Despite my constant encounters with emergency services and specialists over the course of my life, I still struggle to manage my health when other people are involved. Today, I want to take a look at some of the issues I experience and the steps I’m taking to help make things easier on myself and others, as well as how the various medical practitioners I meet can help.
When it comes to expressing myself to professionals, I often find that I can’t explain clearly in terms that they understand. They expect answers to be concise or on a scale of one to ten, and I can’t always find the right words or fully understand what a 7 is on the pain scale (what do you mean a 10 is the worst pregnancy pains. Do I look like I’ve ever been pregnant?). There is also the feeling that I have to explain things to them in a way that fits the medical descriptions they expect. This causes anxiety about appointments, I worry that I’m failing to be clear enough, which just exacerbates the issue.
Another issue I encounter is not having things explained to me. This is particularly noticeable when it comes to time frames. I find scans or tests much easier to handle if I understand why they are being done and how long I can expect to wait for the results. It’s also important for me to know if there will be physical contact, so I know what to expect and can prepare for it. I have noticed that I am much more relaxed when staff explain the procedure and associated things. I like to learn and understand what is happening, and it puts me at ease. A good example was yesterday during a heart scan, the technician explained to me why they needed me in a strange position, it opened up my ribs allowing for a clearer image of the heart. Learning this was interesting to me, and it allowed me to understand why there was a strange lady reaching over me and putting jelly on my chest.
So, how am I managing this? With great difficulty if I am honest. It is one of the reasons I do not contact my local GP unless it is important. When it comes to talking to practitioners I have started to make notes of questions I want to ask as well as explanations of how I can be supported (limit interruptions, be clear with the questions and expectations, avoid asking multipart questions etc).
I have also filled out a document called a Healthcare Passport (you can find it here). This is a document that explains my conditions, ways to put me at ease, ways I may react and how to best respond to them (e.g. I can become frustrated if I feel I am not being understood, I may hit things to emphasise a point but do not harm others. Patience, clear information and regular communication help to avoid these situations). It also covers support and steps to take if I am unable to consent to treatment myself due to illness or if I am unable to talk.
When it comes to hospital appointments, I have also found that planning a route to the location in advance helps, as well as discussing additional needs with the person arranging the appointments. They often don’t understand, and they are frequently limited by the systems in place as to how to make accommodations, but it helps me personally to be able to express potential issues and ways I can be supported. In busier areas, a quiet space can be very useful, especially when I am anxious. I do realise that it isn’t always a possibility, especially in older hospitals, but it can be possible to still provide similar support if staff are aware ahead of time.
How can hospitals and medical practitioners help me (and other people in a similar situation)? First and foremost is communication. The way staff speak to me when I first engage with them (especially in person) can set the scene for the rest of the encounter. A disengaged receptionist who only provides the most basic of information can make it difficult to discuss additional needs, which can make the entire visit terrifying. It often makes me feel unwanted and unable to express my needs, not just to the receptionist, but also to others.
Allow for longer sessions. I often need extra time to ask questions, to feel comfortable discussing things, or to go on a tangent while I figure out a way to process information. Be careful not to pressure me or rush the appointment, as it can make me feel unwelcome and make discussing thing more of a challenge.
Allow for cancellations, or last moment rearrangements. I don’t enjoy cancelling appointments. If I feel unprepared or unwell on the day, though, it can make it difficult to attend. From brain fog to physical issues and more, there is a lot to manage, and I can’t schedule my medical needs as well as I can schedule appointments. I realise that it is not always possible for appointments to be rescheduled, especially at short notice, however withdrawing support or treatment (or even the threat of such) due to conditions beyond my control makes me feel like I’m little more than a nuisance.
Support patients where possible. This could be in the forms mentioned above, but could also be in simpler ways. Have a named contract that I can approach with questions or for aid. Knowing who I will be speaking to when making an appointment or when speaking to a GP over the phone can make it much easier to communicate, as it removes the uncertainty that causes many issues. It could be a case of taking time to check in with the patient before the appointment, confirm the details, but also discuss other things that the patient is known to enjoy. It makes the specialist feel more approachable as well as makes the patient feel valued. Allow me to go on a tangent. It may seem frustrating to you, but often the tangent is important to my understanding. It allows me to process what is being discussed in a way that is relevant to me. Telling me I have angina and going on to explain the medical definition isn’t helpful, allowing me to go on a tangent and ask seemingly unrelated questions is. I’m much more likely to retain the information as well as understand it.
Be aware of the patient and their behaviour. This might seem obvious, but it is often overlooked. Autistic people have a number of different coping mechanisms. They aren’t all the same, and some can appear confusing to neurotypical people. I tend to react to pain by making jokes or trying to socialise (trust me, it can confuse the ambulance workers). If I am making jokes about something, allow me to work through it and don’t push me to “take it seriously” or “stop being silly”. While being silly might seem inappropriate, it is a way I manage pain and more complex emotional things. Understand your patient and their needs, communicate with them on a similar level while gently steering the discussion to key facts that you want me to understand is much more effective.
There’s a lot to unpack here, so I won’t carry on for now. The main takeaway is about communication. It may be different for each person with autism, but it is important. From setting the scene, to aiding understanding and helping to remain calm. It may cause minor inconveniences for staff, but overall it makes things a lot easier for everyone involved. Do you have any suggestions about how the system could be improved or things that you find help when interacting with medical professionals? Feel free to leave them in the comments below.
Not Broken 