Hello folks, this post is going to be centred around the autistic experience in hospital, specifically in England, as is my experience. I’m going to put a trigger warning here for restraint and general health stuff. Let’s get cracking.
A few weeks ago I was hospitalised for 6 days for an illness that I’ve had for 3 years, an illness which I had not yet received a diagnosis for, instead being told it was “anxiety related” or something to that effect. I knew damn well it wasn’t anxiety and as much as I tried to tell the doctors, my symptoms were bizarre and seemingly unrelated. Prior to the attack I had already reached a point were I was struggling with walking for more than a couple of minutes at a time, as well as collapsing and having other strange symptoms, yet all my tests came back fine. On this particular occasion however, I was getting such bad tremors and muscle weakness that I completely lost the ability to move, speak and swallow. My face was twisted, all my limbs hurt from the muscle contractions and I was generally very unwell. So, I went into A&E.
The exact medical details of what happened are unimportant but after 6 days I was diagnosed with a condition called FND (Functional Neurological Disorder) and I’d made a sufficient enough recovery to allow me to go home to my parent’s house in London and continue to recover there. However, the FND itself isn’t what I want to talk about, but it’s important context for some of what happened.
On my medical notes it says I am autistic, and my girlfriend, who took me to A&E and did an unbelievably amazing job at looking after me and advocating for me, made sure that all the staff knew. Anyone who has been to A&E knows how stressful it is, especially if you’re autistic. As it so happened, I was relatively distracted by my symptoms and so I didn’t get too overwhelmed, but I had my headphones and sunglasses with me to help block out any noise and flashing lights that might be around. I also sat in a corner (on a wheelchair as I couldn’t move) which always helps me stay calm, possibly because being in a corner makes me feel protected and secure.
After we had been waiting a little while, I had a non-epileptic seizure (they have been happening over the last 3 years, but I didn’t know that’s what it was) and after my girlfriend called for help, I was taken to see a doctor. I don’t actually remember what happened but fast forward a little bit, I am talking to a couple of medical practitioners, having scans and being taken inside the hospital itself and put on a temporary ward in A&E. I want to stress that everyone in A&E was really lovely. They were patient, kind and seemed to be taking me seriously. They were mindful of not wanting to cause me additional distress and so made sure I understood what was going on and told me before they touched me. The nurses / HCAs on the ward-esque-thing asked about my ASD and if there was anything they could do to help me feel calmer. When I started shaking so violently I was at risk of seriously injuring myself, they stayed calm and still informed me before touching me to give me some painkillers. They also always made a point of addressing me rather than my girlfriend, even when she had to speak on my behalf.
Small things like that made me feel much calmer and more in-control than I am used to in a healthcare setting. While this wasn’t the case in this A+E, I often got overwhelmed by too much sensory input and so many questions, and once I started going non-verbal, the practitioners often ignored me in favour of my companion. I got scared because they touch me without telling me when or why, and they leave very little processing time after questions. Training on ASD is minimal, if at all for NHS staff, and so I want to be clear that I am not saying it is a fault of the individual. They are overworked and underpaid, and nothing that I write should be taken as a personal attack. However, this does lead me on to a rather more unfortunate incident that happened. Let me walk you through it:
The time is 2am on my 5th night in hospital. I am asleep on the bed when I am woken up by the staff gathering my things and telling me I’m being moved. I am confused and panicking as I am wheeled out of the room and find myself unable to speak and grip my toy manatee close to me. I am wheeled into a ward where all the patients are asleep and I am put in a curtained-off bay, with just enough space for the bed and a small chair to my right. I can hear the staff talking and one of them comes over, takes my medication from my bed and walks off with it.
I am understandably quite upset by everything and another staff member comes over to talk to me but leaves again when I don’t say anything back and instead just stare at her. After a few minutes, I get out of bed and start trying to walk back to the other ward.
My rationale at the time was that I needed to ask the people on the ward to inform my girlfriend and my parents where I have gone as they don’t know I’ve been moved. Now I am no longer in that state I understand that they would have of course told them, but at the time, I had a one track mind and all I could think was that I needed to ask them to tell my loved ones where I have gone so they don’t think they had lost me.
So, as I said, I started trying to walk back to the other ward, “trying” being the key word here. My legs are shaking and spasming like I am being given electric shocks and I am going just about fast enough to maintain a conversation with a snail, en-route to it’s snail job. To no-one’s surprise, the nurses stop me and ask where I’m going. I can’t understand what they are saying so I attempt to continue my journey before one of the nurses stands in the way and repeats the question.
From here it starts to get hazy. I remember not understanding what they are saying and wanting them to get out of the way. I also remember that they kept asking me questions and getting closer and closer, not giving me enough time to process what they said before moving onto the next question. Things started to get overwhelming and the beeping of the machines felt like it was getting louder. I was feeling too hot and my limbs were hurting from the exertion of standing. I stumbled backwards and used the wall to help take some of my weight as I tried saying what I was doing. My words weren’t coming out and they were still getting closer and more were approaching. Then suddenly one of them touched me and I lost it. I started yelling and crying and hitting myself in the head. This prompted them to grab my wrists, furthering the panic I was in. I couldn’t stand anymore and I was sinking to the floor, and there were two nurses either side of me, trying to stop me from hitting myself with my weakened limbs. I was on my knees and they pushed me forwards, pinning me by my arms, face-down on the floor. I remember trying to get up but even in the meltdown my strength was gone and I couldn’t get my chest and face off the floor. I could hear the nurses all talking to each other and my bed being pulled round before being half guided, half forced onto the bed and put back in my bay.
I got out of the bed and sat down on the floor next to it. I sit on the floor when I am feeling scared, and I like sitting in a small, confined space, such as between pieces of furniture or under a table especially. In this instance I dragged myself between the wall and the chair, facing the bed. The nurse in charge came back over and told me I wasn’t allowed to sit on the floor, that I had to get back into bed. I ignored her. I needed to sit on the floor. After a few minutes I crawled onto the chair which she seemed to take as satisfactory. About 30-45 minutes later, I got into bed, texted my girlfriend an update on what had happened, grabbed Teddy and tried to sleep.
The bizarre thing is, throughout the whole ordeal, I could hear the nurses telling each other “she is autistic”, and yet that situation still ended up happening. It was such a wildly inappropriate way to deal with a situation that should never have happened. Firstly, I should have been given at least a 5 minute warning before being moved in the middle of the night, and secondly, they should have given me more time to respond to their questions so I could process what they were saying. Thirdly, I should not have been touched and most certainly should not have been restrained, face down on the floor. Lastly, I should have been allowed to sit on the damn floor!
I am not in any way saying this is a common experience for autistic people in hospital. In fact, I really hope it isn’t because it was horrible. I wanted to highlight a bad situation made worse by lack of training and understanding of the condition. Now I have a diagnosis for the condition I am hoping to be able to manage it better and avoid hospitals as much as I can, as the idea of having to go into one makes me start to panic. I now use a wheelchair to combat the fatigue and allow me my mobility and independence back. Having now seen what my life is like using the mobility aid, I am frankly shocked at why I haven’t been using one for the last 2 years. My bad days are more manageable and my good days are even better. My legs technically work but my brain doesn’t send the right signals and everything gets blocked and muddled up in my brain. I can be staring at my leg, trying to move it, and it’s as though my brain has forgotten where it is. FND affects my arms as well as other parts of my body and it’s functioning, but walking and standing for periods of time longer that 10 minutes exacerbates everything and is always the first functioning to deteriorate as soon as I start getting tired. Not only that but the wheelchair is much safer, as I don’t pass out or have seizures any more! Falling into a river, alone, at 10:30 pm was the wake-up call I needed to realise how dangerous the seizures had gotten, and I can honestly say that the wheelchair has revolutionised almost every aspect of my life. I still walk and use my legs as much as I can, but my quality of life has risen so sharply since it’s introduction that I genuinely struggle to understand how I managed without it.
Anyway, so now you know what’s been going on recently and why there hasn’t been very much activity from me. Various life changes and fluctuating health has taken its toll, and I am just starting to feel as though I am properly recovering from that episode. I know it was a bit of a heavy one today, and so I apologise if that’s not your mug of tea, but there’s not much I can do about it, as I’ve already written this post.
Until next time!