"Autism recognition in healthcare"

I’m autistic, and I struggle with unexpected things happening, things not going the way I expect, and having to navigate systems and situations that I have no experience of or mental map for.

I’ve had a cyst in my side for about 12 years and it’s become infected 3 times. The first two times I was given antibiotics and dressings to help it drain, as it opened by itself. Unfortunately, my cyst became infected for the third time at the end of 2018, and while I had the antibiotics as usual, it didn’t open, and so was still swollen and irritated. When prescribing me the antibiotics the GP had told me I could come in and get it lanced (“popped” was his exact word) at the GP surgery if needed. My days off work are set days so I called on my day off and was given a same-day appointment for 2pm.

I arrived at the surgery and was seen by the practice nurse and the GP, who advised me that, because there was no opening or pore for them to drain the material from the cyst, it would need to be done at the hospital, but that they could get me referred there that day. I was given a paper copy of my notes (including my autism diagnosis) to take with me and the name of the department I was to go to. They advised I might be seen that day, but I might be given an appointment to come back another day.

Luckily, my mum, who lives overseas, had been visiting for new year and was still here so she was able to drive me to the Queen Elizabeth University Hospital, which would have required a 20-minute taxi journey for me had I gone alone.

We arrived at the QEU hospital and asked at the enquiry desk for the department written on the letter. It took some finding – my mum had to ask a few people, and when we found it was only marked by a printed-out A4 piece of paper on the door, and in fact had a different name entirely. My mum has worked for and with the NHS for many years and was able to navigate this situation for me.

I handed over my letter and was seen within about twenty minutes. I was not in a lot of physical pain, but I was starting to become distressed as what I had thought would be a painful but quick visit to my GP had now become almost two hours of stressful activity, with more to come and no clear timescale.

I was given a blood pressure test, something my GP had already done before I left the surgery and that was stated clearly on the GP’s note. I was told at that point I would likely need to have blood taken. I waited another ten minutes or so and then I was taken to a treatment room to have blood taken for testing. The nurse who took the blood was very pleasant, and listened to my suggestion that I lie down as I have a history of fainting when having blood taken.

They then handed me a foil dish and said “for your urine sample”. I did this and returned to the room. The nurse advised that they were taking the samples to be tested, and they left the room. I still wasn’t sure exactly what was going to happen – whether I was going to be seen that day, or given another appointment and told to come back, whether I was waiting for the results before a doctor could see me, how long it was likely to take, and whether I was likely to have to have a painful procedure that day.

As is common with many autistic people, I have trouble visualising a mental map of the future, and I have trouble anticipating and understanding systems that I haven’t interacted with before. This both causes stress and is exacerbated by stress, so it’s a vicious circle. Another common issue for autistic people is a very low pain threshold and sensory difficulties with anything involving the skin, so the anticipation of needles and scalpel were adding to my stress.

30-45 minutes passed with no further advice or update. I hadn’t brought any water or food with me, as I hadn’t expected any of this, but my mum had a bottle of water in her bag which she gave me.

My mum was meant to be flying home that evening. This meant that her time was running short. At this point I was still maintaining a cheerful demeanour. I insisted she leave, as I didn’t want her to miss her flight. We had discussed the fact that we would both feel a lot better about her leaving if we had a clear idea of what the next step was.

She wanted to ask someone, and in the process tell the nurse about my autism. I initially resisted as I didn’t want to be the “problem patient”. I have had experiences before where disclosing this has made things worse for me as people don’t know what they should do, and expect me to direct them (when I am already having difficulty functioning) or get irritated with me for reasons I can’t always understand. My mum pointed out that it was in the notes that I had brought with me, so they should already be aware. I agreed on this basis.

She left the room and got the attention of the original nurse. My mum has informed me that she simply mentioned that I am autistic (as was stated in the note from the GP) and not having been given any updates was particularly stressful for autistic people , that she was about to leave and could someone just let us know what we happening so that I could relax a little. The nurse then came into the room and informed me that they were awaiting the results of my tests, and for the doctors to finish their rounds in the hospital. They advised it could take a little while, but that I’d see a doctor and they would advise me of the next step. My mum and I thanked them and they left the room. My mum then started to make preparations to leave.

At this point, another nurse (possibly a nurse-practitioner) entered the room. Their first words were “What’s the question?” in a tone of irritation. 

I was confused and advised I didn’t have a question as such. My mum reiterated what she had said to the other nurse, that I hadn’t been sure what was happening, but that we had now had our questions answered.

This nurse then identified themselves as being in charge of the department that evening, and immediately launched into a terse and defensive explanation of why we couldn’t be seen right away, that we “just had to wait” for the doctor, that this could take a while and there was nothing they could do about it.

I replied, probably equally tersely, that this is not what we had asked. That all we had asked was what would happen next, not when, because I had been given no clear idea of what was going on, beyond that at some vague future point (that day, another day, or some unknown third option) my cyst would be dealt with.

They were not listening to me and spoke over me to reiterate their statement about not being able to tell me how long it would be. They also said “we’re not that busy tonight which is why you’ve been allowed to wait in the treatment room, we’d normally have put you back in the waiting room”, which seemed a bizarre statement to make and came across as something of a threat.

My mum cut them off as she could see I was on the edge of a meltdown, basically saying to her “OK, thanks, we’ve had the answer we needed”, attempting to end the conversation as I was becoming extremely agitated. The nurse-practitioner then started tersely repeating “I can only apologise, I can only apologise” before leaving the room. We were left feeling distraught, not heard and unclear as to what she was apologising for.

At this point I entered full meltdown. The symptoms of an autistic meltdown are intense crying and sobbing, hyperventilation, full-body muscle spasms, disassociation, inability to make eye-contact and a breakdown of cognitive function. It also involves an intensifying of sensory input such as light, sound and touch. I said to my mum that I had told her this would happen, that I was now, in the narrative of the staff working that night “a problem patient”, someone who was perceived to having tried to jump the queue or get special treatment, and that I hadn’t been listened to properly at all, which is what I had been afraid would happen. Being misunderstood and misinterpreted is very difficult for autistic people at the best of times, and is a common meltdown trigger by itself.

After a few minutes of me being in meltdown, the nurse practitioner walked past the door and said “right, I’m getting a doctor now”, which deepened my agitation as I didn’t want to disrupt a doctor’s round, I know how tightly NHS staff’s schedules are and at no point had we intended or asked to be fast-tracked. My Mum made the decision to alter her plans and not leave for the airport as I was in such a distressed state.

A doctor arrived within a few minutes and asked me what was wrong. Their tone was completely different to the nurse practitioner – undefensive, empathic and calm. In between muscle spasms (during which every muscle in my body clenches, including my chest muscles meaning that I can’t breathe for several seconds at a time) I explained that I had simply asked for a narrative of what was to happen as I had been left in a room for a long time with no idea what I was waiting for, no idea what the next step was. I explained that all I had wanted was for the nurse to say “OK, we’re going to take these fluids for testing, you’ll need to wait on the results, and then a doctor will see you as soon as their rounds are finished. It might take a while”.

The doctor spoke kindly to me and let me say my piece. It felt like they had really listened and understood the situation. They then advised they were going to inject a local anaesthetic and open the cyst, drain it, clean it and then put a dressing on it.

I was still in meltdown all the time this was happening. The muscle spasms and sobbing involved in a meltdown are completely involuntary and so can only be allowed to run their course. I attempted to calm and gather myself while the doctor prepared for the procedure.

My mum left the room to call my stepdad to let him know what was happening and that she would be staying with me. While she was out of the room, I managed to lie still enough to allow the doctor to administer four injections, which were extremely painful due to the intensifying of sensory input (including pain) which happens during meltdowns.

They then performed the procedure once the anaesthetic had kicked in. They were speaking kindly with me during this and managed to make me laugh a little, which helped with my mood but unfortunately didn’t mitigate the physical symptoms of pain and muscle spasm. My Mum came back in to the room and was reassured to see that the Doctor had been able not only to complete the procedure swiftly, but had also understood and helped me calm down.

They cleaned me up and gave me further advice, and then Mum and I arranged for my boyfriend to come pick me up. I was then in fact able to see my mum off to the airport.

My reason for telling this story is to highlight two things:

1.Continuity of Care.

My GP surgery gave me printed notes including my autism diagnosis, and a department name. When I reached the hospital, not only did I find that the department name wasn’t the same as the one I had been given, but that my notes were apparently not consulted with regards to my treatment. I actually believe that no patient should be left in a room, whether a treatment room or a waiting room, with no indication of what they’re waiting for or what is to happen next, but it’s especially important for autistic people. If my mum hadn’t been with me, I would have likely hit meltdown even more quickly due to the long wait with no instruction. Please let me be clear here – the length of the wait was not the issue. The issue was the lack of information about what I was waiting for, and what would happen next. I had a book with me, and would have happily waited for as long as it took, had I known what the next steps were.

2.Staff Awareness of Autism

The attitude of the nurse-practitioner and the doctor were completely different. The former displayed a complete lack of understanding or skill in relation to working with autistic people. The latter acted with skill, understanding and empathy whilst able to undertake a difficult procedure on an upset patient, rapidly and with ease. Again, I don’t think any patient should be asked “What’s the question?” in a tone of irritation, but to walk into a room where there is a distressed autistic patient and speak to them in this way shows a lack of awareness and most likely a lack of training in how to handle situations like this. Autistic people often ask questions that seem obvious to other people. Autistic people may even ask the same question multiple times, or ask a person to re-phrase things until they can understand. This is an issue I have struggled with countless times in my life, in school, in the workplace, and sadly in healthcare. The assumption that a person asking “obvious” questions is being rude, cheeky or just difficult is common and makes it very hard for autistic people who are simply trying to process the same information as everyone else, just in a different way. Even so, in my case I had asked only one question, and not even the question the nurse-practitioner seemed to believe I had asked.

The combination of a lack of initial communication and the way I was spoken to pushed me into a meltdown minutes before I had to have minor surgery. This is far from an ideal situation to have any medical procedure during, let alone one involving needles and a blade. It turned what would have been a stressful and unpleasant afternoon-into-evening into a traumatic crisis for a person whose neurotype means that they have a harder time processing and moving on from traumatic experiences.

It means that, since I now have a further appointment to get the cyst removed permanently, the thought of this further procedure is making me panic, cry and hyperventilate, which I will have to try and get over before then.

It means that I now have yet another memory of being embarrassed to be seen crying and sobbing in public, to have yet again been the “problem patient”. I’ll now think about this incident every time I’m in a hospital for the rest of my life.

We understand that staff are doing their best in a challenging context and often with stretched resources. But this situation would have been avoided if my notes had been read, awareness of autism and how it shows up in people was a routine competence for all staff, and if compassionate listening was the default in every healthcare interaction. My experience highlights real gaps in health literacy. We don’t want this situation to arise for me or anyone else using NHS services and my Mum and I would be happy to meet and discuss how changes to policy and practice could be routinely autism-informed.