- ERs are absolute hell for autistic people. They would not be there unless they truly needed to be. The sensory environment is beyond awful. They can often hear every beep and every monitor going off in the whole place. They often have a tremendous amount of empathy and can get physical pain from a crying child or vomiting adult in the next room. They can smell everything, including that leftover chicken masala you ate at two am, pkus the water that you offer doesn’t taste at all like the water at home.
Autistic Protocols for The ER
- Up to 40% of autistic people have epilepsy. Seizure protocols should be put in place if there is the slightest chance of a seizure. It is very hard to detect an absence seizure in a person who doesn’t speak verbally, but close caregivers can tell you when they happen.
- Private room if at all possible
- Be as minimally invasive in testing and examination as possible
- Tell them as much information as possible. Autistic people thrive on information, routine, stability. The ER lacks all of these things. However, do not be afraid to use scientific terms, as long as you explain what they mean. Don’t ‘dumb down’ your language just because the person has a disability. People with intellectual and developmental disabilities deserve to know exactly what is going on in their bodies and what the plan of treatment is as much as anyone else. Do check for understanding more often, and if the person simply repeats what you say like a parrot, it may mean that’s echolalia and they have no idea what you said. Explain it again in a different way.
- Hospital gowns are awful. They are impossible to keep on, are cold, smell terrible, and for people who don’t wear dresses or skirts regularly, hard to move in at all. If at all possible, let the person remain in their regular clothes, and just lift up or lower their clothing as needed to get access to it. If they will be in the hospital overnight, get someone to bring them some of their regular pajamas.
- Actually write the information on the white board
- Explain calmly, with a minimal of jargon, exactly what is going on and what the plan of treatment is.
- Follow communication tips above.
- Turn off fluorescent lights if possible, and quiet alarms
- Unless absolutely necessary, do not hook the person up to monitoring equipment. If you do, make it as Comfortable and quiet as possible.
- Tell patients/family, "I will come check on you at X time." Then do it!
- Tell them what to do if they are in enormous pain/need to use the bathroom/need food/coffee
- Offer noise canceling headphones
- Offer blankets
- Offer stim toys/fidgets if you have them
- Offer a weighted blanket
- Offer an eye mask
- Allow the person to have whatever comforts they desire. Many people continue to get great joy and comfort out of things originally meant for children, but unlike their neuro-typical counterparts, autistic people do not give these comforts up as they grow older due to societal pressure. Therefore, they may have stuffed animals, toys or television shows that they love that people might consider childish. Do not judge these things. The smell, feel or sound of a loved object can provide soothing sensory input and diminish pain. Some autistic people are attached to objects like appliances that do not fit society’s parameters of comfort objects. That is okay, too.
- Allow unlimited access to technology, iPads, smartphones, videos, etc. You may observe some people watching the same 30 seconds of a show over and over. Technology is the single greatest thing to ever happen for autistic people, because it enables us to filter our world and get comfort from the same 30-second video clip, during which, over and over, we will know what happens, unlike in the real world, where we can’t predict anything.
- If you must take an object or piece of technology away in order to perform an examination or medical test, place it in a prominent spot and tell them when they will get it back. “Your iPad can’t go with you into the x-ray room, but it will be right here, with mom, for when your x-ray is over.” Make a hospital bracelet for a stuffed animal, doll, car or anything you can put a hospital bracelet on, so that they object will always find its way back to the patient.
- If there is a chaplain in the hospital, and they are not busy, this might be a great person to sit with the person and reassure them/their family/explain what is going on. Many autistic adults are staunch atheists and arguing with a chaplain may get their mind off the pain. However, many are also quite religious and might benefit from praying with someone. (Very, very few autistic adults are agnostic. They’re black-and-white, either-or when it comes to religion.)
- If you have a social worker on call this person may also be of help to advocate for and interact with the autistic person.
- If there is a therapy dog available, and the autistic person likes dogs, this can also be a huge boon (however some autistic people find animals unpredictable, so do not bring in a therapy dog without asking first).
- Encourage the person to use electronic devices/ comfort objects/whatever they need to be more at ease.
Copyright 2019 Kate Ryan; please do not copy or distribute without permission
For more information or to schedule an in-person presentation or talk of the above materials, please
contact me at firstname.lastname@example.org.