Any tips for day surgery with an autistic teenager?

[elliejjtiny]

We had the pre operation appointment last week and it really highlighted how difficult it's going to be on the day.

He doesn't communicate with people he doesn't know very well at all and gets distressed when they try and talk to him. He hates people touching him. He refused to be weighed and measured last week so goodness knows what will happen when they need to take his bp, pulse etc.

He wouldn't ask questions at the appointment so I had to guess what I thought he would need. We've sorted that he can wear his beloved baseball cap during the operation. I forgot to ask about having the cannula taken out earlier than normal. Anything I suggest to him is met with a shrug.

Does anyone have any ideas? Last time he was in hospital it was a complete nightmare. Even when he wasn't properly conscious in resus, he was screaming and thrashing around when the Drs were trying to help him. They don't normally let parents in the room when children are that poorly and being worked on but they let dh stay to try and calm him down.

Would it be worth borrowing/buying a BP monitor and sats probe so he can try them at home first?
What sort of thing usually helps calm him? My dc can get through many things by using earbuds/music. Never had an op though so not sure how that would go.

Maybe too short notice to do it now but worth thinking about for the future.

• desensitisation around the hospital equipment so he knows what to expect
• ask to speak with the hospital LD liaison nurse (if the trust has one), I know you said ASD but they should support
• ask about reasonable adjustments i.e. would it be better to forgo the waiting room, would reducing transitions be better, would staff be better covering uniforms etc
• take some pictures of the environment he will be in ( could make a time line of what to expect)
• use a shot blocker if available for bloods or injections

I fight for this type of thing every day, the more it is asked for the hope is the reasonable adjustments will becomes 'normal'

I'm a paediatric nurse on a surgical ward. We would be guided by you on what to do and what not to do.
If we can't get observations, then it's not the end of the world. We would speak to the anaesthetist and let them know. But we can usually manage the basics.
Wrist bands can be clipped to notes and be put on in theatre.
Weight is a bit more tricky, but can estimate as a last resort. Could you weigh him at home, just incase he won't allow it
In hospital?
Ask for a pre med to calm him down. Cannula can sometimes be removed in recovery, but it depends if it's still needed.
Good luck

My hospital does have a LD liaison team but we find that they are more geared towards adult patients. We are very used to adapting to children's needs. More than on adult wards. To be honest we find them patronising!
Get in touch with the play team, if there is one. And they can arrange for a visit and preparation.

In addition to the LD liaison nurse, are there Play Therapist who could help? They might even be able to email you pictures of equipment if that would help.

If there's still time, I second speaking to the play specialist - ours sent an oxygen mask in the post beforehand so DD could get used to what it would feel like on her face, and she also liaised with the medical staff.

Have you filled out a communication passport for staff to get a quick snapshot of DC's needs? That can be helpful.

Personally, I wouldn't advise having the cannula removed early, especially in a patient who'll thrash about when anxious, as that cannula might be the only way to quickly medicate DS if he's already in a state.

Thank you so much, so many things I haven't thought of. The consultant said about 2 months wait so we have time to organise things. It will be in the day surgery unit in the paediatric bay so it will be I think 8 beds, a desk for the nurses and a small playroom with toys mainly for toddlers. The play specialists are all on the main children's ward, along with all the decent toys, books, tv's etc which they understandably keep for the children in the ward who stay in for longer than a day. He really liked one of the computer games on the main ward 4 years ago. Ds way of "coping" is to stick his head in the sand and pretend it's not happening until it's actually happening and then he will have a meltdown or a shut down. Ds is 16 so I also now have the worry that an 11st teenager having a meltdown is the kind of behaviour that the posters in the waiting rooms say is abuse towards staff and will not be tolerated. Which is fair enough tbh.

@elliejjtiny im not sure if your hospital will have a team, but can you ask if there is a Learning Disability Liaison Team? I worked with ours at my hospital and they are fabulous / a godsend for people with a LD and their families. Does your son have a hospital passport?

My autistic DS was always put in a private room on the children's ward during his teens as it was clear it wouldn't be appropriate to house an essentially adult-sized teen in a bay with tiny screaming toddlers - it wouldn't have been good for anyone involved.

I think it's definitely worth asking if they can arrange a side room or private space to wait in - if you explain there a risk of meltdowns and you don't want to scare the younger children as DS's anxiety in new settings can be unpredictable, then it's really on the hospital to find a workable solution. It's worth reminding staff of his height/size on the phone when you ask, as the person you speak to might be envisaging a 7 year old and not an almost fully-grown adult otherwise!

My older autistic DD had day surgery for the first time in an adult day surgery unit recently, and they expected her to wait for hours in the crowded waiting room before surgery, but it quickly became obvious to staff that it wasn't really working because of her anxiety/inability to stop talking and stressing out all the other patients waiting for their surgeries, so they ended up letting us wait in an empty examination room for the hours before she went to theatre, which made things much easier for her (and for everyone else!).

Does he have selective mutism? (An inability to speak to people he doesn't know ) - if so have a look at the SMiRA website or Facebook page, there are lots of downloadable resources. Example:
https://www.selectivemutism.org.uk/info-advice-for-medical-visits/

I would have thought that at 16 unless he has severe learning disabilities he should have some idea of the necessity for the surgery? So a screaming meltdown is less likely than a total withdrawal or whimpering?

One possibility might be to write down as many questions as you can think of (,will it hurt, how long will I be asleep, will I have to stay in hospital, can I bring my teddy etc etc) on blank playing cards a couple of nights before. The day before, take him the cards to read through - and some extra blank ones - and tell him it's his chance to find out anything worrying him. Tell him you are going to leave the cards with him and pop back after 10-15 min, if any cards are questions he would like to ask, just to put them in this pile, leave all the irrelevant ones here, and feel free to add any extra questions on these blank cards. Then tomorrow you (mum) can ask all those questions for him to ensure he feels as well prepared as possible

I would also tell him it's normal and not at all surprising that he is nervous and worried about the operation, that almost all the children old enough to understand will also be worrying because it's not every day you go to hospital for an operation. That finding out more info will help him feel better.

I would also say that some things are health red lines - they need a weight for anaesthetic, for example. But they don't have to have it done at hospital so if he thinks he might not manage that, let's get some recorded at home as plan B and take them with us.

It's very likely that if it's SM he's not "refusing" to talk or engage, but that he has become unable to do so. Changing the narrative in DS's hearing to ensure that people understand that DS isn't being obstructive on purpose but is just withdrawing because of overwhelm might actually help him feel better, because he will feel less misunderstood.

he sounds like the sort of patient that most paeds surgery teams will be very used to looking after. If you're able to weigh/measure height at home then most anaesthetists will be happy with that. If he has his own games/noise cancelling headphones/music/stuffed toy/something to distract him on an ipad/phone then bring that - it should be possible to have it in the anaesthetic room. If he's more comfortable in his own PJs than a gown, then that normally isn't a problem...ditto for socks/hat etc (they might get mucky though so maybe don't bring his absolute faves!) If there are particular things he really doesn't like then tell the team - it may be possible to think of other ways of doing things (eg. if it's better to start by chatting about him to you, rather than directly to him when they're doing the anaesthetic pre-assessment then that might be less stressful (there are somethings they might have to try to directly ask him/talk to him about, but it perhaps gives him a chance to get used to a person before then). Sedative pre-meds are commonly used in this sort of scenario - definitely worth asking - when it is possible to use them they can be real game changers. If you think that a visit to look around might help then it's often possible to arrange that (we do ours on a weekend when no one else is about so it's much less stimulating). Has he had EMLA cream on before for a cannula or blood test? Sometimes that can trigger a bit of a meltdown because some kids really don't like the sensation of the cream/plaster... may be worth 'practising' with any old hand cream and a clear plaster at home if that's something he'd find useful?

If things do get stressful we do sometimes have to send kids back to the ward/try again another day with a different plan (particularly when they're adult sized and a meltdown can get physical and dangerous), but it's not that common. It's not common to take the cannula out in recovery, but depends a bit on the operation/how easy it'd be to get another one in in a hurry if needed. Hope it goes well.

Autistic anaesthetist. We are very used to it, it's not an issue, we are more than happy to be ignored for an ipad/head phones ear deafeners etc. Even anaesthetised a kid wearing an eye mask and no engagement. You'll come to theatre till he's asleep, providing you can confirm name and dob we won't need anything from him

We need a weight, heights not really essential. If it's within a week or so we are happy to take your own readings. We have scales that are just a chair on the paeds wards so can sit on that oblivious

Discuss a premed with the anaesthetist preop just to allow him to be a bit more relaxed coming down.

In theatre we are happy with just a sats probe, ecg and bp goes on asleep in nearly all kids anyway. I'd live without a ward bp too tbh if otherwise well and no major health conditions. Heart rate and oxygen is a probe or sticky plaster, it can go on for 2mins then remove it. He can put it on himself.

He can hold the mask to go to sleep. Bring an ipad for distraction/tots etc. Can keep hat on until asleep and have it back on in recovery

Cannulas can't come out until back on the ward, severe complications in recovery are rare but if they do happen can be fatal, but we will bandage it up so he can't injure himself with it nor pull it out

Have a read of this that I've just published for tips, can always print and give to his anaesthetist but generally we're a v flexible bunch and it's normally a relatively straight forward experience. Maybe 20% of the kids we anaesthetise have autism so it's not something we are unfamiliar with

https://www.bjaed.org/article/S2058-5349(24)00007-6/fulltext

He has almost certainly got selective mutism although not officially diagnosed. I would never say in front of ds or in real life at all that he won't speak, I always say he can't. But on the thread I needed to explain that he is different to my friend's autistic son who can't speak at all but does communicate in non verbal ways. Ds can physically speak but mostly doesn't. He will occasionally communicate with a shrug or a nod but mostly he will go into shut down if people try and talk to him and then he won't communicate at all.

Thank you everyone. I contacted the learning disability team but they only work with over 18's. I did manage to get a link to the hospital passport though so I will fill that out.

Ds does have the kind of meltdowns when he screams and cries but they are rare because we can usually remove the trigger before it gets to that point. However in hospital they may need to do things to him that are triggering. The last time he did this was earlier this year when the school tried to insist that he did an oral exam for his English gcse.

So if people he doesn't know well says something to him that requires an answer he will start stimming. If the person keeps trying to talk to him then he will go into shutdown. If someone carries on then he will curl up in a ball on the floor and start screaming and crying. If someone tries to touch him, he will shout and push them away. If they carry on repeatedly touching him then he will scream and thrash around, although it very rarely gets to that point and last time was in a medical setting when he was in resus and there was a load of drs and nurses all doing different things to him. Thankfully he doesn't remember this as he wasn't fully conscious but I am worried it will happen again.

Honestly we are v used to it. We only ever have 1 member of staff talk at a time, minimum monitoring, minimal people. I've even frequently induced a child totally buried under their blanket provided they'll take my oxygen piping into their tent with them. We GA autistics a lot more than others (due to their intolerance of thing such as MRI scans, high prevalence of epilepsy cross over etc) so theatres are prob one of the best people to actually manage them

An autistic teenager having a meltdown down, would not be classed as the abusive behaviour that the posters refer to. That is for parents who are just nasty arseholes!

Thank you so much, that is a huge relief. Now I just have to worry about him being ok and not about if he is going to be arrested for attacking someone who puts his cannula in.

He absolutely will not be arrested for something he can't help.