Going to the Hospital

t’s not fun going to the hospital and is especially difficult for autistics. Hear what sensory issues, communication challenges and feeling sick feels like for an autistic person.

Transcript

Going to the Hospital

I was heading to my car after an appointment and suddenly felt dizzy. The kind of dizzy that says “don’t drive.” There was a thumping in my chest. I felt my pulse and when I realized it was 225 I did what anyone like me would do. I convinced myself to take a few deep breaths and it would go away.

If you’re autistic you know the feeling of having an urgent medical issue and the idea that you have to seek medical attention for it. If you can, you avoid it. Or at least wait until you have an entire day to get ready for the appointment, go to the appointment, recover from the appointment.

The deep breathing didn’t change anything. This was something I could not ignore or avoid. I didn’t even think about the sensory and communication challenges I faced. I considered it fortuitous that I was standing across the street from the local hospital.

As I walked into the hospital’s Emergency Room I was confused about where to go. There was a desk with someone entering data into a computer, there were 2 people at computers near the door. There were no directions. 

Where I live a number of people who can’t afford routine medical care go to the Emergency Room knowing they won’t be turned away. I understand. The system has supposedly been set up to determine which patient needs immediate attention and who can wait.

The room was crowded with people. There were interesting odors and various levels of conversations. A baby was crying - his father said his other child had poked the baby in the eye. There was a homeless man leaning on his grocery cart. 

I stood waiting to figure out where to go and who to talk to. I realized this wasn’t something that could wait. I knew I would have a hard time sitting in this stuffy, crowded room trying to be patient and calm for what could be hours for my turn. I walked over to a person at one of the computers and told her I needed to see someone right away.

She handed me a form to fill out which I did and promptly returned it to her. She asked the reason for my visit. I told her my pulse was 225. She wrote “elevated pulse” on the form and handed it back to me. She said to wait and they would call my name.

My stress level rose as you can imagine. It was as much about the environment I was in as it was about how I felt. The sounds, the smells, the lighting. I just wanted to be out of there. Couldn’t they just fix this and let me go home now?

A woman called my name. I handed the form to her and had written “225” on it because I didn’t think the other woman’s description was adequate. This woman took one look at it and rushed to get someone else. Finally, I thought, they’re taking me seriously.

I was rushed in to a room and vitals taken. They asked me how I felt. 

“I feel fine,” I said. Honestly I didn’t think I felt all that bad but I have to wonder. Being autistic isn’t that our default answer? Is it that when people ask us how we are, autistic or not, we automatically say “fine.”

The autistic people I know are not complainers because complaining requires social communication. We’re aware that we overshare and don’t always know where the line is. 

It didn’t take long for this small room to fill with people. They hurried around putting IVs in both arms, whispering to each other with a very serious look on their faces and wheeling in all kinds of machines to test various bodily functions and organs. 

“Just fix this and let me go home,” I thought. I think that’s when it came over me. That feeling of compartmentalizing. It’s almost like a numbness to emotions. It feels like I am an observer rather than a participant. It must be an autistic survival instinct kicking in to lessen the stimulation of the sensory environment that would otherwise feel overwhelming.

There were 7 people in the room when a serious-looking doctor spoke. 

“We’re going to give you a medication to stop your heart. It will only last a few seconds and then it will resume. It’s going to feel uncomfortable.”

Uncomfortable you say? Stop my heart? I could only nod my head. 

I’m aware of my sensory sensitivities. I am aware of anxiety. I know I often avoid the unfamiliar. This was about as unfamiliar, sensory, anxiety-provoking as it gets.

My heart stopped. It’s a feeling I can’t describe. Everyone in the room was watching my face then looking at the machine monitoring my heart and then back at my face. For those few seconds I don’t think any of us took a breath. 

When my heart started again they asked me how I felt. “Fine,” I said.

“It didn’t work” they told me.” We’re going to do it again.” The second time it seemed to last longer. 

“It didn’t work,” they said. They started to rush around the room going in and out and talking quietly to themselves. 

Whatever you do don’t leave me alone, I was thinking but the words wouldn’t come out.

No one was engaging in small talk which was somehow good because I didn’t have to pretend to be social. On the other hand, they weren’t engaging in small talk. When does that ever happen?

After the group consulted and analyzed the decision was to try another medication. This one worked to lower my heart rate but not by much. Still, it seemed to lessen the tension in the room. 

I was told I would have to be admitted to the hospital. I looked down at my phone ready to call family when I noticed the battery was at 10%. I felt more alone than ever at that point.

As is common in the US, I waited 8 hours in that hard, cold uncomfortable bed, if you can call it that, to be admitted to the hospital and taken to a room.  

A man in the room next to mine was screaming “I want to go home” repeatedly. A nurse apologized and brought me two pairs of ear plugs. I was impressed that there even were ear plugs available in the hospital! I wondered whether an autistic person had advocated for them.

I call hospital beds cribs for adults because they look like and feel like they are. They’re hard and cold and impossible to turn over in them. The pillows are flat and blankets thin.

They don’t turn off all of the lights in the room at night including the one emitted by the bedside computer. It took four blankets before I was warm enough to sleep. 

As bad as I felt, which was “fine” of course, I noticed everything. My eyes scanned the room looking for patterns and muttering “that makes no sense” as I analyzed how the bed was situated, that there were no towels and that the bathroom door was broken. I didn’t realize then that this would be my room for the next five days.

Does everyone feel the way I did when they’re in the hospital? I can’t know. I am certain though that autistic people have bigger challenges in that environment than neurotypicals would. Getting adequate healthcare takes good communication on the patient’s part AND on the healthcare providers part. 

Hospitals don’t stick to routines unless you consider being awakened every night at 3 a.m. to have your vitals taken as being a routine. That is if you are lucky enough to sleep.

The shifts of nurses and medical assistants changes every 12 hours so an autistic person gets to meet new caregivers twice a day! Doctors walk in, quickly give their names and specialties, say two sentences and walk out. There were several that gave no opportunity to ask questions before they rushed to the next patient room.

There’s almost no predictability in a hospital, something autistics need. You can’t really prepare yourself for what might come next. Things seem to be done spontaneously and quickly. I was rarely asked if I agreed to a certain test, I was just told it was happening. 

When a doctor would ask “do you have any questions?” I would think for a few seconds knowing I did have some. My brain would freeze and I’d say no. It was just that I was still processing the unfamiliar terms while I negotiated the social aspect of the conversation. 

What would have been better for me as an autistic person, and probably better for neurotypicals as well, is for the doctor to give the information and then come back a half hour later and ask if there are any questions. 

On the third day a doctor I hadn’t seen before came in and announced that they were going to shock my heart back into a normal rhythm. He didn’t really give me a choice, he just went on and on about doing it. I was able to get out the words, “I want to talk to my family first,” which translated meant “how the heck do I know if I want my heart shocked? Can I have a few minutes to decide?” I mean, autistics rarely make snap decisions. There’s the research and analyzing that we do first.

A day later a new doctor came in. He had strong, caring eyes. I don’t know if he realized I am autistic but he proceeded to give me detailed information about the heart shocking procedure. He put my mind at ease in part because I had all the information I needed to feel confident. It was specific, black and white, logical and detailed. 

The next day they wheeled me into the procedure room. They told me that within a few hours of the procedure I could go home. They were confident about it and said things to make me feel better about what was coming.

The medicine they gave me put me to sleep and all I remember is someone saying my name what seemed like a few seconds later. 

“Everything went well,” the doctor said. “Your heart is back to normal.”

Normal. I could go home, have my favorite foods, sleep in a bed I now appreciated more than any other, have the lights low, the temperature perfect and the solitude I value.

“How do you feel?” A nurse asked.

I smiled for the first time in five days.

“It’s fine. I’m fine. Everything is fine.”

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