Top tips for hospital - autism

A few years ago I wrote some posts about the time when our autistic girl suddenly ended up in hospital. She had been a little off colour with a slightly high temperature during the week, but we were used to her not taking any medicine (see my post Top Tips for when your child won't take medicine) and fighting off infections herself. She would rarely admit that she wasn't feeling well, probably either because she found it hard to explain or, as had happened from a young age, she didn't seem to recognise feelings of pain or of being unwell.

This particular time though, she had woken up on a Saturday looking slightly 'puffy' in the face. Later on in the day she was sick although she was still telling us she was fine. The swelling seemed to increase during the day though, so I ended up taking her to an out of hours doctor that evening. The doctor checked her pulse, chest and temperature and decided that although he could see nothing immediately wrong (other than the puffiness), it would be better to send us to A&E.

Our girl, puffy face, four years ago during her unexpected stay in hospital

We ended up having a ten day stay in hospital while the doctors tried to determine what was wrong (spoiler, it was Post Streptococcal Glomerulonephritis). In the middle of the stay we were transferred by ambulance to another hospital in central London because of concerns over her heart.

She was just eight years old and it must have been a very scary experience for her - it wasn't much fun for me either, if I'm honest. Although in some ways it feels like a distant memory, at other times there's an underlying fear that it could happen again. So today I've spent some time pulling together some information which could help, and some advice for others.

Be prepared

This really is the key piece of advice from me. Nobody likes to think about the worst happening but being prepared could help your stay to go more smoothly and is definitely worth thinking about now. I wasn't prepared back then, but I know that one simple thing which really would have helped is a Hospital Passport.

There are several versions of these floating round the internet; essentially it's a piece of paper (or document/booklet depending how much vital information you have) explaining some basic facts about your child, introducing them to another person or team. I've written about the passports or profiles I've made about our girl each year for the new teachers at school or for those running outside clubs, but one for hospital would have a slightly different angle.

There's no single way to create one of these or present it; there are no rules. This is information about your child and you can include anything which you think might be helpful. It's worth bearing in mind though that too much text leads people to skim read and important information may be lost.

example of a hospital passport with personal information

I thought it might help to share what kind of information I've put on the passport for our daughter. Start with the obvious, basics, such as name and address, date of birth, NHS or hospital number if you know it, telephone contact numbers and the GP surgery.

If your child is already on any medication or has previous relevant medical history, this would also be important to state near the top. The PDA Society have produced a brilliant document with all sorts of suggestions about what it might be helpful to include over at www.pdasociety.org.uk/resources/pda-related-suggestions-for-healthcare-passports/.

Here are links to some other examples and resources:

www.england.nhs.uk East Kent hospitals

www.royalfree.nhs.uk hospital-passport

www.autism.org.uk/about/health/hospital-passport

www.nhs.uk/conditions/learning-disabilities/going-into-hospital/

Communicate clearly and don't be afraid to speak up

If you're like me, you might often worry that you are going to say the wrong thing. You might be afraid of confrontation or conflict, or anxious that you will upset or anger others. Saying nothing can be worse though. Your child will most likely need you to communicate on their behalf; you know your own child and how much of a conversation they are able to cope with. A doctor may want to ask them questions directly but if they are unable to reply, or if you know that direct questions will frighten them, then do step in and point this out, politely.

Sadly not everyone is lucky enough to have a private room in hospital, but if you're in a shared room do make use of the curtains if you think it is necessary. We were introduced to a brilliant Play Therapist at the Royal Brompton hospital and she produced this sign for us:

sign saying 'stop. only enter my room if really necessary'

This was at the second hospital though. At the first hospital where we didn't have a separate room, we had had over 20 different faces appear at the bedside. Very overwhelming for anyone, let alone a child with high anxiety. If I had known what was going to happen, I would have made sure everyone communicated directly with me before prodding and poking our girl and asking her questions which she couldn't answer. They were all lovely, and all trying to help of course, just rather a lot of them!

Understand hospital processes

While our girl was in hospital, she had to have her bloods taken, urine captured in a bowl for testing, X-rays, ECG, ultrasound and of course the usual blood pressure and temperature checks. She also had to go for a CT scan and I'm sure this must have been the most frightening experience for her. She had to be wheeled down a corridor by someone she didn't know, going to somewhere she'd never been before, and then had to lie on a bed where she was no longer able to hold my hand. Worst of all, she was then injected with some important liquid (contrast dye) which was pretty painful (and as I only found out later, can give you the sensation of having wet yourself).

Having never had to undergo some of these processes myself, I wasn't able to explain them to our daughter. I had no idea what CT stood for either - now I do, it's Computerised Tomography. We found out months later that our brave girl did in fact know what a CT scan was before she was taken there; it was pure luck because she had happened to watch an episode of 'Get Well Soon' in which lovely Dr.Ranj sang about CT scans (slight aside, I've met him and he really is that lovely!):

There must be hundreds of informational videos on YouTube about all types of hospital equipment and processes - Operation Ouch is another favourite here. It helps to look up and decide for yourself what kind of approach might suit your child. Far better that they are introduced to this kind of information at a time when they are relaxed and not scared, if you can. I know that for those with high anxiety, like those who have the PDA profile of autism, it can be a difficult subject to broach, but it could be worth leaving YouTube playing somewhere your child might catch sight of it, or leave some info sheets lying around (but be prepared to answer any questions about why!).

Keep calm

I know that keeping calm at times of stress is easier said than done, but it's worth remembering that your child is likely to pick up on any raised anxiety around them. Give them the basic information that they need to know; don't overload them or worry them about the unknown. Just reassure that the doctors are doing their best to find out the cause of the problem and are trying to ensure it won't happen again.

I hope some of those ideas help you get prepared for what you hope will never happen. Best not to stick your head in the sand about it though!

For more information about PDA, please read the book shown below:

'Understanding Pathological Demand Avoidance Syndrome in children' *

* this is an affiliate link and I may receive a small commission if you click and go on to buy anything. It won't cost you any extra.

(Other PDA books can be found in my

'Books about the Pathological Demand Avoidance profile of autism' review post.)

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.

Twitter: twitter.com/stephstwogirls

YouTube: www.youtube.com/c/stephcurtis

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4 comments:

Martha30 March 2020 at 13:46
FABULOUS advice Steph. I need to get cracking...
The Autism Page30 March 2020 at 18:34
This is so helpful. I really need to get a hospital passport done. The boys are pretty obsessed with Get Well Soon at the moment they will be pretty disappointed when they realise Dr Ranj isn't at every hospital singing you through the process!