My hospital experience

Dismissing my autism was the worst part of a hospital visit

A relatively routine exploratory procedure at my local hospital turned into the appointment from hell. Like anybody undergoing this type of procedure I was already slightly anxious as to what might be discovered, and this was only heightened by the fact that the date and the time were changed multiple times. Not unusual for any hospital appointment today but, what can seem a minor inconvenience for some is a major cause of confusion and added stress for those with autism.

Prior to the appointment I had filled out my hospital passport, a supposedly useful document to help you prepare medical staff, for your visit. However, even this document seemed difficult to complete, it appeared that they were addressing an adult with learning difficulties, and it didn’t fit the idea of what an autistic person needed. I completed it anyway hoping that it would give the medical staff and myself an opportunity to understand each other and to make the whole experience less stressful for all of us. It was my belief that this would be my voice and provide an explanation for others.

However, when I arrived at hospital nobody took the time to go through this with me, in my opinion they made an immediate assessment of who I was and took no notice of what was written in my passport. They made no effort to understand what I was going through which, in turn, meant that my anxiety was beginning to build. I felt completely alone, misunderstood, and isolated and there was nobody I could turn to. People were talking to me nicely but because I was anxious, light-headed I couldn’t respond well to what they were asking for. For me, my autism means I find processing instructions really difficult and when they asked me to remove my gown and hop onto the bed I got really confused – do they want me to lie down, sit up, take my gown off completely, which way did I need to get onto the bed? Anybody else might have been able to ask the questions I needed answered but by then I was not able to communicate, I didn’t have the ability to ask.

This is why, in my hospital passport, I had asked for somebody to be with me. We had pre-arranged for my Partner to accompany but on the day my requirements weren’t understood, and he was sent away. It was essential that I had somebody who could be my voice and communicate on my behalf instead of which I felt scared and abandoned. They did send over specialists at one stage, and I began to feel really relaxed with them. However, I heard medical staff saying that I wouldn’t need extra help which could not have been further from the truth, they made that decision for me without really understanding. The specialists were sent away and when they went, my nervousness and anxiety returned tenfold.

When I got to theatre, I did get some extra support I needed but this was short-lived. Immediately after the procedure I was taken to a recovery room and told to press a buzzer when I’d drunk my tea, but they didn’t tell me which buzzer. I just sat and waited all the while feeling my anxiety growing because of not knowing which buzzer and the fact that there was a lot of noise in the room – talking and bashing around. This is something that all neuro-diverse people find disturbing and difficult to deal with. It was an exceptionally long time before somebody came to my bed and that was only because I was the last person there.

I didn’t get my autism diagnosis until I was 41 years old which meant that I had created a lot of coping mechanisms and learnt how to avoid situations that would increase my anxiety. When I got my autism diagnosis, I thought this would be over, that I could tell everybody what I was experiencing and how they could help me. Sadly, despite all my prep work, this hospital experience took me back to the time when I needed to mask my autism and pretend that I was neuro typical. It reminded me that people still struggle to understand how you could appear to be a mature, neuro typical but have great difficulty understanding the order of things.

Learn, Understand, Accept

I wanted to feel safe and understood during this hospital visit. I wanted everybody to understand the small adaptations required to make my experience bearable. Just by having somebody there with me who knew what I was going through and how it might affect me would have made the whole experience less of a struggle for me.

It would be good if the staff had paid attention to the passport and had not appeared to dismiss me and my symptoms as something that wasn’t real. For me it is and was especially real during this time. Simple things like explaining things in more detail, turning the lights down or arranging my recovery in a room with less noise would have made all the difference. Also, if they are going to provide a service like the passport or people with me, this should be taken seriously – the whole thing – not just dipping in and out when they felt it was required and not when it was actually vitally important for me the whole time.

I think it would be great for all medical and professional people to understand how much work and effort is required by somebody who is autistic to have appointments and meetings. I feel the same when I have to meet my children’s teachers, I have to do a lot of work in preparation, and all situations are challenging and draining. Sadly, in this instance, the extra preparation didn’t help at all. The thought of another hospital appointment fills me with dread and anxiety when it could be made so much easier.

Thank you to Debbie for sharing her story.