Tuesday 14 December 2010

Autism in the Medical Emergency Situation...

Last night I was the patient around which a Medical Emergency Team (MET) call was focused. I realised during the course of that MET call that I had a somewhat unique perspective to offer on the experience of being the patient in that situation. As well as being a qualified doctor, I am someone with an autism spectrum disorder.


I’ve had MET calls before I was diagnosed as being on the autism spectrum and they were just as difficult. Unfortunately almost all of them were more ‘painful’ than tonight’s episode as nurses, doctors and myself couldn’t understand some of my reactions. Knowing a bit more about myself, knowing about autism, and knowing how autism affects me offered a few saving graces tonight.

So let’s start with a running commentary of the MET and what it meant for me as the patient and how it played on my autistic features. Hopefully my open disclosure of this experience helps others on the autism spectrum by increasing the awareness of the impact something like a MET call can have on us.

In the early hours of the night my asthma suddenly started to worsen. I was already in hospital after being admitted with status asthmaticus the previous day. Things had been travelling along quite smoothly and in the morning leading up to this I had actually been moved from under the intensive care unit (ICU) bed-card to the general medical one and placed on a ward. Within minutes of my chest beginning to tighten up again I was right back at the point of being able to only physically speak in single words and displaying a persistent expiratory wheeze not just audible at the end of the bed, but all the way out at the nursing station.

Fortunately the medical intern happened to be at the relevant nursing station and that saved us some time. It was ok at first... The only people coming into the room were my nurse, who had introduced themselves at the start of their shift, and the intern; just that one unfamiliar person. I coped better with that single unfamiliar person being an intern as opposed to another nurse because I have walked her shoes and know well what her roles and limitations are. Perhaps if I did not have such a strong understanding of her likely capabilities, and actual responsibilities, she would have been a greater cause of anxiety. But I was not faced with that.

POINT 1: Someone with autism knowing a lot about the role, limitations, capabilities and responsibilities of an unfamiliar person is likely to feel more comfortable with that person than if they have little idea of what that person can, and is meant, to do.

The first few nebs of ventolin achieved very little and I actually worsened. The MET team were called...

Soon there were ICU nurses with a big trolley and loud beeping machines filling the gaps on the side of my bed. They were all lovely, greeting me with smiles, proficiency, reassurance and obvious confidence in their role. Once again my medically acquired knowledge of how a MET call works served to ease at least some elements of the anxiety I faced. As well as the ICU nurses all other nursing staff from my ward joined the room to assist. Soon I was met with another doctor, fairly senior looking, but no introduction or label to tell me exactly where he fitted into the scheme of things (so I was unable to place him in my current understanding of a MET team and who is doing what). Finally a familiar doctor appeared, the medical registrar who had accepted me the previous morning from the ICU team. His arrival clarified the unfamiliar doctor’s role for me and my anxiety level dropped just a touch.

POINT 2: Having an idea of how things work in a hospital can help people with autism cope in difficult situations.

POINT 3: Understanding who people are as they arrive to help can help reduce anxiety in a patient with an autism spectrum disorder. We like to know where everything fits in – it makes decoding all of those other social and communication things much easier.

Being a MET call, everyone wants information. Suddenly there were half a dozen voices all asking questions and seeking rapid-fire responses. Past medical history, history of the admission, history of just this episode, medications, effect of medications, patient obs from earlier in the shift etc... You get the picture. With different people asking these questions for different reasons I found that many of these questions were answered 5 or 6 times before everyone had the information that wanted. For me, sitting on the bed in the middle, it was pure chaos. There were voices inside and outside of my room. There were voices, questions, and instructions coming from people I could and could not see. While there was an obvious person to be taking the lead in this MET call, things were a little jumbled with different people taking the lead at different points in time. While it still worked I found I had no one ‘steady’ person to focus my attention on as the ‘go to’ person. The previous night when I was in the same state while in the emergency department (ED) a very strong, confident ED consultant had very clearly filled the role of leader and I could ignore some of the chaos and just try and focus on what she wanted me to do what and what information it was that she needed from me. Without that steady person my brain was forced to try and get my social filters working on full, while formulating answers (not pre-rehearsed like most things I say), and while attempting to ‘relax’... Sounds easy... Doesn’t it?

POINT 4 – Having one clear person for the patient to focus on as a key person to following instructions from and give information to can greatly assist a patient with an ASD in an emergency situation when lots of people need to be around to help. It gives a clear way of prioritising whose information the patient focuses their attention on and minimises the need for them to be doing the work of social filtering that doesn’t normally come naturally anyway.

POINT 5 – Information gathering is less stressful when more streamlined. If possible try to collect the information you need without constantly having questions repeated. This will minimise the sheer amount of verbal and ‘noise’ confusion around the patient with an autism spectrum disorder.

Being already admitted as a patient and aware my physical state was on a fairly rapid downhill run I was prepared for the next element of being the patient of a MET call. Touching, touching and more touching. Everyone was touching me. For so many of us on the autism spectrum soft touch is offensive and uncomfortable as opposed to firm, deep muscle, touch. Most medical professionals often trying to be reassuring lightly rub your arm or back etc. While prepared for this, it was a small taste of hell having 4 people supplying this kind of support simultaneously. Apart from the ‘extra’ reassuring touching there was still the clinical necessary touching. Stethoscopes from 3 doctors went on and off my chest, front and back. Nebulisers were filled, positioned, run and then removed, refilled and repositioned. ECG leads were stuck down on my wheezing chest. Monitoring equipment was attached to fingers and arms. The finally, cables were connected from all those bits to all the machines. Being highly sensitive to touch this was one of the most challenging, but unfortunately necessary, parts of the MET. I imagine this part isn’t fun for patients who aren’t on the autism spectrum either, but I would think it’s a fair bit worse for someone who notices every little tug on each area. Everyone did the right thing too in this MET, and they get a gold medal for it in my mind, every person touching me for a clinical reason or to attach some kind of therapeutic or monitoring equipment told me what they were doing first. Without that kind of fore-warning my instinct would have likely been to push them away (and I am strong when anxious). I’m sure this would have caused upset and difficulty in my interactions with the team as it has done in the past. As for the reassuring back and arm rubs, it is something where at least I have reasoned out in my mind that while it is uncomfortable for me I throw it through my social decoder and tell myself that the people doing it mean well and that is something they would want done for them if they were in the same situation. Short of educating every hospital employee about the potential for a sensory aversion to this kind of touch in people with autism spectrum disorders, I think this is something we spectrumites may simply have to accept as ‘one of those things’.

POINT 6 – People on the autism spectrum often have sensitivities to touch. Many prefer deep muscle touch to light touch.

POINT 7 – If you are a clinical person involved in treating someone with an autism spectrum disorder (and even other conditions such as dementia etc) telling people where you are going to touch, prod, and poke them before actually doing so will likely ease some of their anxiety surrounding your contact. It may also avoid situations of clinical personal being ‘pushed’ away by a patient who doesn’t understand the necessity behind your contact and simply sees it as aversive.

Along with all the extra people, unfamiliarity, confusing communication, unwanted touch and generally feeling unwell, there were the noises of all of the machines. On an individual basis each of them is fairly tolerable, but once you get a symphony of alarms with blood pressure cuffs inflating and nebulisers with oxygen running, you have a veritable mess of sound blaring in your ears that are already struggling to hear what everyone is asking and saying. Having quite the sensory aversion to beeping and mechanical sounds this was possibly the final straw that pushed me almost to complete shutdown during the MET. What was left to do? At least for this MET I had some understanding of autism and what it means for me.

POINT 8 – The sounds of the machines and monitors alone in a medical emergency situation can be stressful for someone with autism. Combined with all the other things involved in a medical emergency response, they can be the final straw.

Finally I caved. I grabbed my notepad and scrawled a desperate message to one of the many nurses telling me to try and relax as much as I could. I explained that I was on the autism spectrum and found it quite difficult to relax in overstimulating situations like a MET with lots of people, noises and chaos. The nurse was totally on the ball and instructed all extra, non-essential parties to leave. We were then left with only 2 people finishing off the monitoring etc while others gave me some much needed space. I was also able to give them some information from my communication folder which helped too. While it was awkward scrawling a message and explaining autism etc it was completely worth it. We were able to make an arrangement with the ICU registrar that any further METs needed that night could be avoided by the nurses paging him directly to come reassess me. In terms of communicating the different needs I have due to being on the autism spectrum it was no problem, I just wish I had outlined those challenges before requiring a MET.

So I hope that perhaps this perspective makes it easier for others with autism who may face a similar situation. Don’t be afraid to let staff know that you have different reactions to things. Consider telling them even when you are well enough to ‘compensate’ to an extent and the difficulties may not be obvious; then when you aren’t able to compensate you won’t need to stress as much about explaining yourself.

To medical staff reading this... Consider the possibility of sensory issues, aversion to chaos, difficulties with social filtering and communication and a general different style of processing when managing a patient on the autism spectrum: And don’t forget to be aware that you may not know a person is when you start treating them, but that doesn’t mean they may not be experiencing those difficulties.

Cheers until next time.



Aspergirl