Getting Ready for the Hospital

Many people who have catatonic symptoms need to go to the hospital for assessment or treatment. Going to the hospital can be hard for autistic people under the best of circumstances. When we are suffering catatonic symptoms, it can be even harder. Many people wait to seek treatment for their catatonia because they are frightened of the ER waiting room or the doctor's office, which can cause shutdowns and meltdowns. But it's important not to wait. There are things that autistic people can do, in order to prepare for a hospital or doctor's office visit, which will help a lot. Here are some suggestions that have helped other autistic people.

1. Some people like to pack a bag or backpack ahead of time, with lots of helpful objects, and bring it to the hospital. The light in ER waiting rooms can be very intense. It's a good idea to bring an eye mask, if you have one. If you don't have an eye mask, think about clothing you could use to shield your eyes, like a cap you could pull down over your eyes, or a hooded sweatshirt that you could wear backwards. Sunglasses are a good idea too. You can even plan to wear these things one on top of the other if you need to. In the same way, ER waiting rooms can be very noisy. You might want to bring earplugs or headphones. As before, you can even plan to layer these things if you like: earplugs under headphones, for example. Some people also like to bring a comfort object like a stuffed animal, favorite image or book, or an object with a particular scent, in order to help them focus and calm down. If you have any safe foods that are easy to carry with you, you might pack those as well, to have as snacks. If you have all these things in a bag, ready to go, it can make the idea of going to the hospital a little less scary.

2. Some people have lanyards with sunflowers on them, or other medical identifiers like bracelets. If you have anything like this, you could put it in your hospital bag, or make sure you are wearing it all the time just in case.

3. Some people prefer to call an ambulance rather than going to the hospital ER. The nice thing about an ambulance is that you can talk to the paramedics, in your own home, and explain your situation, and then sometimes you don't have to wait in the ER waiting room; you are taken right into the hospital. If you are sure that you will not be able to tolerate the ER on your own, you might want to call an ambulance. Some people don't like this approach because the ambulance itself can be very noisy. It's up to you.

4. What if you might have a meltdown? The best thing to do is to prepare and communicate ahead of time. When you get to the hospital, tell someone--like the person behind the desk--that you are autistic. You can also tell them that you sometimes have "violent panic attacks" that are not in your control, and that you are worried you might have such a panic attack while you wait, due to the noise or lights. I recommend the phrase "violent panic attacks," instead of "meltdown," because not everybody understands what an autistic meltdown is.  Below is an image that contains an explanation of meltdowns, which you could save to your phone if you like, in order to show someone at the ER when you arrive. 

5. Some people have also reported that paramedics or doctors misunderstand their symptoms of catatonia, blaming the catatonic person for being uncooperative. This misunderstanding can take place when the autistic person is dealing with strange motor activity that looks like deliberate resistance. It can also happen when the person is experiencing a catatonic symptom called "negativism"--this symptom can make people say "no" or shake their head no, involuntarily. If you are concerned about these kinds of misunderstandings, you could save this image (below) to your phone and then show it to paramedics or to doctors if necessary.