Helping autistic people access healthcare – Hospital Bag

So far in my experience, hospitals are really bad environments for people with sensory regulatory issues. The brighter-than-bright fluorescent lighting, the constant flurry of people running around, the constant beeping and loud noises, the smell of antiseptic and…less antiseptic things, the constant prodding and poking. This is before you add in that if you are in the hospital you are likely feeling pretty rubbish because you are ill or needing some sort of treatment, and then they start doing tests and procedures to try and help.

This is before you add in other challenges for autistic people. Your routine changes, and change is challenging (start with the same three letters for a reason XD). You are faced with a bunch of people that you don’t know, but that need you to trust them as they need to treat you. Of those people, they likely don’t have much time so will be rushing you to make decisions quickly, while then disappearing for long times on end not being available when you have made the decision. They don’t know you and what is important to you, and they don’t have the time to learn. The food is different and you have less choice.

There are a lot of reasons why hospitals are really poor places for autistic people. Autistic people have all the same problems as neurotypical people in hospital (where already, hospital can be a bad place), and then more on top of them. Therefore, there are two things that need to happen. The first one is the difficult one, that the health care system needs to adapt and make changes to support autistic people. This is a difficult one to sort out as one individual, and so I am not in a position where I can change this at the moment. However, I know people are working on this and so support them in this and if there is anything I can do then I’d love to help. The second one is the one that we can do something about, thinking about things we can do to prepare ourselves and make hospitals better for us if we ever have to go.

Not Today
Often these environments can leave us feeling like this

In this post we are going to look at something that we can do to help ourselves in hospital through putting together a hospital kit. This is something that you should tailor to yourself, and requires a bit of insight into the challenges you may have. But this can be a really helpful thing for giving you some tools to help you survive the hospital experience.

My approach to this is based on the total pain model. Total pain is a concept regularly used in palliative care, but in reality applies to a whole range of situations. Total pain is the concept that the pain we experience isn’t just physical and that there are a bunch of other components (mental, social and spiritual). So what do these mean when applying them to autistic people?

Total Pain

– Physical – Is the easiest to understand in general. Anything that causes you physical pain. Whether this be the symptoms that take you to hospital, or consequences of any examinations/investigations. I would also include any sensory integration issues in this.

– Mental – Is looking at your mental wellbeing, looking at your thoughts and feelings. In hospital there are a lot of things going on and lots of changes in your routine. This could have an effect on your mental wellbeing and so would cause pain in this. But this also includes getting bad news, missing your people, and anything else specific to you in these scenarios.

– Social – This area is one that we can struggle with. Autistic people can feel pain from this area where they want to interact with others but don’t know exactly how to do it. Autism can effect a person’s way to interact with others. For myself, I have my people who I interact with easily (because I know them and have a strong relationship with them) and then can struggle with people outside of that. If I was to go into hospital I would have more exposure to people that I don’t know, and less exposure to my people and this would cause discomfort.

– Spiritual – People often thing this section refers to religion, which is not necessarily what it is about. In this case, this section is discussing what is important for being you. What gives you meaning in life? For autism I would imagine that pursuing special interests fall into this category. But otherwise this is very specific. Do you love looking after cats? Is running cross country important to you? Is spending time with your loved ones crucial to your feeling content? Spiritual pain is when you don’t meet these needs.

What this thought process allows us to do is see pain a bit more realistically. Pain is not as simple as just physical. Other elements can give you pain. Also, from an understanding of the neuroscience of pain, mental pain can cause physical pain to be worse than it would otherwise be. If this is the case then it is likely that these other factors can make physical pain worse. With autism, autistic people may have different sensitivities to physical pain than others, but just because you feel less physical pain doesn’t mean that there aren’t other sources of pain.

Overall, my aim with this bag is to look at all of these areas of pain and have options available to help with these. The physical pain area will take the majority of the bag, as it is much easier to solve this by yourself. In comparison, the social pain area is difficult to prepare lots for (although I have some suggestions for this).

A lot of things I have in the bag are things I would use on a daily basis anyway, so isn’t made of things I will pack and keep in a wardrobe for if anything happens. But coming up with the list now means that, if I know I am going to hospital, I can prepare it all quickly. In contrast, if I don’t know I’m going to hospital (ex. an emergency), I can then ask my partner if they can get all of these things. I’ll have links to some of the specific items I use at the end.

So, with all of that out of the way – The overview of what I would use for myself is this:

  • Practical
    • A bag
    • A folder containing
      • My hospital passport (and copies)
      • Any important hospital letters
      • A list of medication
      • A list of all the phone numbers of anyone you may want to contact (also social)
  • Physical
    • Two pairs of pyjamas
    • A weighted blanket
    • Earplugs
    • Noise cancelling headphones – with a cable for connecting them to hospital TVs
    • An eyemask
    • Vaseline (specific scent to suit my wishes)
    • Snacks
    • Chewable necklace
    • My water bottle
  • Mental
    • A notepad and pen
    • Emotion cards
    • Phone apps
  • Social
    • Phone charger
    • My phone
    • My iPad
  • Spiritual
    • Drawing supplies
    • Handheld gaming console
    • Books

So let’s deconstruct this a bit.

Practical

Practical.png

This one is reasonably self-explanatory. If you are making a bag to go to hospital, you need a bag. Given what I want in my bag, it needs to be a pretty big bag. It’s up to you what you want to use. I would probably use an old hiking bag that I have, as it has a lot of space and it means I only need to fit everything in one bag when I’m leaving hospital.

The second part of this is your hospital pack. I’ll go through things that I would make to go in a hospital pack more at another time, but the essential documents I would suggest are:

  • Your hospital passport (see the last post in order to learn about this)
  • Copies of (always bring copies rather than originals) any important hospital letters – By this there are a few categories of letters I would keep around:
    • Category A – Any letters that confirm a diagnosis (ex. Autism diagnosis letter).
    • Category B – Latest letters from a specialist leading up to this admission (ex. If you have come in for elective surgery, if you are currently receiving specialist support from a doctor, such as for people with Ehlers-Danlos syndrome).
    • Category C – Any appointments you have scheduled in the future (including blood tests, scans, ect.)
  • A list of medication – You should have a basic list in your hospital passport. This one is a little more detailed. What I would like to see in a medication list is: What drug, how long you’ve been on it, what dose, how you take it, how many times a day you take it, any effects (both positive and negative) that you have noticed from it. This gives a lot of information and allows you to have something to reflect on when you feel that a medication is changing something. If you know what is different from before then you can discuss it more clearly. Make sure to include: any inhalers, any supplements/vitamins, any creams, any eyedrops/nasal sprays, herbal remedies ect. Your doctor wants to know about all of these.
  • A list of phone numbers – This one is also for social. While (if you are using a mobile phone effectively) you should have a list of all of the phone numbers in your address book, sometimes technology fails. Therefore, it is good to have a hard copy as well as an electronic one. Being in contact with the people important to you is important. If you have details of any specialists that you work with, then that would be great (but these may be on letters anyway).

Physical

Physical

Like a lot of this, making this bag is about having insight into how you function best: knowing your sensory profile and what you need to feel better when things get worse.

For me, I’ve included two pairs of pyjamas. Hospital gowns in general are uncomfortable, therefore, I would want my own pyjamas to wear on a daily basis. If you have two, then you have a pair incase something goes wrong or if you need to wash one. You can pick ones to suit your needs for texture and can make any customisation (ex. Removing labels) ahead of time. It would be great to pick something that you can remove easily incase anyone needs to do an examination on you, but that only takes up a small amount of time in the day so prioritise your comfort.

I am oversensitive to visual, auditory, tactile, olfactory and gustatory (smell and taste) senses – so I use a few things to help me with those. I am always wearing my tinted glasses, so I haven’t included them in the kit. I keep earplugs on me all the time and have my noise cancelling headphones close by. I love my earplugs for emergencies, but I find that my hearing adjusts while I am wearing them and so when I remove them I get a massive backlash of how loud everything is. In comparison my noise cancelling headphones adapt to the environment and I can listen to music through them, meaning I don’t get as bad a backlash of sound afterwards. I would suggest both as in some parts of the hospital I wouldn’t be able to use my noise cancelling headphones, but the earplugs would be ok.

I’d keep a chewable necklace on me. This one I have discovered lately (thanks to recommendation in a video by The Aspie World), and has been really helpful. When I am anxious or in pain somehow, I want to feel more pressure in some way. How I used to do this was by biting my fingers, which would provide relief but isn’t the most healthy behaviour and led to damage to my fingers. Now I use a chewable necklace, which works really well for me. Instead of self-harm, I just bite that and get the same relief. This has really changed how I approach stressful situations and I am really glad for it.

I recommend an eyemask. This is helpful if you want to block out the fluorescent lights for a bit. However, you need to balance this against tolerating something being against your face. Therefore, I suggest experimenting with a load of different items to find something that works for you. I’ve got something that I can tolerate for a little bit for emergencies. Next, I would pack some snacks (as hospital food can be quite varied in quality and I like to have certain textures to relax me) and a scented vaseline. This one is a nifty trick for helping with smells. If you are finding a smell problematic, you can put a small amount of vaseline under each nostril and then you can block out a bit of the smell by smelling this instead. Don’t use too much, as this can make your skin oily, but it can be helpful for if you are having some problems with the smells.

I also use my water bottle. This is a Camelbak bottle, which has a specific mouthpiece to it that provides a bit more sensory feedback by making you put more effort in to drink water (like using a straw). This I find helpful for giving me a bit more regulation, and so I mostly just drink from this. It also allows me to track the amount of water I’m drinking, which is helpful in hospitals while monitoring input/output.

Finally, I’m undersensitive to proprioception, so I’d bring my weighted blanket. It is big, but it is essential. There are alternatives to helping with proprioception, such as body armour (which is less helpful in hospital if you need to remove clothing for examinations) and lap pads, but I know that my weighted blanket is the most important thing for me.

The physical section should be adapted to your specific needs. In the future I’ll provide a tool to help with understanding your sensory sensitivities and actions you can take to help with this.

Mental

Mental

This one is a bit trickier. I’ve put three things into this area: a notepad/pen (helpful for lots of reasons), emotion cards and phone apps.

The notepad is helpful for recording what others are saying, but also for recording what you are thinking/feeling and giving you a bit of way to vent about that. The other part important for this is talking to other people, either people you know, or if you can manage it, other people in the hospital. The hospital may have volunteers who will be available to talk about anything, who can help. For me, I would want to talk to the people I know if I was in this situation and so having access to my phone or to the person physically is important.

The emotion cards is something I started using a few months back, which has really helped. Over time I have found that I am very sensitive to emotion (from others and myself) but I may not understand exactly what I am feeling. This can leave me feeling really agitated without knowing why. At this point I was then introduced to these emotion cards and was able to deconstruct things a bit. I have a specific type I use for this, but I don’t use them the way you are meant to. I use them to find what the word is for the emotion and to appreciate the things I am feeling. Knowing that helps me to feel a bit better. This can then be adapted to situations (ex. Decision making by using them to determine words for what I would feel in different scenarios). Overall, I have found these really helpful when dealing with complex scenarios.

Finally, apps for your mobile devices. This is one that I am not utilising as well as of late. However, apps to help with mindfulness can be really helpful. Other apps can help to track your mental state, which can be helpful for reporting to physicians. But mostly this is about experimenting and finding what works for you.

This area is an important one to consider but requires a lot more internal preparation rather than specific tools (infact, getting lots of tools can distract you from thinking through what’s happening in your head defeating the ultimate point). Find strategies that work for you. If you need help coming up with strategies, see if you can find a problem solving counsellor to work with to determine this (I did this previously and found it really helpful).

Social

Social

This one is about finding ways to keep in contact with the people important to you. While I would like for important people (ex. My partner, my family) to be around most of the time, they have their own lives and I wouldn’t want them to spend all of their free time with me if I was in hospital. Also, as some of them are autistic, I wouldn’t want them to be exposed to the environment all the time. Therefore, for me it’s about utilising social media effectively.

Using messenger services is helpful for keeping in contact with people you already know. Texting, instant messaging, all of these methods are super. With FaceTime this can be even better if seeing the person is important to you. Hospitals are becoming better (in general) for IT access and so there may be wifi to help you use your technology without running down your data. However, you should look into your local hospital and whether they are able to help with this as not all are.

Social media can be really important while in hospital. The challenge with being autistic is that other people there will likely not understand exactly how painful it can be. This is where the strength of the #actuallyautistic community can come into play. Chances are, what you are experiencing is not new. Other people will have felt it and understand. The online autistic community are generally really nice and will be happy to support you in these situations. So keeping links through social media in this way can be really helpful.

Therefore, for me, the important items are having lots of chargers for my devices and having my phone and an iPad. This allows me to keep in contact and do everything I want. Hospitals should have a way to securely store valuables if you are going to leave the area for a while and so I would advise using these in this scenario.

Spiritual

Spiritual

Finally, this is about what is important for you to function as you. The social elements are taken care of already. For me, playing computer games is really important for distracting me from everything that is going on that I don’t like. Therefore, having access to a games console is helpful. Given it’s handheld nature, I would probably bring the Nintendo Switch, but it’s about what works for you if this applies to you.

The other thing is drawing. Lately, I have been doing a lot of Darni drawings, and this has been really helpful for expressing myself. Therefore, I would want to have all of my equipment for doing this.

Otherwise, I would want to have a good book around. Likely, I would just use my iPad and a kindle programme for this, but it might be helpful to have a hard copy for if I don’t want to look at a screen.

However, as said, this is about what matters to you. You need to think about what you need to feel reasonably ok. What would you feel awful if you were not able to do it for a period of time? If you can find an answer to that, it is worth finding a form of this that you can take with you.

In conclusion, making a hospital pack is about putting together what is important to help you through the experience. While we can’t prevent a lot of the things that are going to be nasty about that environment, we can have ways to nullifying it or making it a bit more tolerable.

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