Autism and hospital – why things need to improve

In terms of length of time spent there I think I am the absolutely master of hospital. I have spent literally years there over my lifetime, mostly due to my schizophrenia which usually involves at least a month admission when I have a psychotic episode.Thursday and Friday of last week were spent in hospital as I have a brain-related (but for once not mental health-related) episode. Apparently I either had a mini stroke or an atypical migraine – having scans shortly to check which and thankfully got to go home yesterday evening and appreciating being home right now. 

Autistic people – kids and adults – often struggle with hospital stays and visits to emergency for a number of reasons. I  am definitely one of them, despite the frequency and length of all my admissions over the years.

I want to talk about autism specifically and hospital. There are a range of things which make hospital very unpleasant for an autistic little Yennski person – and other autistic folks. My difficulties are:

  • Sensory issues – bright fluorescent lights, machines beeping, children – and some adults – yelling. The sensory side of hospital is horrible. One of the worst experience I have had has been in the locked psychiatric ward where there was a light flickering constantly. Because I was very very unwell – and the staff weren’t very accommodating –  this went on the whole time I was there and with literally no escape.
  • Uncertainty and particularly waiting. One Thursday I spent four and half hours on a bed in the corridor as there were no beds in emergency. I had no idea how long I was going to be there for. The uncertainty was horrific. The staff were all really apologetic and the wait times were impacted by the high number of COVID cases so it wasn’t anyone’s fault per se but it was still very stressful.
  • Hyper-empathy. My hyper empathy is pretty significant. Being around people in pain – psychical or psychological – and people who are angry and frustrated is just horrible. The psychiatric ward is often of the worst places in the world for negative hyper empathy. I used to say to my psychiatrist ‘Please let me stay at home and be miserable with Mr Kitty than be with everyone’s misery in the psych ward’
  • Medical staff not understanding your experience. Being autistic we go through life being roundly misunderstood by most neurotypical folks. Go to hospital and this seems to be magnified a lot. This is not just in the psych ward – although it is pretty noticeable in those settings. This can actually be dangerous of doctors miss things because you communicate differently.
  • Meltdowns and shutdowns. The combination of stress, worry  about the injury or health condition you are there for, uncertainty, sensory and emotional overload can lead to meltdowns and shutdowns. These tend to be not understood by staff and you are seen as being poorly behaved, especially if you are an adult
  • A lot of autistic people are alone when they go to emergency. It is much better to be with friends, family member of partner – if you have them. In my life I have spent more time alone in emergency than with a friend so I have been in those situations all by myself. This is very unpleasant and makes being in emergency very scary, especially if I am there due to mental health issues. Thankfully I had a lovely friend with me on Thursday and Friday and she made the experience infinitely nicer.
  • Staff misunderstanding your communication and thinking you are internationally difficult or aggressive.

Doctors are told to ‘do no harm’ but that can be a bit loosely interested by some medicos. When I was in hospital on Thursday and Friday I had taken my Webster pack of medication with me on advice from the ambulance officer. When I finally got a bed the first doctor I saw told me to take my meds from my website pack because one of them. Clozapine – was not in the hospital [pharmacy and would need to be specially ordered. Clozapine is an anti- psychotic medication and you have to take it every day. If you miss it for two days you have to start taking it at a very low does and then titrate it up to the dose you normally take. This process means that you basically get psychotic from the dose being low. I know this because it happened last year. The doctor in emergency on Thursday said to take it so I did. Then the new doctor came in and get really angry that I had taken my meds because they were in my Webster pack and not charted by her. She then said ‘I think you need to stop taking your meds. You didn’t have a stroke. It was your meds!’ I was horrified as I need to take the meds or I get very unwell. I spent the next few hours in total stress about this. Gee I hate hospital! Thankfully the specialist said my meds were not responsible for any neurological issues and it was OK but it made me realise – probably for the 1000th time – how powerful doctors are and especially hospital doctors. 

I have spent a LOT of my life in hospitals and I dislike them immensely. Hospital more often than not is not autism friendly. I guess the only good bit is that I have been in those settings so much that I am quite good at getting through it and am a lot more assertive than I once was. Most of the staff are absolutely lovely for a few notable exceptions. They do an amazing job but it would be really nice if it was most autism friendly. Oh and if they used transgender people’s correct pronouns and didn’t call me a ‘good girl’ that would be a vast improvement! 

Yennski in hospital in 2019

4 thoughts on “Autism and hospital – why things need to improve

  1. I’ve spent a lot of time in hospitals in both emergency situations, and community treatment, and being seen by experts. I dislike them immensely and I speak fluent “health system” because of a previous career there, but I still find it overwhelming and unpleasant. As an autistic person I (try) to have things in checklists to take with me, but when I’m unwell, I’m going to forget important things. Therefore yes, I absolutely agree that hospitals can do much to improve.

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  2. I had my first hospital stay this May. One thing that I needed my father to understand is that a clinician who is familiar with you can brief other staff members and make you feel more at home, whereas if you go to an endoscopy clinic where you’re not known, it’s stressful. The nurses were great and I had it noted on my file that I am a vulnerable autistic non-binary and they were understanding.

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  3. I’ve had multiple hospital stays for my mental health and often it would cause more harm. Hospitals are definitely full of sensory overload and it can be very hard to manage when you don’t have access to your normal tools. Not having access to my headphones has been detrimental to my hospital stays. Additionally, staff not understanding my needs as an autistic person (and not using my pronouns) has made for some rather unpleasant experiences.

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  4. My daughter is currently on her 7th straight month in hospital, first at Austin, and now at Royal Children’s. The experience at Austin, in particular, was so negative for both of us (both autistic) that we were much worse when my daughter was finally transferred to RCH. “Do no harm” is simply misunderstood when it comes to neurodiversity. The lack of understanding in most people is palpable and still shocks me. Even though RCH are more flexible and accommodating, the constant changes, communication clarity through what seems like a thousand people and unstable timeframes mean that anxiety for both of us is always high. How is anyone supposed to heal in this environment…thank you for sharing your journey so I don’f feel so isolated.

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