I realized last week that, in raising my autistic children, I failed to teach a set of skills that are crucially important: I failed to teach them how to be a patient in the hospital.
These skills are hard for anyone. But they are particularly hard for autistic adults – especially if those adults were raised in a way that prioritized the needs of neurotypical people over the needs of autistic people, or that emphasized compliance over consent.
Here are the things that I wish I’d taught my children sooner. I’m going to try to make up for lost time now, and make sure they know these things now.
You may need a support person with you
First, hospitals are weird. It’s hard for anyone to manage being hospitalized. There’s a lot going on that you don’t understand, and you’re vulnerable. You may be afraid. You may be in pain, or on pain meds, or both. Fear and pain and pain meds all make it harder to think clearly. They make it harder to understand and answer questions. They make it harder communicate in every possible way.
While that’s true for everyone, I think it’s especially true for autistic people. And it may be even harder for autistic people who have learned how to pass as neurotypical. When you don’t seem stereotypically autistic, the hospital staff aren’t clued in to your needs as an autistic adult.
As a result, you may need to have someone stay in your room with you while you’re hospitalized. Again, this isn’t just something that autistic people need. When I was in the ICU a few years ago, with a massive internal bleed, I was frightened and upset, and I struggled to communicate with the ICU staff. I decided then that I would never be in an ICU again without having a family member or friend staying with me in my room, day and night.
An autistic person may need that level of support for any hospitalization. If you think you might, and if the hospitalization is planned, try to arrange that level of support before you go to the hospital. If you find that you’re coping well, and don’t need someone with you, you can always send your support person home.
A note to churches
Do you set up meal trains and the like for members who have been hospitalized? If you do, consider adding in-hospital support to the list of ways you serve members of your parish and their families. Even if the patient’s family is there most of the time, having someone come by the hospital for a few hours so they can go home, get a shower, and take care of their own needs is a genuine gift to both the patient and their family.
Consider full disclosure
As an autistic person, you have probably learned to be careful about where, how, and to whom you disclose. Telling people that you are autistic can cause unexpected problems.
In the hospital, though, while it’s not impossible that disclosing your autism could cause problems, it’s far more likely to help than to hurt. Especially if you share the ways that your autism affects your sensory perceptions and your ability to communicate. If the nurses and aides don’t have that information, they could misinterpret your behavior in various ways.
For example, if you respond very slowly to questions, they may think that means you are in severe pain. If you find light touch painful, they may think that your unusual responses to caregiving tasks means that you are seeking more pain meds than you really need. Telling the medical staff about your autism will make it easier for them to provide appropriate care, and to make you feel as comfortable as possible.
Make disclosure easy
Even under the best of circumstances, it can be hard to explain your autism to people. And the hospital isn’t the best of circumstances. Fear, pain, and medication will make it even harder to explain what you need and why you need it.
To make it easier, make a short list with the most critical information. If the list is too long and complicated, it might not get read. So keep it short and simple.
For example, your list might look something like this:
- I am autistic.
- I do not have an intellectual disability. I understand my medical condition. Please offer me detailed explanations of my care.
- It takes me time to understand questions and formulate an answer. I may need you to repeat questions several times before I completely understand. Please be patient.
- I have prosopagnosia, which means I can’t recognize people’s faces. Please tell me who you are when you come into my room.
- A warm or weighted blanket will reduce my anxiety and make it easier for me to sleep.
- Please tell me before you touch me, and make sure I understand why you need to touch me.
- In addition to autism, I also have issues with my balance and walk with a cane.
Print two copies before you go to the hospital, and laminate them. Tape one on the white board in your room, and tape one on the door. That way, you don’t have to remember who you’ve told what. Your list will help the medical staff understand your needs and support you while you’re hospitalized.
Balancing comfort, courtesy, compliance, and consent
As an autistic person, you’ve probably been taught that other people’s comfort is more important than your own. You’ve learned social skills intended to make other people more comfortable around you. Things like, don’t stim, make eye contact, that sort of thing.
You’ve also likely been taught that courtesy requires you to avoid making demands on others, and it may require you to do things that aren’t particularly comfortable for you. For example, if you’re served food that will make you choke or gag, you may have learned how to rearrange it on your plate and pretend to eat it, rather than asking for your preferred foods.
You may have also learned that you are expected to comply with the demands of people in authority, whether those demands make sense or not. And you may have been taught that people in authority can do things to you, and make you do things, and your consent is not required.
None of those things you’ve been taught are particularly helpful while you’re in the hospital.
Your comfort matters while you’re in the hospital
First, you’re going to heal better and recover faster if you’re comfortable. So, in the hospital, your comfort is more important than the comfort of the medical staff. It is perfectly acceptable to stim, vocalize, have the lights in your room dimmed or turned off, change out of a scratchy hospital gown into something softer – whatever it takes.
Of course, because you’re in the hospital, a lot of things may happen that will challenge your comfort. The nurse may ask you to hold completely still while they apply a dressing. You’ll need to stop stimming while they do that. Or a phlebotomist may need to turn on bright lights for a few minutes, to find a vein to draw blood. But once they’ve done what they need to do, they should dim the lights again for you.
But the challenges to your comfort will extend beyond the medical stuff, and you need to be prepared to deal with them.
Noise, noise, noise, noise, noise!
Hospitals are noisy. If you’re in a shared room, for example, your roommate might snore, or turn their television up loud, or have visitors with shrill voices. There may be equipment in your room that beeps and buzzes. You’ll hear voices in the hallway, running water, and all sorts of other things. Ear plugs or noise-cancelling headphones will help. You may want to use both.
Bring a tablet or other device loaded with your favorite movies, shows, and music. That will help mask the noise, and having something familiar may help soothe your anxiety. Use ear buds or headphones. Be sure to bring long charging cables for your devices, because the available plug-in might be behind the bed. And bring a couple of wall plugs with multiple USB ports.
Boredom, anxiety, and fidgets
Given how much happens to you at the hospital, you may not expect to be bored. But if you’re there very long at all, you will be. Boredom tends to make anxiety and worry worse, and anxiety and worry make pain worse. So it’s really important to minimize boredom.
Your movies and music will help you deal with the boredom. If you like to read, bring a book or two. But pain and medication both can make it hard to read, and hard to focus on complex plots. So have some simple back-up activities.
Summer Kinard, who is an autistic adult with autistic children, recommends that you bring your own disposable fidgets. You won’t want to take hospital germs home with you. She recommends Aroma Putty, a scented gluten-free Silly Putty that is available online from the Crayola website or in some Target stores. “It comes in 12 soothing or invigorating scents,” Summer says. “It’s my favorite travel fidget, and at less than $5/container, it’s not going to be devastating to toss at the end of the stay.”
Some people find crayons, coloring pencils, coloring books, and modeling clay helpful. Or small jigsaw puzzles. Set them aside if pain or medication make it hard for you to focus your eyes. Just use them if they’re pleasant and relaxing.
Some hospitals can bring a rocking chair to your room. If you think it would make you more comfortable, ask for one. You can also ask for warm blankets. These will be light-weight blankets that have been stored in a warming box. Some people find them almost as good as a weighted blanket for soothing anxiety and falling asleep.
When uncomfortable can’t be helped
There may be occasions when the hospital staff need to do something that causes you discomfort. For example, they may have to take your blood pressure or draw blood for a blood test. If they need to draw blood, they’ll need to have the lights bright enough to find your veins. You can ask them to explain what they are going to do and why they need to do it. And you can tell them what they can do to make it easier for you to tolerate. They might not be able to make a blood draw painless, but they can make it easier, if you let them know what you need.
And for those horrible middle of the night blood draws and blood pressure checks, you can ask them to let your support person talk to or touch you first, to give you a little warning. For some people, that can really help.
Courtesy is different in the hospital
Okay, saying please and thank you is the same. And avoiding name-calling. Just being a decent human being. But in the hospital, the most important thing is your healing and recovery. So there are many social rules that simply don’t apply.
The call button
You were probably taught, somewhere along the way, not to be too demanding of other people. So when you see that call button they give you, to call a nurse, you might not know when it’s okay to use it. Can you call the nurse to get more water? An extra blanket? To turn off the lights? To bring you pain medication?
Yes, yes, yes, and yes. You can push that call button to get anything you need to be more comfortable. That’s not being demanding or rude. That’s what the call button is there for.
There are different kinds of call button systems, but with any of them, the nursing staff is notified that you need assistance. A light may light up outside your room, or someone’s pager may go off. Whatever it is, that lets the nurses and aides know you need help.
They’ll respond either by walking into your room and asking what you need, or by talking to you through the call button device. Most of the time, in most hospitals, they’ll respond in 4 minutes or less.
What if you push it and nobody responds? If it’s urgent, wait about 5 minutes, then push it again. If you need an extra blanket or a glass of water, give it ten or fifteen minutes before you push it again.
Your support person can help you decide whether something is urgent or not. And if the nursing staff don’t respond in an appropriate amount of time, you can send your support person to the nurses’ station and have them ask for help in person.
It’s okay to complain
You’ve probably been taught that it’s rude to complain. But in the hospital, if you are in pain, nauseated, hungry, thirsty, anxious, worried, or uncomfortable in any way, you should complain. In this setting, it doesn’t count as complaining. It’s providing important information to the hospital staff so they can take better care of you.
That doesn’t mean you should monologue about the issue. But definitely tell someone. Use the call button, or just tell the nurse the next time they check with you.
You need to eat well to recover and heal. If your diet is limited to a few preferred foods, or if there are textures or flavors you just can’t tolerate, you’ve probably learned strategies for not drawing attention to that fact. And you have probably learned not to ask for special foods when other people are serving you.
In the hospital, though, you should absolutely draw attention to your food preferences, and ask you should for special foods or replacement foods if you need them.
For example, let’s say that you order scrambled eggs and buttered toast for breakfast. And when it arrives in your room, the eggs are too wet, or the toast is too brown, and they’re going to make you gag. It is perfectly all right to order a replacement breakfast. You can either tell the folks in food service how you like your eggs and toast, or you can order something completely different. But you must have food to heal and recover. So this is not the time to push the food around on your plate and pretend to eat. Ask for food that works for you.
If you’re an Orthodox Christian and you keep the traditional fasts, or if you have other religious dietary obligations, foods that work for you include foods that meet your religious needs. Try to talk to your priest or your spiritual advisor about fasting before you go to the hospital. Typically, an Orthodox priest will tell you to eat according to your medical needs, but this may vary. You can explain your fasting rules to the nursing staff, and ask their help figuring out what the hospital can provide that you are willing to eat and that allows you to meet your medical needs and your religious duties as best you can.
Cleaning up after yourself
While you’re in the hospital, you’re not expected to clean up after yourself. Food services staff will bring you trays of food, and take them away. If you spill something, use the call button to ask someone to come clean it up. That’s not imposing on the staff. It’s their job. And it makes things safer for both you and them.
The same goes for urine, feces, vomit, and blood. If you need them to help you get to the toilet, or get a bedpan, or a basin for vomit, press the call button and let them know what you need. Be specific. In other settings, you’d use euphemisms for bodily functions. In the hospital, it’s okay to say, “I need help. I’m about to pee all over myself.”
If help doesn’t arrive fast enough, press the call button again and let them know what happened, and that you need help getting cleaned up. They have the supplies and the skills to get you and the room clean and fresh.
If you’re in the hospital more than a couple of days, and you aren’t allowed to shower, you can ask them for a bed bath. Most of the time, this comes in the form of a packet of thick, soft disposable wipes that the nurses warm in the microwave and deliver to you. You can wipe your body off with the wipes. It’s not as good as a shower, but it’s not bad. If, because of needles and incisions and such, you can’t reach the areas you need to wipe, you can ask the nurse to help.
Compliance and consent
Many autistic people are taught when they’re young that they must comply with the demands of people in authority, and that they don’t have the right to withhold consent. That’s not true. Not even in the hospital. But you might feel like it’s true, and that may make the hospitalization difficult for you.
It’s important that you understand what the medical staff are doing to you, and why they’re doing it. If you don’t understand what they want to do or why, you can ask them to explain again. If you still don’t get it, get someone else to join the conversation. You can ask your support person to do that. And if you don’t have a support person with you, you can ask for a hospital social worker to come help you understand.
If you understand, and you don’t want the treatment they want to provide, you can say no. You don’t have to accept medical care that you don’t want. You don’t have to comply. You get to decide whether or not you consent.
Compliance goes both ways
Of course, if you’re in the hospital, you probably want the care you’re getting. If you understand what the medical people want to do, or what they want you to do, and if you trust them, you should comply with their instructions.
But that doesn’t mean you just do what you’re told. You can tell the medical staff that a procedure frightens you, or that it hurts, or that it’s difficult for you to comply. Tell them what would make it easier. They should work with you to deal with the fear or pain, and to make the procedure as easy as possible.
You can also ask the medical staff to do a procedure in a different way. For example, if having the blood pressure cuff on your arm freaks you out, you can ask them to take your blood pressure on your leg. If you’re like me, and you’re hard to draw blood from, you can ask them to use a butterfly instead of a regular needle. If it’s possible to do so, they should comply with your request.
And if you decide you don’t trust a particular medical person to do a procedure, you can ask for someone else. For example, if a nurse or technician tries to draw blood, and it doesn’t work on the first try, take a few breaths and let them try a second time. If the second attempt doesn’t work, you don’t have to let that person try a third time. Just tell them that you want someone else to do it. That’s what I do. And it’s okay to do that.
Hospital schedules are unpredictable
A predictable schedule is incredibly important to most autistic people. Alana Sheldahl explains that it was so important to her autistic husband that, when he was in the hospital, “he needed to be able to keep doing his thing, which meant logging in to work as soon as he woke up from brain surgery.”
Your schedule is familiar, so it makes all the unfamiliar things at the hospital less daunting. It provides a routine, which allows you to organize your time and your thoughts. And, most important, especially in the hospital, it provides you with a sense of control.
Unfortunately, you can expect your schedule in the hospital to be unpredictable. If you’re told that something will happen at a particular time, you need to understand that the time they tell you is not an actual appointment. You can’t plan on it.
For example, if they tell you the physical therapist will come by at 2, that doesn’t mean that you’ll see them at 2. It probably means something more like, they usually see two patients an hour, and you’re the third patient they’ll see after lunch. But if one of those patients ends up leaving the floor for an emergency procedure, you might see the physical therapist at 1:30. Or if one of the earlier patients has a lot of questions, or needs extra time, you might not see the physical therapist until 3.
Hospital schedules are also complicated
You might end up expecting two things to happen at the same time. For example, maybe you’re expecting your doctor to come after lunch, and your your physical therapist shows up at 1:30, and you haven’t seen your doctor yet. That might make you anxious or worried. But, really, it’s okay. You’re not going to miss your doctor. If you’re worried about it, ask the physical therapist to let your nurse know where you are, so the doctor can find you if she shows up while you’re getting physical therapy.
And sometimes totally unexpected things happen. Maybe you have a standard online gaming session with some friends on Thursday afternoons. You’ve got your laptop at the hospital, and you’re looking forward to the fun (and the distraction). But then, right in the middle of the game, someone shows up to take you to the Imaging department for an MRI. You didn’t know that they were coming at all, much less that they were coming during the middle of your game. You can ask if they can come back for you later, but they probably can’t. They have to make sure everyone gets taken care of, and that usually means sticking to their schedule, not yours.
And hospital schedules can be unpleasant
Besides being unpredictable, your schedule in the hospital might be unpleasant in other ways.
For example, the hospital might bring breakfast between 7:30 and 9. If you normally have your breakfast at dawn, you’re likely to want it earlier. If you don’t usually wake up before 10, you might not be able to face food at 7:30 in the morning.
You might have people coming into your room at 3 in the morning to give you medicine or draw blood, when you’d much rather be left alone to sleep.
You can ask your nurses if they can adjust schedules to suit you better. But usually, either because of your medical needs, or because of the way the hospital systems are set up, they just can’t.
That’s why it’s good for you to get out of the hospital and go home as soon as you reasonably can.
Credit where it’s due
I shared an early draft of this post with a small group of friends who are parents of autistic people. The group included Alana Sheldahl, whose late husband and young adult children are autistic, along with another mother of adult autistics who chose to contribute anonymously. It also included Summer Kinard, who is herself autistic, and who has young children who are also autistic. Her upcoming book, Of Such Is the Kingdom: A Practical Theology of Disability, will be available in October.
Disability and special needs: People with disabilities often don’t feel welcome, or even safe, in our parishes. But we can change that, with knowledge and understanding.
Growing up later: Autistic people in their twenteens: In this guest post, Alana Sheldahl talks about the uncharted waters of young adulthood with autism.
9 steps to an autism-accessible home library: Summer Kinard developed an autism-accessible home library to enable her children to enjoy books without destroying them. In this guest post, she explains how.