Many people with autism have had negative experiences and misunderstandings in healthcare, often because we autistic individuals communicate differently through body language, which can easily be misinterpreted. A couple of years ago, I underwent a colonoscopy, and my different way of communicating definitely caused problems when interacting with the medical staff!
I Gave Staff a Letter
Due to my sensory sensitivities and emetophobia (fear of vomiting), I needed to be sedated and admitted to the clinic. The healthcare team had to agree to my requests for special arrangements, as they knew I wouldn’t have been able to complete the procedure otherwise. I have a strong aversion to taste and a fear of vomiting, so the thought of drinking the bowel preparation liquid was incredibly panic-inducing. Therefore, I needed to drink it while at the clinic. As a precaution, I gave the staff a letter explaining I have autism and severe emetophobia, hoping all the nurses attending to me would read it.
It Felt Overwhelming
Yet, it didn’t seem like anyone was aware of my autism. Many nurses finished their shifts and were replaced throughout the day. The night before the procedure, when I was supposed to drink the first dose of the liquid, a nurse brought it to me and instructed me to finish it within an hour. Considering my sensitivity to taste, it felt completely overwhelming, and I started to panic. But the nurse just left me alone in the room, saying “you’ll manage.”
Almost the Worst Thing That’s Ever Happened to Me
The closer I got to the hour deadline, the harder it became to drink it. When the nurse checked on me after about 20 minutes, I told her in a panic that I couldn’t continue drinking the disgusting liquid. “You can do it,” she said and left the room again. I was completely stunned. I genuinely meant what I said, but I was still left alone! I needed support. Drinking that liquid was almost the worst experience of my life!
Something I’d Never Say Otherwise
It was deeply traumatic, and I still have nightmares about it. It certainly didn’t go smoothly. I’ll likely never agree to another colonoscopy, even if I have symptoms of bowel cancer. In that moment, I struggled to understand why I was left alone after explaining I couldn’t drink it. I wouldn’t have said that if I hadn’t meant it!
I Have Different Body Language
It only occurred to me later that I’ve been told I often look happy and energetic, even when I’m feeling awful. My body language, facial expressions, and gestures don’t always reflect my internal state, and people without autism tend to pay a lot of attention to non-verbal cues. When they see someone smiling, they often assume they’re exaggerating when they express panic or say they can’t cope. You’re expected to look sad, scared, and panicked to be taken seriously, but I completely forgot that in the moment!
It’s Very Energy-Draining
It’s not that I’m consciously putting on an act, it’s just that I often appear happy even when I’m not. Adapting my body language and facial expressions to match how I’m feeling doesn’t come naturally; it’s a conscious process. And in stressful situations, I often completely forget to think about it. It also takes a lot of energy for me to try and appear a certain way. I have to try to be someone I’m not, but sometimes it’s necessary to be taken seriously.
It’s Important to Listen to the Autistic Person
When a person with autism tries to tell you something, listen to what they say! Many autistic individuals have different body language, which can cause significant misunderstandings. An autistic person who looks sad and angry might actually be happy, and an autistic person who looks happy and cheerful might be sad and even have suicidal thoughts. Furthermore, body language can be one of the reasons many autistic people prefer written communication: in email and text message communication, the focus is on the written message!
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