A&E: Advice for Visiting with a Child Who is Autistic.

Going to A&E can be a daunting experience for any child. It’s generally a place you go when hurt or unwell so they’re not in the best frame of mind anyway, but add to that the sensory aspect, the change in routine, the unknown factors and it can be particularly challenging for those who are Autistic or any form of neurodiversity. We recently visited our A&E department after my eldest fell and landed badly on his arm. I thought I’d share what worked for us and things that I feel may help others.

Be prepared:

Obviously a trip to A&E is rarely planned or scheduled. It may not be easy to get everything in place in a short space of time so the first thing I’ve learnt is that I need to be prepared for future trips.

  1. Have an envelope or small bag already packed with social story or symbols that are generic to the A&E eg: xray, doctor, nurse, body map etc.
  2. Have a one page profile written up to be able to hand to staff. You can find templates for this online or create your own simply highlighting needs, likes/dislikes, level of communication, how to address the child etc. Basically all the important dos and don’ts that will help in the situation.
  3. List of medications to show the staff.

Visuals:

I didn’t have much time to get anything prepared (lesson learnt) so I quickly found some card and just drew a pain chart using smiley faces and basic words. I know that my son has difficulty with ‘scales’ and his version of 1 may be different to someone else’s or he may say 5 because he’s thinking that what he has to say since we’re in a hospital. This gave him something he could point too and language to use when overwhelmed (he generally has very good speech but with new sounds, new people and not knowing what’s going on, his communication is first thing to go out the window).

On the back of the card I wrote a few ‘feeling/pain’ words. This was to help him when asked how the arm felt. Honestly this little chart became the most helpful thing I took.

Sensory Aids:

  1. Ear defenders (were a must for us as it was quite noisy)
  2. Blanket or coat (somewhere to ‘hide away’ if needed)
  3. Fidget toys or distraction aids.

It can be overwhelming in the bright rooms with people crying or moaning, the long wait, people poking and touching you. So taking sensory aids is useful for distractions and blocking out. Some hospitals (depending on how busy they are) have separate waiting rooms or areas if needed. So if you feel the waiting area is too much for your child then make sure to speak to someone and ask for alternatives.

Tell the Staff

When you get to A&E and sign in, make sure to ask the receptionist to add your child’s diagnosis and/or needs to the notes. They had no problem doing this for us and it just helps to give the staff a heads up before meeting your child. I still told each professional anyway just in case but it can help.

It’s never inappropriate to bring it up or to say it over and over. End of the day your child’s needs and/or diagnosis is a big part of them and will have an impact on their visit and possibly even their reason for being there. It’s not a case of trying to ‘label’ your child (after all, they are not a soup can) it’s about ensuring their needs are met and they can have the right support. If your child has complex needs or many factors that may make examination or treatment challenging, this is when the one page profile or hospital passport will come in handy.

Typically I found this ‘My Health Passport‘ template by National Autistic Society after our visit but it is something I’m now going to have ready for any future visits.

Speak up for your child

I know that hospitals want to hear from the child and that our children are individuals in their own right so they should have their say, however for many children they may not have the words or the social skills to use them efficiently. My eldest can talk non-stop when on his terms. When it comes to socio-communication, that’s when he struggles. He’s not great with emotions and how his body feels. After nearly 7 years of him being my world, I have developed the ability to understand him and can ‘translate’ for him. End of the day, I know what my child is trying to say, I know if what he’s saying isn’t what/how he means, I know if he hasn’t fully understood what’s been said or asked of him. So, I butted in. I rephrased the doctors requests. I told the doctor what he meant by things he said. This was when the pain chart I made was most helpful.

I’ll give an example here. When we saw the triage nurse she was examining J’s arm and doing different movements. J was chattering on about something totally random to the situation and not paying any attention. Now, he has a high pain threshold and can blank out pain or discomfort quite well. When we were back in the waiting room I asked him if any of it had hurt or felt weird for him. He said it had hurt and pointed to where the pain had been. I asked why he didn’t say ‘ow’ or tell them that it hurt. His answer…”I didn’t know I had to“.

So when we went to the doctor for examination, I said this to the doctor. When the doctor said she wanted to feel his arm she said to him ‘tell me if it hurts’. J replied with a simple ‘ow’ or ‘no’. Anytime he didn’t react the doctor asked him how it felt. This time we could see the pain was around the elbow and where the bruising was so she sent us for an xray. The original triage nurse had said she wasn’t going to send us for an xray because he was moving it fine. This just goes to show the difference and I do kick myself that I didn’t speak out before we left triage.

X-ray

This was the first time my son had an xray. He knew what an xray was but not how it happened. So, I explained very factually but basically what to expect. I was allowed in the xray room with J but was asked to stand behind the screen when the machine was in use. That was fine as it was only a few feet from my son and he was so focused on the machine and the light that he wasn’t bothered. However, if you know your child will need you to stand with them, then speak to the radiographer as there are protective tabards available. He got a sticker afterwards which sealed it as his favourite part of our visit.

Ipad/Tablets

There were a few children with their tablets. I’m glad we took ours with us as there is a lot of waiting around. The NHS has free wifi in our hospital so we used it as a great distraction and to help with the boredom of waiting. My son is very fidgety and staying still can make his legs ache (he has hypermobility and those chairs aren’t the comfiest). He did end up watching the ipad in all sorts of positions. I told him as long as he stayed near to the chair then it was fine. It was a paediatric waiting room so no one really batted an eyelid.

In terms of charging the ipad, some hospitals will let you plug in a charger, others wont. I think it all depends on who is on and what their policy is. However, if your child needs their tablet for communication or you know they wont accept treatment without it then make sure the staff are aware of this.

Snacks/Drinks

You don’t get meals in A&E and you can be there a long time so snacks are a must. Firstly, it’s important to ask whether your child is allowed to eat/drink as depending on what they are there for sometimes it can interfere with treatments or operations. Not only will snacks help keep hunger at bay but it can be a sensory tool too. For my son, he benefits from crunchy food as its sensory stimulating. So I took crisps and breadsticks. I also took a lollipop from his Halloween stash as they take a while to eat so would keep him distracted.

If there’s a chance your child will be kept in and they have food aversion or sensory issues with food make sure to tell the staff. Obviously covid has changed some policies but some paediatric wards have family kitchens with a microwave available. Otherwise, get someone to bring a stash of food you know your child will eat up for you.

Our visit was a positive one, especially as my son was fine. There was no break in the bone, just lots of bruising so advised to continue using calpol to treat the pain. I have heard that some hospitals may have services such as a play therapist how can come and support your child and others who have a disability service you can access [edit: I have had a reader contact me and say they have one at their local nhs hospital but the hours are limited. Worth asking though if you do end up needed additional support] . I did try and research these but I can’t seem to find any information online so please comment below if you have any experiences or know of any support available for A&E visits.

If anyone’s child does need to stay in hospital for treatment click here for a fantastic post from Steph at Stephs Two Girls.

If you’d like to see more of our family life then come find us on Instagram and Twitter.

Thanks for reading,

Rebecca.

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